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Friday, December 28, 2007 11:31 PM EST
--Taisen Deshimaru
Hi Everyone,
I felt that I couldn't let today pass by without an acknowledgment of the significance of it. Today marks ten long years since I was diagnosed with Lyme disease. I've known the day was coming for a while and have written a bit here and there about it (not really on here) and to be quite honest, today doesn't seem different from any other day in most ways. I haven't really let myself sit and think too much about it, about the significance of having had this diagnosis for a decade (I would say having been sick for a decade, but I've been sick longer than that) or about what these past 10 years have been like. But even when I do think about it, it's not as hard to think about as I could imagine it being. And I think a large part of that is because I'm actually doing WELL now, and living a life that is in some ways more "normal" than I thought I'd be able to manage. Yes, I still struggle most days, I still have constant reminders that I'm sick, and if I let myself go for very long without treatment of various kinds (oral meds, supplements, IV antibiotics, IV hydration) I get sicker but the fact that with the help of everything I'm taking, all the treatments I'm on and have been on, I'm managing to lead this life!
There have been many difficult times in the past 10 years. There are many doctors I'm angry with for not doing right by me, for not treating me as I should have been treated, and I think it's because of some of them that I am still sick and have had to deal with everything I've had to deal with, but despite all that I'm still here and I'm at a point in my life when I'm really trying to make plans for the FUTURE! For those of you dealing with chronic illnesses, and especially Lyme, you can relate to how amazing it is to be planning more than a few days in advance. I'm trying to think of what I want to do in the fall, if I want to stay in the area or move up to Maine or do something completely different. I'm trying to plan things without my first question being, "What will I do for doctors and treatment?" Yes, that is still a big question but it's not the first one I ask myself because...who knows what things will be like then? Who knows how often I'll need to be seeing my doctors? Who knows what the future will bring? But while I'm doing well, I want to plan to do as much as I can in case...I won't stay this well forever.
So, in reflecting back on the past 10 years, a lot has happened. I've been through more than I could have imagined lay ahead for me back then. I have learned so much about the medical world, about hope, about so many conditions and illnesses, and I have met some amazing people. There have been blessings in the midst of all the suffering so in some ways I am grateful for what the past ten years have given me. And I know I would not be the same person without having gone through everything I've gone through, which often leads me to wonder who I'd be if I hadn't gotten sick...but that's a question for another time.
So now I will head to bed but I'm sure I'll be thinking (and writing) more about all this in the coming days and weeks. And I'll do a more "normal" update soon. For now I'll leave you with a few pictures from last week's snowfall in Boston. I took them at Faneuil Hall when I went there to do a little shopping and to get out.
I hope you all had a wonderful Christmas if you celebrate it and I wish you all a very happy new year if I don't update before then!
Saturday, December 22, 2007 9:30 AM EST
Earth stood hard as iron, water like a stone;
Snow had fallen, snow on snow, snow on snow on snow,
In the bleak midwinter, long ago.
Hi Everyone,
Well, after a very stressful and frustrating afternoon on Thursday (it was largely stressful and frustrating because of the enormous amount of SNOW we have in the Boston area) I made it to my aunt and uncle's house around 9pm. I'm not even going to go into details of the frustrations but it included two calls to AAA, the second of which had to be cancelled because after an hour of waiting they said it was going to be 3-4 more hours! Thankfully I was able to manage without them but I was exhausted by the time I got to CT. Oh, and the problems with my car made me miss my appointment with Dr. H (PCP) and I can't get in to see her for another month (although if I work things out to leave work a little early I could see her in 2 weeks which I think I'll try to do). But I made it to see Dr. B (Lyme doctor) yesterday and the appointment went well. He's thrilled at how well I'm doing and how MUCH I'm able to do now and it's just so great to be able to go to an appointment and not have a long list of things to talk about (although I did still have a long list of things, it was just more little things). So we're mostly keeping things the same for now but we're changing around how I'm doing the Flagyl since this month it seems to be a bit rougher than usual. I'm going to do 3 days a week every two weeks instead of a full week once a month so hopefully that will help things. And since I found out that my new prescription plan supposedly covers IV Zofran he wrote me a script for that and I'm really hoping that will prove more helpful than the oral form, which is still helpful it's just always a bit iffy as to how fast my stomach will take care of the tablet and get it into my system and sometimes I need fast relief of nausea. And we're also changing my B-12 - I was doing it as a shot every three days but now it's just going to get added to my other IV vitamins that I do everyday. Other than that things are good and he's fine with me only seeing him every 2 months and seeing Dr. H more frequently in between. So I was able to make my next 2 appointments for the Friday at the end of my school vacations which is perfect! And then by the time I go back again I'll be done with work for the school year. And as I was checking out the infusion nurse who has known me since I started seeing Dr. B more than 3 years ago came in and asked how I was doing and was so happy to hear all that I've been able to do and how (relatively) well I'm doing! She knows how long a road I've been on and how much I've struggled so she knows how great all of this is.
Health-wise I'm worn out and tired and having headaches and more nausea but nothing too bad. Yesterday wasn't my best day as far as how I was feeling and my aunt had commented on my eyes not looking their best (that's how she and some other people can tell how I'm doing - by how sparkly my eyes are and how dark the circles under my eyes are) but considering how much I'm doing and the stress of the day before it was understandable that I wasn't at my absolute best yesterday. So I'm just trying to take it easy, got to bed pretty early and slept like a log for more than 9 hours (I'm really at my best if I get 10 hours sleep but I woke up when I woke up today and just decided to get up rather than try to force myself to sleep more). This afternoon I'm going out to WholeFoods with my aunt and it will be nice to spend the afternoon with her. And then tomorrow morning very early I head home for church (I'm singing with the intergenerational choir on a few Christmas carols) and then back up to my apartment at some point to pick up some things and possibly spend the night and then back home on Monday for a few days. Hopefully this upcoming week will be restful and I'll be able to relax a lot and just hang out.
Thank you so much for stopping by to see me. Please take a minute to sign my guestbook so I know you were here and I hope you all are having a wonderful weekend!
Wednesday, December 19, 2007 10:09 PM EST
--Muppet Family Christmas
Hi Everyone,
Sorry for the lapse in updates - it's been a bit of a wild and crazy past week and a half with way too much running around but I have survived it all and I am now officially ON VACATION! Yep, today was the last day of work until next year and I am so happy to have almost two weeks ahead of me with nothing I have to get up for (other than waking up to hook up IVs), no big responsibilities, and just a lot of time to rest, relax, and catch up on whatever I need to catch up on. And I have some plans to travel - I'm heading to CT to my aunt and uncle's tomorrow and then on to NY to see Dr. B (Lyme doctor) on Friday followed by a few more days in CT, then home for Christmas, and back to CT (a different part) to spend New Year's with a friend. Thinking about it now it seems like a lot of traveling but the fact that all of these places offer lots of time for resting and really just taking it easy I think it will be fine and fun to be going different places. But let me backtrack to give an update since I last posted one.
I made it through the weekend of of performances of my advanced theater class and the kids did a good job with the production. We had to cancel our final dress rehearsal last Thursday because a big and very messy snowstorm hit that afternoon and there was no way I would make it down in time for the rehearsal but the kids still did a good job. After the last performance the director of the art center (I don't like to call her my boss anymore but that's essentially what she is for my theater teaching job) and I talked about the plans for the spring session which will begin towards the end of January and run until mid-May. And it's looking like we're probably going to do a musical theater production in addition to my three classes which won't start until mid-March and run until sometime in June. I'd love to be involved in the musical theater production as the director (someone else would be in charge of the music aspect of it) but we'll have to wait and see if it will work out with my schedule and not have me running around more than I already am! We got hit with another snowstorm on Sunday so I stayed over at home and came back up on Monday morning only to find that I couldn't get into my driveway! So I went straight to work and after work came home and shovelled myself into my parking spot. Since then I haven't driven anywhere but some of the snow has melted so I should be able to get out relatively easily tomorrow when I head to see Dr. H in the afternoon and then to CT. I've been doing quite a bit of walking around lately and I have to say I'm realizing that it's something I really enjoy. I love walking to and from work and yesterday and today I walked to the post office and then around a bit. Today after mailing things off at the post office and dropping off my labs in the fed-ex box I started walking towards the Starbucks down the street and just kept walking, eventually deciding I would try to walk to the WholeFoods down the street but not knowing exactly how far (in miles) away it is. Well, I was determined to make it there and I made it, did a little shopping (pretty much all fruits and veggies I needed to pick up), and walked back with a quick stop at the Starbucks I was headed for before. When I got home I looked up the distance I walked and it was somewhere around 2.5 miles roundtrip this evening. When added to the walk to and from work I walked about 4 miles today! This is pretty impressive for me since often it's hard for me to walk very far at all before getting too tired or feeling dizzy. I think one thing that's helping me walk is actually my snow boots - since they go up to the middle of my calf they give my ankle extra support which really helps my whole leg to stay stronger and not get tired out as quickly. So it's an interesting discovery. And even with all the ice and snow that's all over the sidewalks I'm really enjoying just wandering around and exploring the area, seeing how far I can walk, etc. I see a lot of walks in my future! And today was the last day of school which meant one of those often overlooked perks of being a teacher...presents from most of the kids. I came home (walking, mind you) with a big bag of presents ranging from giftcards to a set of Christmas plates to homemade (and storebought) edible goodies. It's interesting that I didn't even think about the kids getting their teachers presents until yesterday when a few handed their presents out. It's certainly sweet of the kids and most of the presents are really great!
Health-wise things are okay. I still seem to be fighting off this cold that's been lingering around for quite a while but hasn't been too bad thankfully. There has been a stomach bug (or maybe more than one) going around and hitting a number of the kids at school as well as my younger sister last weekend but so far I have avoided it (knock on wood) although my stomach has been a bit off the past few days. I've been having a lot of tingling and numbness in areas of my back and scalp which is annoying but hopefully just because I'm overtired and need to take it easy and I seem to be having more headaches than usual but again hopefully that's just because I need to take it easy a bit more. My labs last week are a little unreliable because I did them on Thursday (the day of the big snow storm) and fed-ex apparently didn't manage to get them to the lab until Saturday so they sat for an extra day but I did labs again today so I'll see what they look like this week and judge how accurate last week's look. But things were more off than usual anyway - low red cells (although just barely low), low hemoglobin, a significant drop in hematocrit and white cells, and a continuation of the drop in my alkaline phosphatase. My AST was also very high but I think that wasn't accurate because of the delay in the blood being processed since it's not usually high but I'll see what it looks like this week. This is also my week of IV Flagyl for the month (a little later than usual because of how the shipments fell) which is taking its toll and I'm definitely noticing more nausea with it than usual but it's managable.
Okay, well I'm going to curl up and watch a little TV until my evening Flagyl infusion is done and then I'm going to head to bed and I'm looking forward to not having to get up and be at work in the morning! I do have plans for tomorrow - I'm hoping to take myself out to breakfast at the diner down the street and then head downtown into Boston to finish up my Christmas shopping (hopefully) and possibly take my car in for an oil change if I can manage it (if not, I'll do that on Friday morning at my aunt and uncle's), and then to Dr. H's for an appointment in the afternoon and off to CT! And of course I have to pack sometime in there, too. I'm planning on coming back up here to my apartment before heading home for Christmas so I can limit my packing essentials, but I may end up bringing laundry to do at my aunt and uncle's since it doesn't look like I'll be getting it done here before I leave. I'll leave you with some pictures of the snow (and ice - hence the quote at the beginning of this update). Keep in mind that these pictures were taken yesterday, almost a week after the first big storm hit:
The park near the preschool - it looks so pretty with all the bright snow!
Looking up the street towards the preschool.
Icy sidewalk
Anyway, thanks so much for stopping by to see me and I hope you're all having a great week!
Sunday, December 9, 2007 2:08 PM EST
Listen to the DON'TS.
Listen to the SHOULDN'TS
The IMPOSSIBLES, the WON'TS.
Listen to the NEVER HAVES,
Then listen close to me -
Anything can happen, child,
ANYTHING can be."
--Shel Silverstein
Hi Everyone,
I have survived the first weekend of theater productions - my intermediate theater class's production of Ebony Scrooge: A Modern Christmas Carol but it didn't all go as smoothly as I'd hoped, not because of the kids but because of the stupid snow storm that hit on Friday. I was at work a little late cleaning toys and then had a quick(ish) appointment and left from my apartment to drive down at 4:00 for what is usually an hour drive, getting me there at 5:00 and giving me an hour to get things ready before the kids arrived at 6:00. But it started snowing around 3:30 - not heavy snow but apparently people are not comfortable driving in the snow yet since it's early in the snow season so the traffic (which is usually a little worse than usual at that time on a Friday anyway) was going about 35mph on the highway! So what should have been an hour drive (maybe a little more given the traffic) and get me to the art center in time to prepare things, pick up a few things I needed to grab at the store for props, and be there when the kids go there turned into a two and a half hour drive! A little before 6:00 (when the kids were due to arrive at the art center) when it was obvious that I was going to be late, I made some calls and my boss's husband ended up going over to unlock the door for the kids and when I got there at 6:30pm the parents had stepped in to get the kids in their costumes and were running scenes with them. I cannot say enough about how grateful I was that the parents came through and did all that they did, I don't know what would have happened if they hadn't been so great. So I get there and the kids immediately descend upon me asking me questions about where things are and what they need to do and all I could say was, "Just give me a minute. Let me take off my coat, put down my bags, go to the bathroom and then we'll talk!" Given the difficulties of getting there and the chaos that it caused, the kids did a wonderful job. I was very proud of how they were able to pull it together and do what needed to be done and there were of course some mess-ups but nothing tragic or even that noticible. Of course I was flustered and stressed backstage and just worried about things but since I was more flustered and things had gotten so chaotic, I wasn't expecting them to pull it off as well as they did so I was even happier with the product than I probably would have been otherwise. And they did an even better job at their second performance last night. Now that show is over which is always bitter-sweet but I can't relax yet, still one more week of rehearsals and then the production of my advanced class, Beauty IS a Beast. So I'm off in just a minute (as soon as I finish this) to go run around like crazy getting the last props and set pieces and costume pieces for that show and then going over to the art center to paint some of the set pieces and props. And then it's back up to my apartment to (hopefully) get some rest to recover from the weekend and plow through the upcoming week with work, rehearsals on Tuesday and Thursday, and performances on Friday and Saturday. This class I'm a little more worried about than I was with the intermediate class because we have yet to make it through the whole play in one rehearsal. But I have confidence that they'll pull it together because, well, they always do in the end! I was so flustered and the weekend went by so fast that I neglected to get a picture of the whole cast of Ebony Scrooge but hopefully I can get some pictures from the parents at some point and maybe even a copy of the play from someone who recoreded it (not sure right now who recorded it but I know there was at least one person taping).
Health-wise I'm holding up alright but definitely feeling the affects of doing so much. Right now all I want to do is lie down and sleep for the rest of the day but I can't because there's too much to do and I have no other time to do it (well, pretty much no other time) so I'll push through and do what I need to do and crash when it's all over. My labs last week looked good - red cells and hemoglobin have gone up a little which is good since they were hovering right around the bottom end of normal and while my alkaline phosphatase has dropped a little (steadily dropping over the past month) it's still in the normal range so I'll take that. Unfortunately I seem to be in the beginning stages of another cold - number 3 for the year - and I'm not at all happy about it but it's better than getting the stomach bug that's going around (*knock on wood*). I woke up this morning with that tell-tale sore throat which is always my first sign of a cold. The frustrating thing is that this is happening despite being on more things to prevent me from getting sick so often! But now that I'm getting sick, I'll take more of the things Dr. H (PCP) gave to me until it runs its course and hopefully it won't prevent me from enjoying my Christmas break. I really hope I don't keep getting a cold once a month (which seems to be my schedule so far - one at the end of Sept., one at the end of Oct. going into Nov., and now one at the beginning of Dec.) because each one is a big blow to my body and knocks me out much more than I expect them to. And perhaps this is all an indication that I need to be doing less and resting more but it's so hard to get myself to stop and do what I know I need to do for myself because I have so many things to do for all the various activities and jobs in my life! And speaking of that, the time is ticking by and I need to go run errands (and perhaps get a little Christmas shopping done, too, although I have a feeling a lot of that is going to be done online or at the last minute once I'm done with work).
Thanks so much for stopping by to see me and I hope you're all having a great weekend! I'm doing my best to keep updated on everyone but I'm horrible lately at signing guestbooks but I promise when I have my break I'll try to catch up more! And if I owe you an e-mail, I'll do my best to write back soon. Oh, and for those of you who have commented on the song playing on here, it's my brother, Patrick, and he doesn't currently have a website or a CD or anything but he is hoping to get something up and running soon, especially since everyone seems to like this song so much! I want him to record a Christmas song for me to put up next but we'll see if he manages that soon.
Friday, December 7, 2007 6:46 AM EST
--Yehudi Menuhin
Hi Everyone,
Yes, it's before 7am and I'm doing a (quick) update. I don't know why, I just felt like writing something. I'm exhausted and just doing too much this week but I have to push through this week and push through next week and then I can crash, and I'm sure I'll crash hard. I'm at the point in my theater classes where I am far too stressed out and yell so much more than I'd like to (at the kids mostly for not knowing their lines or not paying attention to what they're supposed to be doing) and it's the time when I always wonder, "Why am I doing this again?" But tonight is the first performance of the intermediate class who is doing a modern version of A Christmas Carol and after the performance, no matter how it goes, I'm sure I'll breathe a sigh of relief.
Health-wise I'm dealing with quite a few headaches this week (some probably stress-related but most seem to be migraines) and various other issues from being worn out. I drew labs yesterday so I should know what those look like today when I go "home".
Well, I have to pack up most of what I'm bringing "home" this weekend and get myself dressed and out the door in the next half hour. Yay for Friday! Boo for one of my busiest weekends of the year. Oh well, at least I can sleep in tomorrow! Thanks so much for stopping by and I hope you've all had a great week!
Monday, December 3, 2007 9:17 PM EST
But the snow still lightly settles on the trees
And a mess is still a moment I can seize until I know
That all will be well
Even though sometimes this is hard to tell
And the fight is just as frustrating as hell
All will be well"
--The Gabe Dixon Band
Hi Everyone,
Sorry for the lack of updates. I have meant to write something a number of times but it just never happened. How in the world is it already December? What happened to all the time? My Thanksgiving break was nice. I was at my aunt and uncle's until Sunday morning and had a nice few days of rest and relaxation there in their cozy house. I spent the day after Thanksgiving in my pajamas just sitting around reading which was so nice. I'm realizing more over time how much I enjoy reading and I love that time when I don't have to worry about other things and can just get absorbed in a book (and I am so grateful for those times when my brain and eyes cooperate to allow me to read and follow what I'm reading). The past week was okay but it seemed very hectic and long. I had so much to do, there is so much to get done for my theater classes as we approach their performances, and last week I was in charge of the projects at the preschool which is always a little more stressful than having the other jobs. I saw Dr. H (PCP) last Monday and had a good visit. We're mainly trying to keep me as healthy as possible through the winter and cold and flu season but we're really not changing anything right now. I got the script for the test strips for my glucose meter and I've been using that which is interesting. So far it hasn't proven to be all that helpful in the sense of it showing that things are off when I feel like they are but I guess it helps in the sense of helping me to rule out what isn't causing symptoms at various times. One thing I'm realizing is that I'm having more Dysautonomia symptoms than I think I realized because I was attributing some of them to hypoglycemia but they don't seem to be from that. So I'll run some extra fluids when I feel I need them and try harder than usual to get enough sleep (which I think is a big issue for me right now but there's just so much to do!). Dr. H is also taking over the orders for my IV meds (doxy and hydration, she was already the one ordering the amino acids) which will make things easier for me. And I'm trying to get things set up with my new insurance mail-order prescription plan to get my 3-months worth of the meds I'm on long-term. I've also just done some checking in to the prescription coverage under my new insurance (they have this cool thing online where you can check to see how much you pay for a given med and whether or not insurance covers it) and it seems that they cover a form of IV zofran for the same copay as oral zofran so I will be asking Dr. H (or Dr. B) about possibly trying that to see if it might help more than oral zofran given the fact that I never know how fast my meds will break down and be absorbed given my slow gut. Nothing much else to report about that visit.
In other health news, my labs were okay last week but my hemoglobin and red cells seemed to be on the downward trend so we'll see what they look like this week. I'm feeling worn out and run down with more fatigue and headaches and some more pain tonight than usual but I'm handling it alright. I was really happy this morning to get a call from one of the preschool directors letting me know that because of the snow there was a 2-hour delay for the public schools so therefore we had a 2-hour delay! It was so nice to get to just stay in bed for a while longer, have some real breakfast of yummy oatmeal (usually I don't bother with much in the way of "real" food in the morning because my stomach doesn't have a chance to get prepared for and adequately handle food before I have to leave for work), watch a little TV, and just relax. I wish we started at 10am every morning! I guess I'll have a new appreciation for snow days this year as a teacher and perhaps love it even more than when I was a student. It's possible we'll get more snow tonight but I'm not getting my hopes up for another delay tomorrow.
Let's see...in other news I sang at my mom's church yesterday (Sunday) which was nice and I was still able to scoot over to my church for about half of the service (my mom's church services are at 9:30am and mine start at 10:30am) and then I had an extra rehearsal for my intermediate theater class in the afternoon so yesterday was quite the long day. My theater classes are drawing to a close with my intermediate class's performances coming up this weekend and my advanced class's performances next weekend (and my little class's performance on Thursday afternoon during their last class) so I am running around like crazy trying to gather together all the props, costumes, and set pieces that I'll need for them and trying not to stress out too much about things (like the kids knowing (or rather not knowing) their lines). The rest of my week looks pretty crazy with work (of course), theater classes on Tuesday and Thursday (dress rehearsals) and performances on Friday and Saturday nights, and then a scheduled crash on Sunday before gearing up for production week for my older class. But I'm so close to my winter break (17 days and counting down!) and then I'll have almost 2 weeks to just crash, rest, read, do all the things I haven't had time for. I'm hoping to go visit a friend for a little while between Christmas and New Year's (and probably staying there until New Year's Day). And that's how things are looking!
I'm really tired (even with a short day at work - only 5 hours with the kids versus 7) so I'm going to get ready for bed and curl up and watch some TV until my amino acid infusion is done (which should be soon). I'll try to update again either later this week or this weekend. Thanks so much for stopping by to see me! I hope you're all having a good week so far!
Thursday, November 22, 2007 8:56 AM EST "I awoke this morning with devout thanksgiving for my friends, the old and new."
Thursday, November 15, 2007 10:50 PM EST
--Ralph Waldo Emerson
"In ordinary life we hardly realize that we receive a great deal more than we give, and that it is only with gratitude that life becomes rich."
--Dietrich Bonhoeffer
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful."
--Buddha
"Reflect on your present blessings, of which every man has many; not on your past misfortunes of which all men have some."
--Charles Dickens
"Some people grumble because roses have thorns; I am thankful that the thorns have roses."
--Alphonse Karr
"Can you see the holiness in those things you take for granted--a paved road or a washing machine? If you concentrate on finding what is good in every situation, you will discover that your life will suddenly be filled with gratitude, a feeling that nurtures the soul."
--Rabbi Harold Kushner
"I have discovered that when we least care to admit it, we feel more confused than thankful, more caught than called, more worried than gracious. In humble moments when we can no longer gloss over the roughness of life, gratitude has a way of pushing out the real soreness of feeling cheated or inadequate to the rugged realities of the world. Gratitude seemed to be a handy response to dodge the tough things for which there are no simple or comforting answers."
--Patrick J. Malone, S.J.
"No longer forward nor behind
I look in hope or fear;
But, grateful, take the good I find,
The best of now and here."
--John Greenleaf Whittier
Hi Everyone,
Okay, enough with the quotes I guess. I just went searching for all the meaningful quotes on gratitude or thanksgiving that I could find and wanted to share some of them with you. This year I feel I have much to be thankful for. I have sort of begun a new life this year - a new job, moving off on my own, graduating from college - and it is sometimes hard for me to believe that I'm actually living this new life. It's something I didn't really think I'd ever be able to do and certainly not as something I'd just dive into headfirst! But I'm really doing it and although it's really hard, and seems impossible at some times to continue doing it for very long, I'm pushing through and learning how to balance things so I can juggle them all and not have everything come falling down on my head.
I am thankful for this new job.
I am thankful for all the kids - both wonderful and not so wonderful - who I am getting to know through the preschool.
I am thankful for my wonderful family, for long phone calls with my older sister, for the amazing support my brother-in-law has given to me and his excitement for my new life, and for my aunt and uncle who have become so much more important to me as I've been able to spend more time with them over the past year.
I am thankful for all my wonderful friends, most of whom I know through e-mails and IM conversations more than in person but who are so dear to me and offer a kind of support that I don't think I could get anywhere else.
I am thankful for being able to spend time away - in Maine, in Oregon, in Connecticut visiting friends, in Tennessee, in Virginia, and so many other places that don't seem like they're really meaningful but are just because I'm able to spend time there.
I am thankful for warm socks and toasty beds.
I am thankful for all the kids I am lucky enough to teach through my theater classes and the amazing growth of the Young People's Theater program over the past 8 years that I've been a part of it (it went from 5 kids in one class in the spring of 2000 to now more than 30 kids in three classes this fall).
I am thankful for the good food I'm able to eat and the medicine that makes this possible.
I am thankful for my doctors because without them...well, who knows.
I am thankful for my infusion company who is just wonderful and works so hard to make sure I get what I need.
I am thankful for my insurance company, as hard as that is to believe since I complain about them so much, because without them I would not be able to be receiving the many medications, both IV and oral, that have been keeping me as well as possible.
I am thankful for snow that makes the world look fresh and new and sparkling.
I am thankful for these things and so many more, little things and big things, that make my life rich and full. And even when things look bleak and I'm not sure what will happen next, it's comforting to be reminded of all the good things instead of dwelling on the bad things (which is easier said than done sometimes). Life is certainly interesting most of the time and I am learning more and more that I can never predict what the next adventure or twist in the road will bring so I should live to the fullest RIGHT NOW and not put things off into the unforseeable future.
So HAPPY THANKSGIVING! I hope you enjoy time with family and friends, eat wonderful food, and count your many blessings. Remember that there are many amazing things in the world to be thankful for, not just the obvious things. I don't want to sound too corny, but everyday there are miracles happening around all of us through things as simple as a flower blossoming. Enjoy everything you can!
Live purely. Be quiet.
Do your work with mastery.
Like the moon, come out
from behind the clouds!
Shine!"
--Buddha
Hi Everyone,
I'm so sorry it's been such a long time since my last update. My mom mentioned to me tonight that it's been quite a while and when she went to check up on me, figuring she'd be able to find out how I'm doing through updates on here, she was surprised to see there wasn't anything recent up! So, here's a quick but overdue update. My trip to Milwaukee with my dad was great but too short. I often forget how travelling can wipe you out and when we got to the hotel on Saturday I pretty much fell asleep for a few hours, although that was also probably partially me sleeping off the phenergan I'd taken before getting on the plane. I didn't really see much of Milwaukee but that's okay, there wasn't really any thing I wanted to see, mostly just people. On Sunday I had lunch with my Lyme friend, Brian, which was nice since it had been more than 4 years since we'd seen each other. And on Monday I rented a car and drove up to see my wonderful gastroparesis friend, Mary, who has become such a great source of support and kind of adopted me through a gastroparesis group we both belong to. Our meeting had been a long time coming after e-mailing for almost two years. It was great to just get to sit down with her, have a cup of tea, and just talk about so many different things. And then my trip was pretty much over! I flew back on Tuesday afternoon and it was uneventful but the T (subway) ride back from the airport was a little rough since it was during rush hour (didn't realize that until I saw all the people waiting to get on after I got on) and I ended up having to stand for the whole ride. I was feeling pretty sick and close to puking or passing out by the time I made it to my stop but I made it and felt better when I got out into the fresh air and started walking. Anyway, the trip was good but I was sad to have to leave early and leave my dad there for a few days by himself (he's coming home tonight).
Health-wise things have been rocky still. Having stomach/reflux issues still, at the end of fighting off this cold after 2 weeks, tired, etc. And I had some insurance issues tonight when I went to get some meds from the pharmacy for the first time since switching to this new insurance (being declared a disabled dependent and my other insurance running out). Apparently the insurance company had declared me a disabled dependent but hadn't put me into the system and this is a month after they made the decision! So after some frustrated calls to my dad and him calling the person in charge of these things for his company and them calling the insurance company and then the insurance company calling the pharmacy, it got straightened out but it was too late for me to go pick up the meds tonight so I'll be going back home tomorrow afternoon to pick them up and stay home for the weekend which will be nice.
Okay, I need to get to bed. So glad tomorrow is Friday! And looking forward to a short week next week, too! I hope you're all having a good week! Thanks so much for stopping by to see me!
Tuesday, November 6, 2007 9:01 PM EST
Are now just tiny little pieces of who I used to be
And it just feels like confetti."
--Lori McKenna
Hi Everyone,
I'm home sick again, the second day in a row, and this cold is really kicking my butt. And I'm having to evaluate things a bit. This is my second cold in less than two months which is not a good sign for the rest of the school year. I can't keep pushing myself the way I'm pushing and expect to not crash and get sick like this. So I am unfortunately having to decide what I can cut back on or eliminate in order to manage with what I really have to do and give myself time to rest. Right now I HAVE to continue at the preschool and teach theater classes but I had to decide to take some time off of choir, even though that's one of the things that I really love and I think it's good for me, because it's an optional activity that I can cut out. Right now that seems to be all I can manage to cut out. The theater classes will be over in 6 weeks so I'll have a break from them after that 'til the spring session starts up and I'll have to figure out how to best schedule the classes to allow me the most down time and minimize my driving - I'm thinking of trying to have all the classes on one day but I'm not sure if that would be better. Anyway, I'm hating having to make decisions like this but it's necessary right now.
So, let me back up. I called in (or rather e-mailed in) sick to work on Sunday night for Monday. I was at home and didn't have my boss's phone numbers (there are two directors of the preschool) so I e-mailed instead and got a response that night so I stayed at home (my parents' home) for another night and slept in until about 10am, and this was after pretty much having slept all day on Sunday. I eventually came back up here and saw Dr. H (PCP) in the afternoon. Before the appointment I got hooked up to the energy treatment machine (it's called KMT-24, a better way to refer to it than "energy treatment" since that's more reiki or something like that) and some IV vitamin C for my cold. It was a good appointment and we made a few decisions. First, I'm getting a glucose monitor so I can hopefully get a better handle on my hypoglycemia so as soon as I get my insurance card I'll go get that at the pharmacy. Second, we're concerned about me getting sick so frequently so I'll be taking some homeopathic rememdies through the winter as a preventative and a higher dose when I'm getting sick. Third, we talked about another Lyme protocol to think about trying that's more alternative and has shown benefit for some people with long-term Lyme who don't get back to "healthy" with antibiotics. So I'll look into that and think about it. The thing with that is it takes a lot of specific timing of things and I don't know if I want to add more things like that to what I'm already doing. The nurse at Dr. H's office is very concerned about me doing too much and has told me many times to slow down and cut back on things which has been one of the reasons I'm trying to figure out what to do and what to cut out right now.
Then last night (Monday) I called in and left a message for one of the preschool directors (i.e. my boss) that I was still sick and wouldn't be at work today and went to bed early. Today there was some confusion over the message, my boss didn't get the message, they called me this morning wondering if I was coming in, etc. but it all got resolved. I stayed in bed pretty much until 12:30pm when I got up and ready to come down and teach my theater class this afternoon which I managed alright but I'm totally exhausted now. I'm staying at home (home home - my parents' home) tonight because I'm just not up to driving back up to my apartment (and according to my mom I look like...well, let's just say I don't look good) but I'm determined to go to work tomorrow so I'll be up really early to leave the house at 6am to drive up and hopefully not hit too much traffic on the way. And hopefully work won't be too bad and I'll manage to rest afterwards and make it to work for the rest of the week!
Well, I'm going to bed now and hopefully I'll be rested enough in the morning. I hope you're all having a good week! Thanks so much for stopping by to see me!
Sunday, November 4, 2007 5:23 PM EST
Where you stumble, there lies your treasure."
--Joseph Campbell
Hi Everyone,
I wanted to write something quickly tonight because I'm just really not doing well right now. On top of the stomach and eating problems, I'm fighting off a cold now that's in full swing and I'm not enjoying it. If it were one thing or the other - either the stomach problems or the cold - I could manage better but with both hitting me at the same time I have very little energy and keep just falling asleep because I'm just so tired and feel so crummy. I've been having to take more nausea meds which means taking phenergan which means I'm knocked out much more often. Today my dad and I were supposed to go up to Maine for the day and I came home yesterday afternoon to stay over and just head up from here this morning but last night I was not doing well, kept falling asleep, and my parents could tell I wasn't up to the trip so we decided to postpone it as much as I didn't want to. It's so hard when there are things you want to do so much and fight so hard to be able to do them - things that really aren't that big a deal - but when it comes down to it you have to make the difficult decision to cancel or postpone it because it's a matter of whether it's worth dragging yourself around and doing something but not really enjoying it or waiting until you're feeling better and can enjoy it more. So I've been sleeping a lot today. I set myself up on the couch early today and I've been here pretty much since then. I was able to eat some babyfood, drink a bottle of ensure, and I've been nibbling on goldfish and saltines with some issues. I'm going to try for a little soup and some sherbet when I'm done with this and hope I do alright with that. I'm considering calling out of work tomorrow as much as I hate to do it but I'll wait and see how I'm doing tonight when I get back to my apartment and tomorrow morning. It's harder than usual making decisions right now because I know I have a trip to look forward to that I leave for on Saturday and I NEED to be in better shape to really enjoy it. So I need to keep that in mind when making decisions of what to do and what to cancel this week. And I see Dr. H (PCP) tomorrow afternoon so hopefully she'll be able to do something to help and I'll probably end up getting some IV vitamin C in addition to my regular energy treatment at her office.
Okay, that's about it for now. Oh, and my labs look better than I thought they would for this past week with improvement in most areas (hemoglobin is still low but everything else is okay). I hope you've all had a good weekend! Thanks so much for stopping by to see me!
Friday, November 2, 2007 8:41 PM EDT
overcoming them is what makes life meaningful."
--Joshua J. Marine
Hi Everyone,
Well, sometimes things go well and sometimes not so much. The upper endoscopy (EGD) itself on Tuesday went fine - I asked for more sedation than I'd gotten during my last EGD in July and they really numbed up my throat so it was really not that unpleasant. I didn't feel the Botox injections at all but they took a few biopsies that I did feel a little bit (it's a weird feeling - not a pain, but more of a sudden little bitty tug). So after the procedure I was in recovery for a little while, had a little apple juice, made sure I was pretty much fully awake again (I was actually more awake AFTER the procedure than before since having to fast all day had made me pretty out of it), and my brother and I headed back to the subway (the T here in Boston) and back to my apartment. I was told to stick to liquids for the rest of the day and then slowly go back to solids on Wednesday. It would have been nice if it had happened that way. My brother and I had some ice cream that night and I could tell my stomach wasn't quite right and the next day I started out very slowly trying liquids and knew I couldn't go on to solids yet. And I still haven't managed much in the way of solids - the closest I've come is nibbling on saltines and eating a little chicken soup (not really doing well with the chicken part, more just the broth, carrots, and noodles). It's frustrating and I'm definitely more tired with less nutrition but I just know my stomach isn't able to handle more right now and pushing it is not a good idea. So I'm trying to get in as much liquid nutrition as I can manage and just rest more and deal with the side effects of not being able to eat much. I hate that I'm having to take more nausea meds which means taking phenergan more often which means I'm pretty much a zombie for much of the day. This afternoon I came home from work and immediately took a phenergan and shortly after that fell asleep for almost 2 hours which I'm sure I needed but I hate not having control over that. It causes the kind of fatigue with me that you just can't fight and fighting it just means being a zombie for the rest of the day while giving in to it and taking a nap usually means sleeping off that side effect. It's a nice side effect at night or when I want to take a nap but otherwise it's a pain (like at work on Wednesday when I had to take a phenergan first thing in the morning and was feeling awful the rest of the day because I was just so out of it). But it does help the nausea so that's good at least. So, anyway, I'm trying to recover from the EGD and hoping that I'll be better by next week but I've had to keep pushing back when I hope to be better - first it was the end of the week, then the end of the weekend, now it's next week.
In other health news, I also seem to be coming down with a cold. I really hope I won't keep getting sick this winter but I guess that's a hazard when working with 4-year-olds. I'll probably end up getting some extra stuff on Monday at Dr. H's (PCP) to help fight the cold which I hope will help. And hopefully she'll be able to help me combat this stomach stuff. I also need to call and make a follow-up appointment with Dr. R (GI) for 3-4 weeks from the procedure on Tuesday which I'll try to call about on Monday (probably actually from Dr. H's office). I drew labs yesterday but don't know the results yet since I haven't been home (home home - parents' home) yet where they get faxed and my dad didn't e-mail them to me. But I'll be home tomorrow so I'll try to update about them then.
Now for some non-medical stuff. On Wednesday (Halloween) I had the pleasure of getting to meet and hang out with Heather who was in town for some appointments. It was so cool to finally get to meet her and made me appreciate all that Caringbridge has opened up to me even more. When I got to her hotel to meet up and she came down to the lobby, she said, "We match!" referring to both of us having things hooked up, tubing coming out from under our shirts, and wearing little backpacks. Being out in Boston with someone else who was hooked up to infusions was so good for me. So often I feel so alone as far as all that stuff goes. I know plenty of people online who are on IV infusions and many of whom do them the same way I do with portable pumps in backpacks but I have only met a very few of them and everyone else I've met in person has been at medical-related events/conferences. So it was a different experience to be out in Boston going shopping, getting something to eat at a food court, walking down the street, and doing other "normal" things with someone else who has the same hook-up as me! I wasn't being stared at alone! I often feel like people look at me funny because of my backpack and tubing hanging down (even though I stuff a lot of the tubing into the backpack so not as much hangs down to be noticed) and I'm sure most people have never seen someone hooked up to IV infusions while out and about. And since people are trained not to ask about things like that and just try not to stare, no one knows what it's all about and probably comes up with their own conclusions or just stay confused. So, anyway, it was such a wonderful time spent with Heather and her mom around in Boston. Here's a picture of us in front of the big bear at New England Medical Center (NEMC):
And on Halloween (that same day) at school the other assistant teacher did face painting since she's also a face and body painter. She painted my face to show the kids that it wasn't scary or anything and although I washed it off before heading off to meet up with Heather, I did of course take some pictures so here's one of me with my face painted:
Well, I'm not feeling teriffic after just eating a little chicken soup so I'm going to crawl into bed, watch the episode of Grey's Anatomy from last night, and just hang out until my infusions are done and I can hook up my hydration overnight and go to bed. I already watched Ugly Betty from last night and loved the episode but of course I would since it had Wicked as a big part of it! While walking around with Heather we passed by the theater where Wicked is being performed here in Boston for another few weeks and it was cool to walk by that sign. I may try to get over to see it before it leaves but that all depends on how I'm feeling over the next week or so. Tomorrow I'm going to sleep in (yay!) and then pack up some stuff and head home (home home) for the night and then go up to Maine with my dad for the day on Sunday. We were going to go tomorrow but the weather is supposed to be pretty bad so we're postponing until Sunday. I'm looking forward to the little trip up there and hoping that it restores me a little bit to be there. And I can take a peek at apartment listings since (I'm not sure if I mentioned it here before) I'm planning/hoping to move up there next fall. Okay, off to crawl into bed. I hope you've all had a great week and thanks so much for stopping by to see me!
Wednesday, October 31, 2007 10:38 PM EDT 
--Anonymous
Hi Everyone,
I just wanted to do a very quick update to let you all know I'm okay, I survived the procedure yesterday and now I'm just dealing with the recovery process from it. I'm having trouble eating and having more nausea when I eat anything so I'm still on liquids and trying some mushy food (I had a half a mashed banana tonight and my stomach's still a little iffy on that). I'm hoping to be back to real food by the weekend but I'll take it easy and see how things go. It'll be a while before I know if the botox is helping and I'll see Dr. R in 3-4 weeks to discuss the game plan from here.
I'll do a longer update by the weekend with some fun stuff I got to do this week and some pictures. My heart's deciding to do some funky stuff and I'm exhausted and my infusions are almost done so I'm off to bed to hopefully get some good sleep tonight and be up bright and early tomorrow to go to work with the little kiddies who I'm sure are going to be either crashing or hyper from too much sugar tonight. Hope you all had a great halloween!
Monday, October 29, 2007 9:38 PM EDT
What appears bad manners, an ill temper or cynicism
Is always a sign of things no ears have heard, no eyes have seen.
You do not know what wars are going on down there where the spirit meets the bone."
--Miller Williams
Hi Everyone,
Three days in a row with updates - wow! This isn't really an update, though. I just wanted to say that tomorrow I go in for my endoscopy and botox injection into my pylorus (if you click that link there is a little info about the procedure). I get out of work at 1pm, get to the hospital at 2pm, the procedure is supposed to start at 3pm, and I'm really hoping to be out of there around 4 or 4:30pm. My brother is driving up to go with me since I need to be released into someone's care afterwards (although I should be pretty well recovered soon afterwards assuming I go with relatively light sedation) and I'm so grateful that he's willing to take one of his only days off to come up and do this for me. And afterwards we'll go get something to eat if I'm up to eating (which I hope I will be) or he'll just hang out at my apartment for a little while (which means I should probably clean up my room a little bit...or not). So if you could think some good thoughts for me around 3pm that would be great! Hopefully everything will go well and quickly and I'll recover quickly and be up to enjoying an evening with my brother.
Thanks for stopping by to see me! Hope you all had a good Monday!
Sunday, October 28, 2007 7:51 PM EDT
--John Shirley
Hi Everyone,
Just wanted to do a quick update now that I've looked at my labs - the anemia isn't following the pattern Dr. H and I thought it seemed to be. Instead of my hemoglobin and red cells climbing over the past 3 weeks they've been slowly going down. They're not really low yet but they're dropping steadily and I'm not sure why. Our theory was that I slowly build up from the anemia and get back into normal range and then it drops a lot around my period and then I start slowly building back up again, but this time it slowly declined over a few weeks BEFORE my period so there goes that theory (at least for right now). I'll see what it looks like over the next few weeks and hope that it comes back up. I'm also not feeling great tonight - mostly nauseous and getting a headache, possibly related but I don't know right now. And now I'm off to drive back up to my apartment and hopefully get a good night's sleep to start of the week on a good note! I'll find out my "real" liver lab numbers tomorrow at Dr. H's when I go for my weekly treatment. Hope you've all had a good weekend!
Saturday, October 27, 2007 9:24 PM EDT
And release my hold
Givin' up control
And let the rest unfold
And when the forewinds blow
And the rivers flow
We're gonna rock and roll
To when it all gets told
It's a long, long way from here to where we go
It's a long, long way from here to where we go"
--Beth Nielsen Chapman
Hi Everyone,
I'm about to turn in for the night (yes, a very early night but I'm so happy to be able to call it an early night) but I wanted to do a quick update before I do. The past week was long and I had a few too many late nights trying to finish the last assignment for my Children's Literature class but I'm happy to say that I e-mailed it off to my professor on Friday afternoon/evening and now I am officially done with school! It won't be official until the grade for this class is in, I guess, but my part of the work is done. It's a huge weight off my shoulders and it's been interesting having a day today when I haven't had to be reading books and the textbook for the class. It's so nice and I'm really looking forward to getting to do some pleasure reading now. If there's one thing that this class did for me (other than let me read and re-read some of my favorite children's books), it helped me re-discover my love of reading and showed me that I really can read and enjoy reading books if they are easy enough. See, over the past 10 years of dealing with Lyme disease I haven't had the best time reading. A lot of people with chronic illness have brain fog and trouble concentrating and memory problems and I certainly have all of the above. So reading was often much too tiring to make it fun and, with the exception of books like Harry Potter, I haven't really looked forward to reading unless the book really grabs my attention very early on. Anyway, it's been nice being able to read these books, most of which I read at one time or another before and getting to read them again was great. And I have a whole bookshelf full of books, many of which I haven't read yet so I'll choose a few of the most interesting ones to start on and hope that I can continue to read for fun.
Anyway, this past week has been difficult. I had my usual activities - work, theater classes, but no children's literature class this week. I also had my visit to Dr. H's office for the energy treatment I've been getting every week and I had to go back to her office on Wednesday after I got a call that my labs were way off this week - specifically my liver functions were really low and they figured it was probably an error somewhere but I had to go back in just to get it checked out and have repeat labs drawn (I haven't heard since then so I assume they're okay now). I don't know what my other lab numbers looked like because I haven't seen them yet but I'll post with anything out of the ordinary (for me at least) when I see them at home tomorrow. Today I slept in (all the way until about 8:30am - woo hoo!) and then spent a while in bed catching up on the past two weeks of Ugly Betty and Grey's Anatomy. It was a very nice way to start the morning. I was going to walk down the street to have some breakfast and go for a walk around town but it was raining so instead I stayed in and cleaned my room a bit and did some laundry and stuff like that. It was a pretty quiet day overall. I went to the grocery store (bit excitement!) and did well at not buying things I don't need and really can't afford (this will be an ongoing struggle for me as I try to save as much money as I can over the next 6-8 months in hopes of either getting a new (used) car or having plenty for my road trip in June with some left over). It's cool looking at the receipt and seeing that I saved more than $20 (with the use of my Shaw's card). I have a feeling I'll start clipping coupons soon, too.
Health-wise I'm hanging in there. I'm feeling run down and under the weather a bit, like I may be on the verge of another cold or something but I'm fighting it every way I can think of which includes going to bed very soon. I've been really tired but I haven't gotten nearly enough sleep most nights this week so it's not really surprising at all that I'm run down. I've been having more headaches, too, and the joint pain and stiffness is annoying but I'm dealing with it pretty well. Oh, and I have both of my infusion pumps now and it's so great having them and not being attached to a pole for hours a day, although the two pumps together are pretty loud (I thought one was bad but when they're both going at a relatively high rate it's quite interesting). But I'm just thankful to have them so I'll deal with the noise! I also got a few new little backpacks which I really love. I have quite the collection of little backpacks for my infusions but it's great to have options and be able to coordinate with outfits and my moods.
Okay, I'm off to bed. I hope you're all having a good weekend and thanks so much for stopping by to see me! Oh, and I almost forgot:
GO RED SOX!!!
Sunday, October 21, 2007 4:35 PM EDT
--Henry Ward Beecher
Hi Everyone,
I'm at my aunt and uncle's but wanted to do a quick(ish) update on things since there are a few things to report. First thing is I had my appointment with Dr. B (Lyme doctor) on Friday and it went well overall although it felt a bit rushed (I was his last appointment of the day and I think he had a phone appointment after me). He's cautious about me having the flu shot because he's afraid it will make me sick and send me into a crash but he thinks it's kind of a catch-22 where my immune system isn't great so I shouldn't have it because it might be too much and send my immune system into a crash but my immune system isn't great so I should have it since I'm more susceptible to the flu and hopefully the shot will protect me from getting really sick with it. So I'm going to have it on Monday but Dr. B has put me on 2 supplements to hopefully protect me from getting sick from the shot and I'll continue on them at a lower maintenance dose through the winter at least (they are vitamin A and transfer factor). He's also concerned about me doing too much with work and everything and setting myself up for a crash which I'm worried about, too, but try not to think much about since I just can't think about crashing with everything I have to do! So he just wants me to take better care of myself, get more sleep, etc. and he's putting me on another supplement (cordyceps) to hopefully boost my energy level. Those are the only changes to things. He's happy with how well I'm doing with all that I'm doing so we're continuing on with the doxy at the same dose, the week of flagyl a month, the hydration, and amino acids (which he doesn't handle for me anyway, Dr. H does) and the B-12 shots at the same dose and everything. My supplement count is climbing but so far my stomach is handling them alright (*knock on wood*). I think the key to that has been splitting up my morning meds into two doses - one when I wake up and one before lunch and I've set my cell phone to alarm at all my med times to remind me or else I forget. We also talked about going on a once-a-week treatment for Babesia (a co-infection I have) which he thinks could be a good idea (Dr. H was the one who brought it up, or I brought it up with her, or something like that so it's not Dr. B who suggested it) but I'd have to be careful about the possible side effects of it. Umm...what else...I think that was pretty much it. Oh, and I talked to him about my ANS problems, especially my issues with temperature regulation lately, and he thinks it's just because my body is so stressed with everything I've been doing that it's just going haywire.
So that's that appointment. In other health news, I can breathe a sigh of relief knowing that I have insurance coverage through my dad's work's new plan. I don't know if I mentioned this before but I was approved as a disabled dependent under my dad's plan in July just after I turned 25. And then of course the company my dad works for decided to change their insurance on August 1st so we were scrambling to get things together to submit to the new insurance to be declared a disabled dependent and be covered. So we sent in the first round of stuff and got a letter back asking for more. So my PCP sent in more stuff and apparently it wasn't what they wanted so they needed my medical records (yeah, good luck going through that 5" thick folder, and that's just the records from my PCP) or an evaluation from my PCP. So my PCP faxed over more stuff and we waited anxiously. Well, I found out yesterday morning that I was approved and will be covered retroactively back to August 1st and through August 1st, 2008 when it will be reviewed! It's a big weight off my shoulders (and my parents', too). I wasn't ever completely without insurance coverage because I was still on a COBRA plan from the insurance my dad's company (whichever one he was with at the time) when I went on a leave of absence in the fall of 2004 but this is the last month for that since it's been 3 years that I've been on it. So, anyway, big sigh of relief.
Other than that, it's been my usual busy schedule. On Thursday I had work and my two younger theater classes which went alright. And then the first of a four-week class at church in the evening which was interesting and I think I'll enjoy it. And on Friday I had work and left a little early and took off for NY to see Dr. B (driving through the pouring rain most of the way) and then to CT to my aunt and uncle's house (again driving through the pouring rain most of the way but this time it was at night in the dark). Yesterday (Saturday) I had a wonderfully blissful day of doing nothing. Well, not exactly nothing, I stayed in my pajamas all day and set myself up on the couch in the living room here at my aunt and uncle's house and just read for pretty much the whole day. I was reading books I need to get through for the final assignment for my children's literature class but I thorougly enjoyed what I was reading. I finished reading So Far From the Bamboo Grove which I read when I was about 11 or 12 and loved and then I started and finished the sequel, My Brother, My Sister, and I. I don't know when the last time was that I read a whole book in one day but I loved just lying and sitting around reading a book that was just so enjoyable (although it's horrifying at times) and I could really immerse myself in. And I read a couple of picture books and did the work to go along with them (I have to do short little write-ups on them with various info about them) so I'm a little closer to being done but still have a lot to do between now and Wednesday afternoon/evening when I have to go to Wheelock to turn the assignment in. And I got to spend the day with my uncle around. We didn't talk much, just mostly sat together on the couch - him reading the newspaper or working on the crossword puzzle and me reading my books - but it was nice to just be around him. And today I decided to stay here at my aunt and uncle's instead of going home for church and I went to my aunt's church which was interesting and nice to get to spend that time with her. We grabbed some lunch on the way back and then sat around outside talking which was great. And now I'm just hanging out and probably heading home (to my apartment) in the near future.
So, anyway, I just wanted to do an update today before the busyness of the week starts. After Wednesday I think things will get a little easier and I hope to slow down a little over the next few weeks and organize things a bit more. We'll see what happens. Thanks so much for stopping by to see me and I hope you've all had a great weekend!
Wednesday, October 17, 2007 9:00 PM EDT
"Yes, Piglet" replied Pooh.
"Nothing," answered Piglet,
"I just wanted to be sure of you."
~Winnie-the-Pooh
Hi Everyone,
It's been quite a week so far but thank goodness it's more than half-way over (although my weekend isn't going to be entirely restful because I have to go to NY to see Dr. B on Friday afternoon). I don't know what all I have to say tonight. I'm really exhausted but that's probably due in large part to not getting to bed until midnight last night because I was working on a final project for my Children's Literature class. We had our last class meeting today and handed in everything but a rather large assignment that's due next week even though we have no class meeting. Anyway, so I only got 6-7 hours of sleep at the most last night and for me that just doesn't cut it at all. Right now I'm about ready to just fall asleep at the computer (although I am on the computer in bed) but I have to finish up my amino acid infusion before I can call it a night (hopefully only another 20-30 minutes left).
Work is going pretty well but this week has been kind of rough because I'm in charge of the projects and I'm really not feeling confident with them and just feeling like I'm trying so hard to keep up with everything but not able to make things come together the way I want them to. For tomorrow I'm supposed to have a bunch of little branches collected for the kids to wrap things around (the theme this week is Leaves and Trees) but I totally forgot about collecting branches until tonight when I got home from my Children's Lit class so I may need to change the project at the last minute. I have a back-up plan (leaf bookmarks with real leaves, contact paper, and construction paper) but I hope not to have to go to that. Things are just so busy and I'm feeling overwhelmed a lot of the time but it seems like being so busy makes it impossible for me to really feel how overwhelmed I am. Not until I stop and have a chance to realize just how tired I am and how much my head hurts and how much I just want to be able to curl up in a ball and sleep until next month. But, in good news, I got my first paycheck on Monday! I have yet to put it in the bank because I haven't made it there yet but I'll do it tomorrow and I just need to start sitting down and really keeping track of my finances to make sure I work with what I have and manage to save up some every month. I have a goal of having enough to get a new (used) car in the spring but I'll have to wait and see if that happens or not.
In health news things are up and down. The joint pain is really getting to me. I'm now wearing ankle braces on both ankles everyday at least to work but usually for the whole day. They're helping but it's such a pain to have to wear them. My knees are in bad shape, too, and hurt when I have to do anything requiring bending them while putting weight on them. I haven't brought myself to wearing knee braces, too, but that may be in my very near future. The rest of my joints aren't too bad (*knock on wood*). My labs this week are better than last week in some ways, specifically my MCHC is back in the normal range (although it's only a 1 point difference from last week - at least it's in the right direction, though!) and my alkaline phosphatase has held somewhat stable (down 1 point from last week) and is hovering just in the normal range. My hemoglobin has gone in the wrong direction and dropped a bit from last week as have my red cells and hematocrit (although they're still in the normal range). I hate how it's just kind of a matter of waiting and seeing what they look like in a week and really not knowing what direction everything will go in. This chronic anemia is really getting annoying and I wonder how much of my fatigue could be related to that. All the IV stuff is going alright but the schedule is annoying. I will hopefully be getting a second ambulatory pump, though, so that I will be able to do everything with pumps in my backpacks instead of being stuck hooked to a pole for a lot of the infusions. Hopefully this will make a difference and make things a lot easier (and make me feel more comfortable at my apartment going out of my room while I'm infusing).
And in other health news there are a couple of things. I finally got a call back from Dr. R's office about the endoscopy and botox injection - it only took them 2 months to call me! Anyway, it's scheduled for Tuesday October 30th in the afternoon so I don't have to miss work but I did have to cancel my theater class for that afternoon. Hopefully it will go smoothly and help. If it doesn't help...well, I just hope it helps. Also I have to have a flu shot on Monday at Dr. H's (as long as Dr. B okays it on Friday). We figure it's a good idea for me to get it since I'm working with little kids and already caught a cold this fall. Umm...I thought there was something else but now I can't remember it so I guess that's it for tonight.
The rest of my week looks pretty busy - work and theater classes and church stuff tomorrow (Thursday), work and then driving to NY and then to my aunt and uncle's on Friday, staying at my aunt and uncle's on Saturday at least for the day, then church on Sunday (hopefully I'll make it, not sure about it though). I really need to take the weekend to do some serious work on this last assignment for Children's Literature (which involves reading a bunch of books, mostly picture books, and writing up information on them) and get some good rest. Thanks so much for stopping by to see me! I hope you're all having a good week so far!
Saturday, October 13, 2007 2:30 PM EDT
The precious moments are all lost in the tide.
They're swept away and nothing is what it seems,
The feeling of belonging to your dreams..."
--Roxette
Hi Everyone,
I've made it through the week. Whew! It was definitely a more difficult week than one would think what with it being a 4-day week (Monday holiday) but I managed pretty well considering. My week of work was pretty hectic and more chaotic than usual which I think is due in part to starting on a Tuesday - everyone just seemed off that day and things were just crazy at work but we managed with some flexibility. The rest of the week went a little better but it was long and really busy. I had my usual rushing around from work to my theater classes, my children's literature class, more theater classes, choir, etc. - all the usual weekly stuff that keeps me very busy and on the move most of the time. I'd love to just have a break from it all but I guess I'll have a bit of a break when my children's literature class is over after Wednesday (well, the work won't be over until the following Wednesday but that's pretty close, too). I have to leave very soon to go babysit for the afternoon and evening which I'm hoping will be relatively easy and it will be nice to have a little bit of extra money. I don't think I've mentioned this before but I have yet to see my first paycheck from the preschool because we get paid in the middle of the month for the previous month so my first check will be coming next week for the month of September. It will be fine once that first check comes in and then they'll be regular after that but it's been rough for the past few months with virtually no income and very little in savings. Unfortunately my credit cards have seen the brunt of the damage which I hate but was necessary.
Health-wise things are a bit better than they were as far as the ANS stuff goes. My temperature is now staying normal (well, my normal) for the most part with some slight fluctuations but nothing like they've been over the past few weeks. My BP is pretty good and my pulse is better than it was but still not great for me. Oh well, I'll take better, regardless of how limited it may be! My labs this week were good overall which is great. My hemoglobin is still a little low but coming up and my MCHC is a tiny bit low but also coming up. And everything else is in the normal range, including my alkaline phosphatase which has been chronically low! It's surprising to me and I'm not sure if it will stay up but it's great to see it in the normal range after a long time of low numbers. Maybe it's the B-12 kicking in, maybe it's the zinc kicking in, maybe it's a fluke, who knows so I'll have to wait and see what it does over the next few weeks to get an idea of what's up with that. My joints are still misbehaving and I've pulled out my knee braces (yes, I have two of them but generally only wear one on one knee at a time) and actually had to go buy a new ankle brace because I can't find my old one. I'm doing my best to not wear them if I can help it because I just hate wearing them but they do help when my joints are more painful. My stomach is a bit up and down lately but that's normal for me. That's about it as far as the medical front is concerned. This week I see Dr. B on Friday and on Monday afternoon I'll be at Dr. H's (PCP) for an energy treatment in addition to all my normal things - work, theater classes, children's literature class.
I'm really trying to find the balance between getting everything done and taking care of myself and in some ways I'm doing well with that but in others I'm falling short. Getting to bed at a reasonable time is a struggle and I hope to do better with that once my children's literature class is over and I don't have a ton of reading to be stressed about finishing up. This morning I was proud of myself that I got up and went out for a walk. It wasn't a really long walk - about a mile total - but it's nice to just get out. And I got a very nice shower this morning which always (well, usually) makes me feel better although it does tire me out. Other than that, I'm just trying to focus on eating the best I can given all my limitations and eat frequently to keep things stable. It's a struggle to be trying to balance so many things right now but I'm determined to manage it. And I've talked a bit more about my health stuff with people at work which has been good for me and I think will make things a bit easier there in the long run.
Well, I have to get ready to go babysitting. I'll be bringing a few books with me to hopefully get some reading done once I put him to bed. And tomorrow will be focused a lot on reading, too, after I drive down to go to church. Hopefully next week will be a little smoother than this week was and I'll do my best to update sometime during the week! Thanks so much for stopping by to see me. I hope you're all having a good weekend!
Tuesday, October 9, 2007 10:17 PM EDT
and see who I am in the stories I live.
And together we will remember that each of us always has a choice."
--Oriah Mountain Dreamer, "The Dance"
Hi Everyone,
Just wanted to do a quick update tonight before I turn in. I ought to be doing reading for school but I'm so worn out and just have no brain cells left to do any reading so I'll figure out how to fit it in around work and everything tomorrow. I'm still struggling with various things, one of which being my ANS (autonomic nervous system) just going haywire. Now instead of having the low-grade fevers I was having when we had a stretch of hot weather I'm having lower than normal temperatures (around 96.6*, about a degree below my normal temp) and a lot of episodes of shaking chills which are pretty tiring. My blood pressure and pulse are still causing problems but I'm managing alright with it. I'm also having a lot of muscle and joint pain which just isn't letting up so I'm trying to find ways of handling that. And maybe more than anything else I'm trying to find the balance between everything - work, my theater classes (aka "more work"), my children's literature class, church stuff, and most importantly REST! It's that last part that is unfortunately falling by the wayside more than it should and it's definitely taking a toll, both physically and emotionally. I'm just so worn out and somedays I'm just not sure how I'll manage but somehow I always do manage and I get the most important things done and figure out what I can put off or not do altogether. So far so good, but when my children's literature class is done (only two more classes - tomorrow and next Wednesday) I'm going to focus a lot more on resting. But until then I'll be spending every free waking moment reading since I'm behind on the books we have to read and turn in information on next week. It's going to be one heck of a week. Plus I'm babysitting on Saturday for the grandson of a friend of one of my bosses which hopefully won't be too bad and will allow for some reading time (it's a little kid with an early bedtime, I'm hoping).
So that's it for me for tonight. Thanks so much for stopping by to see me. I hope you're all having a good week!
Saturday, October 6, 2007 3:50 PM EDT
Living on a rollercoaster
The valley's too low and the hill's too steep
It isn't how it's supposed to be"
--Michael Troy
Yes, I'm actually posting less than 24 hours after posting the last time because I'm really baffled about what's going on with my body lately. I mentioned the low-grade fevers/elevated temperatures last night which kept bouncing around between 97.9* (near my "normal" of about 97.5*) and 99.2*. That was confusing me but I figured I'd just make note of it and keep tabs on how it goes over the weekend. Well, today has been...interesting. My temperature again has been bouncing around and just taking a shower a little while ago made it jump up to 99.4*! Since my "normal" temp is about a degree below what's considered "normal", it's like having a temp of 100.4* which is just not a good thing. And in addition to that, my pulse and blood pressure have been wacky which makes me pretty sure all this is my autonomic nervous system having issues. My pulse is okay when I'm lying down, and it's within normal range when I'm sitting up, but as soon as I stand up it jumps to about 125 bpm (normal is 60-100 bpm). And my blood pressure has been on the low side for me at around 100/60 (I'm usually at least close to 120/70). All of this is adding up to me feeling pretty darn cruddy. And I de-accessed my port today to be able to shower and I think it's actually been just over a week since I changed the needle so I'm due to do that anyway. My port looks like it needs a little time to rest before I access it again so I'm stuck without being able to get extra fluids to try to calm everything down. So I guess I'll just be spending the rest of the day in bed resting, reading, watching TV, and not doing a whole heck of a lot, not that I had much planned for today but I was hoping to go for a walk or something. I'll be so happy when this heatwave is over and we get back to more fall-like temperatures. My body does best when it's 60-70* or a little cooler and as little humidity as possible. Right now it's definitely not like that. Oh well, it should be better tomorrow.
Alright, I'm off to take some more meds and watch a movie and do some reading a little later on. I'm just glad my bed and I are such good friends and I don't mind the downtime. It's just frustrating, especially when I don't usually have issues this extreme with my autonomic nervous system (I should just start writing ANS because that's just too much to type), at least not with the temperature issues. I just hope it all calms down when the weather calms down a bit. Hope you're all having a good weekend!
Friday, October 5, 2007 7:44 PM EDT
--Kathleen Norris
Hi Everyone,
Sorry about the lack of updates. I've been so busy, crazily running to work, to class, to teach my theater classes, trying to get homework done, juggling my IV schedule, and attempting to get some sleep in there amongst all the chaos and crazyness. I don't think I've done the best job of balancing it all and making sure I take care of myself but I'm trying. And now I have a nice long weekend (I have Monday off work) to rest and catch up on things...or at least attempt to. I have to say this last week has been trying and I think a lot of that has to do with the difficult schedule of IV stuff since it was my week of IV Flagyl (which is three times a day) on top of all my other regular infusions. It meant waking up at 5:15am for the first dose (after hooking up I went back to sleep for the hour that it infused) and being up until 10:30 or 11:00pm to finish up the last dose. But now the week is done for this month (woo hoo!) and I can get a little more sleep which I'm looking forward to, starting with an early bedtime tonight (I'm shooting for 9:00pm which is about the earliest my regular infusions will allow for).
I saw Dr. H (PCP) on Monday after work and we had a good visit. We talked a lot about my labs and we think there's a pattern with my anemia in that I slowly work my way up to the normal range just in time for my period and then it drops a lot in one week and I have to start building it up again. So we're trying to double my iron supplements at least for the week of my period to see if that helps keep me more stable. We also talked about my joint pain and headaches although there's not a whole lot to do about either of them except not be as hesitant to take things to help them. We also talked about my hypoglycemia issues and how I can't usually tell whether a headache is a Lyme-migraine (Lymegraine) or hypoglycemia related headache and I may end up getting a blood glucose meter at some point but right now it's not something I want to add to the mix of things I have to juggle. So instead I just need to try to pay more attention to signs of hypoglycemia and be sure I eat (or drink some juice) every few hours to try to keep my blood sugar as level as possible and we'll see how it goes over the next month. I'm also starting back up on the KMT-24 (type of energy) treatments every Monday afternoon so after I'm done at work at 3:00pm I'll head over for a few hours at least of that which will make for a long Monday but I can take a nap or read or do homework while I'm there so it will be fine (maybe actually nice to have the few hours to myself there with few distractions and I like the nurse so we can chat, too).
Other than that as far as the medical stuff goes I'm having a lot of muscle and joint pain which I believe it's due in large part to sitting down in and getting up from the little preschooler chairs that are the only chairs to sit in at the school except for a few chairs in a different room that are "adult" sized. So my knees are suffering but hopefully my muscles at least will adapt and build themselves up to a point where I don't cringe everytime I have to stand up from any chair. I did manage to walk to work today which I'm happy about and I really like being able to walk when I have the time since then I feel a little freer afterwards. I stopped for ice cream on the way home and ran a few errands which was nice. Health-wise I'm also having issues with the heat we've had for the last few days. Aside from the normal heat-related problems I tend to have where I just feel lousy, I'm having more low-grade fevers which worries me because it means that I either am getting (or already have) another cold or the flu or that my autonomic nervous system is just really out of whack and can't regulate my temperature. In any event, I'll keep tabs on that and hope I don't end up getting sick. Other than that I'm just really worn out and hoping to get a lot of extra sleep and rest this weekend.
Let's see...I don't really think there's much else to update about. My theater classes are going well - two of the classes (the beginner and intermediate ones) have their scripts for their plays now. The beginner class is doing Chicken Licken (aka Chicken Little aka "the sky is falling!") and the intermediate class is doing an updated version of A Christmas Carol called Ebony Scrooge (Scrooge is a woman as are most of the other main characters which works well since my classes are all girls!). And I'm working on a play for the advanced class - it's between The Phantom Tollbooth and Beauty IS a Beast (kind of a fairy tale spoof). I have to finish reading the script for The Phantom Tollbooth before I decide but I'm leaning towards that, although it will require some tweaking to the script. My children's literature class is going well, too, and I'm down to only two classes left which I'm happy about. Having my Wednesday evenings/afternoons free will be nice. And for now I'm just enjoying looking forward to a nice long weekend. I'm going home (home home) for part of the weekend and I'll spend the rest of it reading for my classes (theater classes and children's literature class), resting, and catching up on things.
So that's it for me for tonight. Oh, and I have a new entry up on my blog so go read it if you have a minute - it's on something that some of you might find interesting. Thanks so much for stopping by to see me. I hope you've all had a good week and that you have a great weekend, whether it's a long weekend or just a regular length one for you!
Friday, September 28, 2007 8:48 PM EDT
---Dale Carnegie
Hi Everyone,
I'm having a little bit of a rough night tonight. The full week of work wore me down more than I thought it would, I have a lot on my mind with lists of things to do (not an altogether rare occurrance), and I got my lab results for the week which are off again so that's frustrating and discouraging. Just to get the health stuff out of the way first, I'm not doing great - I'm having a lot of muscle and joint soreness and pain, headaches, and feeling very out of it. But when I look at all that I'm doing now it's not that surprising that I'm having some trouble and I'm just glad I'm doing as well as I am. I was frustrated to get my weekly lab results and see that things are off again more than they were last week (everything but my alkaline phosphatase was in the normal range last week). This week my red cells are low (but not that low - just 3.8), my hemoglobin is low (10.8), my MCHC is low (just barely), my alkaline phosphatase has dropped a few points from last week, and my total protein is just barely low but it's usually well within the normal range. It's so frustrating when things start looking better, even if just for one week, and then something (or more than one something) drops the next week. Oh well, we'll see what they look like next week and if Dr. H has any ideas when I see her on Sunday. I'm also at the beginning of my week of Flagyl (the one week a month) which is making for a difficult infusion schedule and much less sleep than I'd like or really need. Thank goodness it's only one week a month! I think the Flagyl is also making me more worn out so hopefully I'll bounce back a little when I'm done with it. My cold is slowly getting better. There have been days where it really feels like it's almost gone but then it seems to get worse so I can't really tell how close it is to being gone. At least it's going in the right direction, though, and I'm handling it alright.
Now, for the non-health stuff, I'm realizing how hard it is on me right now to be living with people (my roommates) who really don't know anything about my health stuff. They each know a little bit, and I mean a very little bit, but I don't feel as comfortable as I'd like to. I'm not as stressed out about someone coming into my room while I'm hooked up to IVs on Roly Poly (my IV pole) - that already happened once with one of my roommates and she freaked out a little but it wasn't as weird as it could have been. But I don't feel at all like I can go down to the kitchen to get something with my IV bags held over my head (at least not while I know my roommates are around). But more than that, I'm realizing how hard it is for me to live with people who just don't know anything about my life. Maybe that's a little bit of an exaggeration, they know something about my life, but there are so many things they don't know anything about (and vice versa, I feel like I know very little about them) and I just don't really feel at home outside of my bedroom. I'm sure that will get better as time goes on and I really do like living here, being independent, my job, my co-workers, all that stuff and as long as I stay in my room I feel fine at the apartment, it's just hard feeling weird in the rest of the apartment. I didn't mean for this to become all about my apartment life, but it's been interesting for me to realize that I have a lot of quirks and weird issues that I think make me better suited for either living by myself or with people who I already know well. But it will be fine.
Okay, my arms are really sore and I don't think I can type anymore (and I need to switch infusions - I'm finally about to start my last infusion of the night (my last Flagyl infusion of the day) so I'll be able to go to bed in about an hour which I'll hopefully do). I'm just going to crawl into bed (well, more like onto bed since it's a bit hot so crawling under the covers isn't that appealing) and finish watching the Ugly Betty and Grey's Anatomy premieres from last night. Thanks so much for stopping by and I hope you've all had a great week!
Monday, September 24, 2007 9:07 PM EDT
Please don’t throw your dreams away
Hold them close to your heart
Cause we are all a part
Of the ordinary miracle"
--Sarah McLachlan
As promised, here's the introduction to Dudley. First of all, here he is:
Dudley is a dog (not a real one, true, but still one with a very strong personality) from my preschool class. Each weekend, someone from the class takes him home and takes him around with them and writes about everything they do in our Dudley journal and shares that with the class when they bring him back. So this past weekend I got to take him home (a teacher takes him first) and we had a great time. He loved being in the car (I told you he has a personality) and we had a great time together. Here are a few other pictures from our weekend together:
Enjoying the wind in his fur on the drive to Dr. B's
Trying to take a look into my bag of books and stuff from The Eric Carle Museum
And me and Dudley - don't we both look happy?
Okay, I'm off to bed. Just wanted to introduce you all to Dudley! Next weekend someone else from the class will take him home and write about their adventures. Dudley certainly has an exciting year in store! Thanks so much for stopping by. I hope you all had a good Monday!
Saturday, September 22, 2007 6:55 PM EDT
--Grey's Anatomy
Hi Everyone,
I thought it was high time for an update (well, past high time really but there's no use wasting time (mine and yours) figuring out just what that would make it). I'll make this as to the point as I can and try to keep rambling to a minimum, again to save both of our time, not that I don't enjoy rambling it's just...wait, that would qualify as rambling so I'll just put a stop to that right now.
Let's see, when I left you last I had survived my first week of work (more on the consequences of that in a minute) and I was getting ready for a busy weekend of Red Sox and the Boston Folk Festival. Well, that sore throat I mentioned in that update and was wishing and hoping was just reflux or thrush, either of which are easier to deal with or at least have less repercussions than a cold, has turned out to be a cold. And possibly not even just a cold but the flu - yuck! By Monday I was feeling pretty sick - stuffy nose, cough, sore throat, etc. - and as the week went on I was feeling it slowly get worse. With me colds don't move fast - they take a while to fully develop so that I never quite know how bad they're going to be and they take their time leaving my system so getting a cold one week into the school year is not a good start. But I'm dealing with it. It's moved more into my chest and I have horrible post-nasal-drip (sorry, don’t mean to be gross there) which isn’t a thrill to deal with but I’m hanging in there. The latest development is a low-grade fever that keeps coming and going. I kept feeling feverish but would take my temp when I got a chance and it would be pretty much normal (normal for me anyway which is somewhere around 97.5* usually). But on Thursday night after my theater classes I took my temp and it was up to 99.2* which, given my low normal temperature, is more or less equivalent to 100.3* - not good, especially considering I don’t usually get fevers. Then it went down and was fine on Friday until I was at Dr. B’s office (more on the appointment in a minute) where it was 99.2* again, then in the car later (I brought my thermometer with me – wasn’t I smart?) it got up to 99.6* but kept going up and down, bouncing around between 98.0* and 99.6*. So I’m not convinced it’s really a fever, my theory on it is that the cold has just thrown my autonomic nervous system even more out of whack so it’s having more trouble regulating my temperature because it seems to shoot up when it’s warmer out and go down when it cools off, and also to be higher in the evening than in the morning. So hopefully it will get better with some extra fluids and hopefully some extra rest.
In other health news, I saw Dr. B yesterday (obviously, since I already mentioned it) and he’s happy with how I’m doing on the IV Doxy. It’s so amazing how he can walk in the room and take a look at my eyes and really see how I’m doing – probably one of the most objective ways of telling how I’m really doing since I can’t always tell. He said he has a number of other female patients around my age (teens and twenties) who have very similar problems to mine (Lyme, Dysautonomia, etc.) and he sees the same reflection of how things are by looking at their eyes so that’s interesting. So since I seem to be doing well at this dose of the Doxy we’re not increasing it (yay!), we are cutting down on the dose I get in my B12 shots because I’m having some signs of getting too much (mainly pink urine after each shot – the shot itself is red which pretty much explains it), he still wants me to get an appointment with the neurologist in NY which I keep forgetting to do, I’m re-starting oral zinc (in addition to the zinc I get in my hydration everyday) since my alkaline phosphatase is still pretty low, and I’m starting on an herbal decongestant/antihistamine for my cold since all the regular ones just knock me out. I think that’s pretty much it from the appointment. My labs came back up to normal this week for everything except my alkaline phos. which is still hanging around below normal (hopefully the zinc will help…or the B12…or something) but at least my red cells are back up (just barely normal at 4.0) and my hemoglobin and hematocrit and everything is relatively good now. We’ll see if it all stays up! (Keeping my fingers crossed!)
In general I’m doing relatively well considering how much I’m juggling lately. Work is going alright but the kids do wear me out. My theater classes are going alright but the kids wear me out. Is there a pattern there? But I do love what I’m doing so that’s good. My joints have been bothering me more lately and I’m having some headaches but those could be from my cold. I’ve been eating alright which is good, dealing with other various things but nothing too out of the ordinary for me.
After my appointment yesterday I came to my aunt and uncle’s to stay over and I’m still there (er…here) to stay for another night before heading back to my apartment and then to church tomorrow (I think...possibly not church, I’ll see how tired I am). Today I decided to go to the Eric Carle museum in Amherst (not too far from my aunt and uncle’s) since we talked about him and his art during my Children’s Literature class on Wednesday and next week at the preschool our unit is on Eric Carle and I’m in charge of the projects. Plus I figured I’d love it anyway! And I did. It was really cool and I had a good time but probably spent as much time in the gift shop as I did in the actual exhibits. The gift shop was seriously amazing, at least for me. It’s just full of children’s books and puppets and art stuff. I did pretty good at not buying too much (a few books, a puppet, and some stickers) but I may have to go back again sometime just to go to the gift shop. But I figure I have a good reason for needing to buy children’s books seeing as I’m a preschool teacher now!
So that’s pretty much been my week. Oh, and in my next update I’ll introduce you to Dudley (I’m updating from my aunt and uncle’s computer and don’t have pictures on here). I’m not telling you anything more about him, you’ll just have to come back! (Check for a Dudley update by Monday evening.) Well, I’m off to do some reading for my Children’s Lit. class and then have dinner with my uncle and I’m looking forward to hopefully getting to spend a little time with my aunt and cousin tonight (my cousin…well, technically she’s not my cousin – she’s my aunt’s niece but my aunt’s not a blood relative so technically my “cousin” and I aren’t related – anyway, she’s being honored at a dinner tonight that my aunt’s at and then she’s coming to stay here tonight which is part of the reason I opted to stay over another night rather than go home today). Thanks so much for stopping by to see me! I hope you’re all having a great weekend and Happy Fall tomorrow (and Happy Yom Kippur today to my Jewish friends).
Friday, September 14, 2007 7:05 PM EDT
--Hazrat Inayat Khan
Hi Everyone,
Amazing that I'm putting together another update just a few days after my last one! Mainly I just wanted to update with my lab results from this week - not looking any better and some of the numbers are worse than last week. Now my BUN (Blood Urea Nitrogen) is low (showing I'm not getting enough protein), my RBC is lower than last week, same with my hemoglobin, and my alkaline phosphatase has dipped further - those are the nubmers in the abnormal range but my hematocrit has also taken a nosedive although it's still holding in the normal range for now anyway. Frustrating that things didn't come back up from last week since it seemed I was in a pattern of low numbers one week and then everything would come back up the next week but I guess that pattern has stopped. Oh well, we'll see how things go for the next week. I'm doing a bit better with my eating now - at least making sure to pack myself something for lunch to have at school while the kids eat their lunch and being better about having a protein drink throughout the morning (and trying to be better about eating something good for dinner but that's a bit more difficult since I'm usually not hungry in the evening). So maybe with some sustained better eating my labs will start looking better. I've also lost a little weight in the last few months including a few lbs. in the last few weeks but so far it's nothing too alarming so I'm not worried but it's something I'm keeping an eye on.
And, on a better note, I survived the first week of preschool!! I'm worn out. I'm dealing with a sore throat (which I'm hoping is just either reflux-related or thrush-related and not the beginnings of something else - it seems mostly to indicate thrush since it's worse when I have things with sugar in them and have some coating on my tongue). My joints are pretty painful at times. But I survived the week and I'm still standing...err...sitting! Granted, it was only a 4-day week and I only had one day of teaching my theater classes rather than two but it's still a start. My theater classes went alright - very energetic kids and not necessarily in a good way as they seem to have trouble focusing their energy and paying attention but I have a few things I'm going to try next week to hopefully keep them under control a bit better.
Okay, that's it for my update today. A little update is better than none at all! This weekend should be fun - I'm going to watch the Red Sox game tomorrow at the house of a friend from church with my dad and a bunch of other people so that should be fun and then on Sunday my dad, brother, and I are going to the Boston Folk Festival which should be great since there are a lot of my favorite local folk artists playing. And hopefully I'll get some good rest, too, in the midst of all of that. Thanks so much for stopping by! I hope you've all had a good week and that you have a great weekend!
Wednesday, September 12, 2007 10:32 PM EDT
overcoming them is what makes life meaningful." --Joshua J. Marine
Hi Everyone,
Okay, I'm finally sitting down (well, semi-lying down) to write a "real" update. This may be a work-in-progress for a while and I'm not sure when I'll finish it and get it posted but at least I'm starting it tonight. The little mini update yesterday had the short summary of the last week (or actually closer to two weeks) but I'll try to give a little more detail about things. First I'm slowly starting to settle into my apartment. After some issues with not having a place to put my food away and just not feeling very comfortable here things seem to be working out, I have a cabinet for my food, I brought some dishes up with me so that I'm more comfortable in the kitchen (I've realized that I have some issues about using other people's dishes and other people using my dishes, at least when it comes to a real living environment rather than just a short-term thing), and my room is shaping up. I got my curtains put up today as well as some of my wall decorations, finally got all my medical organizational stuff up here and it's so nice to have all my IV stuff organized (I didn't realize just how much IV stuff I had until I went to organize it). I'm getting more comfortable at work, too, and I survived my first day with the kids there! Today (Monday) was my "long" day when I do the early birds and after care so I'm with the kids from 8am-3pm which is a very long time and I was tired from early on but I pushed on and made it through the day and I'm looking forward to getting to sleep in a bit more tomorrow and having the afternoon free (although I have a lot of reading to do for my Children's Literature class on Wednesday so that's what tomorrow afternoon will be filled with). The kids are all great and I'm having a fun time getting to know them and getting to know the ins and outs of the school. I still have a ways to go in settling into my life here but it's definitely getting there. Part of it will be getting into a good routine, getting to bed early (I'd love to have 9pm be my bedtime but with all the infusions I have to do in the evenings that's unlikely to happen too often), getting up early, actually forcing myself to eat something in the morning (or more likely sip at a protein drink throughout the morning), and just generally get used to things more.
Now, in medical news...well, there isn't much that's really news. The gastroparesis/GI stuff is still at the forefront of things. No call yet from Dr. R's office about scheduling the botox procedure to hopefully help that so I need to remember to give them a call later this week. (Unfortunately my cell phone, which is my only phone at my apartment, has been having issues and I'm waiting for my replacement phone to arrive which hopefully will be tomorrow.) I looked up the numbers I could find for my last gastric emptying scan (GES) and it's pretty discouraging how much worse it seemed this time around. Both of them are about the same at 60 minutes but the one from last April showed 74% emptied at 2 hours while this one showed 32% emptied at 90 minutes (this one only went for 90 minutes and I don't have a percentage for 90 minute emptying from the one from last April). So, anyway, I'm just trying not to think too much about it but it's kind of interesting to see how much better I feel GI-wise when I don't eat much of anything (like last week with all the hectic stuff going on at the preschool and just not feeling much like cooking anything). Of course then I feel worse energy-wise but it's hard to decide which is better or worse. In other medical news I've started the IV Doxycycline and so far so good. No big side effects (*knock on wood*) and I'm handling the schedule alright - it's infused twice a day so it's not too bad. But of course I also have my regular hydration (8-10 hours), nightly amino acid infusions (1.5 - 2 hours), and extra hydration when I'm not feeling so great (4-5 hours) so I have my hands full juggling them all, especially with only having one pump and not feeling comfortable being hooked up to gravity infusions around my apartment since my roommates don't know about all my health stuff yet.
Okay, I'm picking this update up from where I left off the other day (I started it on Monday, now it's Wednesday night). This week has been long and tiring but I have a bit of a break tomorrow for Rosh Hashana - no preschool so I can sleep in a bit more than usual (although I still have to wake up at 6am to do my morning Doxy infusion but I can go back to sleep afterwards for a little while). But it's not a totally free day because my beginner and intermediate theater classes start in the afternoon so I have to drive home to teach from 3:30-6:00pm, stop in at home for dinner (and maybe stop in before the classes, too, depending on how early I head home), and come back up here for one more day of work this week. It's strange having a Thursday holiday and then working on Friday but I'll take the holiday wherever I can get it! The kids so far are pretty good but they were definitely more crazy yesterday than they were the day before so we'll see how things change over the next few weeks with them. I can't believe it's only been three days so far, it feels like it's been a few weeks. I'm getting into the swing of things but I'm still absorbing lots of information everyday.
Back to medical news. I'm doing alright with my infusions but definitely wish I could sleep some more in the mornings - not enjoying the 6am wake-up to hook up the IV Doxy infusion but I'm hoping I get better about getting to bed early (which I'm not doing well with tonight) so that getting up in the morning will be easier. And maybe I'll actually manage to get up at 6am and have some more productive time then. I'll do my weekly labs tomorrow and drop them off for fed-ex - I'm hoping they're better this week than they were last week. I don't think I mentioned it before but last week's labs showed anemia again and my alkaline phosphatase has dropped again. I'm not sure what's going on with all these ups and downs of labs but hopefully they'll stabalize soon. In the mean time I'll just keep plugging along doing what I'm doing and hopefully things will start looking better soon. My stomach/GI system isn't great but I've finally managed to do some grocery shopping and stock up on some good staples - oatmeal, protein shakes, rice, chicken breasts, yogurt, etc. so I'm hoping I'll start doing a little better with eating a little bit at a time to add up to more throughout the day than I've been managing.
Before I finish this up, here are some pictures from the end of my time in Maine - nothing too spectacular but I figured I might as well finally post them!
Okay, I'm going to wrap up this update and head to bed. Tomorrow will be a nice quieter day but still a lot to do. Hopefully my theater classes will go well (I actually have no idea how many kids are signed up for the classes since my phone has been having issues and I haven't talked to my boss at the art center since before I went to Maine in August) and I'll avoid most of the traffic driving down and back. And hopefully my labs will be better this week. I also have to run over to Verizon to have my replacement phone (which came today) programmed with all the info from my old phone so I can get back up and running with a working phone! I guess it will be a busier day than I was thinking it would be! Thanks so much for stopping by to see me. I hope you're all having a good week so far!
Sunday, September 9, 2007 10:28 PM EDT
If you cannot refuse to fall down,
refuse to stay down.
If you cannot refuse to stay down,
lift your heart toward heaven,
and like a hungry beggar,
ask that it be filled,
and it will be filled.
You may be pushed down.
You may be kept from rising.
But no one can keep you from lifting you
from lifting your heart
toward heaven -
only you.
It is in the middle of misery
that so much becomes clear.
The one who says nothing good
came of this,
is not yet listening.
--Clarissa Pinkola Estes
Hi Everyone,
This will be very brief but I really felt like I needed to do an update with at least some kind of summary of my crazy busy past few weeks. So here's the really really short version.
~ I had a wonderful time in Maine (I'll post pictures of the last few days there in my next update I promise) and I was sad to come home.
~ I had a great visit with my aunt and uncle on the Saturday we left Maine since they were coming up to stay at the cottage for the next few weeks.
~ I spent Labor Day Weekend busily packing and crashing pretty hard. I moved a lot of stuff up to my apartment on Monday and started work on Tuesday morning.
~ Last week at work we got our classroom set up, had meetings, had a parent's night, had an open house for the kids, and generally got everything ready for school starting tomorrow (Monday).
~ I saw Dr. H (PCP) on Tuesday and the main change is that she's upped my IV amino acids to everyday instead of three times a week.
~ I started the B-12 shots - every three days with sub-Q shots, could be a lot worse.
~ My class at Wheelock (Children's Literature) started last Wednesday and so far so good, but I have quite a bit of reading to get done this week. Better get started on that tomorrow.
~ I went home this weekend for a visit with my family and to go to church which was good. But I didn't get back up here to my apartment until late tonight and I'm very tired so it's time for bed.
So that's the very short summary. I'll try really hard to be more regular with updates (and better updates than this one) but at least this is better than nothing! Health-wise things are a bit rough right now but hopefully I'll adjust to work and my apartment and everything and soon I'll ease into everything. And as you can see I've done some updating to the lay-out of the site and updated my medical story towards the top of the page. Somehow that was easier to peck away at than putting together an update! Thanks so much for stopping by to see me. I hope you all had a great weekend!
Tuesday, September 4, 2007 11:07 PM EDT
Hi Everyone,
No "real" update for you tonight, just wanted to say that I'm hanging in there but having a bit of a rough patch trying to finish moving and starting my job (no real school happening yet at the preschool, just set-up and home visits and meetings, etc.) and, in some way, recovering from my vacation. I spent Monday in bed for much of the day and then overdoing it with packing so I'm not feeling so great. But I'll get a "real" update together soon and hopefully post some pictures of my apartment!
Hope you're all doing well and having a good first week of September!
Wednesday, August 29, 2007 9:41 PM EDT
In a world full of people
You can lose sight of it all
And the darkness inside you
Can make you feel so small."
--Kelly & Steinberg, "True Colors"
Hi Everyone,
I'm posting multiple updates at once so the first one is the most recent and I'm posting another one below this one that I wrote last week. So you might want to read the one below this one first...but you don't have to.
I'm writing this after a very long day driving down to Boston to see Dr. R (GI) and back. It wasn't a bad drive but still it was about 6 hours round trip plus the appointment and being up early and the stress of the appointment all compounded together that makes me very tired. I wanted to write something tonight, though, so it will be ready to post when I make it to town next to go online (probably tomorrow - Thursday). I guess I'll start with the appointment report since backing up to fill in the time since my last update would take a while and isn't that important (I'll write a bit about it after the appointment report, though). To sum up the appointment, things aren't looking great. Frustrating to hear. The testing that I had done showed stuff that surprised both Dr. R and I. The pH study showed a lot of reflux which I knew was going on but apparently there's a lot going on that I don't necessarily feel or realize is happening and Dr. R is surprised I'm having so much reflux given the strength of the meds I'm on to prevent the reflux (I'm on high dose Prilosec). But what surprises me more than the pH study results is the results of the gastric emptying scan (GES) which looks...well, pretty bad. I don't have the results from my last one handy (I have them at home, just not here with me in Maine) but if I remember correctly it was something just under 50�mptied at 90 minutes or something like that and somewhere around 30�mptied at 60 minutes (I'm being very general here, can't remember exact numbers at all). This one showed 31�mptied at 60 minutes and 32�mptied at 90 minutes with the impression of "stable delayed gastric emptying at 60 min with worsening of emptying at 90 min" as compared to my last scan in April of last year. This is frustrating because it means the domperidone really isn't helping the emptying even though it seems to be helping some of the symptoms (although I'm certainly still constantly dealing with symptoms). Dr. R believes the bad reflux is from the gastric emptying being so bad so our options are different than if it was just reflux from something else or for some unknown reason. So the plan of action is this: switch from Prilosec to Nexium and keep the dose of Prevacid in that he had me add after the endoscopy and see if that makes a difference in the next few weeks but also schedule a procedure where he'll do an endoscopy and inject botox into my pylorus (the bottom of my stomach) to try to make it bigger so it will empty better. If the Nexium works, I'd cancel that procedure and just wait and see how things go for a while. If the Nexium doesn't work, then I'll go forward with the procedure and see if it helps. If it does, we'd either repeat it every 4-6 months to be sure it would continue working before deciding whether to have surgery to basically permanently make the opening bigger or jump right to the surgery (I'm not for jumping to any kind of surgery so we'll see how the injections go and how bad it is). If neither of these plans (the Nexium or the procedure) works, well...then we're in trouble (pretty much exactly what Dr. R said). So I just hope and pray that either the Nexium works (wouldn't that be great?) or the procedure can be done soon, won't be bad, and will help! He said he wouldn't want to do something surgical to just treat the reflux since we're pretty sure we know the cause and doing something like a fundiplocation (sp?) wouldn't really fix the problem. Oh, and the results of all the biopsies from the endoscopy were normal (some good news!) so there's no permanent damage which is part of the whole reason for this plan of action versus another directed just at the reflux.
So that was the appointment in a nutshell. Discouraging and frustrating for me to hear all of this and know the results of these tests. I really thought the GES was going to be better and that there was going to be a better solution, or at least better options, than what we seem to be left with right now. Dr. R talked about upping my Domperidone dosage but he doesn't want to do that because then we get into side effect territory and we really want to avoid that if at all possible. After the appointment I felt really discouraged and upset and I wasn't quite sure why I was so upset. I hadn't expected things to be fine, I was expecting some of these results to be as they were, and when I had the time (on the long car ride home) to really think about it all and sort through why I was feeling so discouraged and upset I realized it really was because of the GES and there not seeming to be better options than injecting botox into my stomach and possibly having surgery to permanently make my pylorus bigger. I'm just so sick of all of this. I'm now on the verge of beginning what was supposed to be more of a "normal" life with an apartment and a job and everything and things were supposed to be staying stable, things were supposed to stay good, I was supposed to be done with major procedures at least for right now and less than a week before beginning my new job I have to acknowledge that the medical stuff is still very much in the forefront of my life. I'm just so sick of it all. I'm sick of doctors. I'm sick of travelling a long way to have a 20 minute doctor's appointment. I'm sick of having procedures done. I'm sick of doing infusions of things just to keep me stable. I'm sick of...being sick! A lot of this probably seems obvious - who would like all of this stuff - but sometimes it hits me pretty hard, all that I'm dealing with and how much I just wish I could leave it all behind me and emerge into this new life with no attachments to that medical world aside from the "normal" problems. It could be worse. I could be dealing with a lot worse things. I'm lucky in many regards. But it's hard to consider yourself lucky when you're dealing with serious things that you shouldn't have to deal with! I'll take it in stride the best I can, though. I'll get a good night's sleep tonight and enjoy the last few days here in Maine, push aside the medical world at least until I get home again, forget as much as I can about everything that awaits me and all the possibilities. I'm definitely tired from all the driving today (although I'm so thankful for minimal traffic) and that doesn't help me deal with anything so hopefully sleep will help my whole mindset.
Now I don't much feel like going back to recount the past week so I'll do a quick summary. I've had a good time not doing a whole lot! We went to Monhegan Island on Monday which was a lot of fun but very tiring with the hiking and in the hot weather. But I had my trusty hydration pack with me and had hydration hooked up the whole time which helped a lot. And we had a really pretty sunset on Sunday night (I'll include pictures of both the sunset and Monhegan at the end of this update). Umm...not a whole lot else to update about. I finished the puzzle and Harry Potter and I've now started it again. Once I'd finished it I kept thinking about it and trying to fit in all the little details so I figured I might as well read it again right away while it's all still fresh in my mind! Tomorrow (Thursday) we're probably going for breakfast at Pemaquid Point (well, at the restaurant there) which should be good. They have great blueberry pancakes and Pemaquid Point is one of my most favorite places. Speaking of favorite places, I've been thinking a lot about how much I like it up here and I'm really feeling the pull to pursue my desire to live here in town. Of course this would be in a year or two! But I do feel like I need to live here, I need to experience it and be a part of this town in ways I'm not when I'm just here for a few weeks at a time in the summer. And if I don't do it soon, I may never do it! But that's neither here nor there, just some of my ramblings.
Well, I'm off to bed. I was about ready to fall asleep about an hour and a half ago so I'm definitely ready for bed now. But of course, here are those pictures I promised:
Thanks so much for stopping by. Please take a minute to sign the guestbook so I know you were here! And I hope you're all having a great week leading up to a nice long weekend!
Thursday, August 23, 2007 6:20 PM EDT
--Unknown
Hi Everyone,
I've actually just returned from a trip into town when I could have put up an update but I didn't have one prepared so I'll write this now and post it sometime in the next few days when I next find myself downtown with my computer. Writing an update now instead of waiting until then, though, is better insurance that I'll write one at all!
I'm definitely enjoying the time here in Maine, although the weather has turned to clouds and now it's supposed to get hotter with thunderstorms for the next few days. It's still nice here with the clouds, though, and is good weather for sinking into Harry Potter or spending lots of time working on the puzzle of an African watering hole that my brother and I have been working in. It's been an interesting mix of activities - when I'm working on the puzzle I tend to be thinking a lot about Harry Potter and when I'm reading Harry Potter I'm thinking about the puzzle and often seeing puzzle pieces on the page for a while! Harry Potter is good but I find that I have to put it down from time to time because I get mad at some turn of events or another. I haven't been feeling wonderful but now that I'm done with my week of Flagyl hopefully I'll start to rebound a bit at least with my energy level (the Flagyl always takes a bit more than usual out of me). The trip to town on Monday when I last posted an update took a lot out of me. We had to park a ways away from the cafe (where we go to get internet access) and it was hot and we made stops at the natural foods store and the grocery store. By the end of the trip I was feeling pretty awful and had to spend a few hours lying on the couch running extra fluids and watching some DVDs before I felt well enough to get up and rejoin my dad and brother. It's weird when stuff like that happens because sometimes I can manage alright with situations like that but other times it's like a crash and burn before I know what's hit me. I thought it would be a quick recovery and that one episode of Friends would probably be enough but I ended up watching two episodes of Friends and two episodes of Mad About You before I felt up to being upright again. I just hate when that happens because there isn't a whole lot you can do about it but just rest and wait until it lets up a bit. The extra fluids definitely helped and I ran extra fluids the next day, too, and I'm running extras this afternoon/evening as well since I wasn't sure how I'd handle today's trip to town, although it was much shorter and the weather is much more cooperative for someone who doesn't do well with heat, not that it's really been hot here. Anyway, otherwise in health-related news there isn't a whole lot to report - my stomach isn't great but I'm managing to usually get in two semi-meals a day and some snacking in between so that's okay. Reflux is still bad even with the dose of Prevacid added in but I see Dr. R on Wednesday so hopefully he'll have some good options and helpful results from the testing then.
Switching off of the health topic, we've had some really nice sunsets here and the best we've had in a long time was on Monday night. Here are a few pictures from that sunset (I took a bunch and so did my dad):
And on Tuesday afternoon I got out for a nice kayak ride down into the channel off the lake we stay on (the channel is pretty much where we boat to when we go boating - it connects our lake to another, bigger lake). I pretty much just went partway down and found a nice little nook to paddle into and stayed in the kayak and read Harry Potter for a while. And I had a little frog friend next to me in the rock that I was next to:
And from the ride back:
Our plans for the rest of the week and weekend are shaping up with some trips planned to various places. It should be fun and even with the cloudy, stormy looking weather we'll enjoy the time here. Thanks so much for stopping by. I hope you're all having a great week so far (and weekend depending on when I manage to post this)!
Sunday, August 19, 2007 1:02 PM CDT Pictures added (finally) Wednesday 2:00 PM
Live purely. Be quiet.
Do your work with mastery.
Like the moon, come out
from behind the clouds!
Shine!"
--Buddha
Hi Everyone,
First of all, I'm so sorry for the lack of updates. I keep sitting down to start an update every few days and get side tracked by one thing or another or end up deciding I'm just too tired to manage a proper update. But now I'm on vacation (ahhh...) and can sit down here at the kitchen table and at least work at an update today. So let me back up to things since my last update on my graduation day more than two weeks ago (I can't believe that much time has really gone by).
That weekend after my graduation I drove down to Provincetown to visit Lexie and her family for the weekend. They vacation there every summer for a few weeks (much like my annual vacation to Maine) and it really is a nice place. A different kind of vacation from what I have up here in Maine - less quiet, less sitting around, more beach and boogie boarding but it was very nice and a lot of fun. I got to see downtown P-Town (for the first time, I might add, since this was my first trip there), eat some great food, have ice cream a few times (well, low fat frozen yogurt), and look in the great shops there. All in all it was a great weekend and I was sad to have to leave on Sunday but I had a to be up in Boston on Monday morning for a gastric emptying scan (lots of fun).
So on Monday I made it up there, ate my radioactive scrambled egg, and the test went alright. I don't know the results yet but based on the fact that they said I'd emptied just under 50�n the first hour (and therefore I had to stay another half hour) indicates that my stomach is working somewhat better than it was before starting on the Domperidone. Then on Tuesday it was back to art camp for the start of the last session. The kids in this last session were definitely a handful and it felt more chaotic than usual but in the end it was fun. There were certain kids that just make it all worth it when you see them up on stage at the end or when you feel like you connect with them. So, anyway, I had that Tuesday and then my theater class in the afternoon. Then art camp on Wednesday morning and over to a staff luncheon which we had to have earlier than usual (usually it's the last day or close to the last day) because one of the counselors was leaving the next day to go back to school in California. And Thursday was much like Tuesday with art camp and theater class. Then came the big moving weekend.
My dad and I ended up doing the moving by ourselves (well, my mom was there and helped with the lighter stuff but not with the big heavy things) and I have to say having to move all those things up 2 flights of stairs to my bedroom will make me think longer and harder about whether I want to stay on in this apartment for more than a year - I'm definitely not looking forward to the prospect of moving as early as next summer. But I'll cross that bridge when I come to it. The moving went well, although hot and tiring, and I got my bed, dresser, comfy chair, and boxes of other stuff moved up there. Then I made another trip up on Sunday with my bedside table, lamps and some other odds and ends. I managed to get a lot of the stuff I needed (like new lamps since my old ones are really falling apart) at Ocean State Job Lot so I have new lamps, a little rug for next to my bed (just need to get a grippy pad to go under it so it doesn't go sliding around on the hardwood floor), a standing fan which was very nice to have on Sunday, some more towels, and random other things. The moving process is feeling long and pretty chaotic what with my room at home being in disarray and things only half moved and half packed. But it will all come together in the end - there's no rush to get every last little thing moved yet. I stayed over on Sunday night to organize and just get the feel for the place a bit and I was kind of lonely at first but in the morning I was very glad I'd stayed. I was going to do an update from there but our internet was on the fritz so I couldn't. Now when I get home I have to get my TV, air conditioner, fridge, and the rest of my clothes and other odds and ends moved right away and then work on getting what's left boxed up and moved. My aunt and uncle are buying me a nice bookcase which will be very nice to have (I've never had a "real" bookcase before - just the little cheap ones we've had around the house) so I won't be fully moved in and unpacked until those are there and I can really settle in. One thing I'm nervous about with the new apartment and new roommates is how to tell my roommates about my health stuff and how much to share. They'll obviously notice something with my IV stuff so it's the kind of situation where either I need to tell them something right away or wait and let them notice all the medical stuff and ask about it (which I think they would but people don't always ask about that kind of stuff - it becomes the elephant in the room which is much worse than them just asking and knowing what's going on). Anyway, enough apartment talk. Back to my week.
On Monday I came home and babysat for just a little while in the afternoon - my last babysitting of the summer which is always kind of sad since I've become so attached to Morgan, the girl I sit for, and it's fun to get to spend time with her during the summer but then I don't see her much for the school year. But she is probably going to take one of my theater classes in the fall so that will be nice. I ended up standing around and talking to Morgan's mom in their kitchen for like an hour after I dropped her off. We were talking about my fall plans, my health stuff, etc. and it was nice. She said I should write a book about all the things I've gone through so far in my life which other people have suggested, too, so that may be a project I start on in the fall when I settle into my new routine.
Tuesday was an interesting day. I had art camp in the morning and then rushed home and headed up to Boston with my dad for my wonderful day of testing with Dr. R (GI). I had an endoscopy done and a 24 hour pH probe inserted through my nose (tons of fun). They were going to put me out completely with general anesthesia but when the anesthesia nurse came to talk to me I said no one had talked to me about that and were there other options I could choose. So I went with light conscious sedation and it wasn't the most pleasant experience but I remember the whole thing which I'm glad about. After the endoscopy (which was not much fun - it feels like it lasts much longer than it does) they went to place the pH probe and it took three tries to get it in the right place. The first time it was really really hurting my throat so they took it out and tried again. On the second try they put it in and I couldn't stop coughing but it was in and they took the x-ray to see where it was positioned. It was going into my lung! Dr. R was saying that he probably wouldn't be able to do that if he tried. Needless to say they took it out and tried again and this time it ended up in the right place. It definitely wasn't fun to have in and after a while my throat really hurt and it hurt to talk, but it wasn't that bad. And it brought about some interesting experiences. I had to go to art camp the next day with it in and carrying this computer pack with me and I was very nervous about how the kids would respond to it all. I had Michele (the director of art camp) explain to the kids a little about it before I went in and when they saw me there was no freaking out, they asked some questions about it which I tried to answer the best I could, and that was that. With the last group of kids of the morning (there are three groups of kids split up by age so there are three sessions of kids throughout the morning) I had a lot more questions but it opened up this whole discussion about their own medical experiences. One little boy said when he was little he had a hole in his heart and had to have surgery and be in the hospital for two weeks. Other kids talked about their experiences with broken bones and other various things. It was actually pretty cool. I felt like there was this connection with the kids beyond what I would usually have just teaching them theater games and it reinforced my feeling that I really would like to be a child life specialist or work as a counselor with kids who are dealing with major medical stuff. So it was a cool and really brought some positive experineces out of kind of an unpleasant situation. Anyway, Wednesday afternoon I went back up to Boston to have the probe taken out and it was weird how I still felt like it was there and like I was wearing the computer pouch across my shoulder and everything. I'll find out the results when I see Dr. R on the 29th. But I did find out some of the endoscopy results right afterwards from Dr. R and the nurse. Apparently I have a hiatal hernia, pretty severe esophagitis (Dr. R was surprised I'm on a high dose of Prilosec with the amount of stuff he saw there), and they took a bunch of biopsies which they don't expect to find anything abnormal with but we'll have to wait and see.
Okay, so Thursday I had the last day of art camp for the summer with the session three play - the kids did a great job and while things were very chaotic and it was very tiring, it was that same kind of bittersweet feeling of being done. The kids were happy to hear that things with the pH probe (not that they called it that) went well and we really had some good discussions about it. I was so happy to find that they weren't freaked out by it and it makes me feel better about the whole experience to know that it was a source of conversation with them about medical stuff in general. We had another staff luncheon that afternoon and then my theater class had their performance which went very well. The kids were really on top of things and I was so pleased with the end result as I hope they were, too. And after all that I had to pack up some overnight things and head to Connecticut to stay over at my aunt and uncle's in preperation for going to see Dr. B in NY on Friday. That appointment went okay, we're changing some things (well, mostly adding some things) and we're both pretty frustrated with the situation, but let me explain more. I'm noticing I'm doing worse since having to stop the antibiotics about a month ago. When he walked in he asked how I was doing, I said, "Not great," and he immediately said he could tell which is actually really nice to hear (if you have a chronic illness you'll understand why it's so nice to have your doctor say you DON'T look good - it means they understand and don't overlook the hints). So, we made the decision that antibiotics are needed and when I get back from Maine I'll start on IV Doxycycline which I've been on orally before (and it made me really sick) but never IV so we're hoping it will help. It's so frustrating having this one antibiotic (Primaxin) that we know works really well for me but not being able to use it because of the cost and insurance issues! And now the cheaper ones we keep trying have these horrible side effects that make us have to stop them. It's really frustrating for all of us involved. But at least Dr. B recognizes this frustration, knows how good I was doing, and is doing what he can to try to keep me as well as possible. In addition to starting up the IV Doxy, I'll be starting B-12 shots partly because I read that low alkaline phosphatase levels (mine are chronically low) can be linked to low B-12 and Dr. B said it was a reasonable thing to try to see if it would help me in any way. So I'll start that either when I get home or have it shipped up here to Maine to start while I'm here. And I'm starting up on pretty high dose MSM powder which he said can help reflux (I'm on high dose prilosec and now Dr. R had me add in a dose of prevacid at night so we're trying hard to find things to help the reflux) and will also probably help my joint pain. So we'll see how things go over the next month and re-evaluate things then.
And after the appointment I had dinner with my aunt and uncle, stayed to visit for a little while, and headed home to pack to leave for Maine the next day! Saturday (yesterday) was long with lots of packing, getting some work stuff done, going into work and fighting with the computer (seriously - it took me half an hour to open up my e-mail and get a file from it), and finally leaving and driving up to Maine with my brother. We left later than usual and got up here later than I think we've ever gotten here before but we made it. We stopped and did a little grocery shopping, had a great dinner of pasta and turkey sausage and salad (very satisfying), unpacked a bit, played a card game, and went to bed. So now we're up here for two weeks (did I mention ahhh....?) and it's supposed to be pretty nice but cool temperature wise while we're here. We'll enjoy it. And I have Harry Potter to read (so looking forward to it but I hate to start it because a) that means I'll finish it and then it will be over and b) once I start it I'm not very likely to put it down so I hate to start it when there are other things I want/need to do. But I'm sure I'll start it either today or tomorrow and be done with it in the next few days.
Before I end this I'll include some pictures from the last few weeks:
This is the dunes at P-Town
And the beach at P-Town
The lovely pH probe
And this is a picture I took while still at the hospital - I took it with my cell phone mostly so that I could see what I looked like with it in (hadn't seen myself in a mirror yet). As you can see from the two pictures, I repositioned the wire after leaving the hospital so it didn't wrap around my ear which was getting in the way of eating and drinking.
This is the little computer pack I had to carry around for the 24 hours I had the probe in. I got used to it and I think having the experience of dragging around my pump and backpack with my infusions. The art camp kids actually liked the little computer and especially that it was a teal pouch.
And last but not least, this is my summer theater class after their performance of Peggy the Pint-Sized Pirate. They really were a good group of kids and I hope to have most if not all of them in my classes again (most of them are returning students and about half of them only live here during the summer so I only have them in summer classes).
Alright, I'll try to be better about posting updates at least once a week and hopefully more like a few times a week and I may do alright with that while I'm here. I hope you're all enjoying the last of the summer (or at least the last of the summer before the school year starts up). Thanks so much for stopping by and I hope you're all having a good weekend.
Wednesday, August 8, 2007 9:20 PM EDT A "real" update will be coming soon, I promise. I've been very busy since graduation and I've been very strict with myself about heading to bed at 9pm so that most nights I'm in bed falling asleep by 10pm and it's working out better than staying up to all hours of the night and then having to get up at 7am! So I'm off to bed now, but a full update will be up by the weekend.
Hope you're all having a good week so far!
Friday, August 3, 2007 7:52 PM EDT
Graduation is not the end; it's the beginning."
~Orrin Hatch
"You are educated. Your certification is in your degree.
You may think of it as the ticket to the good life.
Let me ask you to think of an alternative.
Think of it as your ticket to change the world."
~Tom Brokaw
"The future lies before you
Like a field of driven snow,
Be careful how you tread it,
For every step will show."
~Author Unknown
"It takes courage to grow up and become who you really are."
~e.e. cummings
"Congratulations!
Today is your day.
You're off to Great Places!
You're off and away!
You have brains in your head.
You have feet in your shoes
You can steer yourself
any direction you choose.
You're on your own. And you know what you know.
And YOU are the guy who'll decide where to go."
~Dr. Seuss
This is going to be a long one today, so get yourself something to drink and settle in for a bit of a big update but one that I hope you'll stick around to read since it's been a very important day in my life. And there are pictures at the end if you make it through the whole thing (or cheat and just scroll down to the bottom).
Today was that all important day. That day when I put on the silly looking tent-like gown and square cap with the tassel that just ends up hitting you in the face when you turn your head too fast. The stupid hat didn't want to stay on my head and kept slipping around since I'd forgotten to grab the clips out of my purse that I'd packed just in case of such an occurrence but it stayed on my head when it mattered. I stood with 58 other students - undergraduate and graduate alike - and walked across that stage in front of a crowd of family and friends, mine and other people's, and took hold of the book supposedly holding the degree I have worked so hard to earn. True, I am not technically done with my degree - I have 1 pesky credit left to earn which I'll get by finishing up the online history class I began back in April and hope to finish this up in the next month or at least by the end of September. But despite that, I was there in my cap and gown going through that ceremonial part of graduating.
Over the past few months as I thought about this upcoming milestone, I often would just shrug it off and not that big a deal. I wasn't even sure if I was going to attend the graduation ceremony, considering the other option of them just sending me the degree (which is actually what they'll do when I finish the degree since I'm not 100�inished - I'm...99.25�inished (yes, I just did the math)). I decided to participate in the graduation ceremony largely because of my aunt who pushed me to take part in it, saying she would be there cheering me on, and eventually I realized that I really did want to be there in a cap and gown walking across that stage. But even when I decided I wanted to participate in the commencement ceremony I wasn't really thinking about what the graduation and the act of graduating means to me. I don't think I really thought about it that much until today.
Graduating is not just getting a diploma stating that I've completed the requirements to be considered educated to the level of a Bachelor's of Science degree in Human Development. To me it's about overcoming obstacles, persevering, not giving up even when that seemed like the best option, and learning that I really have come a long way. I've learned about Native American Literature as I also learned how to manage daily IV infusions. I've learned about statistics while learning how to commute and still have energy left to sit upright in class and take notes. I've learned about linguistics while dealing with the effects of gastroparesis and managing to keep up with schoolwork while not being able to keep up my nutritional intake. Most of all, I've learned that all along the way there were people cheering me on. I may not have realized it at the time, but they were there. Faculty at school who encouraged me, sympathized, listened, and helped me to do the best I could despite dealing with the daily difficulties of having chronic illnesses.
The Associated Vice President for Academic Services who has answered countless questions over the past 7 years and who helped me through my leave of absences and was there today to congratulate me and share in the triumph of finally making it across that stage. The Dean of Students who remembered me from my entrance interview and whose office I used every week for my Primaxin infusions last fall and was always so encouraging and supportive and was also there to congratulate me with a big hug and smile, knowing that I've gone through a lot in these past few years. Maya, my advisor and the only professor I've had at Wheelock since the spring of 2004, after which time I took a year and a half leave of absence. Maya has been so supportive and encouraging and beyond understanding, telling me to be sure I take care of myself instead of pushing me to be sure to get work done on time (although of course she also pushes me to get my work done). My past professors - especially Ulla, my psychology professor and past advisor, and Gail, my women's studies professor, both of whom were incredibly understanding and supportive and neither of whom were there today. I actually haven't heard from either of them in a few years but they were a part of this whole journey and deserve thanks for everything they have done for me, even if it was just to listen to me while I was having a difficult time. And all the other professors and instructors who helped to make my time at Wheelock meaningful and enriching. Some of the classes may not have been great, some of the professors may have been ones I could have lived without dealing with, but each of them added something to my educational experience.
And of course there are all those people who were a part of my journey in other ways. My parents who provided so much support in every way and were always encouraging, no matter what I said I wanted to do. My brother and sisters who have been there for me in one way or another through everything and my brother-in-law who may not have been part of my life when I started on this journey but has become a major supporter in the past few years. My aunt and uncle who have provided immense support through my visits with them over the past year as I've been many the monthly journey to see Dr. B in NY on my own and staying over with them. My online support groups who have been there for me through the rough patches, a few specific people who have given me so much encouragement (especially Tincup - some of you may know who I'm referring to there). The friends I've had at various times throughout the past 7 years of working through college, those who have been there through the whole time, those who have only been there for blips of it, and those who came into my life partway through and have been there for me ever since. My church family, too many people to name there, all of whom have provided me with a loving second family who support, understand, sympathize, and cheer me on.
I didn't mean for this to turn into an Emmy speech, thanking all the people who have gotten me to where I am, but it seems that I can't reflect on all of this without running through a list of everyone who has been a part of this journey with me. Seven years ago when I started at Wheelock and moved up into the dorm room that I only lived in for a semester, I don't know what I was expecting to happen. I know I was going to go into early childhood education and ended up changing my mind on that so many times that I don't really know how many majors and concentrations I had during the past 7 years, but interesting how I've come full circle and I'll be teaching at a preschool in the fall. I know I was expecting to have somewhat of a "normal" college experience - meet new friends, spread my wings of independence, take advantage of all that college has to offer, and grow. Not all of those things happened. I had anything but the "normal" college experience, although I did start out with a somewhat typical first semester and joined some clubs, the acapella group on campus, did make some new friends, and tried out those wings of independence. But soon after arriving at school, the reality of having chronic illness reared its ugly head and life changed. Since then, so much has happened and I am certainly not the same person I was back then for so many reasons and in so many ways. But I think I've grown for the better and that now I'm more compassionate, understanding, and stronger than I was back then.
Chronic illness has a way of turning the more mundane, "normal", typical, expected experiences and turning them into big accomplishments. Because not only do we (those of us with chronic illness) have to go through all the same things as our peers but we are dealing with this whole other aspect of life that drags us down, forcing us to push extra hard to get through everything. I'm not saying we necessarily deal with "more", we just deal with different things. It's all relative. But because we deal with all these...unusual things, things that most of our peers just can't understand, we (or I really should just say "I" here since I don't really claim to speak for anyone else here) experience these milestones very differently. A graduation to some may be just another occurrence they expected to happen. To others it may be a time of rejoicing and celebrating because the four years (or in some cases more than four years) in college have come to an end and the next stage of life will begin. But to those of us dealing with these debilitating illnesses everyday, things like graduation begin to turn into other kinds of events. Not just milestones to be celebrated, but, at least for me, it's a kind of "Take that!" statement to the diseases that have caused so many more obstacles that I have had to overcome.
At this point I really do feel like I'm rambling. I am trying to say something profound here and I don't think I'm succeeding. I'm trying to convey the feelings I had today as I sat there in the theater at Wheelock College waiting to get up and walk across that stage. I was hit not only with the happiness and excitement of the whole event, but I was hit with waves of overwhelming emotion whenever I thought about all I have gone through in the last seven years. I have gone through times when I really thought I was going to just give up on my Bachelor's degree and choose a different path because getting those last requirements done just seemed impossible given the kind of daily health struggles I was faced with. I have gone through time when I've managed to still continue with classes despite...well, difficult circumstances and come through the other side.
I seem to have trouble really being proud of myself. Somehow I feel unworthy of celebrations, like what I've accomplished (and not just in this instance) is not that amazing and is just something that's expected of me. But I am learning. I am learning to celebrate myself. I am learning to realize just how difficult it's been to make it through all of the...stuff I've been through and manage to accomplish all that I've accomplished. I am learning to take people's congratulatory words and really believe that they are proud of me, that I really have done a good job with all that I've managed to do, and that I am worthy of some praise and celebration.
Anyway, all in all it was quite a day. And of course I have some pictures. There aren't any pictures of me actually walking across the stage because of some confusion about whether I was getting a B.A. or B.S. (I got a B.S., my family thought I was getting a B.A. and they didn't have a program so they didn't have the camera ready when I was up on stage). But there are pictures from after the ceremony.
Maya, my advisor, and me
My dad, me, and my mom
My brother (Patrick), me, and my sister (Meg)
My aunt (Deborah), me, and my mom
And the whole family (Maya took the picture)
That's it, my big graduation update. I hope some of you have made it through the whole thing, or at least scrolled down this far to see the pictures. Things have a way of changing, but as one of the quotes all the way up at the top of this update says, graduation is not the end, it's a beginning. And now I move onto the next chapter in my life (and finish up that online history class), I move into my apartment, I start my job in September after two weeks on vacation in Maine. Life has a way of moving forward regardless of whether we're ready to move on with it. I've learned that things do change, and it's not so scary. So bring on life!
I'll leave you with a few more quotes (yes, I'm heavy on the quotes today). I hope you have all had a good Friday and are looking forward to a nice weekend (I know I am - I get to go down to Cape Cod to spend tomorrow and Sunday with the awesome Lexie and her family which I'm really looking forward to. So I wish you all a happy weekend and urge you to celebrate anything you can, because sometimes the little things are more important and meaningful than what many people would think of as the "big" things.
~Susan B. Anthony
"Our deepest fear is not that we are inadequate.
Our deepest fear is that we are powerful beyond measure.
It is our light, not our darkness that most frightens us.
We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous?
Actually, who are you not to be?
You are a child of God. Your playing small does not serve the world.
There is nothing enlightened about shrinking so that other people won't feel insecure around you.
We are all meant to shine, as children do.
We were born to make manifest the glory of God that is within us.
It is not just in some of us; it is in everyone.
And as we let our own light shine, we unconsciously give other people permission to do the same.
As we are liberated from our own fear, our presence automatically liberates others."
~Marianne Williamson
Monday, July 30, 2007 12:31 PM EDT
Sometimes you're the bug."
--Mark Knoffler
I just wanted to write something quickly to say that I am having a really rough day today. I think the heat and humidity combined with me not getting enough sleep and being slammed with some medical issues is just becoming too much. I've been in a good place with everything for a while and it's so frustrating when I can feel the rug being pulled out from under me. This is in reference to finding out some things about my insurance company not having been covering my hydration for the last, I don't know how many months. And just finding out about this today! I've continued getting the supplies under the impression that they are all covered and now I'm finding out that they are not getting covered and it is very possible I will not be able to continue with any of this beyond a point in the near future unless my insurance company changes its mind.
I'm just so frustrated and scared and angry about all of this. THIS IS MY LIFE! And I want to be able to LIVE it the best I can! And some people sitting up in their offices are deciding on what terms I'll get to live it and how much I'll be able to do. Without the hydration...I don't want to think about how I'd be feeling on a daily basis without it because it has been one of the few things that has kept me from crashing and burning on many occasions. Yes, I could continue to get it by paying out of pocket, but that is not something I'm willing to let my parents do, not with all the stuff I'm getting in the IVs. Things were going so well and now...well, now I'm back to that scary place of not knowing at all what will happen.
And along with that I had a very frustrating call with Dr. R's office trying to get an appointment and/or get the testing scheduled that he ordered back in early May. I had to take an appointment smack in the middle of the second week I'll be in Maine in August so I'm going to have to drive down to Boston for the day for a stupid doctor's appointment but with the way things have been with my stomach and gastroparesis lately I really can't wait until the next available appointment in October! And I just got a call back from them about the testing and there are no orders in my chart for the tests that he ordered almost 3 months ago! I don't know why all this is getting dumped on me today, the day I also have to drive up to Boston to pick up my graduation tickets (what is supposed to be a really good week is turning into a rotten one) and I have to square some things away with the registrar which I'm sure will bring more stress.
The heat and humidity, I'll blame them for a lot of these meltdowns. Extra fluids are becoming necessary for me just to be able to be upright and walking around and it's really scary that I'm crashing so badly right now. Early bedtime tonight for sure (thinking 9pm if I can manage it). Any strength or good energy anyone could send my way would be greatly appreciated.
Addition 12:54 PM EDT
Just as I was writing the above update, I also wrote an e-mail to Dr. R (thank goodness for him having e-mail) about all the problems with the testing scheduling and he e-mailed back right away that we'd get it scheduled and he's sorry for the inconvenience. I know none of this is his fault, it's his office's fault and thank goodness he responded so quickly. At least one thing I don't have to worry about quite as much anymore. Still needing some good insurance thoughts or a major miracle to get me everything I need to get at least for a while longer.
Saturday, July 28, 2007 11:59 PM EDT
--Henry Drummond
Hi Everyone,
I was going to update on Thursday when my weekly lab results came in but I kept getting sidetracked. Then I was going to update yesterday but again I got sidetracked (a bit more on why in a minute). So now I'm finally updating! First of all, my weekly labs are not looking very good. I'm anemic with low red cell count, hemoglobin, hematocrit (which isn't usually low for me), ferritin, and total protein although my actual iron level is looking pretty good (very odd, but maybe there's a reason for it that I just don't know about?). My alkaline phosphatase is also in the toilet - not just low but lower than I remember seeing it in a very long time, perhaps the lowest ever. I did a little reading on it and I'm a bit suspicious that I may have a B12 deficiency so I'll put that down on my list of things to talk to Dr. B about in a few weeks. Anyway, the labs either reflect my feeling so rotten or explain it a bit. I've started on the iron supplement so hopefully that will help the anemia. We'll see how my labs look in the next few weeks. In other health areas I'm still feeling pretty rotten - really worn out, tired, headaches, joint stuff, stomach issues, etc. Nothing too out of the ordinary but still not fun to deal with. And with some hotter, more humid weather hitting us now I'm definitely not at my best but I've been running extra fluids pretty much everyday and that seems to help.
On Thursday night I went with my dad, sister, some of her friends, my brother, his girlfriend, and some of their friends to see the midnight release showing of The Simpsons Movie which was funny but a midnight showing is not the best idea for me - I was falling asleep a bit in the middle of the movie and it's thrown off my sleep schedule now. Thankfully, though, I could sleep in a bit on Friday morning before getting up and going babysitting. I'd been talking to Morgan (the girl I sit for) about how I felt I needed to get a Webkinz because it seems to be the new fad and all the kids at art camp and in my theater classes have been talking about them for a while now. So Morgan decided that she needed to go with me to pick one out and Friday we decided to do that before going to the beach. Well, we didn't make it to the beach. We went to the local toy store with the hope they'd have some but the possible plan to head towards Dartmouth and hit all the possible places on the way. They did have some and even two kinds of frogs - I'd decided I probably wanted a frog (they don't have penguins which I think is a big mistake on their part). So I got a bullfrog and named him Paddy (as in lily pads) and Morgan and I came back to my house and spent a few hours with my laptop in the living room and her showing me how to play a lot of the games and showing me around the online world of Webkinz (if you have no idea what they are, go to the website - it at least has a little info about them). We jumped on the trampoline in my back yard and went for a walk to the bogs and generally had a nice afternoon together. She really is a pretty cool kid and now that she's getting older it's not as much of a chore to look after her and spend afternoons with her. She was very concerned when I mentioned a few weeks ago that I was moving to Boston and not sure what I'd be doing next summer. She said, "But you'll still be around so I can see you, right?" And she really wants me to be able to sit for her next summer. It really is amazing sometimes the affect we have on other people without really thinking about it. I've been babysitting for her every summer since she was 2 1/2, now she's 9 1/2 so I've been with her for most of her life (this is the 8th summer I've been sitting for her) and while I don't always think that the few afternoons a week we spend together are meaningful apparently I have had an impact on her, at least to the point of her wanting to keep spending time with me. So as I make my decisions of what to do next summer I'll have to keep in mind that a then 10 1/2 year old will be wanting to spend some afternoons with me.
Today I went up to my apartment to get my keys and take some (very detailed) measurements. I got to meet the other two roommates that I hadn't met before and I think it's going to be a good year and we'll all get along well. The room looks good, needs a little painting attention but should be a great room. Tonight I made a detailed diagram of the room and little scale pieces of paper to represent the pieces of furniture I'll be bringing with me to try to figure out what I can fit there, where I should put everything, and what I should plan on leaving at home (and what I need to buy for the room). Things look like they'll fit nicely and I'm excited to start getting things together to move up there and get the room set up!
Tomorrow I can sleep in (thank goodness) and the only plan for the day is to take tickets for the play at work (and see the play) and spend the rest of the day resting. I've been spending a fair amount of time on Webkinz World getting to know the games and setting up Paddy's "house" with some furniture, getting him food and clothes, and just having some fun. It's pretty cool and fun. Monday I have to go up to school to pick up my graduation tickets (I was supposed to do it last Monday when I was up near there for my appointment with Dr. H but I completely forgot) and talk to the registrar about my credits and actual graduation date (although I'll be participating in the August graduation this Friday I won't technically be graduating for a little while since I have to finish up the history class online that I'm still in the middle of). Oh, and I got my cap and gown in the mail on Thursday! Exciting! Umm...nothing much more to say tonight. This coming week I don't have any doctor's appointments but I really need to call Dr. R's (GI) office to make an appointment since the whole scheduling of the tests completely fell through (his office really dropped the ball there). I actually don't have any doctor's appointments for a few weeks until I see Dr. B on the 17th. I'll do my amino acid infusion tomorrow afternoon (I'm juggling around the days a little bit) and probably continue with the extra fluids for a few more days to try to stabilize myself a bit.
Okay, I'm heading to bed now and hopefully I'll get a lot of good, quality sleep tonight! Thanks so much for stopping by and I hope you're all having a good weekend.
Wednesday, July 25, 2007 8:32 PM EDT
muffling pain and thought together in the merciful dark."
--Mary Stewart
Hi Everyone,
I'm trying to keep up with a somewhat regular updating schedule so here I am again tonight writing a little something. The past few days have been kind of rough in some ways but I'm doing alright. Yesterday's first day of the second session of art camp wasn't the best first day - better than the first day of the last session which I forgot to say before was quite a difficult day for a few of us staff members as we learned that one of our campers had just passed away from cancer. She was supposed to attend the first session with her sister but passed the Saturday before and her sister still came to camp. The girl who died was one of those sparkling lights, a great kid who just loved to be involved and very enthusiastic. It was a rough day and the whole session was kind of clouded for me (and probably also for Michele, the current camp director who I'm friends with) because of her death but we dealt with it the best we could and onward we go with our own lives, remembering that those who have left us are never really gone from our lives and their light and spirits can live on in our own lives if we choose to live them well. Anyway, so this session started better but the kids yesterday seemed to not be very into doing things so it took that much more effort on my part to get them involved. I also was exhausted from the moment I dragged myself out of bed. After camp I stuck around to do some administrative stuff and run a few errands, had a quick rest at home (not so much a rest as getting things ready for my afternoon theater class), and then headed back to work to teach my theater class. That went fine - it was a small class with 3 of the 9 kids missing but we managed alright. And last night I finally succeeded in going to bed early! I started heading to bed at 9pm and was in bed and falling asleep at 10pm. I noticed a big difference when I had to get up this morning so I'll be heading to bed early again tonight. Art camp today was fine, easier than yesterday, and I babysat afterwards. We went to the beach for a little while and then to Morgan's (the girl I sit for) friend's house for the rest of the afternoon to swim in her pool and hang out which was nice. But it was a tiring day. I got a shower when I got home, had some dinner, and I'm about to access Winnie (my port), hook up my overnight infusions, and head to bed (yes, even earlier than last night!).
I had an interesting time at the beach when we first got there today. A friend from high school, Kristiana, was there for the afternoon to hang out while home visiting her family for a week. I hadn't talked to or seen her for quite a few years, I can't remember exactly when it was that I saw her last, so we caught up a bit and I was faced with that awkward situation of saying that I'm just graduating now and about to start my "real" job while there talking to an old friend who graduated "on time" 3 years ago and now has been working at a "real" job since then. She knows of my struggles with Lyme but it's that kind of situation where people think you get better and get on with your life. I mean, she didn't say anything about me taking so long to finish school and I don't know if she even thought anything about it but since I haven't seen or talked to her in such a long time she really doesn't know what the past few years have been like for me. I'm sure it's more of my own self-consciousness about having taken 7 years to finish school and still living at home and working at the same summer jobs I've been working at since I was in high school than other people being judgmental about it all, but it's still like that whap in the face of, "See? THIS is what you were SUPPOSED to be doing at this point in your life!" I'm so excited and happy about finally graduating, but at the same time there's still that part of me that is very aware of my own previous expectations for myself and how I have not lived up to these expectations in the way I thought I would. And the very real fact that so many of my friends from high school are living their real lives - getting married, having kids (I just found out one of my other high school friends just had a little girl about a month ago!), graduating a long time ago, many graduating from grad school now, living away from home for a long time now, and having those "real" jobs. And there is that feeling of having been left behind somehow. My friends from this area really aren't here anymore and I very rarely, if ever, talk to or see them with the exception of a few that I still try to keep in contact with. My best friends are people who live hours away and who I talk to online the majority of the time and they all have chronic illnesses like mine. In that world, the world of chronic illness and specifically YOUNG people with chronic illness, I feel understood and people are more often impressed with how much I've managed to accomplish rather than noticing my shortcomings and I am more comfortable in that world. But I hesitate to call that my world because it really isn't a whole world, it's just a part of it. I want to be in the whole world. Maybe once I've graduated, moved away from home, and started my "real" job I'll feel less different from the people I feel so separate from now. But all this makes me think about how I really do feel different. Maybe it's not a bad thing, but it's just a fact. It's just been interesting to be thinking about all of this today and kind of be faced with these things and feelings about myself and my life.
Okay, enough about all that. Health-wise I'm doing...okay. That may be a lie, but that's what I'll say now. I did labs today including some iron labs so we'll see what all that shows - I started on the iron supplement today and I'm hoping that along with the amino acid infusions will start to give me some more energy. Headaches still coming and going (but so far I'm not reduced to taking more meds for them), joint pain becoming more frequent, stomach stuff about the same, still really tired even with the extra sleep last night (probably about 9 hours or close to it - I'm going for 10 hours tonight which is a good amount for me), and feeling the effects of having been out in the sun for a lot of the day. I was feeling pretty sick when I got home - dizzy, tired, headache, short of breath, shaky, queasy. I had to sit for pretty much my whole shower tonight but overnight I'll probably run extra fluids and hopefully rebound tomorrow. Tomorrow I have art camp and my theater class. Then babysitting on Friday (Morgan has decided she's going to go with me that day to help me pick out a Web Kinz (they're the new fad among the kids I teach so I decided I needed to get one and see what all the hype is about and understand it better) so we'll do that and then probably go to the beach for a little while afterwards - hopefully not too tiring a day.
Okay, off to access Winnie (my port) and get ready for bed. Thanks so much for stopping by and I hope you're all having a good week.
Monday, July 23, 2007 10:16 PM EDT
Expect your prayers to be answered in wondrous ways.
The dry seasons in life do not last.
The spring rains will come again."
--Sarah Ban Breathnach
Hi Everyone,
On to another week busy with stuff but hopefully a little more restful than last week. My weekend was pretty good - my friend Heather and I went to one of the Harry potter release parties for the seventh book which was fun but tiring and not quite as exciting as we were hoping it would be. But I'm still glad I went. And even though I have the book I'm purposely not reading it right now because I know I don't really have the time to savor and enjoy it so I'm saving it for when I'm in Maine in 3 1/2 weeks - then I can really sink into it and fully enjoy it. And it also gives me a chance to re-read (or rather re-listen to) the sixth book to refresh my memory of what happens in it. Heather stayed over here on Saturday night which was fun but we didn't go to sleep until very late so I was pretty worn out for the rest of the weekend. Thankfully I opted to take Sunday to just completely rest so I stayed in bed and on the couch in the living room all day which was very necessary. But I'm still feeling really worn out and just not completely myself. Today I had to be up early and head up to Dr. H's (PCP) office for what I knew would be kind of a long day. I had my appointment with her which was pretty good. Let me see if I can run down what we talked about/decided. My labs are looking okay liver-wise but not great in other areas - my hemoglobin is low, red cells were low last week and are still on the low side, BUN is low, and I'm showing other signs of iron deficiency so I have to start back on iron (not happy about more pills added back in). My alkaline phosphatase is also back to being on the low end of my low end which is pretty darn low and it's frustrating not knowing why it's so low again after being good for quite a while (I think the improvement from the Primaxin helped to keep it up in a good range for me). She doesn't have any different ideas as far as antibiotic treatment right now and she understands and sympathizes with the frustration of having to switch around between new meds because of side effects. That's pretty much the appointment summed up. After that I sat in the infusion room while I hooked up and ran my first amino acid infusion which went fine, except for a little nausea that could have been from the infusion (although probably not) or just a "normal" wave of nausea, so hard to tell. And I got to chat with some nice people and the nurse so it wasn't too bad, although it was about 2 hours in there. In total I was at Dr. H's office for almost 4 hours but it wasn't too bad. Then I went over to pick up my Domperidone from my compounding pharmacy and stopped at Whole Foods before heading home. Tomorrow it's on to session two of art camp and I just hope this session is a little easier than the last one!
Health-wise I'm struggling a bit right now, perhaps more than I let even myself realize because it's scary to think about what it might mean if I'm really in a major crash versus a minor, short-term one. Where is the line between positive thinking and denying reality? Not that I think I'm in a major crash that I won't come out of on my own given more sleep and just generally a chance to take better care of myself, but I'm definitely not doing as well as I had been. Some of it might be fatigue from the week of Flagyl that I just finished up tonight (thank goodness - no more sleep schedule determined at least in part by those infusions) but a lot of it is probably just not getting enough sleep. My stomach is having issues, I'm having headaches and more brain fog, and more muscle soreness than I've had in the last few months. Hopefully it's all a matter of catching up on sleep and things will get better. With that said, I'm going to head to bed.
Thanks so much for stopping by and I hope you're all having a good week.
Thursday, July 19, 2007 11:13 PM EDT
And to make an end is to make a beginning.
The end is where we start from."
-T. S. Eliot
Hi Everyone,
Yes, another update. I must be on some kind of roll with them now! This will be quick since my infusions are almost done so I can go to bed soon. The biggest piece of news to report about today is that I'm officially taking part in the graduation ceremony on August 3rd. The paperwork and R.S.V.P. card came while I was away on my big travels and I didn't manage to really sit down and look at it until this week when I found that the R.S.V.P. was supposed to be in by last Friday and I obviously hadn't gotten it in by then. I sent an e-mail to someone in the student life office but didn't hear anything back so I called the office today and I'm not too late to register to participate and I was able to get extra tickets (it's held inside so you only have a certain number of tickets for people to come) so that some people other than my parents can come (basically my brother, sister, aunt, and uncle but I'm not sure if all of them are going to want to or be able to come). Now, I won't be officially graduated until I finish the online history class that I have yet to continue working on but I technically have until December to finish it according to the guidelines in the graduation letter. So I'll finish, just after graduation.
Health-wise things aren't great but they're not horrible. I'm doing relatively well considering how much I've been doing and how little sleep I've been getting so I guess the continued crash is to be expected. And speaking of sleep, my infusions are done so I'm going to head to bed. Thanks so much for stopping by and I hope you're all having a good week.
Tuesday, July 17, 2007 10:30 PM EDT
--Anne B. Sekel
Hi Everyone,
Wow! Another update so soon! Yeah, kind of amazing, but I felt like writing something quickly before I get ready for bed with the intent to actually get an adequate amount of sleep tonight (notice I don't say good amount of sleep because the bedtime for that happening has come and gone). I'm definitely feeling the affects of not getting to sleep early enough. Last night I got about 6 hours of sleep, if that, because I couldn't fall asleep and I didn't even start trying to fall asleep until about midnight and had to be awake at 7am to hook up my morning IV Flagyl infusion (yep, it's that week of the month already). GI-wise I'm struggling a bit - eating is making me feel sick which isn't really a new thing, just worse right now than it usually is. But hopefully it will ease up soon. And today I've been having a lot of tingling and numbness in my hands and fingers which I do have off and on but haven't had this bad in a while.
Oh, and a little quick update about my appointment with Dr. B yesterday. Overall it went well. Unfortunately, I'm having what appears to be a pretty bad side effect from the IV Levaquin - bad muscle pain which could be tendon pain, a known side effect from Levaquin - so I have to stop that one. We have another IV antibiotic as a good option but first we're going to take a little break and hope that I don't crash. If I do start to get worse, I'll call Dr. B right away and he'll get me on IV Doxycycline quickly. It's so frustrating to be struggling to find a relatively inexpensive IV antibiotic that I can tolerate with minimal side effects and all because insurance won't cover the IV Primaxin which I was doing so well with and didn't have bad side effects from! Grr! Oh well, I'll just hope things go alright for the next few weeks. I'll keep doing the week of IV Flagyl (I just started it last night) and continue with the other meds I'm on. Other than that, nothing much changing. I had a nice short stop over at my aunt and uncle's house for dinner and got to catch up with them a bit which was nice. And then I worked today - a long day and it didn't start out great as I got to work and went to unhook my IV hydration that was just finishing up after running overnight only to find I didn't have any flushes with me so I had to turn around and come home to get them and go back to work. I wasn't late but I was planning on being there early to do the few administrative things that needed to be done. Oh well, hopefully tomorrow will be better.
Okay, now I'm off to get ready for bed and hopefully get to sleep relatively easily tonight. Thanks so much for stopping by and I hope you all had a good weekend.
Sunday, July 15, 2007 11:45 PM EDT
What appears bad manners, an ill temper or cynicism
Is always a sign of things no ears have heard, no eyes have seen.
You do not know what wars are going on down there where the spirit meets the bone."
--Miller Williams
Hi Everyone,
I can't believe it's been much more than a week since my last update! Shame on me! But I do have some good excuses - no internet connection in the rooms at the hotel the chill was at, crashing from the chill, starting work this week, crashing from work, and now being in Connecticut visiting my friend Heather for the weekend before I go to see Dr. B in NY tomorrow. This will be a shortish summary of the last week and a half.
The chill was a lot of fun but I crashed a lot from all the traveling and pushing myself while in Maine and Tennessee (and at the chill to a lesser extent). I was really tired and spent more time resting than is usual for me but I really needed it and I had the chance to crash instead of continuing to push myself so I guess it was easier for me to let myself crash (I know, it's a little odd that I can choose when I let myself crash, but if I keep pushing through for too long the crash will just be worse and worse when it comes). I got to see some of my wonderful friends from DYNA and have a good time just hanging out (a lot of people seemed to be crashing so we kind of crashed together). That more or less sums up the weekend - nothing overly exciting, just hanging out mostly and resting and trying to keep my stomach in line and deal with other crashy symptoms. The drive to and from the chill were pretty uneventful - we made great time going down there and it didn't take too long to get home. And on the night of the 4th we got to see some fireworks from our hotel room which was nice and I blew out a birthday match that night (thanks to my friends Heather and Jordan - they couldn't find birthday candles).
We got back to Heather's on Sunday night and on Monday my mom came and picked me up (I didn't have a car here since I flew up from Tennessee). I rested a little bit on Monday but not as much as I should have to be able to get up and go to work early on Tuesday. The first session of art camp and the summer session of my theater class both started on Tuesday and I had a voice lesson in between them so it was a long day. By Wednesday I was having major problems getting up to go to work and that continued through Thursday which was the last day of the week of art camp and theater. The director of art camp (who I'm also friends with) could tell I wasn't quite myself since I was getting to work later than I usually do and she told me to rest over the weekend, which I've kind of been able to do. Friday I babysat for Morgan, the girl I've been sitting for every summer since she was 2 1/2 (she's 9 1/2 this summer), and we went to the beach with one of her friends and then went over to her friend's house to play in their pool. It was a fun afternoon but kind of tiring since I was in the sun for a long time and in and out of the pool playing with them.
I was able to sleep in a bit on Saturday before packing up and heading to CT to visit Heather (like we haven't spent enough time together lately - it's just nice to have a friend semi-close to hang out with). We haven't done much - just hanging out, we rented a video tonight and we've just been relaxing and eating lots of salty snacks. Tomorrow I head to NY to see Dr. B and then home with a stop off at my aunt and uncle's house for dinner. And then its on to the next week of work with Art Camp Tuesday, Wednesday, and Thursday mornings, theater class on Tuesday and Thursday afternoons, and babysitting (tentatively) on Wednesday and Friday afternoons. And Heather and I are tentatively planning on going to a midnight release party for the seventh Harry Potter book (not in CT, closer to me) which should be fun. I haven't been to any of the release parties for the previous books so it will be fun to do it for the last one.
So that's the summary of what I've been doing since my last update. Health-wise I'm hanging in there. I'm having more joint/muscle/tendon pain which could be a side effect from the IV antibiotic I'm currently on (I just can't find one that won't cause bad side effects other than the one I was on for a long time and is just too expensive not knowing if insurance will cover it) or could be a herxheimer reaction to the antibiotic or could just be part of my crashing. I'm really tired lately and not getting enough sleep to recover from everything but I'm managing alright. And my stomach is causing problems (along with my appetite being wacky) but I'm managing alright with that, just paying more for trying to eat "real" food too frequently (I'm down to probably 2 small meals a day if it's a good day and some snacks thrown in - at least I'm trying to keep up my fluids). I'll have a few things to talk to Dr. B about tomorrow and hopefully we'll be able to figure out what could be a good plan for the next few months. I don't know how my labs have been because I haven't gotten the results in the last few weeks (my dad's fax machine is having issues) but I'll find out tomorrow. Oh, and one major health-related thing is that apparently my dad's company decided to change their insurance starting August 1st - not nearly enough notice to figure things out - which is making me freak out a bit since I was just declared a disabled dependant so I could stay on the current insurance for at least another year and I don't know if it will transfer to the new insurance, although it's kind of staying with the same insurance just a little different company (if it makes sense). It bothers me when companies (not insurance companies, I mean like the company my dad works for) make these kinds of decisions on such short notice - they often don't seem to realize or imagine that there are people dealing with chronic or severe illnesses for whom insurance coverage is a huge deal and stressor. The up side of this, though, is that a new insurance company may actually pick up some more IV antibiotics (we're not sure about my current insurance covering the IVs). Oh, and I'll be starting on IV amino acids 3 times a week beginning next week when I see Dr. H (PCP) on Monday. So kind of a lot of health stuff but mostly because of crashing so at least I know why I'm probably feeling run down and more cruddy than usual.
Oh, and did you realize that today (July 15th - the 3rd Sunday in July) is National Ice Cream Day? Heather and I are going to have some ice cream to celebrate! I hope you all had your ice cream fix today! Okay, so now I'm caught up! I'll try to be better about updating more frequently, but with the busy summer I have it might become just once a week (I'll try for at least twice a week - I'm thinking Wednesday and Sunday). Thanks so much for stopping by and I hope you all had a good weekend.
Friday, July 13, 2007 8:48 AM EDT
An update will be coming soon, I promise! Hopefully later tonight or tomorrow morning (I'm working on it so it should be done somewhat soon). Check back this weekend to hear about the rest of my travels and everything else going on!
Wednesday, July 4, 2007 11:08 AM EDT
Tuesday, July 3, 2007 6:22 PM EDT
--Herman Melville
Hi Everyone,
This won't be a very long update but I wanted to write something before I head off on the next leg of my travels tomorrow when I head down to the DYNA Summer Chill with my friend Heather and her mom. My time in Tennessee was wonderful and I'll post a few pictures at the end of this update so you can see some of the wonderful people who feel like a second family to me even though I see them very infrequently (it had been almost 3 years since I'd seen them and 6 years since I'd been down there visiting). I had a busy time there with lots of wedding preperations, then the wedding itself on Saturday, brunch and a movie on Sunday, and a nice visit with Katie and her little daughter Annabelle on Monday (Katie is my older sister, Sarah Kate's age - they were born 4 days apart). I didn't rest as much as I maybe should have but I had a really great time and it was worth any kind of crash I have because of it. It's amazing to me how there are people who I rarely see or talk to but who I just feel comfortable around. When I'm there with them (or they're up visiting us) it's like no time has passed or at least the time that has passed is easy to catch up on. I moved from Tennessee when I was 3 and although I did see them every few years when I was little the visits were still not nearly close enough together but somehow we have this connection that always surprises me. I was so happy to get to meet Katie's daughter, Annabelle, who is 2 years old and so cute (you'll see in a few pictures in a minute). I'm the first person in my family to get to meet her which is kind of sad considering she's already 2 but that's just how life goes. I've realized a few things through the visit, though. First, I want to make a very conscious effort to keep in touch better and go visit more frequently (or get some of them to come up north to visit me). And secondly I've realized just how important it is to me to be close to Sarah Kate when she has kids so I can be there to be a constant person in their lives. Seeing how everyone was with Annabelle makes me jealous that I'm not in her life in that same way but makes me want more than ever to be there in that way for my own nieces and nephews. Now that probably won't be for at least a few more years, maybe longer, but it kind of reinforces the idea that I'll end up moving out to Oregon to be closer to my sister and brother-in-law.
So, anyway, I had to say goodbye to my wonderful second family and head up to Heather's house where I'll stay tonight and then head down to the chill in the morning (or afternoon). Hopefully the drive down will be easy, although I don't have to do the driving so I can just rest, sleep, and hang out in the car and hopefully recover a bit from my previous travels!
Before I go, here are some pictures from my time in Tennessee:
Annabelle - possibly the cutest toddler I've ever seen! (She's wearing tap shoes, too, if you didn't notice that, and she put it all on herself - she loves to dress up in hats and glasses).
Zack (my friend who got married) and Annabelle (who is his niece).
The whole family - my second family - with their new addition, Diana.
Zack and Diana after the ceremony.
Emily and Annabelle
Annabelle buttoned herself up in her dad's shirt - she's a little silly but very determined, she worked forever on those buttons (and of course her dad helped)!
Annabelle and her mommy, Katie.
And me and Katie at the wedding.
And I can't help it - here's a video of Annabelle playing peek-a-boo with Emily
Hope all those pictures didn't bog down your connection here! I hope you enjoyed them and I'll try to update again sometime in the next few days, probably with a few pictures at least (if a picture is worth a thousand words, I wonder how many words I've written!). Thanks so much for stopping by and I hope you're all having a good week so far. Oh, and Happy Fourth of July which is also Happy Birthday to Me! I will be a quarter of a century tomorrow!
Sunday, July 1, 2007 2:30 PM EDT Hi Everyone,
I'm still here - now in Tennessee visiting friends and went to my old friend Zack's wedding yesterday which was great. I will do a real update soon, just wanted to let you all know I'm doing well and enjoying my travels! Hope you're all doing well, too!
Friday, June 22, 2007 3:30 PM EDT
A new road or a secret gate..."
--J.R.R. Tolkien
Hi Everyone,
I finally got the update from last weekend about my trip and visit to Dr. Bock back up so you can find it in the journal history below the update from this week. I wanted to do a quick update to report some exciting news. I got the apartment I really liked that I saw yesterday!! I sent off the check for first and last month's rent today on my way to work and I'll get to start moving in when I get back from all my wild travels. I'm so excited and it really is going to be a great place - a good location, I liked the girl who showed me the place (I haven't met the other two roommates that are staying on but they sould very cool and like I have a lot in common with them, too). One of the best things about the apartment is the location. It is less than a mile away from the preschool where I'll be working in the fall, only a few miles down the road from a Whole Foods Market (where I often stop on the way back from seeing Dr. H, my PCP), really close to Dr. H's office, and also very easy to get to from the highway so getting home to teach my theater classes will be pretty easy (no city traffic to battle, thank goodness), and it's also very near a T stop (just a few minutes walking) so it's also easy to pop into the city. I'm really excited and feel like things are really falling into place. So I have a job and I have an apartment. It's all very exciting! It will be interesting figuring out the best way to move things and what to leave at home so I can still have a reasonable place to be living for the summer but still have stuff up at the apartment for when I want to stay up there. I'm sure I'll figure it out - I've done similar things before when I had my last apartment over the summer and was working at home.
Health-wise things are okay but I'm having to keep a close eye on my eating. I'm back to pushing Ensure and other liquid nutrition that I can work on through the day and snacking on whatever I feel like eating but I'm definitely feeling low energy so I know it's not great. Hopefully with my trips and time away from my "real life" I'll be able to eat a little better. I start the IV Levaquin tonight so hopefully that will go well. Other than that, I'm just trying to get everything packed up and organized and feeling a bit overwhelmed with all that right now which I'm sure is also affecting my energy but in about 24 hours (hopefully) I'll be up in Maine and can just rest and relax and read (I plan to re-read all 6 Harry Potter books before the 7th one comes out in July so I'm bringing the first 4 with me) and kayak and just do whatever I want! And of course work on my history work.
I'll leave you now with a picture I scanned in a few weeks ago but never posted. I said a while ago that I'd put up a picture of me and Zack, my friend who is getting married a week from tomorrow whose wedding I'm going to in Tennessee. His family has been friends with my family since before my older sister and his older sister were born and our parents actually met in lamaze class. So this picture is of his older sister Katie, Zack, me, and my older sister Sarah Kate when we were little. I have a cute picture of just Zack and I that I'll try to scan in and post before I leave, too.
Well, I'm going to do some last minute checking of my packing list and while away the last hour and a half here at work somehow. I'll try to update at least a few times from Maine and again along my travels as I'm able. And there will certainly be pictures! I hope you're all doing well and having a good week and looking forward to a good weekend!
Thursday, June 21, 2007 11:45 PM EDT
Kiss the dice, taste the rain
Like little knives upon our tongue
We can do no wrong when the lights come on
And the music plays
And we take the stage like we own the place
As if time were cheap and the night forever young"
--Beth Nielsen Chapman
Hi Everyone,
Just a quickie update tonight. I've had a few very busy days and I am realizing that my stamina right now is not where it was a few weeks ago, probably a combination of pushing too hard to do too much and being at the end of my week of IV Flagyl for this month which always seems to wear me out a bit more than the usual infusions. Yesterday I saw Dr. H (PCP) and there isn't anything too big to report there. We figured out the specifics of the amino acid infusions and I'll start those when I get back from my big traveling in a few weeks. I'm hoping that they will help me regain some energy and just help me feel better overall. We're starting out slow with them, though, to see how they go and then we'll go from there. After my appointment I stuck around in the area for a while so I could look at an apartment in the evening so I went shopping (didn't find the things I was looking for but I did get my slippers to decorate for the goofy slipper lecture at the DYNA summer chill), got something to eat, and drove around for a while. The apartment was okay but not really in an area that would be my first choice to live in - a little too city-ish for me, although it's right around the corner from where my older sister lived for a year after college. So when I got home I looked at some other listings and went up again this evening and looked at another place which was great! I'm really hoping it will work out. The only downside (which may not turn out to be a total downside) is that they want someone to move in (or at least start paying rent) this summer but I can manage that with a little help from my parents, I just won't end up saving up as much as I would otherwise from my summer jobs. So think good apartment thoughts! I also (hopefully) finished running errands to get ready for my trips and did my laundry so tomorrow I just have to pack and I'll be good to go on Saturday morning. I'm also working tomorrow so I'm just trying to be organized about getting things on a list and as organized as possible before I head to work.
Okay, I'm heading to bed until my last Flagyl infusion of the week's pulse is finished infusing. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Tuesday, June 19, 2007 10:25 PM EDT
--Arthur Schopenhauer
Hi Everyone,
Sorry, still no update from last week's appointment and adventures but I will have it up by the end of the week and I'll put it below this update so be sure to check back on Thursday or Friday for the update. I'll just let you know that the appointment with Dr. B went well and I'm switching IV antibiotics (yet again) because of side effects from the IV Zithromax. So for now I'm just doing the Zithromax every other day and I'll be switching to IV Levaquin at the end of the week. We'll see how I do with the switch.
I've spent much of the week coordinating my infusion supplies with each leg of my trip. It seems that everything is figured out pretty well so that I'll get a shipment of supplies to my house later this week to last me through the Maine portion of my trip, then a shipment will arrive in Tennessee the day before I get there to last me through that leg, a shipment will arrive in Connecticut the day I'll be getting there to hitch a ride down to the chill with my friend Heather and her mom, and then a final shipment will come to my house before I get back home from the whole trip. It's taken quite a few e-mails back and forth but everything seems set and hopefully it will all go smoothly (*knock on wood*). I'm trying to get everything else organized for the trips, too, and doing pretty well although I feel like I should be a lot busier getting things ready than I've been. The work for my history class has also fallen by the wayside for the time being as I've been busy and not feeling the greatest but I plan to get to work on that in Maine.
Over the last week I've been pretty busy with errands, working a bit, and resting (yes, resting counts as being busy since it's been necessary). Today I went out and saw the third Pirates of the Caribbean movie which was okay but I didn't like it as much as the other ones and it was quite long. I should learn that movies longer than 2 - 2 1/2 hours are ones I should wait to see on video because I get uncomfortable pretty fast in those movie theater seats. I've been on my week of IV Flagyl so that's been wearing me out quite a bit and making me feel kind of sick but usually that only lasts for a few days after the week is done (I'll be done after Thursday). Health-wise I've been worn out, not feeling great (probably at least partially from overdoing it), but not doing too badly overall. I had a rough time yesterday afternoon and evening after doing too much - mainly looking for a dress for the wedding I'm going to in Tennessee - but I've been running extra fluids and that seems to be helping along with laying low today. My labs last week looked good but this week they're not so great - my hemoglobin is a little low and after a long time of good levels of my alkaline phosphatase (which always used to be low) it's dipped into the low range. Hopefully both of those are just temporary and will come back up next week. Some of my other numbers have taken a bit of a nosedive but they're still in the normal range so I'll just keep an eye on them. At least my liver is still happy!
Okay, I'm off to hook up my last Flagyl infusion of the day and rest until I can go to bed. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Sunday, June 17, 2007 3:20 PM EDT
Sorry, apparently my big long update from yesterday got messed up and since I wrote it at work it's only saved on that computer. I'll fix it tomorrow if I can and get that long update about my appointment with Dr. B and my trip back up!
Saturday, June 16, 2007 1:30 PM EDT
To know and to trust what the heart understands
Only the ones who believe
Ever see what they dream
Ever dream what comes true"
--Beth Nielsen Chapman
Hi Everyone,
Thought it was about time for me to do an update here. I'm actually at work right now but things are pretty quiet and my boss is getting ready to leave for the rest of the afternoon so I'll be on my own until 2pm (and it may take me until then to actually finish this update since I'll probably get distracted many times). I have a number of things to update on - mainly my appointment with Dr. Bock (okay, so maybe not that many things). And my upcoming travels, too, which may result in only a few updates over the next 3-4 weeks.
I updated last on Wednesday morning before I headed off to Dr. B's so I'll pick up from there. I had a nice, scenic drive to Dr. B's office (I've been at the office in a smallish town versus in the city for my last few appointments because of the way the scheduling has worked out), ended up missing the exit because I wasn't paying attention but I had left a lot of extra time so it was fine. I spent a little while walking around downtown and had a nice time with that and then headed over to Dr. B's office and waited...and waited... (they seemed to be running a little behind) but I had a book with me and kept myself occupied. Very odd thing when I got weighed - I'm 100 ure their scale was wrong because I weighed about 10lbs. less that morning at my aunt and uncle's house and that same weight later that day when I got to Heather's house so I think it's pretty safe to assume that the doctor's office scale was wrong but I won't fuss about it. The actual visit with Dr. Bock was pretty good - some changes to meds and such, though. I told him that I was having some side effects from the IV Zithromax affecting my ears with ringing and a pressure while infusing and for a while afterwards. We don't want to risk long term affects so we're switching from the IV Zithromax to IV Levaquin (which will treat the Bartonella while the IV Zithro along with Mepron was treating Babesia), stay on the Mepron and add an herb (Artemisinin) to treat the Babesia through the month and possibly longer, and add in 3 more supplements to protect my ears and help with some other things. So I'm going to have to figure out a medication schedule when I get home today. I'll stay on the IV Zithromax until I get the Levaquin (which will probably be the beginning of the week I'm in Maine) and stick with the week of IV Flagyl each month (I just started this month's week today). And I've been talking to my infusion company and the nurse at Dr. H's (PCP) office about getting the IV amino acids set up which I will hopefully be able to start in a few weeks if not earlier, but that somewhat depends on how monitored I have to be during the first infusion. So, that's the gist of the appointment. I'll see Dr. B in a month as usual and hopefully things will be going well then.
After the appointment I stopped for a quick bite to eat (I got a burrito and ate half of it which wasn't the best idea in the world - but it was so good) and headed off to Heather's house. The drive was pretty easy and then I spent the next 2 days resting, relaxing, watching TV, IMing with Heather from across the room, and generally just hanging out which is always fun. I haven't done a whole lot else. The drive back home yesterday was uneventful but long (not longer than it should have been, it just seemed long) but there was a beautiful sunset so that made up for the length of the drive. I had a meeting this morning at work for Art Camp which starts really soon (less than a month) so I need to start seriously thinking about plays for each session and now I'm just whiling away the last hour I have to be here but it's not bad.
So my upcoming plans which are all pretty exciting. On Monday I start my voice lessons (finally) which I'm really excited about. On Wednesday I have another energy treatment and then an appointment with Dr. H (not that exciting but part of my schedule). I work on Friday and then on Saturday morning (hopefully morning) it's off to Maine! So I'm in Maine from the 23rd until the 28th, then I fly from Maine to Tennessee and stay with family friends for the wedding of my childhood (very early childhood) friend Zack. (I'll post a picture of me and him when I get home and can scan it in - there's a pretty cute picture of us when we were about 5.) I'm really looking forward to seeing all of them and being able to be at the wedding, it's just one of those things that I feel I really need to be at. So I'm there from the 28th (the wedding is the 30th) until July 3rd when I fly from Tennessee up to Connecticut and spend that night at Heather's house. Then Heather, her mom, and I drive down to the DYNA Summer Chill on the 4th (which also happens to be my birthday - we're going to have a party in the car, lol). And the chill is the 5th until the 7th, we'll head home on the 8th (I think), and then I'll get picked up at Heather's on the 9th (since I won't have a car there). Whew! And then on the 10th Art Camp starts and all my summer hecticness begins. I better be sure I don't crash too hard from all that travelling. I'm trying to organize all my infusion stuff to have some stuff shipped to Heather's house so I only have to bring enough with me to Tennessee to last for that trip. It's quite an ordeal and I only have a week to do it in! And to get everything together and packed to be gone for more than 2 weeks! I'm planning to do laundry in Tennessee so I'm not travelling with 2 weeks of clothes. I'm getting tired just thinking about all that. And at some point I need to figure out what I'll wear for the wedding and I may need to go look for a nice sun dress or something (perhaps on Monday after my voice lesson). And I'll also be trying to work on my history class. I'm exhausted already!
Okay, I think that's enough of an update. And just an FYI that I'll be posting some poems and such on my blog in the next day or two so feel free to check that out (I'll try to send out an e-mail on notify list for those of you who are on it for my blog). Now I'm going to just while away the last half hour at work. I hope you're all doing well! Thanks so much for stopping by and please take a minute to sign the guestbook so I know you were here. I hope you all have a good weekend!
Wednesday, June 13, 2007 9:26 AM EDT
--Peter Henry Abrahams
Hi Everyone,
Just a quick update today before I get dressed, packed up, and head off to Dr. B's for my appointment. It's been really nice here in Connecticut with my aunt and uncle. The most amazing thing has been watching the lightning bugs at night - they light up the back yard! Apparently it's close to their mating season (or it IS their mating season) so they're really active. My aunt came downstairs after having already gone up to bed on Monday night and took me out to show me the twinkling lights. It really was amazing and so magical. It's the fairies talking to us! Ironically I had also picked up a book called Healing with the Fairies that was on the kitchen table here on Monday afternoon/evening and started reading it and found I was drawn into it. I read it all evening which really doesn't usually happen with me - I tend to have trouble just picking up a book and getting right into it. So it was interesting that that night the fairies were out and putting on a show for us. I wish there was a way of showing it on here, but even a video just wouldn't give the feeling of it so you'll just have to imagine lightning bugs lighting up in a backyard (and the adjacent backyards) in the trees, bushes, on the grass, in flowers, EVERYWHERE! Some of the trees looked like they had Christmas lights on them because of the twinkling. Anyway, it was just really neat and I'm so glad I was here for it.
Other than that, nothing much to report on. I didn't end up going to the movies yesterday because I couldn't find the darn movie theater. Turns out the link I took from the yahoo movies page to give me directions to the theater wasn't plugging in the theater address but rather just the town so it was directing me to the center of town. I thought I was going crazy not being able to find the theater! But I just said, "Oh well" and went shopping instead. I'm having fun getting new summer clothes and clothes for work in the fall and found a really cute jean skirt and some great capris at Old Navy. And spent some time in Barnes and Noble looking through books - I found the music book for Wicked which I was so excited about and can't wait to be able to put it in front of my mom and have her try to play some of the songs (she may not be as excited about that prospect - the music that she's tried to play from it has been a bit complicated). And I got some crafty stuff at Michael's to make my goofy slippers for the DYNA Summer Chill which is proving to be a difficult task (they have to be Piglet slippers so I'm doing my best to find Piglet stuff - if anyone knows a place I could find some great Piglet stuff I'd appreciate your passing it along to me!). The rest of the afternoon I just hung out here, my aunt brought home Cracker Barrel for dinner which was really yummy and then we took a quick trip to the mall (she wanted to go to Bath and Body Works) where I found out for sure where the movie theater is (it's so easy to get to but I definitely wasn't going the right way) and we got some Ben and Jerry's (low fat frozen yogurt for me, of course) and then sat around and talked for a while. It's just been a nice visit. And now I need to hop upstairs and get dressed and packed up and head out. I'm going early so I can hang out in the cool downtown part of the town where Dr. B's office is and maybe get some lunch if my stomach is up to it (if not I'll probably get something to go to have in case I want it later) and after my appointment I'll head back into CT but a different part and go visit my friend, Heather for the rest of the week. Fun stuff!
Oh, I almost forgot, subbing at the preschool was a lot of fun, too. Tiring, but fun. The kids are great and a handful of the ones at the "camp" on Monday will be in my classroom in the fall. So excited to start that! And they may call on me again this summer if they need another sub sometime. Okay, I'm getting going. I hope you're all doing well and thanks so much for stopping by. I'd love you to sign my guestbook so I know you were here! And I hope you're all having a good week so far!
Sunday, June 10, 2007 11:47 PM EDT
--Norton Juster, The Phantom Tollbooth
Hi Everyone,
Just a quickie update tonight but I wanted to at least do a little one. The big news is that I'm done with my geology final exam! I just have a tiny bit more work to do (yes, it might seem weird to have more work after the final exam but I just have to participate in this week's discussion which is open until Wednesday). I think I did pretty well on the final but it's so hard to tell so I'll just wait until I know my grade. Now on to history work! But I'm going to take a little break from schoolwork for the next two or three days (or possibly the whole week if I'm feeling in need of more resting time). Other than that, this weekend hasn't been particularly eventful. Yesterday I worked (pretty quiet there), ran some errands including a kind of a spontaneous trip to Fashion Bug (a clothing store) where they were having a huge sale and I got a bunch of clothes for work in the fall, and spent the rest of the afternoon resting and doing stuff online. Today was RE (Religious Education) Sunday at church and my kids performed the myth they chose to present - they all did a great job and the whole service was very nice. Then I studied for my final and took the final. That pretty much sums up this weekend! I've also been spending a good amount of time on Craigslist looking for available apartments/rooms for the fall and have a number of good possibilities that I've e-mailed about. I've heard back from a few and still waiting to hear back from the rest. Overall it looks like I won't have much trouble finding a place to move into either at the beginning of August or September (I'd rather it be August if the rent isn't too high so I'll have more time to move in slowly and settle in before starting work). Health-wise things aren't too bad. My appetite still isn't great but I'm trying to make myself at least snack on things or be sipping at nutritional drinks to keep things in the okay range. I've had some joint and muscle pain today but it's not too bad. Other than that, not much to report. Tomorrow morning I'll be subbing at the preschool and I have to be there at 8:45am which means leaving by 7am to make sure I'm there on time with time built in for traffic (I'm sure I'll hit some since it will be rush hour) and after that I'm heading to Connecticut to my aunt and uncle's. I'll try to update sometime while I'm there. I plan to take myself out to the movies on Tuesday to celebrate finishing geology and Wednesday I have my appointment with Dr. B then it's off to my friend, Heather's house (also in CT) until Friday when I'll head back home. I'm all packed up and ready to go (I hope)!
Okay, I'm off to bed. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you all had a good weekend!
Friday, June 8, 2007 11:29 PM EDT
--Hazrat Inayat Khan
Hi Everyone,
Sorry for the lack of updates this week and this one is going to be short as I'm not feeling great but my infusions will be done in a half hour and then I can crash and go to bed. So, let's see, where did I leave off. Well, the voice lessons didn't end up happening this week because of some scheduling conflicts but I'll be starting soon (not next week because I'll be gone all well - more on that later - so it looks like the week after that). So on Monday I just went up to Dr. H's office in the afternoon for another energy treatment which went fine, a good time to get some school work done and this time the nurse was there so I got to talk to her and I met a Lymie friend in the treatment room. It's always so interesting to run into people I know from the internet Lyme world (this was someone I'd actually met once before). I spent the rest of Monday resting (I think, can't really remember what else I would have done). Tuesday I also spent resting and doing school work. Then Wednesday I got packed up and my dad and I went up to Maine to visit my aunt and uncle who were on vacation there. We were just there for one night and came home yesterday (Thursday) evening but it was a good visit. My aunt and I took a little trip into Boothbay Harbor to a really great store there and we all had lobster and enjoyed the peace and quiet up there. And today I was back up at Dr. H's office bright and early for another energy treatment (two this week since I won't be able to have any next week), then a quick stop at home to draw my weekly labs, and I was off to work from 1-5. I wasn't feeling great at that point but I did okay at work. This evening I finished up some school work and I'm so close to being done with my online geology class - just the final exam to go! I made the decision to take an incomplete in my history class to allow me to have extra time to finish the work so once I'm done with geology I'll dive into history and plan to be done with that by the end of the month if things go as planned.
Health-wise things have been okay - I'm worn out and don't have much of an appetite so that's not great but I'm doing alright with it. I finally got most important infusion supplies from my infusion company yesterday - almost a week after the original package was supposed to arrive (for more info on the beginnings of that fiasco see my last journal entry in the journal history). On Monday I heard back from my infusion company that they had down that two packages were shipped and hopefully the second one would arrive that day. No package. On Tuesday I had them check the Fed-Ex tracking of the package (I don't know why they didn't automatically do that on Monday when there was obviously some kind of issue with it) and they found that the box fell apart somewhere between there and here and some of the supplies were damaged so it was being returned to them. They were going to throw together the most urgent supplies into a package to be shipped overnight on Tuesday to arrive Wednesday morning so my dad and I waited around until 1pm hoping the package would arrive and eventually I just said, "forget it" and we headed up to Maine. Part way up there I got a call and found out that the package didn't actually get shipped on Tuesday due to some unexpected things coming up for the woman who handles the shipments and no one knowing the package was supposed to be put together and shipped. So it got put together and shipped on Wednesday and arrived on Thursday. I was able to start the IV Zithromax on Wednesday night because I brought a set of gravity tubing and just infused it that way and then threw the tubing out. It's frustrating that I had an almost week-long lapse in treatment because of these shipment issues but I don't seem to have slid backwards during the time off so that's good. The Zithromax seems to be going alright but it makes me feel pretty sick while it's infusing so I'm infusing it very slowly (over about 3 hours versus the 1 hour it could be infused over) and it seems to be okay. I'm enjoying not having to wake up at 6 or 7am to start infusions and being up until 11pm or midnight finishing up the last infusion. I'm on a pretty good schedule now and slowly shifting the infusion time around to find the best time to limit the restrictions it imposes, both on going out in the afternoon/evening and on going to bed. At least I'm doing the infusions at night so that the side effects of it making me feel sick and tired don't affect my whole day. As I said, my appetite isn't great and today was a struggle to find anything I felt like eating and then actually getting myself to EAT it but I'll try to stay on top of that. In the past the IV antibiotics - pretty much all of the ones I've been on - have caused a low appetite and disinterest in food and honestly it was a surprise that the Primaxin didn't seem to really do that this time around so I'm not all that shocked that the Zithro seems to be causing it.
So, tomorrow I'm working and then studying for my geology final exam. And Sunday is the RE (Religious Education) Sunday so my RE kids that I've been working with this spring will be involved in the service and that afternoon/evening I'll be taking my geology final exam (I hope). Then Monday I'm going to be subbing for the morning at the preschool I'll be working at in the fall - they had asked if I would be available to sub this month if they need me and they need me on Monday and I happen to be available which is great! A little extra money and it will give me a good first experience really working there at the school, although it's not really school right now, it's their summer camp. After that I'll head off to CT to my aunt and uncle's until Wednesday when I go to NY to see Dr. B and then off to another part of CT to visit my friend, Heather until Friday or early Saturday morning. Then it's back to work on Saturday and the last regular service of the church year on Sunday. Whew! Lots to do! I'm planning on treating myself on Tuesday to celebrate finishing geology so I'm going to take myself to the movies to see Pirates of the Carribean. And if I'm feeling really crazy, maybe I'll see TWO movies! (There's a penguin surfing movie that looks cute and I feel I have to see just because it's penguins, lol, and I want to see Shrek 3 even though I've heard mixed reviews of it.) So that's my upcoming week. I'll try to update at least quickly here and there but I may not get a "real" update in for a little while. Before I leave, here are a few pictures from the few days in Maine:
Okay, I'm off to bed. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. And a big thank you to everyone who has signed my guestbook in the last week - I'm always surprised to go check it and find a few new messages! I hope you all had a good week!
Sunday, June 3, 2007 3:27 PM EDT
Waited long to seize the day.
All things said and plenty done,
Oh I am young but I have a past.
Traveled far to find the start.
Yes I am scared and I've been burnt.
But life is short."
--Butterfly Boucher
Hi Everyone,
Okay, I think it's time for a "real" update. This past week I've been laying pretty low trying to recover from last weekend's retreat. It's been a lot of resting, sleeping, and generally trying to take it easy. I worked on Wednesday, Thursday, Friday, and Saturday but I was there on my own everyday but Wednesday so I got to kind of do my own thing and get some homework done. Other than work I didn't do a whole lot this week (it was that kind of week where I can't really remember what I did or if I did anything). I've run some errands but nothing too big. And today I went to church and had the last class with my church school group to prepare for the RE Sunday next week when they'll be doing a little play of one of the myth stories they learned about earlier in the year (before I was with them).
Health-wise things aren't great right now because of some issues with my IV shipment on Friday. Well, first of all, I finished up my Primaxin on Thursday and I was happy to have a short break while waiting for the shipment of the IV Zithromax (the antibiotic I'm switching to) to get here on Friday afternoon. So I got home from work and found a big box with some supplies but missing a WHOLE LOT of stuff, more than could have been left out by mistake, so I figured there was probably another box in the shipment that didn't make it to me on Friday. Unfortunately, among the things not in the box I DID get were the sets of IV tubing (kind of important), some of my port care supplies, and the end caps that make it possible for me to use a set of tubing for more than one infusion (I use each set for three days). And of course all this was happening at 6pm on Friday so I couldn't talk to anyone at my infusion company about it to find out what had happened. Usually I have some extra supplies but I have very few sets of tubing left and I have only one end cap. So this has left me having to be very creative with infusions and I haven't been able to start the IV Zithromax yet. I had to go without my IV hydration for a few days which wasn't great but I did get fluids last night and I'll get more tonight and tomorrow but, as I said, by being creative - not a kind of creative that would put myself in any danger of infection or anything like that, I'd never do that. And I'll get in touch with my infusion company tomorrow and figure out what happened. I may very well not be able to start the Zithromax for another few days which isn't great - we really didn't want to give me a break since that puts me in danger of slipping backwards even if it's just a very short break but I'm not upset about having much less time being hooked up to IVs! But, I do have some sets of gravity tubing that I could use in a pinch to start the Zithro tonight or tomorrow and not feel as wasteful since that tubing is much less expensive but I still hate to be wasteful. Oh well, getting the antibiotics are more important than wasting some sets of tubing for a few days.
As far as how I'm feeling, I'm really worn out and I've had some major headaches this past week but those seem to have subsided (*knock on wood*). My stomach is iffy but I'm doing okay with it. I did get in touch with Dr. R's (GI) office about scheduling the testing but it took three weeks after my appointment to finally get to talk to someone! And now it looks like I'll either have the testing (the endoscopy and pH study) done this Tuesday or not until September - kind of drastic, I know, but he does the testing himself and only does it on Tuesdays and he's away next week, then I'm away the next two weeks, and then my summer jobs start and I can't miss work or go to work with the pH sensor coming out of my nose so it would have to wait until September and even then it would be difficult to schedule it since my preschool teaching job starts at the very beginning of September. *Sigh* Hopefully it will work out for this Tuesday or that we can work it out somehow. Frustrating, though, since it probably would have been much easier to schedule it if it hadn't taken THREE WEEKS for them to call me about it (and, yes, I know I could have called sooner but I kept forgetting until it was the evening and I couldn't call them then obviously).
Oh, and on the non-health front I have some exciting (well, at least for me) news - I'm starting voice lessons tomorrow! I've wanted to take voice lessons for a while (I took them when I was younger but didn't get that much out of them because of the teacher I took them with) and the music director at my church is also a voice teacher at Berklee College of Music (in Boston) so I'd been meaning to ask her about taking voice lessons for a while but just never got around to it. So I e-mailed last week and I'm starting tomorrow! I'm really excited about them and I know I will learn so much from them. So I have that tomorrow, then I'll head up to Newton to Dr. H's (PCP) office for another energy treatment. Tuesday will either be spent in Boston having the endoscopy and pH study or it will be a resting day for me. Then Wednesday my dad and I are going to head up to Maine to spend a few days there with my aunt and uncle who are there on vacation. And Friday and Saturday I'll be working. So it's a bit of a busy week but not horribly so.
I need to take a nap (or at least a rest) now so I think I'll put in a DVD or something and rest for a while. Please keep Tara and Heather in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good weekend!
Friday, June 1, 2007 8:54 PM EDT
--Ben Stein
Hi Everyone,
Where did May go? It seems like it went by in just a blink of an eye. But then again, thinking of everything I did in May makes it seem like it was the longest month ever! I had a weekend of the production of Peter Pan, a weekend of Charlotte's Web, and a Lyme Out Retreat plus tons of other things with homework, doctor's appointments, etc. Yep, long month. And now we're on to June which should be a much quieter, laid back month. Let's see, I can look forward to a week in Maine at the end of the month, finishing up my two online classes (a bit daunting considering all the work left to do), a few doctor's appointments, and various other things but overall it's a much quieter month than May was.
I don't really have much else to say right now. I'll update again soon...I promise!
Please keep Tara and Heather in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Tuesday, May 29, 2007 11:48 PM EDT
--Robert Heinlein
Hi Everyone,
I can't believe it's been almost a whole week since my last update! But with everything I've done it's no wonder it's taken so long to get around to writing something let alone summing up the past week. So let me back up to last week (it seems like forever ago).
On Thursday morning I had an appointment with Dr. H (PCP) which went well. We've figured out the antibiotic situation enough to get me through another month and buy us some time to figure things out. I'm switching from IV Primaxin to IV Zithromax, keeping the one week a month of IV Flagyl, and adding in oral Mepron to try to hit the Babesia (co-infection of Lyme) that seems to still be active. The negatives of switching from Primaxin to Zithro is that there's no real way of knowing if the Zithro will help me continue to improve or even remain stable - I've been on it before with some progress but that was a long time ago so I just remain hopeful that it will help, especially in the combo we're using. The positives of switching from Primaxin to Zithro is that I'll be going from a three-times-a-day infusion schedule to a once-a-day infusion schedule which means more sleep and generally less to tie me down (except during the week of IV Flagyl which is a three-times-a-day infusion). I'm also trying out an alternative energy treatment at least once a week for now (which I get in Dr. H's office) and we're kind of scrambling to figure out what we can do to help me transition off the IV antibiotics in the near future since insurance coverage is so iffy right now and we can't afford indefinite treatment out of pocket (the main reason for switching antibiotics is that the Zithro is a lot cheaper and we could pay for it out of pocket for a month or two if it comes down to that). And Dr. H wants me to get the IV amino acids at least once a week - preferably 2-4 times a week if insurance covers it but that's uncertain - so I have to talk to my infusion company about that (there's a particular kind that Dr. H wants me to get). So yet another treatment to look into and maybe getting my amino acids back towards the normal range would help my energy and overall ability to heal.
After my appointment with Dr. H I went over to the preschool and signed my contract (if you missed the update about me getting a job, check out the journal history). It's exciting to know all the details of the job and I'm really looking forward to working there in the fall! And after that I headed home, made a quick run over to work and to drop some books off at the library, and then headed off to my brother's graduation from Cape Cod Community College. The ceremony wasn't anything special - pretty boring (as most graduations are) but it was good to see him graduate. And thanks to the wonder of technology, you can see him graduate, too! Here he is walking across the stage getting his diploma (sorry it's such bad quality - it looks like one of the shows where they blur out the faces of everyone!):
And a few pictures so you can actually see him (no blurry face):
So, Thursday was a long day and I was very worn out by the end of it but I had to stay up late trying to get things together for the retreat beginning on Friday. I was up very late that night and dragged myself out of bed relatively early in the morning to finish packing up and to get there at a reasonable time. That sort of happened and I made it there around 3pm (when I told people to start arriving). I got everything unpacked and set up and the retreat was really a wonderful weekend. It was a great group of people and the size, which I had been worried would be too small, was really perfect. Some of the scheduled things did happen, some of the other things didn't happen, but it was all good. Here are a few quick pictures from the weekend:
A beautiful weekend with perfect weather and a beautiful view.
Our "Sharing Circle"
And our group picture (we all look so healthy, don't we?)
Okay, so that was the whole weekend until Sunday when we packed up and headed home and I crashed. I didn't get to bed too early that night but I slept in quite late and would have slept later if my sister and her friend hadn't been washing their cars right outside my bedroom window (one of the disadvantages of living on the first floor). I slept on and off all afternoon and then in the evening we had a cookout to celebrate my brother's graduation. I wasn't feeling well so I didn't really enjoy it that much - I had a massive headache all day and was just generally feeling pretty wiped out. I fell asleep while infusing my evening Primaxin dose and got to bed pretty early (I'll be happy when I only have the one infusion a day but I'll have to figure out when to schedule it to best work around everything else and allow for the best sleep). Today I went up to Dr. H's for my first treatment with the energy machine I mentioned earlier. The treatment went fine, wasn't anything big to report about. I met a woman there who is newly diagnosed with Lyme and was obviously a bit scared but comforted while talking to me - the fact that I've been diagnosed for such a long time is scary but knowing that she's not alone helped. I stopped at Whole Foods on the way home (as I always do) and also Filene's Basement where I got some "professional" clothes for pretty cheap so I think I'll stop back in there next week when I go back for another treatment.
So that's the week in a nutshell (well, a large nutshell). Health-wise I'm in a pretty major crash right now from doing so much in the last few weeks but hopefully it won't last too long. The major headache yesterday wasn't much fun but thankfully it went away overnight. I'm mostly just tired, foggy, tired, having stomach problems, and did I mention tired? Yeah, I'm pretty worn out. I have to work the rest of the week (Wednesday through Saturday) and then of course church on Sunday (we're down to our last few weeks of regular church school - I think this Sunday is the last week of regular classes and then the following week is RE Sunday where the kids all participate in the service). And I have a ton of school work to catch up with this week and next week - history has been greatly suffering from my busy schedule but the professor is very understanding, I just hope I'm not taking advantage of that.
Okay, I'm going to get ready for bed as my Primaxin finishes up and then head to bed for a good night's sleep (hopefully). Please keep Tara and Heather in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Wednesday, May 23, 2007 1:38 PM EDT
--Henry David Thoreau
Hi Everyone,
Sorry for the lack of "real" updates in quite a while. Things have been a little crazy busy lately and I'm getting worn out from it all but soon I'll be able to rest and recover. But lots of exciting news to report on. I already mentioned that I got an A for my independent study which I'm still really happy about. Well, more exciting news...(drum roll please...) I GOT A JOB!! I now officially have a job starting in September! I went back yesterday to the preschool that I interviewed at last week and it was great to see the school while all the kids are there. It seems like a very hectic and energetic place which is great! So, after playing with the kids for a bit and just getting a feel for the place, one of the directors and I went to chat a bit and she offered me the job of assistant teacher for the 4-year-old classroom! The pay will be great and I'll be able to work a good number of hours but mostly it's just until 1pm. I'll work one day until 3pm and I'll be able to teach my two afternoons of theater classes as I was planning so I'm just really excited about it. I'll go back tomorrow to sign the contract and it will be a done deal! This whole thing may not seem like a big deal to some of you (although I'm guessing a lot of the people who read this page regularly are people who have dealt with things similar to what I've dealt with) but this is kind of a huge deal for me. I'm graduating from college after seven long years of struggling through courses and at times coming close to just giving up. And now I'm going to be working and be able to support myself for the first time in my life. I know I'll struggle with it at times and it will be hard but I'm up for the challenge and so looking forward to it. Now I just have to finish up my last two online classes (a bit of a struggle right now with the coursework) and then find an apartment for the fall (or rather find people looking for a roommate). I know things will work out and I'm excited to get to start this new chapter of my life!
In other news...well, not that much to report. I babysat last night for a little girl from church which was fine and pretty fun but I was exhausted by the time I got her to bed and I ended up pretty much dozing on the couch until her parents got home. Monday was pretty uneventful. I was in my PJs for most of the day, took a shower, tried to do some homework (didn't work all that well but I did get some reading done), nothing too exciting. Oh, and yesterday after I was done at the preschool I went to Whole Foods and then went walking around a bit and hung out at Starbucks doing some school reading for a while. A nice afternoon and it made me that much more excited for living back up in that area (I never knew I'd miss the Boston area as much as I do - I guess maybe I'm not as much of a country girl as I thought!). And today I have to get homework done (mostly geology) and very soon I'm going to do the grocery shopping for the Lyme Out Retreat this weekend. Fun stuff - I get to go to BJs for some of the stuff and then to the grocery store for everything else. I better get going on that before I run out of steam!
Health-wise not a whole lot to report. It looks like I'm going to have to change IV antibiotics but the good news is that there's another option that we'll be able to manage with for at least a month while we try to figure things out. It won't be cheap if we have to pay for it, but it's necessary to have something to hopefully tide me over while we sort everything out. I haven't been feeling great lately but I'm managing alright. Mostly headaches and joint/muscle pain and being exhausted a lot but I'm managing it. I just need to get some extra rest when the retreat is over!
Okay, I'm off to get dressed and head out to run all those errands. Please keep Tara and Heather in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Sunday, May 10, 2007 11:52 PM EDT
What's impossible
Well they forgot
This world keeps spinning
And with each new day
I can feel a change in everything"
--Jack Johnson
Hi Everyone,
More happy dancing tonight as I got an e-mail back from Maya about my independent study paper. I got an A on the paper and an A in the independent study! Maya was really impressed with my paper and even though I did feel like I did a good job it's of course a big load off my mind to know that she thought it was good, too (since I never quite know if my writing makes sense to anyone else but me!). Okay, just wanted to update with that tonight. I'll try to do a "real" update soon!
Saturday, May 19, 2007 11:28 PM EDT
I want to have lived the width of it as well."
--Diane Ackerman
If you can't tell, that elephant is doing a happy dance! As of about 45 minutes ago I was officially done with my independent study. I finished the paper (all 17 1/2 pages of it) and e-mailed it off to Maya, my independent study professor/advisor, so I am DONE! Okay, I can't get too excited, I'm only done with one of my three current classes, but at least it's one less thing to be worried about and spending time doing readings for and work on. Now I have to focus on my two remaining classes. And that means no rest for the weary - I'm on to do some geology reading right now before I call it a night and head to bed. (I didn't manage to start my Primaxin infusion until just after 11pm so I'll be up for a while.) Or perhaps a DVD would be a better idea - save some brain cells for tomorrow. Just three more weeks (and a few days). Just three more weeks (and a few days). (Those few days are mainly for doing the final exams.) Oh, and in regards to school, I had to suck it up and e-mail my history professor asking about an extension for the class to write the final paper instead of trying to get too much done and not doing well on any of it. Hopefully he'll be able to help me figure out my options and finish the class in one piece!
Friday, May 18, 2007 11:42 PM EDT
--American Indian Proverb
Hi Everyone,
Sorry about the lack of updates earlier this week. This update is actually being written in bits and pieces - I started it on Thursday night and didn't manage to finish it so I've been adding a bit at a time since then. I had a really good time in CT visiting with my aunt and uncle and having a little break. Tuesday was actually a really good day overall. I was up pretty early and spent a few hours in the morning running errands and doing some shopping for some clothes and other "fun" things - just kind of a little break from things and some fun. Then I spent the afternoon working on my independent study paper set up on the couch in my aunt and uncle's sun room - not a bad place to do school work! In the late afternoon after my uncle got home from work I packed up and headed towards home, wishing I could spend a few more days there in the beautiful peace. I made it to choir rehearsal (I planned it so that I could just stop at choir on the way home since it's on the way) which was good and then got home around 9pm. A long day all in all and it definitely took a lot out of me but I was happy to have been out and about so much and gotten some work done on my independent study paper. Wednesday was not nearly as productive. I had to get up and take my car into the shop first thing in the morning and I wasn't feeling great but managed alright and pretty much went right back to bed when I got home. I ended up sleeping into the afternoon and was still groggy when I got up. My car only needed part of the exhaust system replaced and wasn't too horribly expensive and now it sounds MUCH better. I tried to get a little school work done but didn't manage much. Then yesterday (Thursday) I slept in a bit, drew labs (everything looks good this week), took a nice shower, and went over to work to clean up the remaining stuff from the play last weekend. Then I headed up for a job interview at a pre-school just outside Boston. The interview went really well I think and this looks like it could be a really good job for me with perfect hours allowing me to still teach the theater classes two afternoons a week and be making enough money to be self-sufficient - a first! I go back on Tuesday morning to see the school in action and get to know what things are like there a little more. And today has been wall to wall homework - mostly geology but with a pinch of history and I'm about to add a dash of linguistics to the mix before I call it a night. My independent study (linguistics) paper is due tomorrow so tomorrow will be devoted to finishing that. I'm working from 10-2 but expect to be able to spend most if not all that time working on homework (my boss is away so I'll be ruling the roost!) and then the rest of the afternoon I have nothing going on so I'll either stay at work to finish up the paper (less distractions there) or bring my computer with me and go to the library or somewhere else to keep working on it, or of course the other option of coming home but I tend to get more easily distracted here. Hopefully I'll be mostly done by the time I'm out of work but...we'll see.
Health-wise I'm struggling to keep my head above water and avoid a major crash, but I'm afraid that's inevitible at this point I'm just trying to minimize the ill effects of it. I'm still battling with the nausea and low appetite from the Primaxin and at least I'm getting used to it (as much as you can get used to feeling sick and not wanting to eat). My labs are good this week as I mentioned so I'm happy about that. I had a heck of a time trying to draw my labs, though. It took about a half hour to get a decent blood return and many rounds of flushes but I finally did get it to draw (not sure what the problem was) and it's been fine since then. No news yet about scheduling the GI tests (I meant to call Dr. R's office this week about it but time just got away from me) or about insurance stuff.
Okay, I'm going to call it a night and forget about working on the linguistics paper since my Primaxin infusion is done and I can just hook up my fluids and go to sleep (or at least curl up in bed and rest). Oh, and I have a new posting up on my blog from today and have some more things that I should be posting soon so stop by and read those if you have a minute. Please keep Tara and Heather in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Monday, May 14, 2007 8:38 PM EDT
If we don't grow, we aren't really living."
--Gail Sheehy
Hi Everyone,
This is going to be brief (I know, I'm hardly ever brief in my updates). The visit today with Dr. C (Dr. Bock's colleague who is covering for him while he's away) went okay but it's unfortunate that Dr. Bock is away right now because we have to make some decisions about treatment as my insurance doesn't seem to want to cover my current treatment any longer. So we talked about other options, mostly other IV options that could possibly get covered in round-about ways since they would also be treating other things, but nothing was decided until I find out for sure if my insurance will not cover my current treatment any more. Unfortunately the woman at my infusion company who handles the insurance stuff is away until next Monday so I have to wait until then to find out more details and get a better idea of what the best next step will be. But Dr. C and I agreed that going off treatment altogether is not an option - I have to be on SOMETHING and since my stomach has such big issues with oral antibiotics (I took for granted all those years where it just handled almost anything I threw into it and high doses of them) it's a tricky thing to figure out. He mentioned hyperbaric oxygen therapy but it was just a mention, not necessarily a suggestion that I should try that. So really not much came out of the visit but when I know more about my insurance situation I'll call and let Dr. C know and if need be he can get in touch with Dr. Bock and we can figure this thing out. Frustrating to be dealing with this roadblock since I've been doing so well with the treatment this time around and finally seem to have everything balanced to make a happy liver, minimal side effects (although the nausea and low appetite kicking back up again after so long is a little surprising), and slow but continued improvement. Grrr!!
On a happier note, today was really beautiful and warm (I wore shorts!) so the drive was really nice. I took some pictures but won't be able to put them up here until I get home on my own computer (I'm on my aunt and uncle's computer). So it was a good day to be making the trip even if not much came out of the appointment itself. Oh, and I thought my appointment was at 10:30am, got there just after 10am and found out the appointment was actually scheduled for 12:50pm! They got me in a little after noon but that meant I was there waiting for about two hours and didn't know when they'd get me in or if I'd have to wait until my scheduled appointment time. I had some school work with me so it wasn't completely wasted time but still not the most fun way to spend a few hours on a beautiful day, especially since I was at the office with the less comfortable waiting room chairs (the office I usually go to has reclining chairs in the waiting room because it doubles as the infusion room). Oh well. After the appointment I got something to eat (didn't sit well - grr) and walked around a bit before heading back here to my aunt and uncle's. I'm here tonight and I'll head home tomorrow afternoon and go to choir rehearsal (yay, now that my theater classes are over I can get back to choir rehearsals regularly!). Back on the health side of things, my stomach is definitely not liking me for the past few weeks (or rather it's not liking the food I'm trying to give to it) which is frustrating but I'm handling it pretty well, just expecting to be in pain after eating almost anything (or drinking some things it seems). Still haven't heard about scheduling the GI testing. If I don't hear by Wednesday I'll call Dr. R's office and see what's up.
Okay, I'm going to grab some homework and get busy on some reading or other assignments or something (can't waste time!). I hope you're all doing well and having nice weather where you are! Please keep Tara and Heather in your thoughts as well as everyone else having a rough time. Thanks for stopping by! Please take a minute to sign my guestbook!
Peace and healing,
Annie
Sunday, May 13, 2007 10:58 PM EDT
the blueprints of your ultimate achievements.
--Napoleon Hill
Hi Everyone,
Just wanted to put up a quick update saying that I'm in CT at my aunt and uncle's as I have an appointment in NY with one of Dr. Bock's colleagues (Dr. Bock is away at a conference and will be gone for a while) tomorrow morning. I'll update after the appointment (I could use some good thoughts as it seems we have to come up with an alternative treatment since my insurance doesn't seem to want to pay for further treatment of what I'm on now) and include some about the past few (quite difficult) days. For now I'm off to bed so I can get up early tomorrow and take a shower and re-access my port before heading off at about 7:30am (ugh, morning is not my best time but hopefully the weather will be nice and let me enjoy the early morning hours!).
Hope you're all doing well. No prayer request links tonight as I'm on my aunt and uncle's computer but please keep Tara and Heather in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by (as always) and please sign my guestbook! And Happy Mother's Day to all you mothers or mother-figures out there!
Peace and healing,
Annie
Thursday, May 10, 2007 11:07 PM EDT
Letting go of everything that is not you,
All the expectations,
All the beliefs,
And becoming who you are.
Not a better you, but a realer you.
We need to let go
To throw away everything that isn't us
In order to be more whole."
--Rachel Naomi Remen
Hi Everyone,
Let me start by saying that I'm not sure what's going on but for some reason my Primaxin infusions seem to be making me feel sick like they used to and as I'm hooked up to my second bag of my nightly infusion that means I'm not feeling so hot so this will be short(ish). I guess rather than complaining about feeling sick from the infusions again I should be happy that I had a relatively long period of time when they weren't making me feel sick. Anyway, my appointment with Dr. R (GI) this morning in Boston went pretty well and was more or less what I was expecting. With the continued issues with reflux we need to do some tests and see what's going on. So Dr. R is ordering an endoscopy and 24 hour pH study to be done on the same day (well, the pH study probe will be placed after the endoscopy and then I'll return the next day to have it removed) and he's also ordering another gastric emptying scan to see if the medication I'm on for my stomach is helping it empty more normally or if it could be contributing to the reflux issues. None of that is scheduled yet, I have to wait to get the call from the scheduler to get them all set up, but it should be in the next few weeks and then I'll see Dr. R again 2 weeks after that. Along with my routine visits with Dr. Bock (well, it will be his colleague this month because he'll be at a conference and then away for a while) and Dr. H (PCP) I'll have quite a busy upcoming month medically. Thankfully my theater classes will be over so I'll have a little less stress in general. Health-wise I'm not feeling great. Thankfully I'm almost done with my week of IV Flagyl as that doesn't seem to help how I feel, although it definitely helps once I've recovered from the actual treatment. I had a nice train ride to Boston and back today and got some school work done but got a little motion sick from reading while moving which probably wasn't the best start to the day. So my stomach isn't great but I'm managing - just sticking to easy foods (mostly liquids) and trying not to push too hard. I'm feeling on the verge of a crash and just hope I can fend it off until after this weekend when Charlotte's Web will be over. I'll hopefully be able to basically take next week off of work and rest and recover and catch up on school work. Oh, and last night I took my first aid class that's required for graduation which went well and was pretty easy (a lot of common sense type stuff and things I already knew from dealing with various aspects of the medical world for so long) and there's a possible job that came out of it. The instructor owns a day care on Cape Cod with his ex-wife and they're looking for teachers for the fall so he gave me the info and I'll see where my other options end up but it's good to have a bunch of prospects!
Before I go wanted to say that I'm participating in something called the Walk Against Lyme during the month of May. I will be walking (hopefully daily) and keeping track of the number of miles I walk, collecting pledges per mile (or a flat amount), and the money raised will go to two different Lyme disease groups (a non-profit and another fund). If you'd like to pledge me, send me an e-mail and I'll give you the details! Same goes if you would like to donate to my upcoming Lyme Out Retreat to help support scholarships.
Please keep Tara and Heather in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Tuesday, May 8, 2007 11:16 PM EDT
Please don’t throw your dreams away
Hold them close to your heart
Cause we are all a part
Of the ordinary miracle"
--Sarah McLachlan
Hi Everyone,
Whew! It's been quite a week so far. Very busy, lots to do, and unfortunately not enough time for sleep although I've been trying to get in extra sleep whenever I can (including during my evening infusions when I've been falling asleep without meaning to). I'm very worn out and I'm looking forward to this week and weekend being over. Once Charlotte's Web is over I can actually breathe a little and focus on all my school stuff (which is unfortunately suffering under the busy schedule this week). Sunday was a long day with church and then work on my independent study research paper (not much written yet but I'm at the point where I can pretty much sit down and just write it so it shouldn't take too long to write). Then yesterday (Monday) I was up at school for most of the day meeting with Maya, walking around a bit in the beautiful Boston weather, and getting stuck in traffic. My car seems to be having muffler trouble so I have to get that looked at but in the mean time I'm just driving around a loud car. Last night I worked on school work a little but decided to take it easy since I was still so worn out from Peter Pan so I ended up watching one of my Netflix movies which was nice. And today was a long day filled with theater stuff. I was at the Art Center from about 2pm until about 8:30pm - first working on some set stuff and talking to my boss about the fall theater stuff (more on that in a minute), then I had a Charlotte's Web rehearsal (our second to last one - eek!), then more work on the set and props, and finally auditions for The Fantasticks which is the summer show. Rehearsal went alright, we made it through the second act (there are two) but it's still very rough and the kids need to STUDY THEIR LINES! But I think they'll pull it off alright, especially with backstage help to prompt their entrances and tell them when to change clothes and stuff like that. And the auditions were pretty good but there was another girl there who I think will most likely get the one female role (Luisa). And now I'm home and exhausted and trying to get myself to concentrate on a little school work (not looking too promising).
So, back to the fall theater stuff. I think I mentioned that I wasn't sure I'd be going back to teach theater in the fall but my summer camp co-worker (and former theater co-teacher and friend) brought up the thought to figure out what I want and need in order to stay and ask for it - doesn't hurt to try! So I wrote up a whole proposal with three theater classes to offer plus two other classes (one is a Saturday morning general creative arts class for younger kids (K-3) and the other is a once-a-month theater game afternoon) and asking for a relatively modest raise. I presented it (well, more like just gave it) to my boss today after having mentioned it a few times to her, she looked over it, and said it's fine. I just need a minimum of 6 kids in each class (which is about the smallest size class I'd want anyway). So I'm happy about that and I'm not conflicted about having to leave all the kids that I've had for so long and all the new kids that I've already become attached to. With another year of teaching theater, I have to then figure out a job that will fit in with this so I've been looking at job listings mostly in education (preschool and day care mostly) and have one prospect in the Boston area which looks good and it doesn't look like it will be too difficult to find an apartment where people are looking for a roommate that I could afford. So plans for the fall are starting to fall into order!
Health-wise I'm doing so-so. Not getting enough sleep, sometimes having to compromise and skip infusions in order to get some extra sleep. I'm in my one-week-a-month pulse of IV Flagyl right now which of course adds to the infusion schedule so I've been trying to at least get in all my doses of that to get the week over with on schedule (it always wears me out a bit more). I forgot to mention in my last post about my labs last week. They weren't horrible but I'm anemic again - not great as not only is my hemoglobin low (which was usually my only indicator of anemia in the past) but my red cells are also low. So I'm back on the iron supplement and hoping my counts come back up when that kicks in. It could have been a fluke but I don't think so, although last time I had my iron levels checked (a few months ago at least) they were well within the normal range after having been high for a while. I did my labs today so we'll see what they look like this week. I'm generally feeling kinda crummy, at least at times, with more stomach trouble (although there seem to be a few upswings in it at times), some headaches, eye troubles (I need to make an eye appointment - adding that to my list of things to do so I should get to it...sometime before August!), and just generally having some rough days and nights. I see Dr. R (GI) on Thursday morning (I thought it was Friday morning but I thankfully checked my calendar) when I'm expecting to have to schedule an endoscopy and pH study since my reflux is still a major issue (last night before I went to bed it was especially troublesome) which I'm not looking forward to having done but we need to figure out what's going on and if there's something that needs to/can/should be done to stop it. I'm sure it's not good for my esophagus or throat and it definitely affects my voice. Anyway, so health-wise things are a bit rough but I'm managing alright.
Before I go wanted to say that I'm participating in something called the Walk Against Lyme during the month of May. I will be walking (hopefully daily) and keeping track of the number of miles I walk, collecting pledges per mile (or a flat amount), and the money raised will go to two different Lyme disease groups (a non-profit and another fund). If you'd like to pledge me, send me an e-mail and I'll give you the details! Same goes if you would like to donate to my upcoming Lyme Out Retreat to help support scholarships.
Okay, I'm going to ditch the homework attempt and just get in my PJs and sleep until my infusions are done. Please keep Tara, Heather, and Hunter in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Saturday, May 5, 2007 11:39 PM EDT
--Henry Drummond
Hi Everyone,
Peter Pan is officially over! Woo hoo! I made it through it and now two classes are down (my younger kids also had their performances this weekend) and one left to go. And both my mid-terms are now done! Yipee! The mid-terms seemed to go pretty well but I don't have the grades yet so I'll have to wait and see if I did as well as I feel I did. And the Peter Pan performances (try saying THAT five times fast) went pretty well, too. Last night's performance was pretty rough with me having to prompt quite a few lines but today was much better and I'm really happy with all the work the kids put into it and of course with the fun they all had in the class. There were lots of parents congratulating me afterwards and thanking me and saying how much fun their kids had which is what makes it worth all the stress and chaos of the past week...few weeks...month...few months. I have a few pictures here, the first is of my litte kids - their play was one I wrote called The Fairy Tale Ball or Don't Judge a Book By Its Cover - and the second one is of my Peter Pan group.
From L to R: (back row) The Royal Fashion Designer, Princess Rosalina, Princess Leah, Snowball (a red, fire-breathing dragon), Theresa (a green furry monster).
(front row) Princess Genevieve and Haley the Witch.
From L to R: (back row) Mrs. Darling (double cast as Tiger Lily), Mr. Darling, Panther, Starkey (pirate), Peter Pan, Wendy, John, Captain Hook.
(front row) Smee, Tootles and Slightly (The Lost Boys).
Now I'm taking a much deserved little break - took it easy this evening, watched this week's episode of Grey's Anatomy (not quite sure I like the whole Addison spin-off stuff), and did a little reading for history (just because I'm done with the mid-terms doesn't mean I get a chance to take a break from school work). Tomorrow is church (teaching RE) and the rest of the day will be devoted to school work - mostly history reading and working on my independent study paper. Then I have a marathon week of sorts coming up - school on Monday to meet with Maya (my last meeting for my independent study if all goes according to plan!), talking to my boss about the fall's theater classes (and therefore my future, if I want to have one, at the art center) and then Charlotte's Web rehearsal, Wednesday afternoon I take First Aid through the Red Cross (a bit of a random requirement for graduation), Thursday is the last Charlotte's Web rehearsal and therefore will be when I'm running around like crazy, Friday I have an appointment with Dr. R (GI) in the morning and then first performance of Charlotte's Web that night, Saturday is the second and final performance of Charlotte's web and then I'll be taking off for the rest of the day...somewhere (I won't go into details about that here)! Yes, and there's school work in there and perhaps some time to sleep, although who knows how much of that will be happening. But after Charlotte's Web is done I will have much more free time and time to breathe a little bit and focus on finishing up my last college classes! (Just five more weeks. Just five more weeks.)
Before I go wanted to say that I'm participating in something called the Walk Against Lyme during the month of May. I will be walking (hopefully daily) and keeping track of the number of miles I walk, collecting pledges per mile (or a flat amount), and the money raised will go to two different Lyme disease groups (a non-profit and another fund). If you'd like to pledge me, send me an e-mail and I'll give you the details! Same goes if you would like to donate to my upcoming Lyme Out Retreat to help support scholarships.
Please keep Tara and Heather in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Thursday, May 3, 2007 11:18 PM EDT
--Mary Kay Ash
Hi Everyone,
One mid-term down and one to go! I took my geology mid-term this evening and I'm pretty happy with it but I'll have to wait and see how I did before I stop thinking about it. So now it's on to my history mid-term which I'll take tomorrow afternoon but of course it doesn't end there, I have a ton of other homework to get done over the weekend and into next week. I'm about to get to some of that work but wanted to do a quick update first. Yesterday's final rehearsal for Peter Pan went alright - we made it through the whole play which was a very good thing but, then again, if we hadn't made it through the whole thing we would have been in really really bad shape for the performances. There are parts that are still very rough and I'm worried about specific people and scenes but I've done all I can do at this point and it's up to them to go over their lines at home and come back in better shape for the first performance tomorrow! After rehearsal I cleaned up and went down to the beach for a little while because it was a really nice day and I needed some calm and quiet to just take a little breather. Then it was home to do more homework (studying for history mostly) and eventually I headed to bed. Today has been a long day filled with a lot of school work. I slept in a bit which I take advantage of whenever I can then got working on more history studying, a quick walk (more on that in a second), geology studying, some dinner, and then on to the geology mid-term. Now I'm taking a little break from homework and I'll be heading to bed as soon as my primaxin infusion is done (about 45 minutes left on it). And today I got a nice package in the mail - the puppet I ordered! It's an orangutan and his name is Pete (not Peter or Petey) - not sure why that name it just seemed to fit when it popped into my mind. Here's a picture of me and Pete:
Health-wise I'm still fighting stomach problems. I thought it was better and I had some chinese food for dinner (nothing too out there) but it's not sitting that well so I'll revert back to the easy foods I've been eating all week. Otherwise I'm just really tired, having some headaches and joint pain but nothing too bad, and mostly trying not to get overwhelmed by all the work I have to get done. I have to say I'm more relaxed now that I know I don't have major work left on Peter Pan and my youngest theater class other than getting through the performances this weekend (which really is more nerve-wracking than stressful).
And before I just wanted to say that I'm participating in something called the Walk Against Lyme during the month of May. I will be walking (hopefully daily) and keeping track of the number of miles I walk, collecting pledges per mile (or a flat amount), and the money raised will go to two different Lyme disease groups (a non-profit and another fund). If you'd like to pledge me, send me an e-mail and I'll give you the details! Same goes if you would like to donate to my upcoming Lyme Out Retreat to help support scholarships.
Okay, I'm going to curl up with the book I have to read for history and head to bed soon. I'll try to post tomorrow or Saturday with some pictures and a report about how Peter Pan went! Please keep Tara and Heather in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Wednesday, May 2, 2007 12:29 PM EDT
--Winston Churchill
Hi Everyone,
I thought I'd do a quick update before I get all wrapped up in school work and then a long time working on the finishing touches for my theater classes' shows (so close to the productions!). I'm still trying to get over whatever the stomach thing was. I'm thinking it was some kind of relatively mild stomach bug and since I've been very very careful about what I've been eating since Sunday night I haven't had any major problems with it again. But eventually I'm going to have to get over it enough to eat more or else I'm going to be in not-so-great shape soon. Oh well, at least I'm well stocked in easy to eat foods! (Babyfood really can be a great part of a sensitive stomach diet, especially the fruits and breakfast cereals.) Okay, so health-wise I'm hanging in there. School-wise I'm very stressed out and struggling to get things finished close to on time. I got an e-mail back from my history professor about taking the mid-term and he's fine with me taking it after the test technically ends (which is in a few hours) so I'm not stressing too much about that and plan to take it tomorrow. And my geology mid-term is available from tomorrow early afternoon until Saturday night so I'll try to get that done on Friday. And I can't forget about my independent study - I'm supposed to have an outline or part of the paper written and e-mailed off to Maya (my professor/advisor) today so I'll get done what I can get done today and e-mail it off to her tonight (it will probably be an outline with some little bits of detail included in it). Ugh, and I just remembered that I'm supposed to read this whole book (short book) for history this week and post responses to it by Sunday afternoon so I guess that's how I'll be spending some of my time today and tomorrow and Friday and Saturday (if I don't finish it quickly). So much go do! AHHHH! But once this week of mid-terms and everything is over, it should get a little easier...I hope (knock on wood). And I'm down to just about six more weeks of school left!! (Just six more weeks. Just six more weeks.) And as far as work goes, I'm really busy trying to get all the play stuff together and organized and get the kids rehearsed enough so the shows don't fall apart (not an easy task as I am constantly amazed at how casual some of these kids are about the whole play production thing and learning their lines - it's shocking and never ceases to frustrate me but I won't go into that). Yesterday I ran errands for a while and then headed over to work to do some work on theater stuff only to get there and remember I was supposed to work at 1pm while my boss was at a doctor's appointment! I wasn't quite an hour late and it didn't seem that there was much that I might have missed (not many messages on the voice mail, no one breaking down the door, etc.) but I felt so bad about forgetting. So I didn't get to do as much work on the theater stuff as I was hoping to so I could take care of some other work-related tasks but it was okay, I just have to go in for a while today to try to finish some things up and try to find a few last-minute props. After working on theater stuff this afternoon I have a two-hour final dress rehearsal for Peter Pan and I'm just hoping it comes together better than it was at rehearsal yesterday. We shall see! (If anyone is in my area and wants to come see Peter Pan, it's this Friday at 7pm and Saturday at 2pm - drop me an e-mail if you want more info.)
Okay, I have to get on with school work and then onto theater stuff. Please keep Tara and Heather in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Monday, April 30, 2007 6:46 PM EDT
--John Watson
Hi Everyone,
Sorry for the lack of updates over the weekend. I had a very long day in Boston on Saturday taking the puppetry class but it was so much fun! It was really the kind of class that opens my eyes to whole other possibilities of what to do and how to connect with kids. And I ordered a puppet - didn't waste much time with that partly because I'm just so excited to start working with one (and the kind of puppetry we worked on in the class isn't the kind where the puppets are acting out a story - it's where the puppet is a whole character and TELLING the story) and I volunteered to do a story for the kids at church on May 13th. So I have to throw something together quickly but I'm really excited about it. Sunday was okay - early morning with choir rehearsal before church, I stayed after church for my RE class's lunch to raise money for cancer research, then had a Charlotte's Web rehearsal in the afternoon which was pretty tiring. And I spent a while after I got home doing reading for my history class but by 9:00pm I was falling asleep trying to read so I called it a night and was actually in bed by about 9:30pm - very rare for me. But unfortunately it turned into a pretty bad night when I woke up a little before 1am with abdominal pain and feeling nauseous and a little while later I started throwing up. Fortunately it wasn't an all-night throwing up thing and I did feel better after I threw up but it's never fun to throw up. I don't know if it was my stomach letting me know it wasn't happy with something I'd tried to eat, or that it was putting up a fight against eating in general, or if I caught a stomach bug or something (one of my theater kids said she'd had a stomach bug but was pretty much over it at rehearsal yesterday) but I'm not feeling well today and taking it easy. I had planned to take my history mid-term this afternoon/evening but don't trust that I'll feel well enough to make it through the whole thing so I'm opting to wait until I feel better. Unfortunately that meant writing to my history professor and seeing what we could work out if I end up needing to take it after it technically closes on Wednesday afternoon, something I really didn't want to do but I needed to ask so that I don't make myself sicker trying to get the exam done if there's something else that I could arrange. I was also having some issues with the skin under the tegaderm around my port (the tegaderm is the clear dressing) being red and inflamed so I gave my skin some extra time to air out before re-accessing my port and throwing another dressing on it. That meant I took a little time off my IVs including my hydration which may be part of the reason I'm not feeling great today (I only missed the hydration yesterday but that along with throwing up doesn't make for a great situation). I spent a long time doing more history reading this morning and afternoon before I took a break and I've been pretty much resting since then and trying to snack on some oyster crackers and vitamin water. I'm about to throw on some "real" clothes (still in my PJs here) and tag along to dinner with my mom, brother, his girlfriend, my sister, and her friend - not sure if I'll venture to eat anything or just be there for the fun of it. Tomorrow is my last day of long theater classes because two of the classes end this week. All in all this week is going to be pretty long and difficult and I just hope I recover from whatever stomach stuff is going on!
Please keep Tara and Heather in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Friday, April 27, 2007 8:34 PM EDT
I am over the water
And I'm scared as hell
But I know there's something better
Yes I know there's something..."
--Paula Cole
Hi Everyone,
This is going to be a short update but I wanted to write something before I either get wrapped up in school work or fall asleep (not hard to guess which is more likely). The past few days have been a bit better than when I did my last update on Wednesday. Cognitively I'm still having issues and today my stomach decided to cause some problems forcing me to take a phenergan in the middle of the afternoon, something I hate to do since it really knocks me out but I'm fighting against falling asleep or taking a nap before I can go to bed for good. Yesterday (Thursday) I had an appointment with Dr. H (PCP) which went well. We discussed a possible alternative treatment to try with the hope that it could help keep me feeling okay when it comes time to stop the IV antibiotics (that ending isn't in sight right now but it's inevitible at some point - I can't (and don't want to) be on IV antibiotics for the rest of my life!). It was just a discussion for now but I'll probably be trying it out over the summer. It's a kind of energy treatment done with a little machine (for you Lymies out there that read this, it's not Rife but something similar) and I could try it at Dr. H's office but it requires going up at least twice a week for the treatments. It's doable but will need to wait until I have the time to invest in it. And eventually, if it proves helpful, I'd have to decide whether or not to invest in getting one of my own for long-term treatment/maintenance. We're also trying to figure out ways to get more protein in my diet which is proving to be quite a challenge. I'm going to try to do more baking and adding a rice-based protein powder to whatever I can (I just made some oatmeal bars with it added and they turned out pretty good but aren't sitting too well on my stomach) and basically be sure that whatever I'm eating has a significant amount of protein in it. I just can't afford to waste the stomach space and digestion on things that won't pack as much into a little bit as possible. I got a whole bunch of different protein bars with the hope of getting at least one of those in a day (nibbling throughout the day) and I have some protein powders that I'll try, too. I tried one this morning and managed to drink the whole thing mainly because it dissolved pretty well and I could mix it with just water so it was thin enough to manage. Baby steps! And Dr. H did some kinesiology testing on me and it indicated that I'm still dealing with not only Lyme but the two other co-infections that I've been treated for multiple times (Babesiosis and Bartonella) and that my liver, GI tract, and something else (can't remember) aren't doing that well. My labs are great so my liver isn't showing its unhappiness there at least. That's pretty much it for the visit - it was a good visit overall. I made my regular stop at Whole Foods on the way home and later on in the afternoon went in to work for a bit to clean up the theater and do a little bit more work on the play stuff (it's really neverending). Today I did a little homework and then headed up to school for my one credit one weekend puppetry class only to find out when I got to the class that the teacher had an emergency and couldn't come to class today. So I just headed back home - a waste of 3 hours of driving plus extra time at school but oh well. She'll be there tomorrow for the longer part of the class (8 hours tomorrow) so it's not like the class is cancelled. Tomorrow will be a long day - I have to leave my house no later than 7:30am (hopefully closer to 7am) and the class goes until 4:30pm so I won't be home until at least 6pm. Long day but hopefully it will be fun. Now I have to go do a quick writing assignment for the class and do some other homework while I do my Primaxin infusion. With my unproductive Wednesday I'm farther behind on my school work than I wanted to be so hopefully I'll be able to catch up a little bit at a time.
Please keep Tara and Heather in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Wednesday, April 25, 2007 11:30 PM EDT
Is the laughter keeps us coming back for more.
The space between the wicked lies
And hope to keep us safe from the pain..."
--Dave Matthews Band
Hi Everyone,
I'm struggling today, mostly with cognitive problems and I'm not sure what's up with it - probably just a bad day but it's frustrating to not be able to think clearly at all, to be all jittery and all over the place mentally, to feel like the fog has turned to storm clouds all around my head (meaning that it's much thicker than just a fog), and just not feel like myself. It's nothing new so it's not a huge deal, just frustrating to deal with it all. But I won't dwell on all that even though I feel like I could go on and on about it.
I last updated on Sunday and meant to write something much sooner but just never managed to get anything together. On Monday I had a long day up in Boston. I got up there early and the meeting I was planning on going to at 10:30 didn't seem to happen (no one was in the assigned room at 10:30) so I just settled myself in one of the comfy chairs down the hall from Maya's office and read until our meeting at 11:30 (more like 11:45 or a little later since her bus was late). It was a gorgeous day and HOT! I mean, hot enough to break the record of the hottest temperature on that date in Boston. It got up to 86* at Logan Airport in Boston and broke the record of 85* set in 1908! Yeah, it was HOT but I wasn't complaining except that I'd worn jeans and was a bit uncomfortable but that's okay. After my meeting I had some time to kill before meeting Elizabeth, the student intern minister at my church, for lunch so I walked around a bit, found a nice spot to sit in the nook of a tree down the road a ways from school and later sat outside at school and did some reading. Elizabeth and I had lunch at a great vegetarian Thai restaurant not too far away from school and got to talk and catch up which was really nice. This Sunday is her last church service and I know we'll all miss her a lot but I'm happy that she's made it through her internship and given so much to our church family. After our lunch I headed home and had a quick rest before having to head to work for an hour - the auditions that were supposed to happen for the summer play had to be rescheduled because the director realized he had a conflict (and apparently didn't figure this out until the day of the auditions) so I was there to let people know - all two of them (yes, not the best sign for how the play will be). And then I collapsed at home and was asleep early (early for me at least). Tuesday was another marathon day with about 8 hours of theater-related stuff. I went out and ran errands starting around 1pm, was at the art center by 2:30, worked on props and set stuff until my first class at 3:30 and then had my four hours of classes (I swear, these kids don't take these theater classes seriously at all - well, most of them at least - but I won't go into that here), and was at the art center until about 9pm cleaning up so that the Wednesday morning music together class could meet in there this morning. No choir rehearsal for me but that's okay, I kind of needed some time to get things in order a bit for the plays. I'll have to be back there more before the week is through cleaning up more, finishing up props and costumes, and generally getting things in order and make it clean enough for there to be a concert on Saturday (yeah, not the best timing there but not much I can do about it). And today has been...well...a very unproductive day. I slept in a bit but didn't let myself sleep in too late since I've been trying hard to regulate my sleep cycle better and make it more "normal"...whatever that is. I did take a shower so I guess it was a little productive and I answered some e-mails so that's something. But my plan of spending the day working on school work was thrown out the window when it was apparent that my mind just wasn't doing well at concentrating. Even writing this update is a struggle and has taken me an hour to write this much because I keep getting distracted, side tracked, and just have trouble putting my thoughts in order.
Health-wise I'm managing alright. I'm tired and pushing myself too hard which is apparent by the dark circles under my eyes that seem to be showing up more clearly lately (I don't always notice until I take a picture of myself and look at it). I took this picture randomly today while playing around with my camera and was surprised at how it came out:
It might not be entirely accurate because I'm not really as pale as I look there either but it was still surprising. I guess I need to make more of an effort to get enough sleep and slow down a bit. (Just two more months. Just two more months.) I got my weekly lab results today and everything is normal again (yipee!) and looks good - red blood cells and hemoglobin aren't that strong but seem to be holding steady at least. The important thing is that my liver is still happy and nothing is abnormal. Tomorrow morning I have an appointment with my PCP and then I'll run some errands on the way home, hopefully get some school work done (the waiting room is a great place to be productive!), and spend a little while at work getting the theater cleaned up. Hopefully tomorrow will be more productive than today has been (and there's still another hour of Primaxin for me to have to be up for so perhaps I'll get at least a little reading done before I go to bed). Not much else to report medically. But before I sign off for the night, here are a few pictures - some from my day in Boston on Monday and some from today with my hair straightened:
The park across the street from school.
Down the street from school.
The comfy tree where I spent a while people-watching and enjoying the nice weather.
And me with my nice straight hair today.
And a short video I took with my camera (yes, this is the kind of thing that occupies my time when I'm not having a good cognitive day):
Sheesh, it's taken me more than an hour and a half to write this. Stupid brain. Anyone got any spare concentration to lend me? Alright, I'm giving up on getting anything done and I'm just going to curl up until my infusions are done and then call it a night. Maybe some extra sleep will help me be a bit more productive tomorrow. Please keep Tara and Heather in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Sunday, April 22, 2007 9:36 PM EDT
you would never see the beauty of their carvings."
--Elisabeth Kubler-Ross
Hi Everyone,
It seems I've made it through another week of school and gearing up for the next one. It seems like I'm constantly thinking in terms of what the next assignment due is, which class has the most work coming up for it, what is most deadline-specific, and just always thinking of the next thing to get done. But when I finish something, I do breathe a little sigh of relief. I've done well on the past two labs for my geology class (both 20/20) but not so great on this week's geology quiz. I'm trying not to stress too much about each individual grade as long as I do relatively well in the class! And the same goes for my history class, although there are only a few assignments that count for a lot of the final grade - the mid-term and final exams and a final paper. But I'll make it! Just two more months and I'll be done with school! (That's becoming my mantra right now to motivate me on to do just a little more reading, just a little more time spent on work.) And of course then there's my independent study for which I'm unfortunately not getting as much work done as I'd like to but I'm getting some done and I'm sure I'll manage alright with getting the final paper together in the next month (when the semester at Wheelock ends). But enough about school.
Yesterday was a pretty good day. I worked from 10-2 and got some school work done there as well as getting a lot of good work done on the set for Charlotte's Web (pictures included below). And it was a really nice, warm day so after work I came home to get my afternoon Primaxin infusion stuff (I stupidly didn't bring it with me to work) and headed off to the beach with my backpack of school work and sat on a blanket on the sand and read. It was really nice and I'm hoping we have some more nice days like that where I can head over to the beach and do the same thing. It helps cut down on distractions and it's always nice to get some fresh air and sunshine! And then last night my mom, dad, and I went out to dinner and to a piano concert at church by our wonderful pianist. This morning I had church and then spent a nice few hours having lunch (outside - another beautiful day) with Alice (Lexie's mom) which was really nice. And the rest of this afternoon was spent doing more homework and after this I'm going to...do more homework! Tomorrow I head up to Boston for pretty much the whole day - there's a meeting at 10:30am about commuter life at Wheelock (which I have some big opinions on), then at 11:30am I meet with Maya (my indepedent study professor and advisor), then probably a break for a little while before heading around the corner to meet up with Elizabeth, the student intern minister from my church, for lunch. Long day but it should all be good. And if I'm up to it I'll head over to auditions for the summer musical at the art center (where I work) although I kind of think I have to go because there's a question about whether my boss will be there to unlock the door. Health-wise there isn't much to report - had a bit of a headache today but it's coming and going so it's not too bad; stomach a bit troublesome but not too bad; really tired but hopefully I'll manage to get to bed relatively early tonight and catch some resting time during my busy day tomorrow; having some issues focusing my eyes so reading is a bit trickier than usual but I'm dealing okay with it. So, yeah, not a whole lot to report on.
Before I sign off, here are some pictures from yesterday:
The four words in Charlotte's web (I'm quite proud of myself for figuring out a way of getting the letters up there so they can be easily put up and taken down!)
And at the beach:
I'm going to hook up my Primaxin and get back to some reading for my meeting with Maya tomorrow. Please keep Tara and Heather in your thoughts as well as Lexie who has a big medical week coming up, my Lymie friend Sally who goes in to have a port placed tomorrow morning, and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all had a good weekend!
Friday, April 20, 2007 10:46 PM EDT
He said. They said: 'We are afraid.'
'Come to the edge,'
He said. They came.
He pushed them, and
they flew..."
--Guillaume Apollinaire
Hi Everyone,
Wow, updates two days in a row! Amazing! I'm honestly updating because I'm so drained that I can't do much else and just needed to write a little bit. I'm struggling a bit right now. I'm pushing and pushing and pushing to get everything done that I need to get done, to get my school work done especially, and I'm feeling like there isn't enough time in the day, I don't have enough energy or push in my body to get it all done and not fall behind. I'm only 3 weeks into my two online classes and I'm already feeling really overwhelmed. I'm spending so much time doing school work and not doing the things I need to do for myself to make sure I don't end up pushing myself right into a crash. I didn't get a good night's sleep last night so that doesn't help anything so today I'm feeling even more overwhelmed and exhausted than usual. I know I'll make it through school, I know I'll finish, the end is in sight, but getting to that end point is going to be quite a battle. But in two months I should be done. Two months. Eight weeks. That's crazy to think about. But I can't even really think about that because then I start thinking of the heaps and heaps of work I'll have to get done between now and then. I guess I have to be sure to spend every second I possibly can doing necessary things. And now I'll start by getting ready for bed and doing some linguistics or history reading before I call it a night. Hopefully it won't be another tossing and turning night and hopefully tomorrow at work I'll be able to get school work done. Two months...I'll make it!
Please keep Tara and Heather in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all had a good week!
Thursday, April 19, 2007 7:21 PM EDT
--Clara Ortega
Hi Everyone,
Just wanted to do a quick update with some pictures. Things are going pretty well here - I worked yesterday which was pretty uneventful and I managed to get some schoolwork done. I started making cinnamon rolls last night and finished them up this morning (basically just baked them this morning) and they turned out really tasty. I also drew labs this morning - will see how things look tomorrow when I get the results. Today has been more visiting with my sister (my brother-in-law is in Providence for the day visiting with a friend) - my brother, sister, and I went and visited my younger sister at work this afternoon (she works at a coffee shop) and then we played "Back to the Farm", a great game from our childhood (I won!). Now we're just getting dinner ready and we'll eat when my younger sister gets home from work. I did some school reading this afternoon (didn't realize I have 21 READINGS not 21 PAGES to read for my history class - that means it's about 200 pages - yikes!) but otherwise just kind of been hanging out. This weekend is going to be wall-to-wall school work except for church and having a nice catching up lunch or something with one of my good church friends (Lexie's mom, Alice). Boy, this next month is going to be quite an adventure with all the school work but I'll make it through somehow!
Here are some pictures from the other night, none of the whole family but some of all the sibilings and some of just the sisters (one of which is now at the top of the page).
All the siblings - Patrick, Meg, Sarah Kate, and me.
My dad, Sarah Kate, and me.
And just the sisters - Meg, Sarah Kate, and me.
My sister and brother-in-law (I really should just call him by his name - Matt - instead of writing brother-in-law all the time; I refuse to use the abbreviation of "BIL" like people do with "MIL" (mother-in-law) and other similar titles) are only here with us until tomorrow morning when they head up to Boston for the wedding they're here for. *sigh* Oh well, it's been nice having them here for the short time they were able to be here!
On a fairly serious and sad note, I learned today that the Lyme world lost another friend. Her name was Rose and I knew her through a Lyme e-mail group where she was a co-moderator. There isn't any word yet on the cause of her death, but I'm sure Lyme played a role. It's sad and sobering to hear about these deaths - so close to home. Please keep her family in your thoughts and prayers. Please also keep Tara and Heather in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Tuesday, April 17, 2007 10:57 PM EDT
--Harvey Fierstein
Hi Everyone,
Sorry for such a long lapse in updates. I've been busy, tired, etc. and updating just hasn't been at the top of my "to do" list. It took me a while to recover from that night of dizziness (which I now can identify as bad vertigo). My dad and I made the trip to see Dr. Bock on Friday and it was a good appointment - everything looks pretty good so we're continuing with things the way they are. He gave me a script for something to help the vertigo if it happens again so I got that filled and will keep it with me but hopefully I won't need it. My dad and I stopped at my aunt and uncle's for dinner on the way home which was nice as always. Then I had all day Saturday free - I would have been working but since I thought I was going to be at my aunt and uncle's Friday night to Saturday I got the day off work so I was free as a bird! Well, not exactly as I had a lot of homework to try to catch up on. I did my two history lectures for this week and finished my lab for my science class. And that night my sister and brother-in-law got here from Oregon! It was actually early early on Sunday morning so we didn't visit for too long before heading to bed. Sunday was an early church day with choir rehearsal and I stayed for a while during coffee hour catching up with some people. My aunt and uncle were supposed to come for brunch on Sunday to visit but my aunt had a migraine so they had to cancel which unfortunately means that they won't get to see my sister and brother-in-law while they're here. But we still had brunch which was nice. And Sunday was a long day of visiting, having to re-create my science lab (I swear I don't know what happened but my computer somehow managed to lose the file and it didn't submit correctly so the TA grading my labs didn't get the finished copy! that was stressful), and hanging out with the whole family. Me, my sisters, brother, brother-in-law, and brother's girlfriend all stayed up late on Sunday night just hanging out in my brother's room. It was really nice and I wish we had more time all together. Yesterday (Monday) was another free day. My sister and brother-in-law left on Monday morning to head to my brother-in-law's parents' house and they'll be back here tomorrow until Friday. I didn't do that much yesterday besides resting and sleeping (I slept a lot). And today I slept a lot again until I had to go to work where I managed to get some school work done. Then choir rehearsal and now home doing my Primaxin and hoping to get to bed soon. Tomorrow I'm working again (hoping to get more school work done) and then I'm sure I'll hang out with my family/siblings again in the evening. And Thursday is free - probably more family/sibling time (I thought I'd be working but my boss said she'll be able to work on Thursday and Friday) and Friday is also free, I'll probably spend the day doing school work. And on Saturday I work and then go to a concert at church that evening and back to church on Sunday.
Health-wise I've been pretty worn out from the night of vertigo last week and the late night on Sunday, had some headaches but they haven't been too bad, and my stomach is having some more troubles so I'm back to a basic diet for a while. Nothing much else to report. My labs last week were normal (except my BUN which dipped low again but it bumps around a lot). I've struggled some lately with more concentration problems - today was a bit difficult trying to do science reading but I managed alright once I started reading it outloud, that seems to help me focus more. And now it's taken me more than an hour to write this update (I think an hour and a half since I started) so I'll stop here. I'll try to update again soon and I'll include some pictures of me and my siblings/family (my dad took a bunch the other day). Now I'm going to head to bed and wait for my Primaxin to finish up. Please keep Tara and Heather in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Thursday, April 12, 2007 11:50 PM EDT
And I'm usually the first one to make a mistake
Oh but God only gives us as much as we can take, I bet..."
--Lori McKenna
Hi Everyone,
Well, a little change in plans. I had a really rough night last night - some of the worst dizziness I've ever had where the room was spinning and any movement of my head brought on horrible waves of nausea and I had no sense of balance or equilibrium - so I didn't get much sleep (or at least not much restful sleep) and today I was very foggy, still not recovered from all the dizziness and horrible feeling from last night, and I just wasn't feeling well. But I made it to work and had a good time with some of my Charlotte's Web kids making some set and prop pieces and I dragged (drugged? drug?) myself home and finished packing to go to my aunt and uncle's house and was in the car about 15 minutes away when I realized I forgot the syringe needles I need for adding the supplements to my bags of saline. So I turned around and came back home to get them and decided I was really not up to making the drive. It was already after 7pm and it's about a 2 hour drive so I think I made a good decision. Instead of me going to my aunt and uncle's tonight and then driving the rest of the way to Dr. Bock's tomorrow, my dad is going to make the drive with me tomorrow all in one day. So I won't get to spend the extra time with my aunt and uncle, but I won't have to do the driving and I'll get to spend the day with my dad which is good, too. And I can get some homework done in the car if I'm up to it (I'm a bit behind this week, unfortunately, but plan to catch up this weekend and early next week). Anyway, I just really hope I don't have a repeat of last night again anytime soon, it was really pretty scary and I'm surprised I didn't throw up or pass out or anything in between. It probably looked pretty funny when I was trying to throw and push stuff off my bed without moving too much in order to make a little "nest" that I could go to sleep in. I didn't manage to get up and brush my teeth and getting up to turn the lights off was quite an adventure. But I made it through it and I'm feeling better now. Hopefully it was just a fluke and/or Dr. Bock will have an idea about what was up with it. I also did labs today (forgot to yesterday) so that might give a clue to what's going on, although I'm not sure it will. And I took a shower tonight which made me feel better and took a break from the IV Primaxin (antibiotic) today. The whole dizzy spell started towards the end of my evening infusion last night and I think my body just needed a bit of a break to clean itself out and get a little rest. But tomorrow I'm back on it as long as I'm feeling alright.
Well, I'm going to head to bed now. I have an early morning tomorrow heading off to Dr. Bock's but I can sleep more in the car if I need to which will be nice. Please keep Tara and Heather in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Tuesday, April 10, 2007 11:43 PM EDT
--Mark Twain
Hi Everyone,
I have survived another tiring, hectic Tuesday! I swear, these theater kids are giving me more grey hairs every week and today I actually had to threaten my Peter Pan group with cancelling their performances because they were doing so badly with their lines but hopefully that was enough to show them the importance of putting in time with their lines between this week and our next class in two weeks (next week is school vacation so no class). But let me back up first and cover the time since my last update. I can't believe it's been since last Thursday, the day I got my hair cut. Let's see...what's happened since then. Friday was a quiet day but I honestly can't remember what I did that day other than some school work and resting (and getting used to my new haircut). I had a long day on Saturday - worked from 10am-2pm and then had Charlotte's Web kids coming in at various times until 5pm doing costume stuff which made for a long day. But I had about an hour free in the middle of the afternoon so I set myself up in the theater with some tea and one of the books for my independent study and had a little rest, although it's probably not quite normal to set yourself up on stage to do school reading! And then when I got home I got busy baking for the bake sale at church on Sunday - I made carrot cake cupcakes and oatmeal cookies for the bake sale and rolls for our Easter dinner. And I got a shower in there, too (so strange to wash my short hair! I'll certainly save money on shampoo and conditioner!). Sunday (Easter) was another long day with church in the morning including singing with the choir and decorating blown eggs with the kids and then helping with getting our Easter dinner ready. My brother's girlfriend and her mom and my sister's boyfriend all came to dinner and it was nice but we didn't have it until fairly late so it was pretty late by the time we were done. And I got some homework done during the day, too. Monday was a school day for me. I went up to school about an hour early and set myself up in the library to do some reading which was helpful. I had a good meeting with Maya (my independent study professor) and I think I'm in good shape for getting my paper done by the end of the semester. And today has been, as I said before, a tiring, hectic Tuesday. I really do love teaching my theater classes and the kids are great for the most part but when they don't pay attention (which is a lot of the time) and obviously aren't putting time and effort into working on their lines (which applies to a lot of the kids) it just makes me want to rip my hair out or throw them out the window! Thankfully neither of those things has happened...yet but I'm learning that I have to be stricter in order to make progress with them so at least that seems to be helping. And I made it to choir rehearsal for the last 20 minutes or so but it was worth it, even with the struggle I had to get there (and seriously considered turning around and going home quite a few times). The rest of my week looks pretty busy. I'm working tomorrow and Thursday with some Charlotte's Web kids coming by after school both days to help with scenery and props (mainly making the letters to go in Charlotte's web) and then Thursday night it's off to Connecticut to my aunt and uncle's and on to New York to see Dr. Bock on Friday and home on Saturday. And on Saturday night (well, more like early early Sunday morning) my sister and brother-in-law are coming from Oregon!!! They have a wedding to go to next weekend and they're coming early to spend some time here and go visit my brother-in-law's family in NY and I'm really looking forward to seeing both of them!
Health-wise things are okay except for this horrible reflux that is still a big issue. I'm expecting to have to go forward with the tests when I see my GI next month since the Prevacid doesn't seem to be doing much of anything. I actually think I was doing better on the Prilosec! Other than that I'm pretty well holding my own and still seeing slow improvement with the continued IV antibiotic treatment. I'm recovering pretty well from the week of IV Flagyl last week but not getting as much rest as I really should be. There's just too much to get done in the next month that there doesn't seem to be enough time for resting! But I'm sleeping better and consistently getting to sleep by 1am (which is pretty darn good compared to the frequent 3 or 4am bedtimes I was having for a while). And today I was able to sleep in late (until about noon) which was really good and I really needed it. The next two days I'll also be able to sleep in a bit (have to be at work at 1pm) and hopefully I'll just have enough time (and energy) to get my online school work done at work and afterwards at home (I'm not too worried). Tomorrow I have to do my weekly labs (hopefully everything's still looking good!) and, as I said, Friday I have an appointment with Dr. Bock - no other medical stuff going on this week. And now I've been writing this update for an hour! I better get ready for bed and hit the hay. But first, here are a few pictures from near school that I took yesterday (it was a beautiful day):
Please keep Tara and Heather in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Sunday, April 8, 2007 11:55 PM EDT
Thursday, April 5, 2007 9:07 PM EDT
--G. C. Lichtenberg
Hi Everyone,
Well, my head is significantly lighter now! My hair has been chopped off and now I have a much shorter, curly hairdo! Of course I have pictures (they were all excited at the hair dresser and my hair getting chopped off was the center of attention for a while):
And during the haircut
Starting to cut...
Mid-cut...
Cut off!!
And my hair after the braid was cut off (there's a reason you don't cut hair like that if you want a GOOD haircut)
And...(drumroll, please)...the new hairdo!
Quite a change. It's weird getting used to it but I'm so happy with the way it looks and the length it is, although it will take some time to really get used to it. And my dad pointed out that the way it looks right now is very similar to my older sister's hair when it's the same length. Here's a picture of her from when we went to England in 2000 (the best one I could find and scan into the computer so excuse the fuzzy picture):
So now I just have to fill out the form and follow the instructions to send it off to Locks of Love!
Okay, in other news...well, not that much other news to report. I've started my online classes and so far I really like the history class. The format is different from my previous classes with lectures recorded and available online - basically powerpoint presentations with the professor's voice recorded with it so it's more like a lecture than just reading through powerpoint slides. I've done both the lectures for this week so I'm good with that - just have to post some discussion stuff. My geosciences class is a little more slow moving but I have talked to the professor (well, I've e-mailed both of them but only heard back from the geosciences one) about my health situation so she's aware of it and she's understanding and flexible so that's good. Umm...theater classes were okay on Tuesday, not great but okay. And I made it to the end of choir rehearsal which was nice. Yesterday I got an oil change (or rather my car got an oil change) and ran a few errands - nothing too exciting. Health-wise things are okay - a bit of a rough week with the Flagyl but not too bad. I'm done with the week of IV Flagyl now (as of this afternoon's infusion) so that's great - 3 less hours a day to be hooked up to IVs. I had a bad headache this morning and some nausea that wasn't too pleasant but I managed with it okay. Now I'm just getting ready to hook up my Primaxin and snuggle down with either a book or a movie (darn Grey's Anatomy repeat) - probably a movie since I'm a bit too tired to read right now.
Please keep Tara, Heather, and Malisa in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Monday, April 2, 2007 10:50 PM EDT
--E.E. Cummings
Hi Everyone,
Wow, I didn't intend to go this long without updating but time just got away from me a little. I had a good visit with my aunt and uncle from Wednesday (when I last updated) until Saturday morning. The weather was gorgeous and I spent a lot of time resting/relaxing/reading on the couch in their sunroom that overlooks their great backyard on the Connecticut River. I didn't take any pictures so you'll just have to imagine it with the birds twittering and the squirrels hopping around and the sun shining down - really a nice way to spend a few days. On Thursday I had my phone meeting with Maya, my independent study professor, which was mostly just to touch base and it didn't last too long. And on Friday I went out shopping for quite a while, mainly on a quest to find some of the props and costumes I need for my theater classes which I partially succeeded at. I also went to Old Navy and got a cute kind of dressy summery dress and a few pairs of flip flops (can't beat 2 for $5 in a lot of different colors!). And that night I met up with David, the pharmacist from my infusion company, which was really cool. So nice to finally meet someone in person that I've been communicating with for almost 2 years! He brought up some of my supplies and we only had a few minutes to talk but he said next month when he comes up we'll meet up and he'll take me to dinner so we have more of a chance to chat. He thought my infusion backpack was really cool and creative (I can't take the credit for the idea, that was all Tara - if you don't know what the backpack looks like, see the picture in the top right corner of my DYNA summer chill collage, the picture of Diana and I with our super cool infusion backpacks) and it was just great to feel a little more of a connection to the infusion company. And I stopped and picked up dinner at Cracker Barrel on the way back to my aunt and uncle's (they were out at a dinner theater that night) so that was good. And I headed home pretty early on Saturday morning and made it to work at 10am where I was until about 4pm because of Peter Pan costume fittings. It was a long day so I pretty much came home after that and collapsed into bed, took a nap, rested, and didn't do much of anything. Sunday was church in the morning and a lot more errands in the afternoon and today I went up to school to meet with Maya, go to the library, and run a few more errands when I got home. I now have almost all the props I need for Charlotte's Web (there are A LOT) and most of the ones for Peter Pan. Probably a few more trips out various places and some asking around for things people might already have and things should be pretty well set! Oh, and I talked to my older sister (who lives in Oregon) last night which was nice and my aunt called me today and we talked for a bit.
Health-wise things are pretty much the same. Still plugging along with my infusions (I'll be really glad when this week of Flagyl is over on Thursday because the schedule is such a pain in the neck) and I have to say again how much of a difference having the second portable pump has made - a new sense of freedom, although I'd rather have the sense of freedom of not having to be hooked up to IVs at all, but I guess we have to take what we can get. My stomach is having ups and downs but that's pretty much normal and I'm pretty exhausted but I've overdone it WAY too much lately so that's not surprising at all. I just have to make it through my theater classes and however much of choir rehearsal I can make it to tomorrow and then I have a few relatively quiet days. My car gets an oil change on Wednesday and I'll probably run more errands either before or after that (probably after so I can sleep in very late) and on Thursday I have my big hair cut! I think I'll straighten my hair before then to take a few last pictures of it. It will certainly be a big change! Oh, I was talking about health stuff, though. Last week's labs all look good - everything in normal range! Woo hoo! And not only in normal range, but well into the normal range! Umm...reflux is still an ongoing issue so I'm gathering I'll end up having the GI tests done next month when I see Dr. R (GI) but I'll keep hoping that the prevacid just hasn't kicked in yet, although it's been more than a month so hope is waning. And I don't have any doctors appointments this week and didn't have any last week which is a nice break. Last week when my cold was bad my mom asked me if I needed to go to the doctor and I said, "NO! I don't have any doctor's appointments this week and I plan to keep it that way!" LOL Oh, and my cold is much better so it doesn't look like it's one of my traditional hang-around-for-months-never-quite-get-rid-of-them colds.
In other news, my two online classes for the spring quarter have started (I thought they didn't start until tomorrow but I signed on to Blackboard tonight just to see and they're up and running). It's going to be a pretty crazy next few months and I just hope I can keep my head above water and finish all my school classes and my theater classes without falling apart. I think that pretty much catches you all up on things. I'll try to be better about doing regular updates (not that this lapse was really THAT long). Oh, and has anyone had issues with my guestbook? I know of one person having problems of it kicking her off my page AND off the INTERNET but I haven't been able to figure out what's going on so if anyone else has problems, please drop me an e-mail to let me know. Please keep Tara, Heather, and Malisa in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
(Can you believe that from start to finish it took me more than an hour to write this update? Talk about being distracted and rambling on! Brain fog at work!)
Wednesday, March 28, 2007 11:24 PM EDT
--Anonymous
Hi Everyone,
Sorry it's been a few days without an update. I was going to write one last night but then ended up falling asleep so that didn't happen. I'm at my aunt and uncle's in Connecticut now until Saturday morning (early morning when I head home to be at work at 10am). But I'll back up and recap the past few days. On Monday I didn't talk to or meet with my independent study professor because I wasn't feeling up to it so we're scheduled to have a phone meeting tomorrow afternoon. So I spent most of Monday in bed resting except for a few quick(ish) errands in the afternoon. Tuesday was quite a bit busier with my three theater classes. I have to say that with a cold, teaching theater and trying to talk over kids becomes much more difficult but I managed pretty well. Actually my middle class (Charlotte's Web group) which is usually my worst group as far as staying under control and keeping quiet and out of trouble was actually possibly my best group. I let all the classes knwo at the beginning of class that I had a cold and wasn't feeling well so I needed them to try to be extra good at paying attention to me but my other two classes didn't do as well (although my little kids, the first class, were pretty good except for three of them forgetting their scripts and none of them really having anything memorized). I think part of the reason for my middle class doing better was that I was clear that there were certain rules in effect - specifically that there is to be NO hanging out in the kitchen area (you can get there from backstage but there's no supervision back there and they tend to make a mess) except to use the rest room and if there were continued issues with kids hanging out there and making messes, there would be calls to and possibly meetings set up with their parents. So, anyway, whatever it was that made them behave it was really nice and gave me hope that they'll pull their act together and get the play in good shape in time for the performances in 6 weeks. My last class (Peter Pan) on the other hand really wasn't very good at all, kept making a lot of noise backstage, some of the kids very obviously had done NO work at all on their lines (they were supposed to be off book yesterday), and were generally not in good shape. But I'll keep working with them and probably give them the same "strict rules" speech next week that I gave the Charlotte's Web group this week. Anyway, there was no choir rehearsal this week so there was no question about going or not going and I got to just come home after the classes were done. I was really exhausted and rested and watched some TV until I could go to bed.
And today started out with breakfast with my mentor/friend/childhood theater teacher Jess. It's so nice to see her and she really knows me and has been such a wonderful friend to me since I was little (I've known her since I was 8). And she knows the whole work dynamic that I work in and the issues I encounter there because she dealt with that herself for many years with the same boss as me. She's just an amazing person and has helped me so much during the course of our friendship so it's always refreshing to see her and catch each other up on our lives. After that I ran some errands (including opening a savings account - kind of a big deal for me but I won't go into that here), came home, packed, and headed off on the road to my aunt and uncle's house. It's nice to be here and have a few days to relax, catch up on reading (both for school and for pleasure), take it easy, and have a nice visit with my aunt and uncle. I really need the break, especially as I gear up to start my final two online classes next week (it's going to be quite a feat to keep my head above water between now and mid-May as I'll have my independent study, those two online classes, and my three theater classes getting ready for their performances the first two weekends of May!) and try to get some serious work done on my independent study.
Health-wise I was doing better yesterday and today stomach-wise by taking it easy with food but this evening I made the mistake of having some Twizzlers and that wasn't a good idea at all - nausea, reflux, just not a good situation. But being better about just eating a little bit and sticking to easier foods for a while seems to help so I'll continue with that at least through the weekend. My cold is getting better - it actually feels a whole lot better tonight than it even was this morning. I'm much less stuffy (can actually breathe through my nose!) and my chest feels a bit better but the cold is still lingering around so we'll see how these few days of rest help. Other than that I'm doing relatively well. I start my week-long pulse of IV Flagyl tomorrow (was actually supposed to start it this afternoon but thought it might be best to not be juggling too many infusions while driving!) so hopefully that will go smoothly. Yep, that's pretty much it, nothing too exciting. Oh, and I drew labs today (after almost forgetting to until I started packing up my IV supplies!) so I'll know what those look like when I get home on Saturday (and maybe sooner if I call home before then). I'm not doing terrific with protein intake but I've found a type of string cheese that has a decent amount of protein and a few other little things that I can try to add in here and there to boost that a bit, but I know on days like today when I'm just not up to eating a whole lot I'm definitely not getting anywhere near enough. There's always tomorrow to try to do better, though! Now I'm off to curl up on the couch, watch some TV, try to do a little more school reading, and then head to bed once my Primaxin infusion is done (probably another half hour or so).
Please keep Diana, Tara, Heather, and Malisa in your thoughts and everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Sunday, March 25, 2007 9:35 PM EDT
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you..."
--Wicked
Hi Everyone,
This cold has really knocked me down more than I realized. I thought I was doing okay, managed through yesterday with work and the dinner theater evening at church (I sang, more on that in a minute) and did well during church this morning and thought I was still holding up okay but I have to say that in the last hour or so I've just felt all the energy drain out of me. I'm coughing quite a bit, have a stuffy head, and chest congestion and just exhausted. So I'm going to lay low tomorrow, cancelled my meeting with Maya (my independent study professor), and other than a few errands I won't be going out at all (I have to go to the bank and to drop off my car insurance payment, but that will only be a quick trip out). On a positive note, the extra fluids I ran overnight on Friday seemed to help a lot yesterday. I had a pretty good morning and made it through the day without any major crashes. And last night was the dinner theater at my church (well, not a full-blown dinner theater, more like appetizers, entertainment, and dessert). I was worried that my cold would be a problem and even when we were rehearsing right before it started I wasn't sure it was going to go well but I used some nasal spray right as things were starting and it cleared up my congestion long enough to do my songs and they went really well. My mom and I did a duet of "For Good" from Wicked which I dedicated it to Caitlin. And I sang "Gypsy Rover", too. Both songs went well, better than I was hoping for, and people couldn't tell I had a cold so I really love Afrin nasal spray! Today at church I began my religious education teaching stint (which will go through May) which went well but there were only three kids in my class today so it wasn't a true feel for what the class is like. The kids are great kids, though, and so smart and insightful!
Okay, I'm going to hook up my Primaxin and curl up in bed. Tomorrow I lay low, Tuesday I have my long afternoon of teaching theater classes, and then the rest of the week is going to be relatively quiet - meeting with my friend/mentor on Wednesday morning and then heading to Connecticut to visit my aunt and uncle for the rest of the week and meet up with the pharmacist from my infusion company who will be up from Florida for a few days. Please keep Diana, Tara, Heather, and Malisa in your thoughts and everyone else having a rough time. And my little buddy Lexie could use some extra good thoughts and prayers. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you all had a good weekend!
Friday, March 23, 2007 8:30 PM EDT
And the fear struck fearless be.
May the grieving shed all grief -
And the sick find health relief.
--Zen chant
Hi Everyone,
Just a few things I wanted to update on now while it's still relatively early since it seems I don't get around to updating if I wait until later in the evening. First of all, I got an A on my final exam essay for my online class - woo hoo! Writing has always been one of my strong areas so I wasn't entirely surprised but I always worry that my writing doesn't make much sense or isn't following the directions correctly but somehow it always seems that the papers I write that I feel are all over the place are the ones that get the best grades, go figure. Anyway, there's just one outstanding grade (for the final week's discussion) but that isn't really going to affect my grade since it's such a small percentage of the overall grade. So I ended up with an A- in the class which I'm quite pleased about. On a not-so-great health note, I woke up this morning with a cold. Ugh, not something I needed right now (not that there's ever a time when anyone needs a cold). It's kind of partly in my head (stuffed up, fuzzy, etc.) and partly in my chest (congested, cough, trouble breathing) and it seemed to come on pretty quickly so I'm not quite sure what kind of cold it is (hopefully it's just not the flu) and what type of course it's going to run. So I spent the day in bed, resting, sleeping, watching some DVDs, and just generally laying low. I had a rough morning which started with my antibiotic pump giving me a hard time - kept beeping because it thought there was high pressure but it would beep for like a second, then stop, then a few seconds later do it again and I checked the line multiple times and didn't see any kinks or twists so I don't know what was going on with it. Anyway, it kept me awake pretty much from 8:30am on and then when I got up to go get a drink and use the bathroom I had a repeat of the cruddy feeling I had on Sunday and Monday mornings - dizzy, faint, nauseous, trouble breathing, etc. - which makes me wonder if the cruddiness earlier in the week was because of this impending cold. Once I got my fluids hooked up for a little while I felt better so I'll probably run extra fluids overnight tonight and see if that helps tomorrow morning, especially since I have to work tomorrow. And in other health news, my appointment with Dr. H yesterday went well. The main issue is my amino acid labs being so low. So in the next month I have to try to get in extra protein wherever I can since I'm not getting anywhere near enough in my diet (protein is one of the hardest things for me to tolerate) and if I can't get enough in, I'll have to start doing infusions of an amino acid supplement. I'll have the amino acid testing done again in a few months and that's when we'll figure out what to do.
Okay, I'm going to make myself a little something for dinner and spend the rest of the evening resting in bed and probably pop in a DVD to watch (I'm almost done with my Netflix DVDs but the one that I'm partway through now is in a foreign language and subtitled so it takes a bit more energy than I have, but we'll see if I'm up to it in a little while). Please keep ^^Kelly's^^ family in your thoughts as well as Diana, Tara, Heather, and Malisa in your thoughts and everyone else having a rough time. And my little buddy Lexie could use some extra good thoughts and prayers. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Thursday, March 22, 2007 1:03 AM EDT
--Edmund Burke
Hi Everyone,
Just a quick(ish) update tonight before I head to bed very soon. A few exciting things to report on. First, I'm officially done with my online class for the winter quarter! I wrote my final exam essay and e-mailed it off and finished up this week's discussion requirements so I'm done! I have a few weeks off until the spring quarter classes start which leads me to exciting thing number two. I have registered for my last undergraduate classes! A few days ago I went ahead and registered for my spring quarter online classes - a geosciences class called The Solid Earth and a history class focused on The Holocaust - which will be my last undergraduate classes before I have enough credits to graduate! Yes, it looks like I'm finally going to finish and, barring any major complications this spring (*knock on wood*), I'll be done in mid-June well in time for my August graduation plan. Woo hoo! And the third exciting thing is not school related but medical related - my infusion company got me a second portable pump to use with my antibiotic infusions so I am much more ambulatory and don't have to constantly be judging whether I can leave the house based on when I have to do my infusions. Yay! Maybe it's pretty sad that that's such an exciting thing but I guess it just doesn't take much to make me excited.
As for other news, I had another rough morning on Monday but ran extra fluids that day/night and things have been better since then. I guess it's just a lesson that I need to be sure to stay on top of my hydration or pay the consequences. I made it up to school on Monday and met with Maya which was good, then went to rehearsal at church that night for the dinner theater on Saturday. Tuesday I had a long day of work and teaching my theater classes - I swear I get more grey hairs every week during the classes. The kids in my Charlotte's Web group were really awful this week so I'm going to have to do some brain storming of how to get a better grip on them. I didn't make it to choir rehearsal but that was okay, we're not singing for a few weeks (Easter). And today I spent the whole day working on the final exam essay and trying to take it easy. Tomorrow I have to be up pretty early to head to see Dr. H (PCP) - I was supposed to see her a week from tomorrow but got a call this morning that she'd be out of the office that day so I could either see her tomorrow or in two weeks so I opted for tomorrow. I got the results of the testing she ordered (amino acid levels and some other similar testing) and they were really off, a lot more off than I was expecting, so I'd rather talk to her about that sooner than later. And Friday I have nothing I have to do! Looking forward to that and planning to do some reading for my independent study and watch some of the things I have from Netflix (gotta stay on top of those to get my money's worth!). Health-wise things are a bit rocky right now but not too bad. The few rough mornings kind of threw me and it's taken a while to recover. I'm finding that my afternoon Primaxin infusion is wearing me out quite a bit and I feel like I need to take a nap towards the end of it but I don't always have the opportunity for a nap so I just push through. I'm trying to get my infusions on a better schedule so I can get to bed earlier (although even when that happens I don't always get to bed early, like tonight). My stomach was causing some major problems tonight as I was getting ready to eat dinner so I spent quite a while with my heating pad on my belly and it's feeling better now, although not pain-free. But now it's definitely time to head to bed.
Please keep ^^Kelly's^^ family in your thoughts as well as Diana, Tara, Heather, and Malisa in your thoughts and everyone else having a rough time. And my little buddy Lexie had a really rough day today and could use as many good thoughts and prayers as possible. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you all had a good weekend!
Monday, March 19, 2007 1:26 AM EDT
--Arthur M. Schlesinger, Jr.
Hi Everyone,
I just wanted to do a quick update tonight because today didn't start out good but it got better and I feel like I need to write about it. Today was music Sunday at church which is always a service that I look forward to and, as I ususally do, I was going to sing a solo with my brother on guitar. I woke up early to get to church early for choir rehearsal. Well, the morning did not start out well. I was really exhausted and as soon as I was up and walking around I knew the morning was going to be a challenge. I was feeling really sick - nauseous, shallow breathing, etc. I wasn't sure if it was dysautonomia related, hypoglycemia related, Lyme related, or any number of other things. Anyway, I made it out of the house and to church (thank goodness driving doesn't involve standing up or I probably wouldn't have made it out of the house!) and even though I was late for choir rehearsal I was there. I sat down during the whole rehearsal (found a little corner on the steps where I could still see the director well enough to follow) and I was honestly not sure that I would be up to standing up there and singing on my own later in the service. But during the rehearsal I kept my homeopathic nausea med close by which did seem to help. And as soon as we were done I took some Zofran and was slowly feeling better. And I had some very powerful prayers from my little buddy Lexie and her mom and sister which must have done something because by the time I got up there to sing I was feeling so much better. My song was...well, there was something there coming through me and I felt it so deeply and was able to convey it out to everyone else. It really was a great feeling and the whole service was wonderful and moving. I got to talk to some people afterwards and got a lot of compliments on my song (I sang the version of Somewhere Over the Rainbow arranged by Israel Kamakawiwo'ole which is so powerful for many CB families and it's one of my favorite songs) and just catch up with a few people. The rest of the day was okay - not great at times but not as bad as it started out. I took an hour-long nap after getting home from church which isn't really like me but I just couldn't keep my eyes open. I probably would have slept longer if I didn't have to babysit tonight. It's the night of babysitting that I offered for the people to people service auction at church and it really was a pretty fun babysitting time. The little girl I was sitting for is really cute and so smart for only being 4 1/2 and I really would love to sit for her again sometime. We just watched Peter Pan and Beauty and the Beast and then I put her to bed and that was that!
I'm heading to bed now (it's pretty late) and plan to get up early tomorrow and go to school in the early-ish morning to spend some time doing reading up there in the library or college center instead of here at home. My goal is to leave here by 9am but we'll see how the day starts out. I meet with Maya, my independent study professor, at 11:30am and may stay for a while afterwards to do more reading and such depending on how I'm feeling and how long Maya and I meet. Hopefully tomorrow won't start out the way today did. I think a big part of it was that I was dehydrated - I stupidly skipped my hydration yesterday because by the time I was going to bed I just didn't have the energy to get it ready and hook it up and figure out the rate I'd have to run it at to get it done before I needed to head to church. I really wanted to avoid being hooked up to fluids and have to drag my backpack around during church today since I'd be up there in front of everyone but when I got up and was feeling so awful I knew there was no way around it if I wanted to avoid passing out or throwing up in front of everyone! So, anyway, hopefully since I did get my fluids in today and I drank a fair amount I'll avoid a repeat of today tomorrow morning. Please keep ^^Kelly's^^ family in your thoughts as well as Diana, Tara, Heather, and Malisa in your thoughts and everyone else having a rough time. Please also send some good thoughts to my little buddy Lexie to get through some testing this week - she hasn't been feeling that great and her blood counts haven't been good so she can use all the good thoughts she can get! Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you all had a good weekend!
Saturday, March 17, 2007 11:43 AM EDT
HAPPY ST. PATRICK'S DAY!"And sometimes I don't have the energy
To prove everybody wrong
And I try my best to be strong
But you know it's so hard
It's so hard..."
--Dixie Chicks
Hi Everyone,
I wanted to at least do a short update today on my trip to CT and NY to see Dr. B. The appointment went well. It was great to have him come in the room and ask how I was and be able to reply with, "Okay." Okay may not seem like a big deal, but, as he noted, an okay from me is a very good sign. He was very happy that I'm doing better, tolerating all the meds well, my labs are all great, and generally things are looking good so we're keeping everything the same. We'll see how I do on this second month of pulsed Flagyl (one week of it) and if I notice that I go downhill a bit during the third week off Flagyl it we'll consider going to every other week instead of just one week a month or if I have trouble tolerating a whole week of it we'll think about doing it three days every week. So no big news from the appointment. It's nice to be able to go in doing better and continue to do better for a few months in a row. It's slow progress and I still have a long way to go, but it's all going well and, although I hesitate to say it, I think I'm doing better now than I have in a few years.
I also had a really good visit with my aunt and uncle. My aunt and I have really been able to connect more and more over the past...4 months (?) that I've been going to my appointments on my own and staying over with them. It has been really good for both of us, I think, and it's something I really need right now. She's helping me try to start sorting through some things and is just helping me so much. I always hate leaving (and they both hate me leaving, too) and if I didn't have to work today (which is where I am now) and had more medicine with me I would have stayed another night and come home sometime today. But, work got in the way. I am hoping and planning to spend more time there and get a Saturday off work sometime soon so I can spend more of the weekend there since we pretty much only have time in the evening to talk and we're both pretty tired so spending a Saturday there would be really nice sometime.
And, let me tell you, when I headed off on this trip I didn't realize there was a big snowstorm coming! It was snowing just a little bit when I got up yesterday morning and I stayed a while too long (at least when related to weather conditions - my aunt was working from home so we were still visiting) and ended up driving home in probably the worst part of the storm. The highways were kind of a mess and traffic was going really slow most of the way so that a trip that usually takes about 2 hours took six hours. Granted, that includes a little detour in search of a bathroom (didn't find one) and a short stopover at Whole Foods (where I did find a bathroom) but I was probably actually driving for about 5 1/2 hours - pretty crazy. Anyway, I made it home around 8pm and settled back in a bit. And this morning I'm at work. I didn't manage to do my Primaxin this morning because I (stupidly) set my alarm clock to go off at 7:30 PM because I had to reset it since I guess the power must have gone out briefly at home while I was gone. Thankfully my pump woke me up in plenty of time to get ready for work and maybe I just needed the extra sleep (although my pump also woke me up in the middle of the night needing the batteries changed).
Health-wise I'm feeling so-so. I'm really tired from the long drive and not getting a whole lot of sleep last night and my reflux is acting up as well as my stomach in general. I battled a bad headache yesterday but managed with it fairly well. I also just feel like I have a very fuzzy brain and I'm even foggier than usual but that's okay (well, it's not really okay but there's not much I can do about it). Work is pretty slow and easy today since my boss is away so I'm getting a chance to catch up on a few things, including school work that I'm a bit behind on. But this is the last week of my online class! The final exam is an essay (no test part this time - yay!) and that will be open from Monday to Thursday so after that I'll be done! But first I actually have to get that work done so I better get to my work work and then to my school work.
Please keep ^^Kelly's^^ family in your thoughts as well as Diana, Tara, Heather, and Malisa in your thoughts and everyone else having a rough time.. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good weekend!
Wednesday, March 14, 2007 8:34 PM EDT
Would you know me and see behind the smile
I can change like colors on a wall
Hoping no one else will find what lies beneath it all
I think I hide it all so well"
--Dixie Chicks
Hi Everyone,
Wow! An early update for a change! I'm not really doing a "real" update, just wanted to say that I made it to my aunt and uncle's safe and sound after a good but tiring day with about 45 minutes of ice skating in the early afternoon. It's so nice to be back on skates, even if I'm not quite as steady now as I used to be (but after a few minutes of skating around and ditching my winter coat I seem to get my "ice legs" back pretty well). So now I'm at my aunt and uncles and have a while to just hang out before I'll be done with infusions and can go to bed. Tomorrow won't be a really early day (my appointment's at 1pm and it's about an hour and a half to two hour drive) but I want to do my Primaxin a bit early so I can de-access, shower, and re-access before I go. On kind of a different note, and one I may write more on later either here or in my blog, today was a bit of a rough emotional day because in the mail were invitations for my brother and my parents to my ex-boyfriend's wedding. I've known this was happening for a while but seeing the invitations (just the evelopes, I didn't see the invitations themselves) was like a punch in the gut, reality kicking in. I won't go into it anymore but, as I said, this is probably something I'll be writing more on in the near future as it's something I have to come to terms with and deal with in my own way.
Okay, that's it for me. Please look at the end of yesterday's update for prayer requests and especially keep ^^Kelly's^^ family in your thoughts. I hope you're all having a good week so far!
Tuesday, March 13, 2007 11:15 PM EDT
Is that a song there, and do I belong there?
I've never been there, but I know the way.
I'm going to go back there someday.
Come and go with me, it's more fun to share,
We'll both be completely at home in midair.
We're flyin', not walkin', on featherless wings.
We can hold onto love like invisible strings."
--The Muppet Movie
Hi Everyone,
Boy, Tuesdays really take a lot out of me. And today was an even longer Tuesday than usual with a few hours of office work before teaching my three theater classes and popping off to the end of choir rehearsal. But let me back up to yesterday. I had a rough day yesterday where I was just hyperactive, couldn't sit still, couldn't think clearly, couldn't concentrate, and had a heck of a time trying to get my school work done. But I did manage to eventually get the weekly quiz for my online class done and my weekly writing assignment is going to be late yet again. At least I'm getting all the assignments done, I'm not stressing over when they get done. And now it's down to the last week for my online class! Woo hoo! Of course, with the hyperactivity during the day I had some trouble getting to sleep so it was a pretty late night (about 3am by the time I got to sleep, I think, or maybe even later) which led to sleeping late and being so exhausted while waking up to change the bags of Primaxin this morning I fell asleep before managing to actually swap the bags! I was awake long enough to mix the powder into the saline, see that the first bag had a little left to do so I had to wait a few minutes to switch them, and then was asleep before managing to actually make the switch. So I woke up a little before noon and noticed the second bag sitting there by my pillow and groaned. Since it was mixed it was only good for a few more hours and I had already figured I wasn't going to manage my afternoon infusion (my theater class times make it difficult) so I just hooked up the other bag and finished it up before drawing labs and heading to work at 1pm. Work was pretty quiet - I basically finished up the script stuff for my younger class (grades 1 & 2), tried out something for putting the writing up on Charlotte's web, ran home quickly since I forgot my Peter Pan script, and then had my four hours of theater classes. Let me tell you, the classes were a bit out of control today. The youngest class was good and did a great job reading through their script (I'm impressed with the reading skills of some of the first graders!) and I'm happier with the script I wrote than I was before. But the Charlotte's Web kids were just out of control - making messes in the kitchen, talking way too much backstage, not concentrating on what we were doing, and making me yell way too much. The Peter Pan group was better but still pretty crazy and all over the place. It's weird, the Peter Pan group only has 2 or 3 less kids than the Charlotte's Web group but boy are they a heck of a lot harder to handle! I need to figure out some better ways to regain control when things get chaotic...screaming and yelling definitely doesn't work and is awful for my throat and voice. Okay, anyway, the classes were okay but draining for me but I still made it off to the last half hour of choir rehearsal. Of course when I got home I pretty much collapsed. Tomorrow is going to be a bit of a different day than I thought. I have an appointment with Dr. Bock on Thursday so my dad and I were going to both go to my aunt and uncle's tomorrow night, then I'd go to Dr. Bock's on my own on Thursday while my dad stayed behind at my aunt and uncle's to work, and we'd head home that night after dinner. But, my dad is sick. Yep, he has the flu - fever, fatigue, the whole nine yards. So it looks like I'll be making the trip by myself and staying over with my aunt and uncle tomorrow (Wednesday) night and Thursday night and heading to Boston on Friday morning to meet with Maya, my independent study advisor, and then home. And I'm really hoping that I'll be up to going skating tomorrow, too. I've been wanting to go for awhile now and tomorrow I'll have the time free when public skating happens at the rink I used to skate at so if I'm at all up to it I'm going to go.
Health-wise I'm hanging in there. I'm tired and my throat hurts tonight but I don't know if that's from reflux, from yelling too much today, or from something else (or, more likely, a combination of things) and of course the whole hyperactive thing yesterday was hard to deal with but overall there's not a whole lot to complain about. Or at least I won't complain. My stomach is still pretty iffy most of the time but I'm managing alright. I'm on a bit of a sherbet kick right now as a change from the usual no sugar added low fat ice cream that helps to fill out my diet (lol). And I have some yogurt things that I can generally handle and my usual cup-a-soup and cream of wheat/oatmeal and saltine staples. At least I'm not having much trouble keeping up with fluid intake. And now my Primaxin is done (I started it a bit earlier than usual) and I'm going to head to bed and hope for a restful night's sleep.
Please keep ^^Kelly's^^ family in your thoughts as well as Diana, Tara, Heather, and Malisa in your thoughts and everyone else having a rough time.. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week so far!
Monday, March 12, 2007 1:59 PM EDT Heaven has another angel. Kelly earned her wings early this morning. She's such a fighter and now she is free from pain. Please keep her family in your thoughts and prayers.
Sunday, March 11, 2007 10:14 PM EDT
I hope, we'll have more than we'll ever need
I hope, we'll have more happy ever after
I hope, we can all live more fearlessly
And we can lose all the pain and misery
I hope, I hope..."
--Dixie Chicks
Hi Everyone,
I wanted to write a quick update tonight. The past few days have been okay - not too exciting which is fine by me. Friday was a very quiet day - I didn't get out of my pajamas or leave the house which I really needed. Then on Saturday I worked from 10-2 which wasn't too exciting - I mostly worked on stuff for my youngest theater class (writing their script basically and then adapting an alternate story into a script which I think we'll most likely end up doing - the story of Chicken Licken (aka Chicken Little)). That night I went out to a pot luck dinner at church followed by the People to People Service Auction. I offered an evening of babysitting which was sold and I'll be doing that next Sunday evening (talk about getting it done fast!). I was glad to be able to offer something. And my dad bidded on a few things and won a few things including both of us to go to one of the church member's house to watch a Red Sox/Yankees game on their big screen TV and have Fenway food and a lot of fun so I'll look forward to doing that this summer sometime. After getting home from that my mom and I had to practice the songs for me to sing at her church this morning so we were up a bit late doing that. And then of course we lost an hour overnight (or rather it's being held hostage until the fall). I really hate "springing ahead" - I liked that hour! That hour of sleep is really nice! It didn't help anything that I had to be up early to get to my mom's church early to practice but that was okay - I just wasn't really awake for most of the day (if I don't have a chance to wake up properly in the morning it's just a lost cause for the rest of the day). The service went well and my songs (I did four at various times in the service) all went well and I got a lot of compliments from people after the service. When I got home I made chocolate chip cookies (my adapted ones that I can actually manage to eat - more of a cross between a cake and a cookie since they're made with mostly applesauce instead of butter), had a nice long talk with my mom about various things, and attempted to start some homework but didn't get much at all done. But I did get a call from Maya, my advisor and independent study professor, letting me know she has the flu (yuck!) and needed to cancel our meeting for tomorrow because even if she was feeling up to making the meeting, she didn't want to risk getting me sick. So I don't have to go to Boston tomorrow which is great and we're meeting on Friday instead which will be fine. Umm...I think that's about it. Health-wise things are going okay. I'm worn out and just feel kind of out of it most of the time but nothing too bad. My stomach seems to be doing a bit better but still not back to my normal.
Okay, I'm going to watch one of the Netflix movies that came in the mail yesterday, settle down with a bowl of sherbet, hook up my Primaxin, and relax for the rest of the night. Please keep Kelly, Diana, Tara, Heather, and Malisa in your thoughts as well as everyone else having a rough time.. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you all had a good weekend!
Thursday, March 8, 2007 11:53 PM EST
--Unknown
Hi Everyone,
I'm sitting here on my bed in the midst of half-finished homework with about a dozen browser windows or tabs open so I guess I'm a bit scattered tonight. But I wanted to be sure to put up an update so the half-finished homework will have to wait a little while. Yesterday was uneventful - I did my last flagyl infusion of this week-long pulse of it (yay!), drew my weekly labs, and worked from 1-5pm which wasn't too exciting. I didn't manage to get all my Primaxin infusions in yesterday - only did 500mg for my afternoon and evening doses because I ran out of time at work to finish the afternoon one (and I wasn't feeling great) and for my evening dose I was already falling asleep and not feeling great so I opted to go to bed earlier rather than getting the 250mg bag in. Now, on to today! I had my appointment with Dr. R (GI) up in Boston this afternoon so I took the train up in the late morning and had some time to kill when I got up there so I spent it doing homework in the cafe at the clinic and actually got quite a bit done there and on the train (maybe I should start taking the train up to school when I meet with Maya every other week so I'll have that extra time to get work done...or maybe not). My appointment with Dr. R was good. He had a doctor from Italy with him who I got to talk to quite a bit while Dr. R was on a (rather lengthy) phone call during my appointment but that was okay, I enjoyed talking to him and discussing things. Since overall I'm doing okay GI-wise we're not changing much. The main thing we're keeping an eye on is the reflux. Since I'm still having reflux issues on the high dose of Prilosec he's switching me to Prevacid on a pretty high dose (he said there was no reason starting at a low dose since we know a high dose of Prilosec didn't do the trick) and when I go back in two months, if I'm still having reflux problems, Dr. R will do an endoscopy and 24-hour pH study to see what's going on and if there's anything else that needs to be addressed. I also talked to him about my concern that there may be an underlying metabolic disorder contributing to my health issues so he gave me the name of a doctor at another hospital in Boston to make an appointment with to be evaluated. I just want to make sure there isn't anything there that we're overlooking but there will probably be quite a wait to get in to see this other doctor so it's not a rushed situation at all. Nothing else really to report about the appointment.
I got my weekly lab results today and, although everything (except the BUN, which is one point below normal) is in the normal range, I don't like the looks of the trend things have taken in the last few weeks. over the last 3 weeks or so my red cells, hemoglobin, hematocrit, and alkaline phosphatase have been slowly dropping and now my red cells and hemoglobin are both right at the borderline of being low. My white cells dropped a bit from last week but they're still in a good place (and they tend to bounce around a bit anyway) and the major liver numbers are all really good (one of those supplements must be working to keep my liver happy!) so at least some things are looking good (although I just took a closer look and my AST jumped up quite a bit from last week but it's probably not anything to worry about). I'll have one more week's labs before I see Dr. Bock next Thursday so we'll have to wait and see what things look like then. I stopped the iron supplement a few months ago because my iron levels and everything were fine and Dr. H (PCP) and I agreed that it would be okay to stop it but I'm thinking I may need to re-start it if my red cells and hemoglobin continue to drop. And not being able to eat well for the past week probably doesn't help anything. Oh well, I won't worry too much right now since nothing is actually out of range.
Health-wise things haven't been great these past two days but I'm managing pretty well. I had a bad headache yesterday and was having more nausea so in the afternoon a little while before I headed home from work I took zofran and phenergan (I try not to take phenergan during the day since it knocks me out pretty well) and then took some motrin when I got home and basically zonked out for the rest of the afternoon and evening. Seriously, I took a two hour nap which is not normal for me but I was exhausted and the phenergan really knocked me out (which I wasn't complaining about). And then I went to bed pretty early so I guess I was really worn out from the week (and it was only Wednesday!). As I said, nausea has been an issue as well as abdominal pain (my heating bad is my best friend!) so I'm still being careful about what I eat. I did get adventurous this afternoon and got a bagel at South Station on my way home but only managed to eat half of it (well, like a sixth of it then and the rest of the half when I got home) but that's still pretty good. I'm at least trying to keep up with my fluid intake and snacking on things throughout the day to try to get in what I can. And I've found a yogurt smoothie that I seem to be able to tolerate (unfortunately it's not one high on calories but at least it's something!) and I've broken out the babyfood again which is a great standby. Anyway, I'm not complaining as I know this is just a temporary GI crash and hopefully within the next week I'll be back to more "normal" eating.
Before I sign off tonight, I wanted to post a few pictures that I found at work yesterday as I was sorting through some old things in the upstairs office. These are pictures of me when I was on the Marion Art Center (where I work) 4th of July float. I was probably 9 or 10 (I would have just turned 9 or 10 that day!) and I can still remember the day fairly clearly - learning the song we sang during the whole parade (which I've since found out is the Art Camp song so I sing it over and over all summer long with the art camp kids now), throwing out candy to the kids along the parade route, and some other little things about the day. So, here are the pictures of cute little me!
Okay, you may have to look close but I'm there smack dab in the middle of the picture. And, just in case you can't spot me...
Here's the same picture with me cropped out of it! (I'm the one on the left kind of waving at the camera - I don't know who took the picture or who the girl next to me is - I guess it was a long time ago!)
And one other picture (I don't look like I'm having as much fun in this one).
Well, I need to get back to my homework and finish up the few things I have to do for tomorrow morning and then hook up my fluids and head to bed. Please keep Kelly, Diana, Tara, Heather, Malisa, and my little buddy Lexie in your thoughts as well as everyone else having a rough time.. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Tuesday, March 6, 2007 11:59 PM EST
What's impossible
Well they forgot
This world keeps spinning
And with each new day
I can feel a change in everything"
--Jack Johnson
Hi Everyone,
Just wanted to do a quick update. Today was a long day and I'm completely worn out from it but it went well overall. This morning I checked my port for blood return and was able to get some so no need for re-accessing for my labs this week (yay!). This morning I got up relatively early because I woke up to switch from Flagyl to Primaxin infusions and just decided to watch some TV and then took out my Charlotte's Web script and spent the rest of the morning and early afternoon working on that. My theater classes went pretty well but I forgot my nice chime that I use to get the kids to stop talking and pay attention if they get loud or out of control so my voice suffered a bit more than usual...okay, a lot more than usual, but I do still have a voice with a sore throat. I did make it to choir for a little while after the classes, too, although the turnout in general was very low and ended a little early but I was still glad I made it. Health-wise today I'm still taking it easy on my stomach with mostly liquids and it's feeling better but not up to "real" food again yet. My head has been threatening to start up a bad headache but so far so good with that (*knock on wood*). And I'm just overall exhausted from a long day. Tomorrow I'm just working from 1-5pm and Thursday I head up to Boston to see Dr. R (GI) so a busy but not horribly busy rest of the week. And tomorrow morning is my last dose of IV Flagyl for this month's week pulsing. Yahoo! That means a bit more sleep and a generally easier schedule with less time attached to my IV pole. I'm off it until March 28th when I start the next week-long pulsing of it. Please keep Kelly, Diana, Heather, Dylan, Malisa, and Tara in your thoughts. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Monday, March 5, 2007 11:45 PM EST
what I can say is they must change if they are to get better."
--G. C. Lichtenberg
Hi Everyone,
Just a quickie update tonight (which I guess is better than no update at all!). Last night wasn't the best of nights. I was up relatively late with my heating pad on my stomach but eventually I did get to sleep and the pain wasn't too bad. But it was obviously time to take a little food break so today I've been mostly on liquids (I did have a mashed up baked potato for dinner but it's not sitting all that well) and so far so good. I imagine this will probably continue for the rest of the week but I'll see how it goes and play it by ear. I think sometimes my stomach and intestines just get annoyed at me for trying to eat "normally" (or semi-normally) for too long so they make themselves known. Anyway, other than that today has been relatively quiet. I slept in until about noon (which was very much needed) and basically spent the whole day working on school work. I got two of the three assignments done that I needed to get done and the last one is okay for me to turn in late (the professor is great about understanding my need for some flexibility). My online class is so close to being done, it's crazy! Just two more weeks, which also means that the final is coming up soon (the professor said she's not sure if she's going to have a test part or just the essay part - I'm hoping for no test as I'm always better with essays). I'll be happy when it's done but then I only have a few weeks off of online classes before I start up on the spring quarter when I'll most likely be taking two online classes (awaiting an e-mail back from the registrar to find out when the transcript deadline is for August graduation to see if it would be possible to take one class during the first summer quarter) - a science class (I'm leaning towards a class called The Solid Earth) and probably a language class (either first year Arabic or German, yes, kind of random languages but they're the only languages offered online as first-year and there's NO Spanish offered online). This evening I also managed to finally move an unfinished dresser from the basement (my older sister and I each had one of these dressers when we were younger and now they've been in the basement for a while with various things in them) to swap out for the little shelf/table thing I had my TV on. So now not only is my TV higher up which makes it much easier to see from my bed but I also have extra drawer space which is great. Things are getting more organized and I'm going to continue to work on getting my room cleaned up and more organized in a way that things can STAY organized! I have a pretty small room and too much stuff for it so it's always a challenge to try to stay on top of the mess that inevitibly builds up. So getting the dresser up here was an accomplishment. Then I took a nice shower, accessed my port (had a little issue with it - it's infusing and flushing fine but I can't get a blood return so I may have to de-access and re-access tomorrow or Wednesday to do my weekly labs), and now I'm taking it easy, watching a little TV, and hooked up to my Primaxin and hydration. Overall I wasn't feeling all that great today - stomach issues, tired, some joint/muscle pain, and just a little "off". But it wasn't too bad and hopefully a good night's sleep and the fluids overnight will help me feel better tomorrow to teach my theater classes and make it to choir rehearsal. And now I think I'm going to pull out my theater stuff and try to get organized for the classes tomorrow. It will probably be helpful for me to have things figured out pretty well for class so I don't waste time trying to figure things out during class.
Please keep Kelly, Diana, Heather, Dylan, Malisa, and Tara in your thoughts. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Sunday, March 4, 2007 10:32 PM EST
--Joshua J. Marine
Hi Everyone,
Sorry for a few days with no updates. Nothing too exciting has happened so there wasn't much to update about. My car didn't end up going into the body shop to be evaluated on Friday because it was pouring rain and it didn't seem like a good idea to be driving it anywhere, what with it not having a hood attached. So it was covered up with a big tarp (my car is really small so a big blue tarp covers up the whole thing - I'll take a picture of it tomorrow) and my dad drove it over to get looked at on Saturday morning. They're going to have to replace the hood so they're looking for one and when they find one they'll let us know. I don't know how much it will cost to get it replaced but my car hasn't required any major work in over a year and a half (when it got the...front (I think) brakes replaced) so it should be okay. Other than that, Friday was a very low-key day. I stayed in my pajamas in bed all day, watched some DVDs, and took it easy. Saturday I worked from 10-2, ran to the pharmacy to fill a script, and came home and spent the rest of the day resting. And today I went to church early for choir rehearsal and afterwards I got to meet my friend Michael's newborn baby girl, Sylvie. She's so cute. After church I came home, did some baking (banana muffins and pumpkin muffins), and I was going to settle down to do some homework but I haven't gotten any done, I keep getting distracted with stuff on TV or online but I have all day tomorrow to work on schoolwork, too, so I should be okay if I really concentrate on it. Health-wise I'm doing okay. I had a bad headache on Friday but managed okay with it and I've been trying to rest as much as possible to hopefully avoid catching my mom's flu (she's doing much better). Not much else going on, just looking forward to a (hopefully) quiet-ish week. I don't have anything tomorrow, Tuesday I have my theater classes and choir rehearsal, Wednesday I'm working, Thursday I'm in Boston for an appointment with Dr. R (GI) and maybe over to school for a bit, and Friday I can rest. Okay, so maybe it won't be that quiet, but at least I have tomorrow off.
Please keep Diana, Kelly, Heather, Dylan, Malisa, and Tara in your thoughts. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Thursday, March 1, 2007 10:26 PM EST
--Albert Camus
Hi Everyone,
I have had quite the day and I'll work on this update throughout this afternoon and evening (and eventually post it, which you already know if you're reading it!). It seems that the universe is sending me signals that I should not be travelling...anywhere! I'm getting ahead of myself, though. Okay, this morning I dragged myself up and got out and up to Dr. H's (PCP) on time (actually with a few minutes to spare - traffic wasn't as bad as it could have been). My appointment was good - nothing big to report on it. I seem to be doing well overall and tolerating things well (Dr. H commented on how my labs have all been normal for a few weeks in a row now and wondering what was keeping my liver happy!) and she commented on how I look better overall. The only few concerns were that my mom has the flu and we want to keep me from getting it so I'm taking a homeopathic remedy to try to prevent it and the other thing is that, even with the high dose Prilosec twice a day, my throat looks red and raw from acid. Hmm...not great. My throat doesn't usually hurt and I'm not having as much reflux that I feel as I was before increasing the Prilosec dose but I do still notice issues with my throat and voice which I relate to reflux so I'll be talking to Dr. R (GI) about that when I see him next Thursday.
After my appointment I went over to school for a little while to try to do some research for my prospective final paper topic for my independent study - that wasn't very productive since it seems Wheelock doesn't have any of the major linguistic journals so I either have to get some articles from Inter Library Loan or head over to Emerson at some point since they seem to have everything (at least according to the library system search). Oh, I should back up a little bit there - because of the snow that we had on Monday (which prevented me from going to school for my meeting with Maya, my linguistics professor) the sidewalks and parking along the streets are a bit of a disaster. Pretty crazy since it's a city that gets snow a lot so you'd think they'd know how to handle it! Anyway, I found a parking spot on the street right near the library which I was happy about but it was in an icy patch. So, I do my research (or try to), get a few books out of the library, do a little homework, and get ready to head home. I get in my car, start it up, hook up my afternoon Flagyl infusion (glad I had the forethought to pack it in case I wasn't home in time for it), and try to back up. My car moves a little and then the front wheels just spin - yep, I'm stuck in the ice. There are holes in the ice right around my wheels (perhaps some of it melted while I was in the library?) but it doesn't go down to the pavement so I'm stuck. A call to AAA and about 45 minutes later the tow-truck shows up to help me get out. We didn't end up needing the tow-truck, just the guy in the tow-truck and a nice guy who had parked behind me and was talking on his cell phone. They managed to push me out of the space (great having a tiny car) and I was on my way home. Oh, I forgot to mention one important thing - AAA told me to put my hood up so they could more easily identify my car. You'll see why that's important in a minute.
I start driving home and when I'm a little less than half-way there all of a sudden, while driving down the highway, the hood of my car flaps up into my windshield! I pulled over right away and inspected things. The hood was only attached by the window washer fluid tubing (thank goodness for that or my hood would be somewhere on route 24!), the hood had a good-sized dent in it close to the bottom (away from the windshield) and the places where it attaches to the car were totally bent out of shape, my windshield wasn't damaged at all (very lucky), and after a call to my dad I decided to try fitting the hood into the trunk of my car (well, it's a hatchback so not really the trunk) and drive home without a hood. That worked, thank goodness, and I made it home, the whole time thinking, "What is the universe trying to tell me? Is there a lesson in this?" I couldn't really figure out a lesson other than being flexible, going with the flow of things, rolling with the punches, and learning to laugh at these awful experiences.
At first I was self-conscious about driving a car with no hood and looking like an idiot on the highway (yes, my car still drove at highway speeds after that - no problems there) but then I decided, "You know what? Let them look at me! Let them laugh at me! I'll just laugh right along with them!" The whole situation was just so absurd - I was driving home with the hood of my car in the back seat after just having had AAA push me out of an icy parking space and the memory of the awful travelling out to Oregon fresh in my mind. Apparently the universe is telling me to STAY HOME! So you know what I did all the way home? I sang! I sang and smiled and laughed and breathed deeply and just tried to look at things in perspective. I had a car that I could drive and get me home. I hadn't been injured. My windshield was fine. The hood wasn't lying somewhere along the highway, it was in my backseat. My car is fixable and none of this caused any major accident or even minor accident.
And to make sense of this, if you didn't know, Mercury is retrograde. This is the info I could find about it online when I got home.
Traditional Meaning of Mercury Retrograde:
The traditional astrological meaning assigned to Mercury going "retrograde" in the sky is that one should prepare for and gird themselves for unexpected delays, frustrations, and surprises in everyday life. This includes everyday routines in commerce, commuting back and forth to work, and in one's communications.
Mercury Retrograde: The Key Issue:
The key issue here is one of focus. Mercury's retro phase tends to bring unforeseen changes and blockages, but the aggravation and frustration that many of us experience during these periods is often due to our own inability to roll with the punches. Is this due to our ego-fixation? Mercury sets out to restructure our thinking processes and for many of us this is painful and frustrating. Moreover, these experiences reveal flaws in our internal organisation as well as our external planning, which can make us feel foolish and inadequate.
Sounds too true and I've decided that there will be no more travelling until Mercury is back in its regular orbit. So my car is in the driveway with a tarp over the hood and I'm taking it into the auto body shop in the morning and just praying that they can fix the hood or replace it inexpensively! I'm really worn out from the day but I have tomorrow to take it easy, rest (although not sleep in since I have to take my car to the shop at 8am and have my dad drive me back home in one of our few remaining cars - yeah, did I mention, my brother got in a little accident on Valentine's day - the day I was supposed to fly out to Oregon - and his car is only now getting fixed and wasn't drivable since the accident so we were already down one car and my brother was using my dad's car but since my mom's sick and not going to work this week, at least we have her car to use), do homework (although I don't plan to do much of that), watch some DVDs, and just have as low-stress a day as possible. I'll have to take a picture of my car in the morning before we go out to the body shop - I really have to document this (I should have documented it with the hood in the trunk but I was so tired when I got home that I didn't think about it). Oh, and as I was driving home, singing and laughing and everything, I remembered a scene from Planes, Trains, & Automobiles where they (Steve Martin and John Candy) are driving in this car that is slowly falling apart - losing doors in accidents, catching on fire so the spedometer melts, losing the roof, and then they're driving down the highway and the hood flies up into the windshield the way mine did. I think perhaps I have to dig out the tape of that taped off TV that we have and watch it tomorrow.
Okay, I'm off to hook up my Primaxin, finish a bit of homework due in the morning, and snuggle into bed with a book or movie until I can go to bed. Hopefully tomorrow will be a better day, and if it isn't, I'll just keep swimming! Please continue to keep Kelly, Heather, Dylan, Malisa, and Tara in your thoughts as well as my little buddy Lexie. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Wednesday, February 28, 2007 11:28 PM EST
--Flora Whittemore
Hi Everyone,
Just a quick update tonight. Yesterday was good but, as I expected, a long afternoon and evening with schoolwork, my theater classes, and then running over to catch the last bit of choir rehearsal at church after that. But I did make it to choir, although only the last 20 minutes or so and I was so tired that maybe I should have just come home but I was happy to be at choir at all so I think it was worth it. Today I was up fairly early (for me at least) and off to Dr. H's (PCP) office for a few labs and my first infusion of IV Flagyl. It all went fine and I pretty much did all the work of drawing the labs (from my port) which needed to be spun right after being drawn so that's why I had to go up there instead of drawing them at home, and I did everything for the Flagyl infusion - I really just needed to be there to be monitored in case I had some kind of reaction to the first infusion. The Flagyl made me kind of worn out and tired but nothing too out of the ordinary when my body is hit with a new, powerful medication. I've done two infusions today and I'm still figuring out how to juggle everything around so that I can get all the infusions in without driving myself crazy! Thankfully the Flagyl is just for one week a month so the rest of the time I just have to worry about juggling the Primaxin and hydration, which really don't have to be juggled since they can both be infusing at the same time (the Flagyl can't be infused with the Primaxin). I stopped at Whole Foods on the way home and got a few things (I love that place) and then came home, spent most of the afternoon resting, watching some TV, and doing some homework. I de-accessed and took a nice, long, hot shower tonight and changed my sheets and put some laundry in so I consider this a very productive day! Tomorrow I head back up to Dr. H's bright and early (even earlier than today since my appointment is at 9am and I need to allow at least 2 hours in case of rush hour traffic going into Boston) and then I'm going to go over to school for a little while to work on some research for my independent study final paper (well, possible final paper topic actually). Hopefully the day won't wear me out too much, although I have Friday free so I can rest as much as I need to and catch up on schoolwork. Health-wise things are okay. My stomach is funky tonight (I think I overdid it with "real" food for dinner plus the Flagyl seems to be affecting it a little bit) and I'm worn out but nothing else really to report about that. I'll update about my visit with Dr. H tomorrow night (probably).
Okay, I'm off to watch at least some of The Sisterhood of the Travelling Pants which I have from Netflix now and then go to bed when my Primaxin is done infusing. Please continue to keep Kelly, Heather, Dylan, Malisa, and Tara in your thoughts as well as my little buddy Lexie. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Monday, February 26, 2007 11:59 PM EST
~Winnie-the-Pooh
Hi Everyone,
I wanted to put up a quick update before I finish up some schoolwork and head to bed. Yesterday was good - I managed to get myself up and went to church although if the pews were more comfortable I may have fallen asleep during the service (not that it was a boring service, I was just that tired). Then my dad and I stayed after to watch Jesus Camp which our student intern minister was showing followed by a brief discussion. Let me just say it's a very interesting documentary and led to us discussing some very important and interesting things. I recommend seeing it if you haven't already. I spent the rest of the day doing homework and trying to take it easy. Today wasn't as busy as I thought it was going to be but that's because we got hit with some snow this morning that hindered my trip up to school. So my professor, Maya, and I just "met" on the phone instead and spent about an hour discussing the reading I'd done and the topics that were most interesting (or confusing) to me. I think I've decided that my final paper is going to be on language acquisition, development, and deficits in infants and children who have had lesions on the left side (language side) of their brains or experienced brain damage on that side of the brain early in life. The brain is really amazing - it has an amazing plasticity so that if the damage occurs before the age of 2, there don't seem to be any language deficits (at least not any lasting ones). Really amazing. Anyway, so by not driving up to school and back it was like I had an extra 3 hours of the day! I spent the afternoon doing some homework for my online class, catching up on the shows I missed while I was in Oregon (basically just last week's episode of Gilmore Girls and Grey's Anatomy which was really an amazing episode), taking a very long nap in the afternoon, and doing some more homework. Tomorrow will be a very long day with teaching my three theater classes and I'm determined to make it to choir rehearsal no matter what! Then Wednesday and Thursday will be spent up at Dr. H's (PCP) and probably at school for a little while doing research on my proposed final paper topic and of course stopping at WholeFoods on the way home one of those days to pick up a few things (just my regular routine when I go to Dr. H's).
Health-wise things are okay. I'm still recovering from my trip and the trip home but I'm managing okay by getting some extra sleep here and there and trying to get to bed at a reasonable time (which isn't always happening). My stomach seems fairly good but I'm dealing with some reflux issues this evening with partially digested food - pretty gross but it should be better in the morning. I think I need to give my stomach a little break after the more adventurous food eating in Oregon so I'll do that for the rest of the week and hope the reflux calms down. I've been dealing with some back/shoulder pain but it's really not that bad. Really, things are amazingly wonderful but they're relatively good. Just hoping I hold up pretty well through the rest of the week. Wednesday and Thursday shouldn't be too bad - Wednesday I just have to have some labs drawn at Dr. H's and have my first IV Flagyl infusion (so I can be monitored) which basically just means sitting there in the comfy infusion room chairs for a few hours.
Okay, I'm off to do a bit more schoolwork (hopefully finish one last assignment) and head to bed. Or perhaps just head to bed and do the schoolwork in the morning. Please continue to keep Kelly, Heather, Dylan, Malisa, and Tara in your thoughts as well as my little buddy Lexie who is battling a bit of a fever and not feeling so hot. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Saturday, February 24, 2007 10:19 PM EST
--Lin Yutang
Hi Everyone,
Just a quick update to let you know I'm home safe and sound. The only delay in my flights was a short delay leaving Minneapolis because there was a mechanical thing that had to be checked out and then the plane had to be evaluated to see if it needed to be de-iced (it didn't). I slept for most of the flight from Seattle to Minneapolis and for a good part of the flight from Minneapolis to Boston (I spent the rest of that flight reading stuff for my independent study). When I got home I took a long nap (I think I was asleep for a good 3 hours) and now I'm heading to bed and hoping I'm able to re-set my internal clock quickly and not lose too much sleep. I have church in the morning and school on Monday and theater classes on Tuesday and then Wednesday and Thursday spent at my PCP's office (Wednesday for labs and my first IV Flagyl infusion and Thursday for a regular appointment) so I really need the rest.
Please continue to keep Kelly, Heather, Dylan, Malisa, and Tara in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you all had a good Saturday!
Friday, February 23, 2007 11:33 PM PST
(Saturday, February 24, 2007 2:33 AM EST)
--E.E. Cummings
Hi Everyone,
I'm updating now from the Seattle airport where I have a long layover on my (hopefully less stressful) return trip from Oregon. I'm not feeling great now - I had a major headache hit in the airport in Eugene and despite taking migraine medicine it just seems to be getting worse. I realized I forgot to take a few of my morning meds, one of which being the med that prevents headaches, but usually I only notice a difference after at least a few days without it like when I've run out of it waiting for a refill from my mail order prescription pharmacy. Anyway, I'm not a very happy traveller right now but wanted to type up a quick update (which I may or may not be able to post before I get home, depending on how long I can get internet here and how good the connection is). My last few days in Oregon were good. I spent yesterday downtown walking around and doing a little shopping and then went over to the mall for a little bit (mostly to go to the Made In Oregon store to get a few things to bring back for people). All in all it was a good day but it was raining off and on, sometimes heavily (although I took refuge in a market area with a cup of coffee during the really heavy part) so it wasn't the best weather. The sun did peek through a few times and I took a few pictures to prove that there was at least a hint of sunshine while I was there! (Pictures will follow this update.) Last night we had a tasty dinner of vegetarian pad thai (my sister made it) and just kind of hung out for the evening. Today my sister and I made plans to have lunch together so I took the bus down to where she works and we had a nice lunch together. She had a big gala fundraising event at work tonight so having lunch together was our last chance to see each other. Then I went back and packed up my stuff (which was sad), copied down a few recipes I wanted to take with me, had a little dinner with my brother-in-law, and headed for the airport. I opted to carry all my medications (including all my IV stuff - somehow I ended up with a lot of extra doses of Primaxin and I only missed one dose the whole time I was away, although I was a day late arriving and I suspect they sent out enough to last me through tomorrow) with me because I don't want a repeat of the flight out with my suitcase lost and me without my meds. I was surprised how easy it was to get them through security, probably partially because I was flying out of a really small airport and it happened to be really quiet when I got there. I'll have to remember this for future travel (assuming the liquid restrictions don't get changed sometime before then, which doesn't seem likely). The first leg of my travels - just a quick jump up to Seattle - was fine and easy (and I have to say I really like Horizon which is a division of Alaska Air). The woman I was sitting next to ended up to be going to Boston, too, and on the same flights as me so that was interesting (she's from Maine). Now I'm just waiting in Seattle for the next leg - from here to Minneapolis - and really really hoping bad weather in Minneapolis doesn't cause problems either in this flight or in the connection from there to Boston. I'm hoping to sleep through most of the rest of the trip but that partially depends on this headache, how well I respond to my evening/bedtime meds with the added stress of travelling, and whether someone is sitting next to me (I have a window seat and if the middle seat is empty I'm able to get pretty comfortable by curling up in my seat). I'm trying everything I can to help my headache and kind of running down the list of what it could be from, the most likely unfortunately is just Lyme-related and due to the stress of travelling so if the meds don't help there's not much else I can do but hope I can sleep it off.
Okay, here are some pictures from the trip:
Sunrise from the airport in Boston all the way back last Thursday when I flew out. (Before all the further travel complications and lost luggage.)
The coast on Saturday.
Another shot from the coast - a pretty foggy day!
This is also at the coast - a really huge tree with its root system still intact sticking up in the air. The tree looks like it's been there for a long time as it's partially buried in the sand. We're not quite sure how it got there but it's interesting!
You can see part of the tree here. It really was huge!
My sister at the coast.
The room I stayed in at my sister's house (this is her room - she and my brother-in-law each have their own room in addition to their bedroom and hers is a meditation room when someone isn't staying in it and the painting on the walls makes it look like it's under the sea which is cool).
The sun peeking out from behind the clouds (or rather through the clouds) downtown yesterday.
Peeking through a little bit again.
And finally, me this afternoon. (I wanted to show off my french braids - one of my new favorite hair styles but very labor-intensive.)
The braids from the back - much more impressive from this side.
There was some sun this morning when I got up and I would have taken pictures of it if it had stayed out longer or if I hadn't had to take the batteries out of my camera in the middle of the night last night to replace my IV pump batteries. Oh well, you'll just have to take my word for it. Now I'm just doing my evening Primaxin infusion (with the help of my pump) and hoping the wait here goes by somewhat quickly. I think I'll go try to find a place to plug my computer in and pop in a DVD to keep me entertained (and hopefully not make my headache worse). Please continue to keep Kelly, Heather, Dylan, Malisa, and Tara in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Wednesday, February 21, 2007 6:03 PM PST (9:03 PM EST)
--Edwin Hubbell Chapin
Hi Everyone,
I just wanted to do a quick update before I crack open my schoolwork and spend a while doing some reading for my online class and possibly my independent study (I have so much to read for that for my meeting with Maya on Monday - I better get working on that!). Yesterday afternoon and evening after I posted my last update was good. I managed to walk home from the cafe in some sunshine and no rain - good timing! I spent the rest of the afternoon resting, I watched Little Miss Sunshine again (in widescreen this time which really isn't any different or better than the fullscreen, at least on the TV here), and just took it easy. I tried some almond cheese, as in made from almond milk I guess, and it's really good and even lower in fat than the rice cheese I usually eat. I'll be looking for it at home but I'm not sure if it's available anywhere near me since I haven't seen it before. Anyway, we had some yummy tempeh fajitas for dinner. My sister is great about making sure she can adapt the dinners she's making so that I can eat them - in this case she kept some tempeh and peppers and onions without black beans for me to eat. It was really good and I think I'll be copying down the recipe to take home with me. Then we played Clue (the version with The Simpsons which is pretty much the same as the normal clue but with different places, weapons, and characters) and my brother-in-law won all four games of it we played - pretty suspicious (or just really lucky). That was a fun way to spend the evening. Today didn't start out that great. I woke up at 8:30am and hooked up my Primaxin, had a little something to eat (which I've found helps with morning nausea...usually...and helps me get in some more calories spread out throughout the day) and went back to sleep until 9:30am when I have to change to the second bag and I was not feeling well at all. I switched bags but having to stand up to do that made me feel really sick. But I had a full bladder so I ventured down the hall to the bathroom and ended up kneeling by the toilet for a little while very close to throwing up. After a little while I just lay down on the bathroom floor and that made me feel a lot better so I suspect it was Dysautonomia-related. I managed to get back to bed and slept until almost 11am (this is pacific time so that would be almost 2pm eastern time). I think I really needed some extra sleep since I've been getting up relatively early (out of bed around 10am lately, awake from about 9 or 9:30am). I felt much better when I woke up which I was very glad about. I drew my labs and got them all packed up for fed-ex to pick up and got to work making another batch of brownies for my sister and brother-in-law. I love to bake and it's so nice to have the time to do it out here, and to have people who really love eating what I make (not that my family at home doesn't - they do love it and gobble it up!). Then I set myself up in the living room in my brother-in-law's really comfy reclining chair (seriously, it's like relaxing on a cloud! I'll have to take a picture of it sometime) with a DVD of The Simpsons, my laptop, and some tea. It was a nice relaxing time.
Later on I decided to get out of the house so I walked back down to the Friendly Street Market (where the cafe I've been going to is) and got a few drinks and other things and a cup of coffee. Yesterday I bought this bowl of microwavable mac & cheese which is really low in fat (only 3g per serving) so I figured I'd try it out so I had it for "breakfast" (more like brunch since it was at about 12:30pm) and it was really good and seemed to sit well on my stomach so I got a few more of those, either to eat here or take home with me. They don't have any info about this particular product on their page but it's Back to Nature Micro Mac & Cheese if anyone is interested in trying it. It's natural, really easy to make, and very tasty! So, back to today (sorry if it's not that interesting!). After that little walk (in a slight drizzle of rain) I set myself back up in the comfy recliner and got to work answering a few e-mails and trying to catch up on things. My brother-in-law is home from work and we'll have dinner in a little while. My sister has a meeting she has to be at this evening so she won't be home until about 9:30pm - kind of a bummer - but she'll be home tomorrow night (my last night!) so that's good. I can't believe my stay here is almost done! It's gone by so fast! At least I know my sister will be coming home in April for a friend's wedding so she'll be home for a whole week and it won't be that long until I see her (and my brother-in-law) again. It will be so nice to have them around for a while, although of course I'll have most of my regular activities (but it might be April vacation week so I might not have my theater classes - that would be great!).
Okay, I need to get some schoolwork done! I'm hoping to spend tomorrow walking around downtown and then Friday I'll either have to do more schoolwork or be able to have a relaxed day, maybe down at the cafe again or perhaps with a quick trip downtown or to the river (depending on the weather). Please continue to keep Kelly, Heather, Dylan, Malisa, and Tara in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Tuesday, February 20, 2007 3:50 PM PST (6:50 PM EST)
--Sufi Teaching
Hi Everyone,
I'm at the coffee shop again (the Latitude 10' Cafe) and I've been working on e-mails, chatting with a few friends, and sipping at a nice latte (which has been gone for a while now but it's still nice to be here) so I thought I'd do a quick update before I pack up and head back to my sister's house for the rest of the afternoon (my Primaxin infusion is waiting for me and I'll be a bit late doing it). Sunday afternoon and evening was good - we went out for dinner (my parents always send money for us all to go out to eat while I'm here) which was good, and then we came home and watched Little Miss Sunshine which was a really good movie. I may end up watching it again before I send it back to Netflix (although I'd hate to plan on that and have it delay its return since I have such a tendency to hang on to movies far too long). Yesterday was a pretty quiet day. I slept in, went grocery shopping with my sister, had a pretty relaxing afternoon, my sister and brother-in-law went out to a group meeting thing in the evening and I baked them some brownies (their request for their February Penguini's Cookie of the Month Club baked good) and took a nice long hot shower (so nice!). And today has been pretty good so far - relaxing morning and now a relaxing afternoon at the cafe. The weather has been pretty erratic today - raining hard for a while, then sunny for a little bit, then sprinkling, then hailing, then sunny for a bit. Pretty cool to watch from the window of the cafe here. Health-wise things are fairly good - I'm sleeping pretty well lately (I think the time difference has actually HELPED me in that regard since I seem to be on pacific time at home anyway), my joint pain is coming and going but today it's not too bad - my left wrist is the most troublesome - my stomach is relatively okay and I've been able to eat some small salads at dinner (kind of a big deal although it may not seem like it). I'm pretty worn out and tired but handling it pretty well.
I think that's about it. The sun is out now so I think I'll take this opportunity to head back home and hopefully avoid walking home in the rain. Please continue to keep Kelly, Heather, Dylan, Malisa, and Tara in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Sunday, February 18, 2007 4:01 PM PST (7:01 PM EST)
--Clara Ortega
Hi Everyone,
The above quote is so true. Sometimes I forget how well I can relate to my siblings. And I am realizing just how wise they can be. My older sister has a really firm grasp on the issues we as siblings have dealt with and the secrets that lie in our hearts that we haven't quite found words to describe yet. She is a really amazing person. All of this is coming after a really nice, long, pretty profound talk I had with my sister over lunch yesterday on a trip to the Oregon coast. It was a pretty cloudy, drizzly rainy day and we couldn't enjoy the actual coast as much as we might have liked (the weather report on weather.com said it was supposed to be partly cloudy and warmish (54*F) on the coast but I guess we were in the part that was cloudy) but we still had a very nice trip. The drive out was nice and it was sunny until we got to the coast. We went and walked along the beach, had a nice lunch in town, and walked along a different beach before heading back. All in all it was a nice day out. It's funny how much better things were (or at least how much better they felt) once I knew where my luggage was and had it back in my posession. I don't know if I realized how stressed out I was about it until I had it back and could breathe a sigh of relief. It's all been a lesson in making sure I keep what's important to me close to me (like in my carry-on luggage) and making sure the rest isn't things I'll worry about. Hmm...interesting lesson. Anyway, after getting back from the coast my sister made a great dinner - this cool lo-mein type thing with sweet potatoes and snow peas - very tasty! And we watched the Eddie Izzard DVD Glorious (which is really funny and I highly recommend it) which I gave to my brother-in-law for his birthday on Friday.
Today has been a really good day so far - not so much health-wise but in other ways. I decided yesterday that I was going to finally go to the UU Church here in Eugene so I had my sister drop me off for the 11:00am service (they have 9am and 11am services). The building is really cool and the sanctuary part of it is this big circlular room with a lot of windows and the ceiling goes to a point in the middle. It's definitely different from my church but a very cool kind of different. The service was interesting - about Buddhism and how we can use the basic practices in our everyday lives. I got to talk to some people afterwards during coffee hour and it was a lot of fun and I definitely think I'll be going back when I'm here visiting my sister and brother-in-law next time (assuming I ever feel like flying again after the fiasco this trip!). Now my sister and I are sitting in the coffee shop attached to the natural foods store a few blocks from her house - it's pretty cool here and we've had a nice afternoon playing mancala and talking. But we're getting ready to head back home so I better wrap this up. Just a little health update before I end this - I'm hanging in there but definitely worn out from travelling. My joints have been pretty bad lately - my right knee is still bothering me but not as much as it was (thank goodness) but now my left wrist has been painful and the pain is creeping down my hand to my fingers (my thumb is feeling the effects right now). I think it might be tendon-related but I'm not sure - hopefully it will start feeling better soon! I'm just worn out overall and my stomach isn't terrific but I always eat more (and more "normally") while I'm here so that might be part of it.
Okay, I'm off to head back "home". We're going out to dinner tonight which should be yummy and I need to get my Primaxin in before then! Please continue to keep Kelly, Heather, Dylan, Malisa, and Tara in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good weekend!
Friday, February 16, 2007 11:20 PM PST (Saturday February 17, 2007 2:20 AM EST)
--Mark Russell
Hi Everyone,
Well, yesterday was pretty much the worst travel experience I've ever had - partly due to lasting affects from the storm on Wednesday and partially because of the airline's incompetence. It was an extremely long day. I was up at 3:30am (EST - 12:30am PST), out of the house at 4am, and at the airport by 6am. I realized on the bus up to the airport that I had forgotten to re-pack my IV pump since I had used it the night before so when I got to the airport I called my dad and he shipped it off to me to arrive on Monday. Just the beginning of a very long and stressful day. Things seemed like they would go alright at first. I checked in, checked my suitcase, was all set and headed through security (no hold ups there, thank goodness), and made my way to the gate. I loaded up on drinks (it's so inconvenient and just such a pain to have to wait and buy everything on the other side of security instead of bringing it from home which means you're limited to buying what is sold in the airport - no vitamin water or nutritional drinks), got a little coffee, and waited. And waited. And waited. The screen said the flight was on time for a 7:50am departure but it got closer and closer to that time (with no change in the monitor) and eventually I heard someone (a passenger) in the gate area say they were told when they checked in that the flight was delayed until 9:30am but still there was no reflection of this on the monitor. So it got to be about 9:30am before we boarded the plane and we must not have taken off until close to 11am which of course meant that the rest of my flights were going to be an issue. I slept a bit of the flight, worked on homework (my mid-term essay for my online class mostly), and stressed about how they were going to get me to my destination if I missed my connection. They ended up having to re-book a lot of people who were on that flight because everyone missed their connections. So I was put on a flight to Seattle instead of Portland, and that flight was delayed (although not too long - I think it was delayed a half hour or 45 minutes) but I made it to Seattle. Then the flight from Seattle was delayed - again, not too long, about 45 minutes I think - but I made it here finally around 8pm PST (which would be 11pm EST - nearing being up for 24 hours at that point). It was a horribly long day but it wasn't over yet. I went to the baggage claim to get my suitcase and, wouldn't you know, they lost it! No explanation as to what happened except that maybe it was routed through Portland since my original flight plan was putting me through there, or maybe it was on another airline since I was originally supposed to fly from Portland on United, but no answers as to where it was or where it was last seen or when it might turn up. And of course, with the security regulations the way they are I try to put as much as I can in my checked luggage so I didn't have my meds (the orals were the main issue since the IV stuff was mostly delivered to my sister's house already) or any clean clothes or a whole slew of other things that, while not all necessities, I really wanted and needed to have. So I filed the claim and my sister took me to the store to get a toothbrush and a few food things I could eat. I did find that I'd put some extra Domperidone, Zofran, and Phenergan in my purse which I was so thankful for since those are really meds that would cause a lot of problems to be without. Anyway, I was up late doing my Primaxin and just stressed and frustrated and so completely, utterly, entirely exhausted. It didn't help anything that I hadn't eaten much of anything all day since my stomach is always pretty bad when I'm travelling and airport food doesn't appeal to me all that much. So I was up for close to 24 hours (I think I was somewhere around 23 when I finally fell asleep) although I did sleep a bit on some of the flights) and just not having a good day at all. Plus, you know that silver lining I mentioned in my last update about getting the first class seat on one of my flights because that's all that was available when I was re-booked on Wednesday? Yeah, that's the flight I missed after the delayed flight in Boston so I was stuck in middle seats on both flights across to Seattle. So much for a silver lining...or a bronze lining...or much of any lining at all!
Well, the good news about today is that, after calling the airport at about 10am and them not knowing where my bag was, I did get a call at about 11am that my bag had turned up and they would send it out on the next delivery. So I got my suitcase at about 1pm and was able to take my meds then (thank goodness). I de-accessed and took a nice, long, relaxing bath and shower to get the travel feeling off and changed into clean clothes (I borrowed pajamas last night from my sister which worked fine but I was so ready to be in my own clean clothes!). I'm still recovering from it all and feeling the effects of being without some of my meds last night but hopefully I'll recover quickly. Today I rested and worked on school work. I found that I'm able to get a pretty good wireless internet connection in the living room here so that's been great and saved me a walk to the cafe about 10 minutes away to get online. I submitted my mid-term essay - it was late but I explained the situation and hopefully my professor will take pity on me - and worked on other schoolwork that was also late but it's done anyway. Today is my brother-in-law's birthday so we had a special meal for that and pretty much took it easy this evening. And now I'm ready to just go to sleep here but I'm not done with my Primaxin yet so I'll be up for at least another 45 minutes. I'm glad to be here and have my suitcase with me and I will seriously think about what I'm packing that's most important or necessary and be sure to always put that in my carry-on luggage. The thing I was most upset about not having and the prospect of potentially losing was my teddy bear, AB (stands for "Annie's Bear" - I was just too cute as a kid, wasn't I?). My grandmother gave him to me for my first (or maybe my second) Christmas and he has been with me ever since. He has patches of fur worn bear and has become flattened over the years with a smooshed nose and I am so attached to him that I don't know what I'd do if I lost him. I usually pack him in my backpack (which I carry-on) but this time I put him in my suitcase because I didn't have enough room in my backpack. I guess that'll teach me! It's interesting to think about stuff like that, stuff that is irreplacable and does not have a price tag on its sentimental value. He is my comfort, he has been with me through so much, he was from my grandmother who I miss a lot, and I can't imagine not having him there. Other than him, I don't know of much of anything in my suitcase that I would have really been too upset over losing (except maybe some high school drama club shirts that couldn't be replaced and various medical supplies that would have been tricky to get replaced quickly). I guess it has made me prioritize my belongings and maybe I'll think more about what I really need to pack and what I don't really need.
Okay, I'm going to curl up here on the couch until my Primaxin is done and I can head to bed. Please continue to keep Kelly, Heather, Dylan, Malisa, and Tara in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all had a good week!
Wednesday, February 14, 2007 3:32 PM EST
"Tired arms can't pull the sun back in the sky,
Angry hearts can't remember why they even try..."
--Lori McKenna
Hi Everyone,
I'm writing this...from home. Unfortunately things didn't go well this morning and after only about 2 hours (or less) of sleep I got up, checked on my flight status, it was listed as on time, so I got all ready to go, my dad and I headed off to the airport bus shuttle, I made it to the airport, went to check in...and found out my first flight was cancelled. Now why they couldn't have posted the status of the flight as cancelled earlier - say, before people would actually leave for the airport - is beyond me. So after the woman working there tried to figure out a way to get me out to my sister's today the best she could do was get me to Portland tonight - which is about 2 hours away from my sister - and then get on the first flight to hop from Portland to my final destination. I wasn't prepared to stay over a night (i.e. didn't have enough medical supplies since what I'll need for this trip was being shipped out there) and I didn't want to pay for a hotel room tonight. So I was re-booked on flights for tomorrow, I called my dad, I took the airport bus back, my dad picked me up, and about 5 1/2 hours after I left for the airport I got back home. I'm peeved, not that the flight was cancelled (although apparently out of 1100 flights going out of Boston, only 90 were cancelled - I guess I'm just lucky) but rather that it was cancelled but there wasn't enough notice to preven an unnecessary trip to the airport. Other people were complaining about it. At least the woman at the desk who was helping me was nice about it all, apologized, and understood how frustrating it was to get there and find out the flight was cancelled. So anyway, I do the whole thing (trip to the airport) again in the morning but a few hours earlier than this morning. I'm sleep-deprived, annoyed, and just really exhausted but I have the chance today to run some errands that I didn't manage to do yesterday (which means I need to get things together now and get out before I completely collapse...and everything closes). Hopefully all my flights will work tomorrow. And the small silver lining in this whole thing is that there weren't any coach seats left on one of my connecting flights that I was re-booked on so I have to fly first-class (with no extra cost to me, of course). This will be my first time flying first class so I'm kind of excited about that. It always helps to find a little silver lining, especially when things are as frustrating as things were today! Good travel thoughts tomorrow would be greatly appreciated!
Wednesday, February 14, 2007 1:57 AM EST
--Victor Borge
Hi Everyone,
I wanted to post something quickly before I (finally) head to bed. I'm more or less packed (still some last minute things to get together before I leave) and just hoping the bad weather that's supposed to last until mid-day tomorrow won't affect my travelling. Yesterday and today have both been long days but nothing too exciting with them - school and errands yesterday, theater classes and errands and packing today (well, yesterday at this point). I'm worn out but hopefully that will help me sleep for most of my travelling tomorrow! I'm somewhat impressed with how well I was able to pack in a relatively short period of time this evening which I think is due in large part to my constant list-making. I can't pack for any kind of overnight trip without a packing list, especially with all the meds and medical supplies I have to be sure I have. And when I get to my sister's tomorrow (well...today, although it's still yesterday (Tuesday) out there) there should be two or three boxes of medical supplies waiting for me.
Okay, bedtime now. I have to be up in four hours (yikes!) to get ready to head to the airport (I hope). Good thoughts for safe travels would be much appreciated. Also please keep my buddy Lexie in your thoughts for safe travels as she heads to Boston for her treatment day as well as keeping Kelly, Heather, Dylan, Malisa, and Tara in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all had a good week!
Sunday, February 11, 2007 11:59 PM EST
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time."
--T.S. Eliot
Hi Everyone,
This will be a short update. Today was an okay day overall. I made it to church this morning and stayed after for coffee hour so I got to see and talk to some of my friends. My friend, Michael, is expecting a baby very soon (his wife's due date is the 26th but they're both hoping it will be earlier than that!) so it was nice to get to talk to him and hear about how things are going there. I'm guessing that by the time I get back from Oregon on the 24th he'll have a new little baby girl or boy! And I got to see Alice, Lexie, and Emily. My dad and I made a quick stop at the grocery store for a few things and then I spent the rest of the afternoon and evening working on schoolwork. I got most of the assignments for my online class done that are due tomorrow evening and most of the reading done that I was supposed to do for my independent study meeting tomorrow (I'm still working on that for a while longer). Health-wise things haven't been too bad. My right knee is still really bothering me when I walk on it. As long as I stay off it it's fine but when I walk even just down the hall to the kitchen it starts to hurt. I hate wearing the brace (or rather I hate putting it on, once it's on it's okay) but it definitely helps when I have to be up and about for any length of time so I'll deal with it. My stomach isn't great but I think I was being too ambitious with food today so that's probably the reason. Tomorrow I head up to Boston to school and possibly (not sure as of yet) to Dr. H's (PCP) for the lab work I was supposed to have done last Monday but couldn't do when the nurse called out sick - I have to call again in the morning since they didn't return my call on Friday morning. On the way home I'll stop and run some errands in preperation for my trip this week (I better make a list so I don't forget anything!) and then come home...to do more homework! It's a bit ridiculous how much of a hard time I'm having staying on top of just these two classes - I feel like I'm just treading water, trying to keep my head above water and just when I recover from one wave, another one comes along! Oh well, as long as I'm keeping my head above water I guess I'll survive. And I'm already just over half-way through my online class, which means this week is the mid-term exam and essay but I'll manage that, too. I feel like I have so much stuff to get done before I leave on Wednesday morning - errands, laundry, packing, homework, theater class work, e-mails, phone calls, etc. - and added to the mix is the threat of a bit storm hitting on Tuesday night into Wednesday morning which may affect my flight out of Boston but I'll cross that bridge when I get there.
Okay, I'm headed to bed to read some more until my Primaxin is done and I can head to bed. Please continue to keep Kelly, Heather, Dylan, Malisa, and Tara in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all had a good week!
Saturday, February 10, 2007 11:26 PM EST
But the snow still lightly settles on the trees
And a mess is still a moment I can seize until I know
That all will be well
Even though sometimes this is hard to tell
And the fight is just as frustrating as hell
All will be well"
--The Gabe Dixon Band
Hi Everyone,
Not a big update tonight but I'm trying to get back towards doing my regular nightly updates so I'll put something up tonight. Today has been a long day with some unexpected things going on. I definitely didn't want to get up this morning to go to work but of course I managed it and got to work on time. Work was pretty quiet but I didn't get as much schoolwork done as I'd hoped and around noon I got a call from the family I babysit for sometimes (who live nextdoor to where I work) asking if I could stay with Anne (she's 10) for a few hours because they were going up to Boston and the plans for her to go to a friend's house when they left fell through and she couldn't go until later in the afternoon to stay overnight. So I said I'd do that so I made a quick trip home after work and then went to stay with Anne for a few hours. We made chocolate chip cookies and watched "John Tucker Must Die" on On Demand - not the best movie I've ever seen but it wasn't awful (kind of a typical pre-teen/teen type movie). Of course all this meant that I didn't get to rest or do homework in the afternoon. I did manage to rest for almost an hour after that before heading off to take tickets at the play at work (and see the play, of course). The play was good but I was really tired and kind of just wanted to be curled up in bed with a movie or homework (or sleeping). I was glad to see a few of my theater friends, though, one of whom played my mom in Harvey when I was in it in 2000 and it's always nice to see her (I don't see her that often - the last time I saw her was last spring when I wasn't doing so well so she was glad to see me looking better). Health-wise today hasn't been great but not too bad. My right knee is really bothering me and making it difficult to walk - I think it's my muscles and I'm wearing a brace which is helping to give it more support and not hurt as much but it's still bothering me. My stomach is so-so but I'm managing.
Now I'm hooked up to my Primaxin, finishing up my hydration, and heading off to do some homework until I can go to bed. Please continue to keep Kelly, Heather, Dylan, Malisa, and Tara in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good weekend!
Friday, February 9, 2007 11:59 PM EST
overcoming them is what makes life meaningful."
--Joshua J. Marine
Hi Everyone,
I wrote pretty much a whole update last night during the commercials during Grey's Anatomy but I hit a wrong button and *poof*, it was gone. I was writing it on my aunt and uncle's computer so I wasn't writing it the same way I do at home (in a word document in case I hit a wrong button...which I guess I've proven can happen all too easily) and therefore I couldn't recover it. Oh well, I'm sure I can remember most of what I wrote last night. The last few days have been very long and tiring with a lot of driving but I've survived them and now I'm home safe and sound. On Wednesday I drove to Spirit Fire, a retreat center that I'm hoping to hold a Lyme Out Retreat at this spring. There was a mix up about which day I was coming to tour so the woman who runs the center wasn't there but thankfully I was able to find someone at their sister retreat center around the corner who showed me around. The center is beautiful and I think it will work well for my retreat but it was annoying not being able to ask specific questions since the woman showing me around wasn't really from that center. I'll just have to keep writing them down and send an e-mail this weekend to ask a bunch of questions before I secure a weekend (probably a weekend towards the end of May). After the tour I headed to my aunt and uncle's and had a pretty relaxed evening.
Thursday was another long day with my appointment with Dr. Bock. The appointment went well. There was really no question about whether or not I'd continue the Primaxin - I'm seeing slow improvement with it, inching my way back to where I was when I had to stop it in December, tolerating it well, my labs have all been good, and, as was clearly shown during the three week lapse in treatment, going off it now would cause a crash. He also agreed with Dr. H's (PCP) suggestion that I pulse in IV Flagyl one week a month to get at the cyst form of the Lyme bacteria so I'll be doing that for a week after I get back from Oregon. I made sure that both these orders were faxed to my infusion company while I was there in the office because if I didn't push for it to happen from that office while I was there, who knows how long it would take to get done! Dr. Bock said he thought he'd send my chart to the other office and have the regular IV nurse there take care of the orders but I stressed that all this needed to be done QUICKLY since I run out of Primaxin on Monday or Tuesday. I got confirmation that the orders were received by my infusion company when they called me a little while after leaving Dr. Bock's and things seem to be set up so I won't have any break in treatment. I have to have the first dose of IV Flagyl in Dr. H's office so I can be monitored so I need to set that up (I called and left a message with their office today about that and about going in for the labwork I was supposed to have done this past Monday but couldn't because the nurse called in sick). I seriously don't know how I'll balance all the IVs during that one week with the Flagyl added in because it's dosed three times a day, the Primaxin is dosed three times a day, and I have my hydration, although the hydration is the least of my worries since I can easily fit that in since I have wonderful y-connectors that magically turn my single lumen into a double lumen (well, sort of - it splits it into two lines). I'm sure I'll figure out the dosing and juggle it all okay but I may not be getting all that much sleep during that week! At least it's just one week a month! Anyway, other than those treatment things we didn't talk about much else during my appointment. My labs this week were good - white cells came back up from last week's low and my red cells are still right on the edge of normal and below normal but at least they're staying steady. For some reason my liver function didn't get done (the lab says I didn't check off the box for it but I'm 99% sure I did) so Dr. Bock's nurse added it on and the lab can just use the blood they already have. Everything else is good lab-wise and in general things are slowly improving. So, a good overall visit with Dr. Bock. I had a pretty easy drive back to my aunt and uncle's, I did some homework, we got some dinner, I did some more homework, watched Grey's Anatomy (a really good episode - can't wait until next week!), did some more homework, and eventually went to bed. My sleep seems a little better, especially if I take my sleeping meds early so that I don't have much of a choice but to go to sleep an hour or two later. This morning I did some more homework (I have way too much reading to do over the weekend) and eventually got packed up and headed home. My aunt has been working from home because she's been sick this week (a bunch of things hitting her at once - she could use some good thoughts!) and she didn't want to see me leave and I wish I could have stayed a few more days but I'm just glad I was able to be there for as long as I was and have a nice visit. The drive home was pretty uneventful - I stopped at Whole Foods Market and got some odds and ends of stuff (mostly snacky foods - it seems to be the only place I can find plain mini rice cakes - and some protein drinks). And I also went to Cold Stone Creamery that is right next to Whole Foods - it was my first time going there but they had a nonfat no sugar added vanilla ice cream which I was happy about, even though I only ate half of it. The rest of the day I've just been resting, I took a nice shower this evening (sad when that's an exciting event in my week!), and now I'm going to head to bed and maybe get some school reading done (although Monk is on right now so I'll most likely just watch that). Tomorrow morning I have to work so I better get to bed soon!
Here are a few pictures from my trip (nothing too exciting):
"My" bedroom at my aunt and uncle's house (technically the guest bedroom but I stay in it the most often).
The view from "my" bedroom at my aunt and uncle's.
Me before heading off to Dr. Bock's on Thursday morning (very tired, as evidenced by the dark circles).
Long (and poofy) hair!
And in a braid (still long!).
And some ice along the rocks on the way back from Dr. Bock's.
Oh, and I'm having second thoughts about chopping my hair off. I'm considering just getting a few inches cut off so that it's healthier overall and then donating it to Locks of Love in a few months but I'm still teetering back and forth on this - I have a feeling I'll end up just going for it and getting it chopped off but I need to get an appointment to get it cut! I'll certainly take some pictures before I get it cut, regardless of whether I choose to chop it all off or just get a few inches off.
Please continue to keep Kelly, Heather, Dylan, Malisa, Tara, and my aunt (Deborah) in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all had a good week!
Wednesday, February 7, 2007 5:15 PM EST
I'm not doing a "real" update except to say that I'm at my aunt and uncle's safe and sound, although quite worn out from a long day of driving (and getting lost at times). But I wanted to put an article up here that I got from one of my Lyme e-mail groups today. It explains a bit about what's going on with the Lyme controversy, specifically with the IDSA (Infectious Diseases Society of America) guidelines. (The article can be read online here.)
From The Scientist
By Susan Warner
State official subpoenas infectious disease group
Connecticut's attorney general probes whether the professional society's Lyme disease guidelines violate antitrust laws
Connecticut's attorney general has launched an antitrust investigation into The Infectious Disease Society of America's new guidelines for the treatment of Lyme disease, an unprecedented move that raises questions about the government's role in scientific consensus.
Attorney general Richard Blumenthal has subpoenaed IDSA records on grounds that the guidelines, which do not recognize a chronic form of Lyme disease, are anticompetitive. If doctors refuse to diagnose patients with chronic Lyme, Blumenthal contends, patients will have limited access to treatment and insurance reimbursement, a potential violation of state antitrust laws.
The attorney general's decision to weigh in on medical consensus has ruffled a few feathers. "We're complying with the subpoena, but we're unhappy to see this kind of political interference with what are very normal and routine guidelines," Martin Blaser, chairman of the department of medicine at NYU Medical Center and president of the IDSA when the guidelines were published late last year, told The Scientist.
Blaser added that clinical guidelines have to be based on science, not economics. "This is research of the literature. What does the literature support and what does it not support," said Blaser, adding that the IDSA makes it clear the guidelines are voluntary, and physicians should use their discretion when treating Lyme patients. Patients can be harmed by long-term use of antibiotics, he noted, and a misdiagnosis of chronic Lyme could halt or delay treatment for the true cause of symptoms.
IDSA's lawyer, Alvin Dunn, said the antitrust investigation is unprecedented, and could have more far-reaching effects. "If we have to worry each time [we craft medical guidelines] that maybe we will be getting subpoenaed and have to go through the time, effort, and expense of responding, then we might not take controversial but appropriate positions," Blaser noted.
Blumenthal countered that even with disclaimers, the guidelines have a significant impact on the clinic. "The question is whether there is a denial of coverage to patients and doctors as a result of inflexible standards that are then adopted by insurance companies," Blumenthal told The Scientist, adding his office has not ruled out extending the inquiry to insurers. According to the America's Health Insurance Plans, a Washington trade group, major medical insurers do not cover chronic Lyme disease, citing the IDSA guidelines in their medical coverage statements.
Raphael Sticker, president of the International Lyme and Associated Diseases Society (ILADS), which supports the view that chronic Lyme exists and has published its own guidelines, said researchers should welcome the challenge to the power of a large, prestigious society. "When the IDSA guidelines say that there is no chronic Lyme disease (ie no persistent infection with the Lyme spirochete), that stifles scientific inquiry," he said.
The most recent IDSA treatment guidelines for Lyme disease note that "there is no convincing biologic evidence" for chronic infection by Borrelia burgdorferi, the causative agent in Lyme disease. However, Sticker and others who believe chronic lyme exists point to references that suggest the opposite conclusion.
Blumenthal's investigation is warranted, contended Lorraine Johnson, a healthcare lawyer and member of the advisory board of the Lyme Disease Association, Inc, because members of the IDSA panel which wrote the new guidelines had ties to Lyme product manufacturers that benefit from a limited definition of Lyme disease, which makes it easier to prove efficacy in clinical trials.
Five members of the panel disclose conflicts of interest in the guidelines, such as ties to Baxter vaccines, which is developing a Lyme vaccine. Tom File, who chairs IDSA's practice guidelines committee, defended the organization. "We are very strict in making sure there is full compliance and disclosure of conflict of interests," he said, noting corporations are most likely to turn to scientists with strong expertise for help in developing products. Blaser, for his part, noted that many doctors have their own financial conflicts of interest in arguing chronic Lyme exists, since if the IDSA recognized chronic Lyme, insurers would be more likely to pay for it.
As it stands now, the small group of Lyme specialists who treat chronic Lyme are getting rich from patients who pay out-of-pocket, said Karen Vanderhoof, chairwoman of the Lyme Disease Foundation. "But if the IDSA guidelines provided some flexibility then patients could go to any doctor. Now there's no competition for the chronic patient. IDSA throws them out of the office."
Susan Warner
mail@the-scientist.com
Links within this article
CDC: Lyme disease
Martin Blaser
I Oransky, "Hate ticks? Save deer," The Scientist, January 1, 2007.
America's Health Insurance Plans
International Lyme and Associated Diseases Society
ILADS guidelines
GP Wormser et al, "The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: Clinical practice guidelines by the infectious diseases society of America," Clinical Infectious Diseases 2006;43:1089-1134.
M Frey et al, "Detection of Borrelia burgdorferi DNA in muscle of patients with chronic myalgia related to lyme disease," Am J Med 1998;104, 591-594.
RB Stricker et al, "Lyme disease: Point/Counterpoint," Expert Rev Anti Infect Ther. 2005 Apr;3(2):155-65
Lyme Disease Association
R. Lewis, "Vaccines: Victims of their own success?" The Scientist, July 19, 2004.
Lyme Disease Foundation
[Published 7th February 2007 02:56 PM GMT]
Tuesday, February 6, 2007 10:38 PM EST
What's impossible
Well they forgot
This world keeps spinning
And with each new day
I can feel a change in everything"
--Jack Johnson
Hi Everyone,
I just wanted to put up a quick update tonight. The theater classes today proved to be quite tiring and really followed the rule that you can please some people all the time, everyone some of the time, but not everyone all the time! More specifically, you can't please this one girl most of the time - I swear, she gets upset every time I hand out parts for plays! I just can't win with her. The part is too big, the part is too small, she doesn't want to be a boy, etc. So she cried, said she'd rather just quit the play, caused a lot of stress for me (and her friends in the class), and in the end decided to stay in the play. And I've realized that it's better to just not try to please everyone and just let them decide what they want to do for themselves. Anyway, the rehearsals were rocky but hopefully they'll go better in the next few weeks (well, we just have one class before we have a week off for school vacation which is when I'll be in Oregon). I didn't make it to choir rehearsal but I wasn't expecting to but I didn't leave the art center until 8:30 (class ended at 7:30) and had to pick up a prescription so I didn't get home until about 9pm - a very long day for me. Now I'm just trying to finish up my Primaxin infusion so I can go to bed!! I'm so exhausted and honestly could have fallen asleep when I got home at 9pm. And I need my strength and energy for the next few days. I may take my dad's car which would make the driving a little easier since he has cruise control but I do like my car so I'll see how I feel about it tomorrow.
I may not do an update tomorrow but I'll update on Thursday night after I get back from my appointment with Dr. B (Lyme doctor). Now I'm off to curl up in bed until I can go to sleep (I really hate my Primaxin schedule but as long as it's helping I'll deal with it!). Please continue to keep Kelly, Heather, Dylan, Malisa, and Tara in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all had a good Monday!
Monday, February 5, 2007 8:53 PM EST
If you cannot refuse to fall down,
refuse to stay down.
If you cannot refuse to stay down,
lift your heart toward heaven,
and like a hungry beggar,
ask that it be filled,
and it will be filled.
You may be pushed down.
You may be kept from rising.
But no one can keep you from lifting you
from lifting your heart
toward heaven -
only you.
It is in the middle of misery
that so much becomes clear.
The one who says nothing good
came of this,
is not yet listening.
--Clarissa Pinkola Estes
Hi Everyone,
I'm feeling a little better today than I was yesterday, probably because I got a ton of sleep last night. Seriously. I started falling asleep around 8:30pm in bed watching TV and when I woke up from that little nap (it wasn't too long but I was definitely out) I opted to skip my 10pm infusion of Primaxin and just go to bed. I was asleep by 10:30pm! I was expecting to have to be up and out of the house by 10am today to go to Dr. H's (PCP) and have some labwork done but I got a call around 9am saying that the nurse had called out sick today and so I couldn't have the labs done which I was actually relieved about. So I went back to sleep and ended up sleeping until about noon. Yep, I got close to 14 hours of sleep and I think I really needed it. I was still exhausted but I've had some surges of energy so I was able to get the schoolwork done that I needed to get done by this evening so now I can relax a little about that, although I have more work due on Friday, a ton of reading to do for next Monday when I meet with Maya about my independent study again, and I have to take the mid-term for my online class between this Friday and next Thursday so I can't really take much of a break from all that (I'll hopefully get some reading done tonight). So, today has been more or less a laid back day. I'm still in my PJs and it has been so nice (and needed!) to have a day to rest and relax and hopefully it will help me get through the next week. Physically I'm feeling a bit better, although I've been battling a migraine for most of the day and the abdominal pain and nausea is still definitely there. And emotionally I'm not quite as exhausted. So things are just overall better. I'm going to try to move my infusion schedule around a little to allow me to go to sleep earlier and be better about taking my sleep meds at a consistently good time (probably 10pm) so that by the time I'm done with the infusions I'm ready to just lie down and fall asleep. Tomorrow the theater classes should go alright - we're just doing read-throughs in both the older classes and the younger class is always pretty easy to handle (lots of easy games that they just love, although I'm going to try something new tomorrow with them working as a whole class to "write" a play and act it out). Hopefully the way I split the older group up will work well and the casting will be good.
Okay, I'm off to hook up my Primaxin and hydration and curl up in bed to watch Heroes. Please continue to keep Kelly, Heather, Dylan, Malisa, and Tara in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all had a good Monday!
Sunday, February 4, 2007 5:33 PM EST
the subtle difference between
holding a hand and chaining a soul
and you learn that love doesn't mean possession
and company doesn't mean security.
And you begin to learn that kisses aren't contracts
and presents aren't promises and you begin to accept
your defeats with your head up and your eyes ahead
with the grace of an adult not the grief of a child.
And you learn to build your roads today
because tomorrow's ground is too uncertain for plans
and futures have ways of falling down in mid-flight.
After awhile you learn that even sunshine
burns if you get too much so you plant your
own garden and decorate your own soul
instead of waiting for someone to bring you flowers.
And you learn that you really can endure
that you really are strong
and you really do have worth
and you learn
and you learn...
--Veronica A. Shoffstall
Hi Everyone,
A little while ago I was getting ready to write an update and I was going to write that I'm hanging in there, things are going okay, I'm plugging along, etc. And then I stopped. I stopped doing and just lay down, curled up, and let myself realize how I'm really feeling. I'm exhausted - physically, emotionally, and every other way. When I finally let myself lie down, I realized how heavy my arms, legs, head, body, everything is and how much effort it takes to move. This is what happens to me when I'm pushing too hard; pushing and just cointinually on the go, never letting myself stop. Because it's the stopping that's the problem sometimes. When I stop I realize how I feel and instead of just pushing through and keeping myself so busy that I can't really stop and feel bad I'm allowing myself to realize what's going on and what hurts, what aches, what's tired, what feels bad. I'm not saying that I'm feeling completely awful, I'm just definitely not feeling well. I'm exhausted, my head hurts (a kind of pressure-type headache, not a migraine), I'm nauseous, I'm having abdominal pain, I'm having some issues swallowing, my hands are tingly and "fuzzy" (no better way to explain it), my muscles (at least I think it's my muscles) are twitching, and various other things are going on. And emotionally things are...well, not great. But this usually goes along with the physical exhaustion so I guess it's no big surprise. Today was supposed to be a day of working on school stuff but that's not happening, at least not now. It's just too much. So I'm just going to curl up and watch TV, maybe a DVD later (I have 3 from Netflix that I have yet to watch - An Inconvenient Truth, Little Miss Sunshine, and an Eddie Izzard DVD - I'm thinking about watching Eddie Izzard since I know that will make me laugh and I could use that).
Sorry this isn't the happiest, most upbeat update but I guess they all can't be like that. Today is also Caity's 23rd birthday so that is a bit rough to deal with. It's just a rough day. But hopefully resting today will help me make it through this week. I certainly have a difficult, busy, and tiring week ahead of me. I go up to Dr. H's (PCP) office tomorrow for labwork then swinging by school to pick up a book, Tuesday I have my three theater classes and then possibly choir if I can manage, Wednesday I head off to tour a retreat center (a possible location for future Lyme Out Retreats and then to my aunt and uncle's for the night, then to Dr. B's (Lyme doctor) on Thursday and back to my aunt and uncle's for the night, then home on Friday for a resting day after I get home, working on Saturday and taking tickets at the "grown-up" (as opposed to children's) play that night, and church on Sunday if I'm still standing. I have no days with nothing planned until I head to Oregon on the 14th so I just hope I make it. I'm glad that I sucked it up and clicked that I may need wheelchair assistance in the airports when I bought my plane tickets - I don't know if I'll need it but it may prove helpful and allow me to conserve energy. I'm stressed out right now about the theater classes and the appointment with Dr. B on Thursday but I see the light at the end of the tunnel in my trip to Oregon - that will be a good break (although it will be filled with schoolwork) and I really need it.
Please continue to keep Kelly, Heather, Dylan, Malisa, and Tara in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all had a good weekend!
Friday, February 2, 2007 2:30 PM EST
A thousand fibers connect us with others;
and along those fibers, as sympathetic threads,
our actions run as causes, and they come back to us as effects."
--Herman Melville
Hi Everyone,
I figured I might as well do an update now, earlier in the day, rather than waiting until I start thinking about it after midnight and just don't feel like writing. Not a whole lot going on here. I had a quiet-ish day yesterday - slept in, picked up some books from the library, did homework (although not as much as I'd hoped), rested, watched Grey's Anatomy, and did some more work on figuring out my theater class situation. It looks like I'm going to have to do something I was hoping not to do in order to split the group - I have to have the second class right after the first class from 6-7:30pm on Tuesday nights. Not only does this mean I'll have 4 straight hours of theater classes (younger class from 3:30-4:30, first older class from 4:30-6, and second older class from 6-7:30pm) but it will also conflict with choir rehearsal at church which is from 7-8:30pm. So I'll either have to take the spring off of choir (which I really don't want to do) or miss the first half of rehearsal and probably only make it about every other week. But it seems like the best option for the classes so I'll do what I have to do. I haven't heard from 7 of the kids/parents yet so I'll call them today (although only 4 of them would be meeting at the later time so the others wouldn't be affected - still good to touch base with them, though) and then tomorrow I'll call them all to let them know what's going on, tell them which play they're in, and which time to come at. Hopefully once this all gets sorted out things will go more smoothly and I think I'm going to start out offering two classes in the fall and if there aren't enough in either class I can combine them - easier than trying to split the class up and keep the kids together that want to be together! And I promise once this all gets sorted out I won't take up whole chunks of my updates talking about it! The last two nights I haven't slept great but not up as late as I have been and I've been able to sleep in (sleeping almost 12 hours a night - trying to catch up on sleep I lost when I had to get up early) but I'm finding that I hit a big slump around 9:30pm. I wish I could go to bed then but my evening Primaxin infusion doesn't start until 10pm and it takes about two hours so my bedtime is kind of dictated by that. Today is going to be a fairly quiet day. I didn't get up until about 1pm so my day is pretty much just beginning. I'm going to go swing by work soon to pick up my check (well, after I call to make sure it's there), then swing by the bank to deposit it, do some homework this afternoon, and take a nice bath tonight (so looking forward to that!). And perhaps a nap in there since Saturday, Sunday, and Monday will all be early-rising days and I need to get as much sleep now as possible, although you don't exactly store it up, do you!?! Oh, and I've decided the time has come to chop my hair off and donate it to Locks of Love. I honestly thought I'd get sick of it and chop it off a while ago - surprising I've lasted this long with it really long and more difficult to deal with. I'm ready to have short hair again and not have to deal with it that much! I'm hoping to get it cut before I go to Oregon on the 14th but I'll have to see when I can get in to my hairdresser.
Please continue to keep Kelly, Heather, Dylan, Malisa, and Tara in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all had a good week!
Wednesday, January 31, 2007 11:47 PM EST
--Anais Nin
Hi Everyone,
I am so worn out from the past two days and I'm feeling pretty cruddy tonight but I wanted to put up some kind of update. Yesterday I slept in quite a bit and was glad I did because my theater classes didn't go quite as smoothly as I'd hoped. It looks like the scheduling of the second class is going to be trickier than I had anticipated because these kids have so many activities. But I'm confident I'll figure it out, I'm just waiting to hear back from some of the parents (about half of them have called me already) so I can make the decisions and cast the plays and let them all know for sure which play they're in and what part they have (and what day they're having class on!). By the end of the classes I had a major headache and was considering skipping choir rehearsal but decided I really ought to go since we're singing this Sunday. I wasn't feeling very well during rehearsal and couldn't stand for too long but I managed okay. I'm comfortable enough at church and with everyone in choir especially that I don't feel weird if I sit down while we're standing up in our places at the front of the church rehearsing or do whatever else I need to do to feel okay. Sometimes people ask if I'm okay but mostly they just know I'm taking care of myself and no one really seems to worry, which is good. Anyway, last night I didn't get to sleep very early and had to get up early this morning to head to see Dr. H (my PCP) so I didn't get off to a very good start this morning. My visit with Dr. H was good, though. She was running about an hour late but she really takes her time with each patient so it's not too bad waiting. I had the book I'm working on for my independent study with me as well as my current knitting project so I kept myself occupied and was actually glad to have the quiet time there in the waiting room to do a little work (although her waiting room is not nearly as comfortable as Dr. Bock's waiting room - no reclining chairs but they're not too bad). Let's see if I can sum up the appointment quickly. We talked about the IV antibiotics, of course, and she agrees with the other IV antibiotic options Dr. Bock discussed with me at my last appointment. So far my labs have been fine so my liver is holding up well and back in the normal ranges of everything so that's encouraging and since I'm seeing some slow improvement with the Primaxin it looks likely that I'll stay on that for a few more months but she didn't want to decide anything until after I see Dr. Bock next Thursday. She also thinks I should be pulsing in another IV antibiotic at least one or two weeks a month to get at the cyst form (see page 12 of Dr. Burrascano's Guidelines for more info on the cyst form) so I'll be talking to Dr. Bock about that next week. We talked about the main problems I'm having right now - sleeping, fatigue, joint pain and stiffness, and my stomach/appetite. She suggested a supplement to help with the sleep but I'm hesitant to add another pill to what I already take because the more pills I take the harder my stomach is hit. She's concerned about my eating because it's gone down in the past month or so - more nausea and just no appetite. No explanation for it except that the Primaxin was helping my stomach and appetite (backwards from how it usually is). She wants to check my amino acid levels and RBC minerals because she doesn't think I'm getting what I need from what I'm able to eat and may want me to start an IV amino acid a few times a week but first I have to go for labwork on Monday. I can't draw the labs myself at home because they're very specific tests that have their own kits to go to specific labs and the blood has to be spun and all kinds of stuff but the nurse at Dr. H's office can let me draw the blood from my line and she'll handle the rest of it so that's good at least. That's more or less everything we talked about during the appointment, or at least everything I can remember right now and from my notes.
After the appointment I picked up my Domperidone from the compounding pharmacy around the corner, stopped at Whole Foods, and came home. It was a very long day and this afternoon and evening I've been resting and unfortunately NOT doing the schoolwork I need to be doing. I have to play a bit of catch up tomorrow and Friday because I haven't turned in a short assignment that was due on Monday (I e-mailed the prof. about it on Monday afternoon) and I have to do the readings for the assignment due on Friday early afternoon so I guess I know how I'll be spending tomorrow! I just really hope I'm feeling a little better and up for it. Tonight I'm feeling worn out, almost fell asleep around 9:30pm while watching TV, and my stomach is flopping all over the place. My infusions are finishing up and then I expect to fall asleep pretty quickly (or at least I hope...*knock on wood*). And tomorrow I can sleep in a bit as long as I'm up in the early afternoon to draw my weekly labs and get them off to fed-ex before they stop picking up in my area. I really wish I could just sleep all day tomorrow and have a nice resting day but I can kind of do that on Friday - I just have to push through tomorrow! This weekend will be busy again (work on Saturday and then my mom's birthday dinner, church on Sunday and then lots of homework) and next week won't be a breeze either with a trip back to Dr. H's for labs on Monday and then to Dr. Bock's later in the week. So my updates may be sparse until things calm down a little. Please continue to keep Kelly, Heather, Dylan, Malisa, Tara, and Donovan's family in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Tuesday, January 30, 2007 0:47 AM EST
--Henry David Thoreau
Hi Everyone,
Sorry for the lack of updates the past few days. It seems that I start thinking about writing an update around 1am or later (well, to me it seems more like 10 or 11pm since my sleep is messed up) and when it's that late I never really feel much like writing anything. So I'll catch up on the past few days, although it hasn't been that exciting, just busy. Friday night wasn't quite as bad as Thursday but my sleep is definitely still off. Saturday was a very long and busy day. I only got about 6 hours of sleep (not nearly enough for me to function well...or as well as possible) before getting up to go to work but I managed okay. Work was pretty quiet and I mostly just worked on finalizing everything for my theater classes. I didn't call everyone because regardless of whether I called or not I was going to keep everyone together for class this week and split them up for next week so I'm going to talk to them tomorrow during class. I opted to not go ice skating (not a big surprise, I didn't even bother bringing my skates with me because it just didn't seem at all likely that I'd be up for it) so I swung by the grocery store to pick up the few things I needed to make a low-fat chicken pot pie to bring to the dinner with church people that night. It was kind of a long cooking process but it was worth it - the pot pie turned out really good! And the dinner was nice - I got to see a few of my great church friends who I haven't seen for a while. After getting home I worked on some homework and eventually went to bed. And yesterday I was up fairly early again to go to church - no early choir rehearsal so at least it wasn't super early but I was again going on about 6 hours of sleep. Church was good and I got to catch up with some friends afterwards, including Lexie and her mom, Alice, and sister, Emily. And there was a tortoise brought in for the RE classes (Religious Education - our version of Sunday School) so it was fun to see him. I spent the afternoon doing homework, took a shower and put clean sheets on my bed (so nice!) and eventually got to sleep. Today was a very long day - my first day meeting with Maya, the professor who is overseeing my linguistics independent study this semester. So I was up pretty early (less than 6 hours of sleep last night - oh joy)...well, after a few snooze buttons (that's a dangerous and wonderful invention) and on the road only a little later than I had planned. I stopped to get some coffee to hopefully keep me awake through the day and was only a little late getting to school. The meeting with Maya went well and I think this is going to be a good semester of interesting work. After the meeting I decided to take a little drive around the neighborhood where I lived for a year (it's about 2 miles away from school and on the way home, just up a few blocks) which was nice and I took a walk by the pond nearby. It was a beautiful day but really cold! Here are some pictures I took - don't let the sunny blue sky fool you, it was frigid!
That isn't a very exciting or interesting update! Health-wise things are rocky but I do think I'm seeing some improvement, it's just slow and hard to tell sometimes. My joints haven't been great - they get sore and stiff easily, mostly my legs and probably related somewhat to sitting funny but I didn't used to have so much trouble. But it's not too bad, I can deal with it. Tomorrow (well, technically today since it's after midnight) will be another long day, but I get to sleep in so that's great! I have a homework assignment to finish up, then I have to swing by the library, teach my two theater classes (hopefully things will go smoothly), and then to choir rehearsal. Whew! Okay, I'm determined to get to sleep at a (semi) reasonable hour tonight so I'm going to head to bed now! Please continue to keep Kelly, Heather, Dylan, Malisa, Tara, and Donovan's family in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all had a good week!
Saturday, January 27, 2007 1:06 AM EST
--Grey's Anatomy
Hi Everyone,
I think I jinxed myself by saying that my sleeping seemed to be better because last night I was up quite a bit later than even my usual for the past few months - I finally got to sleep around 6am. There's something wrong about being able to watch the morning news before getting to sleep! But the night before wasn't nearly as bad so hopefully last night was just a fluke. Today and yesterday have been quiet days. Yesterday I went over to work for a little while to talk to my boss about my theater classes. It seems we've gotten everything figured out, I've tentatively cast the two plays and either have to call all the kids tomorrow while I'm at work or opt to wait until Tuesday's class to talk to them. All the thought I'd put into the whole situation on Wednesday helped my boss and I figure things out pretty easily so as long as there aren't any more issues that come up, things should be pretty smooth (*knock on wood*). Then I went to see Charlotte's Web which was really good. I was the only one in the whole theater (I guess not many people see movies at our local theater at 4:30 on a weekday afternoon) which was kind of cool - like a private showing! The movie was really good and of course I was crying at the end. I'm almost tempted to go back and see it again but I so rarely make it to the movies that it seems unlikely to happen. It also got me thinking more about my theater class (well, one of them) that will be doing Charlotte's Web and about the specifics of how I'm going to manage things. The main issue I need to figure out is how to handle the web. I have some ideas and just need to try them out. I figure that with three classes each doing a play (although my youngest class will just do a short little play) I need to be super organized and start making lists of props, costumes, and set items NOW so that I can collect everything soon and nto have to be rushing around at the last minute like I usually do! Last night I worked on school work until very late (perhaps part of the reason I was up until 6am?) and I don't feel as overwhelmed by it as I was earlier in the week. I'm not going to jinx myself again so I won't say any more about that. Today has been a quiet, resting day for me. I slept in quite a bit and spent most of the day hanging out in my comfy chair working on some knitting, doing a little schoolwork, watching some TV (and last night's episode of Grey's Anatomy online - stupid VCR messing up taping it but thank goodness for online episodes...and of course I could have seen it tonight since they re-show it on Fridays, too, but still yay for online episodes), and not doing a whole lot else. Tomorrow is going to be a busy day so hopefully I'll get to sleep easier tonight. I'm working from 10-2, then possibly going over to the family skating party organized by my work (for the public) for a little while, then home to make a cassarole (and do my afternoon Primaxin infusion), and then off to dinner with some church friends at 6pm. I have a feeling the skating party won't happen but I'm bringing my skates to work just in case I'm feeling up to it. I've been realizing lately how much I miss skating. I don't think I've talked about it much but I started taking lessons when I was 15 (a little old for starting but I seemed to pick up the basics quickly) and continued until...I was 18 or 19. I did some little competitions but nothing big, just for fun. I really miss it and I had been thinking that if I find a club for adults or with a division for adults I'd go back to it but now I'm thinking about going back to my old club when I'm feeling a little better. My old coach is still there and it wouldn't be that much more awkward to be skating with kids as a 24-year-old than I did as a 15-year-old (okay, maybe a little more, but then again maybe not so much since there's that much more of an age difference). Anyway, just some thoughts I've been having. At the very least, I want to try to get out to go public skating at least a few times a month so I'm determined to work that in to my schedule. Oh, and as you can hear (I hope) I changed the music on here. There was a song at the end of Charlotte's Web that was really touching so when I got home I found it and that's what's on here now. It's called "Ordinary Things" and is sung by Sarah McLachlan. The lyrics to it are up towards the top of the page.
Okay, well I have a little while more before I'm done with my infusions but then I'll head to bed. Please continue to keep Kelly, Heather, Dylan, Malisa, Tara, and Donovan's family in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all had a good week!
Wednesday, January 24, 2007 11:16 PM EST
--Flora Whittemore
Hi Everyone,
Boy, was yesterday a tiring and surprising day. My theater classes (that I teach) started yesterday afternoon so I spent a good chunk of the morning and early afternoon (well...I was only up for about a half hour of real morning so it was mostly early afternoon) preparing and trying to get the script of Charlotte's Web close to finished being edited and typed up so I wouldn't have too much more to do before talking to the kids about it and assigning parts. Anyway, I had no idea how many kids were signed up and, more importantly, how many kids would show up for the first class and sign up then. The younger class was a bit bigger than my last few sessions with 10 kids signed up and only one that didn't show up (but she's a regular so I'm guessing she either forgot about it or had something else going on yesterday and will join us next week). But it was the older class that was shocking. Nineteen, yes nineteen kids came for the older class. I was shocked! And there are possibly some other kids that may join but haven't signed up yet so it may be even bigger! So, after a lot of thinking and going back and forth, I decided that it's necessary to split the class up. Now, while this will make the class sizes more managable, it means twice the work for me - another hour and a half class on a different afternoon each week, another play to get ready and do all the work on (props and set seem the most daunting aspects of the plays for me), and generally twice the work, which also means twice the money for me so it's not a bad situation. The first thing I had to do before making the decision, though, was to figure out just how small I could make the cast of Charlotte's Web without making the parts too big or difficult. I've whittled it down to 13 and I'm pretty happy with that number. So that means 6 kids need to volunteer (I really don't want to have to choose them) to split off into the other class and I also plan to move three of the kids from the younger class up to the older class. The second big obstacle was figuring out a second play that would have a small enough cast to accommodate the smallish second older class and still be comparable to Charlotte's Web (i.e. a good-sized play and one the kids would know already). So, I went through my scripts from my classes when I was a student and from when my brother was a student (and I was the assistant to his class) and found that I could adapt a script for Peter Pan to accommodate the expected class size. So now I feel I have a plan and I'm going to talk to my boss tomorrow about all this (she came in during the class yesterday and brought up the topic of splitting the class since it was obviously going to be huge and at first I told her I'd rather keep them together, but an hour and a half later and quite a bit less of a voice made me re-think that decision). And then I'll talk to the kids about it on Tuesday at their next class. I mentioned the possibility of splitting the class to them yesterday and their main question was what the other play would be, which I didn't have an answer for since I wasn't expecting to need to be thinking about that! Okay, so now that I've explained all about this process that you may not have been at all interested in, I'll go on to other subjects!
So, after the two and a half hours of theater classes which always tires me (and my voice) out I headed off to choir rehearsal. I got there early and had a little something to eat while mulling over the theater class prediciment. Rehearsal was fine but we were a pretty small choir (lots of people sick or off busy with other things) and my voice wasn't that great from yelling over so many kids beforehand. When I got home from choir I did some more theater work, watched some TV, and eventually went to bed not too late for me. My sleep seems to be improving a little bit, probably partially because of being back on the Primaxin (antibiotic) and partially because I started using a time-release Melatonin that has allowed me to cut down quite a bit on my regular Lunesta use and hopefully will replace it altogether (and hopefully I won't need the Melatonin either after a while). Yesterday morning and this morning I actually woke up and got up when it was still morning at about 11:30am - pretty early for me compared to the past month or more. Today has been a quiet day, pretty much entirely devoted to theater stuff (I wish I got paid for all the time I spend at home working on it!) and now I really have to get some school reading done before I go to bed. I have at least another hour of Primaxin infusion so I should be able to get a little done. I drew labs this morning and was really excited to get my new trackball mouse in the mail. It's the kind that has the trackball that you control with your thumb and you don't have to move it around at all - it's great! A little tricky to get used to but I'm already pretty used to it. I've wanted this kind of trackball for many years and finally decided to order one when I was ordering my new laptop power cord (which was the wrong part of the powercord, by the way, so I had to order the other part - I didn't realize the first one I ordered wasn't the WHOLE power cord but only the part that plugs into the wall). I also baked some banana bread this morning which is getting eaten up pretty quickly! It's annoying that I have to wait for the bananas to ripen before I can make more but at least I've gotten smarter about putting a few bananas aside in a bag so they don't get eaten before they're ripe enough to bake with! Maybe I'll make some pumpkin bread tomorrow since I have a few cans of pumpkin waiting to be used. I'm trying to keep baking things I can be snacking on because my eating for the past few weeks hasn't been great but I'm getting in an okay amount, just not great. Otherwise health-wise I'm doing so-so but definitely seeing some small improvements from a few weeks ago so that's encouraging.
Okay, off to do some reading and hopefully get to sleep at a reasonable hour! Please continue to keep Kelly, Heather, Dylan, Sarah, Malisa, Tara, and Donovan's family in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all having a good week!
Monday, January 22, 2007 9:31 PM EST
Is all that you can see,
Just keep on climbing
Til you're where you want to be
Then find yourself a resting-place
Where you feel satisfied.
And take the good view in off the mountainside."
--Michael Troy
Hi Everyone,
Before I write my update, I have to say that I was extremely saddened to find that Baby Donovan earned his angel wings on Saturday night. He was such a sweet, cute, strong boy and it's heartbreaking that he is gone, but he is free from pain and able to run and play. Please keep his family in your thoughts and prayers.
I didn't mean to go the whole weekend without an update! Let's see if I can remember what I did this weekend...Friday wasn't as early a night as I'd hoped but I don't think it was too late. I worked on Saturday - a pretty quiet day and I was able to work quite a bit on the Charlotte's Web script for my theater class (I'm not writing it, just typing it up and editing it a bit). After work I ran some errands, got some crafty stuff and yarn and various other stuff. The rest of Saturday I spent working on school work and resting. I had kind of a bad night that night and had trouble getting up to go to church early for choir rehearsal on Sunday morning. But I made it up and to church and it was a good service. The rest of the day I spent on homework and actually got a lot done. And today has been quiet. I slept in, finished up the homework that was due today for my online class, made a quick trip to the grocery store for a few things, and now I'm resting and watching Heroes (so happy it's back with new episodes finally!). It's interesting that I got hooked on that show by watching all the previous episodes online and thought it was so great that some networks have shows online. Well, over the past few days I've been doing the same thing with Ugly Betty which I think is a great show and I'm so glad to be able to catch up on it online. I have a tendency to not start watching a show if I haven't been watching it all along, or at least if it's mid-season so I'm just happy to have episodes of a lot of shows available online now! Tomorrow my theater classes start (better put some thought into how to start out the classes) and then I have choir rehearsal. The rest of the week isn't too hectic but I have to get started on this week's homework for my online class as well as readings for my independent study - my first meeting with Maya, my prof. for the independent study, is next Monday and I have a bit of reading to do before then so we have something to talk about! Oh, and the other day I got a quite belated birthday present from the wonderful Sarina (it was so late because she was going to bring it to the summer chill last summer but forgot it and it took a while for her to send it) which was such a great surprise! I think maybe having different people send birthday presents at various times during the year makes it that much more exciting when you open them! She gave me a pair of frog socks (so cute!), a little Ty bear called Radiance (inside the little tag in her ear it says: "A happy, curly bright pink bear Will bring you joy without a care. I'll be the bright spot in your day And help to take your cares away!"), and the most perfect charm bracelet with a frog charm and two beautiful turtle charms. Such a wonderful surprise!
Before I sign off for the night and curl up in bed for the rest of Heroes and maybe an episode of Ugly Betty online after that, I have a few pictures to share:
The ginormous box of supplies from my infusion company. This box had 23 days of the Primaxin (3 infusions a day, each infusion is 2 100mL bags so that's...138 bags!), 2 weeks of hydration supplies (14 liters of saline), plus all the other supplies of IV tubing, saline and heparin flushes, dressing change kits, huber needles, and everything else.
The charm bracelet from Sarina - you can see all three charms in this picture (the ones on the right and in the center are the turtles and the one on the left is the frog).
How I spent all afternoon and evening yesterday - in a cocoon of stuff on my bed. I'm a bit of a multi-tasker - I'm knitting, reading for school, taking notes/doing various things online, and I think the TV is on, too. What can I say, I work better when there's a lot of things to focus on, otherwise I get sidetracked easily!
Please continue to keep Kelly, Heather, Dylan, Sarah, Malisa and Donovan's family in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all having a good week!
Friday, January 19, 2007 0:45 AM EST
But the snow still lightly settles on the trees
And a mess is still a moment I can seize until I know
That all will be well
Even though sometimes this is hard to tell
And the fight is just as frustrating as hell
All will be well..."
--The Gabe Nixon Band
Hi Everyone,
Sorry for not updating last night (somehow I thought it was more than one night) - I didn't think about updating until the wee (or not so wee) hours of the morning (yep, the insomnia is still rearing its ugly head). I guess that just goes to show that the past few days haven't been very interesting so there wasn't much that necessitated an update. Let's see...on Thursday I actually made it out of the house to run some errands! First time in a while that I've managed to get dressed and go out on a day when I don't have to go out anywhere. I just went to the bank and post office and was exhausted by the time I got home (I was out for a whole half hour and spent about an hour before that getting things ready to mail off) but I got the errands done which is an accomplishment. I spent the rest of the afternoon and evening working on schoolwork and resting - not too exciting. I got my Friday morning assignments in just before 3am this morning since I knew I wouldn't be up by noon when it was due (9:00am pacific time since my class is through a west coast school) and eventually got to sleep a little after 4am. There are some days when it seems like the insomnia isn't as bad but then I have a night like last night which reminds me that it's still alive and kicking. Today was another quiet day spent in my PJs resting. I did some knitting, worked on editing the Charlotte's Web script I'm using for my older class this spring, watched some TV, and just took it easy. I'm having issues with my computer's power cord where it has to be in a very specific position to work so I ordered a new one and I just hope it comes soon! In the mean time, I'll just try to get it to charge to keep me going or else I'll resort to using the computer downstairs (which would really suck). Tomorrow I'm working from 10-2 (better try my best to get to sleep SOON if I want to be at least semi-awake for that) and I have a few errands to run after that (yarn sale at A.C. Moore!) and then I'll probably work on school stuff for the rest of the afternoon (I hope - maybe I'll be able to get some done at work, too).
Okay, I'm headed to bed. Please continue to keep Kelly, Heather, Dylan, Sarah, and Malisa in your thoughts everyone else having a rough time. Please send some extra good thoughts to Donovan and his family as they have received some very difficult news. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all having a good week!
Wednesday, January 17, 2007 0:43 AM EST
Is all that you can see,
Just keep on climbing
Til you're where you want to be
Then find yourself a resting-place
Where you feel satisfied.
And take the good view in off the mountainside."
--Michael Troy
Hi Everyone,
Not a whole lot to update about tonight. I'm keeping my update about my doctor's appointment last week and all of that up here so if you missed it you can see it below this post. Today I mostly took it easy. I got to sleep around 3:30 or 4am this morning and had another late sleeping day, but not as bad as yesterday when I didn't wake up (for good) until just before 4pm. Today was about 2:30pm - still not great. I really want to get back on a "normal" sleep schedule but it just doesn't seem to be happening so I'm working with it the best I can and I'm getting schoolwork done late at night and into the wee hours of the morning since I don't seem to have that much time to do it during the day. I think it's messing up my sleep schedule even more to only be up for a few hours of daylight and often I don't really "see" the daylight except through the curtains in my room since I try to keep my room pretty dark to allow me to sleep when I need to and avoid the light when I'm having headaches. Anyway, I spent the afternoon working on schoolwork, took a shower, went off to choir rehearsal, did more homework, accessed my port, and finished up my homework for week 1 of my online class. Now it's on to week 2 which I'm actually really excited about since it's about Health, Illness, and Health Care! Right up my alley! I'm starting on the readings tonight and really trying my best to stay afloat with this class and get into the swing of things. And then my Wheelock independent study will be starting up soon but it's fairly flexible so I'm sure I'll be able to juggle the two classes pretty well. I've been so blessed to have understanding teachers and haven't had a problem with extensions on assignments and other accommodations. So, not a whole lot going on today but I'm perfectly fine with that. Tomorrow I need to bake my older sister and brother-in-law's Cookie of the Month Club batch of cookies for January (that was my cute christmas present to them since I didn't get to send as many kinds of cookies at Christmas as I wanted but this works out better anyway since they have a whole month to eat each batch) - that shouldn't be too stressful or take too long. And I might do some other baking depending on when I wake up and how I'm feeling. I also need to get out to the post office if I can to get some stamps to mail off letters to my theater kids letting them know what's going on with the class this spring (basically that we're going to be doing Charlotte's Web). If I don't make it to the post office tomorrow I'll do that on Thursday and perhaps tomorrow I'll make it to the movies to see Charlotte's Web (you can see why I want to see it since I'm doing it with my older class this spring). There's a showing at 4:20 at the theater about 5 minutes away so there's a good chance I'll make it there SOME day this week.
Health-wise things aren't great but could be worse. I'm still struggling a bit with eating but doing my best to get in as much balanced stuff as possible, especially protein since I tend to get anemic when I don't get enough protein for a length of time. I've been having more pain in my right knee and hip when I walk lately but that might be partially due to sitting around so much lately since it does seem to get a little better when I move around more (although that also makes it hurt so it's hard to pick it apart and see what's going on). And of course the sleep thing is a big issue right now but I'm going with the flow. As long as I don't have a lot going on it's not too big a deal but on the days when I have to get up early-ish, like Saturdays to work at 10 or Sundays to get to church by 10:30 at the latest (and earlier on Sundays when the choir sings), it becomes much more of an issue. In general I'm feeling run down and worn out but that's kind of to be expected since I just started back on the Primaxin on Friday - I just forgot how hard it hits me at first.
Okay, I'm headed to bed with my school books and hopes of getting to sleep in the next few hours. Please continue to keep Kelly, Heather, Dylan, Sarah, and Malisa in your thoughts everyone else having a rough time. Please send some extra good thoughts to Donovan and his family as they have received some very difficult news. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all having a good week!
Monday, January 15, 2007 10:45 PM EST
--Martin Luther King
Hi Everyone,
I'm finally getting a chance to sit down and catch you all up on the past few days including my trip to CT to my aunt and uncle's house and to NY to see Dr. Bock (both part of the same trip). So I'll backtrack to the beginning of the trip. I left on Wednesday afternoon and had a pretty uneventful drive to my aunt and uncle's. It was nice being there and that night was pretty quiet. My online class started on Monday so I worked on some homework that night, de-accessed and showered, and slept pretty well (but still didn't get to sleep that early, although it does seem to be getting better). On Thursday I was up relatively early, had a little something to eat (broke out the babyfood which I honestly just have to say I'm thankful to be able to do, as much as I hate the thought of eating babyfood), and got ready to head out. It was a pretty easy drive to Dr. Bock's and I had left a lot of extra time to get there (I wasn't quite sure how long the drive took) so I had an hour to kill when I got there but they have such a comfy waiting/infusion room (which, for the second or third month in a row was empty) with some of the most comfortable reclining chairs so I brought some school reading in with me and just kicked back, read, listened to my mp3 player, and waited for my appointment.
The visit was good, probably one of the best visits I've had in a while, especially for being one where I'm not doing very well. Dr. Bock supports me continuing with the Primaxin for at least another month but we have to keep an eye on my liver numbers because they were getting kind of high about a month ago but have come down while off the Primaxin and on 3 different supplements to help support my liver. Depending on how I'm doing in a month, how my liver is doing, and what's happening with my insurance companies there are a few options we discussed. 1) If my liver seems to be doing okay and I'm showing continued improvement, Dr. H (my PCP) will push my insurance company to continue the Primaxin. 2) If either my liver isn't doing well or I'm not improving (or if we're having insurance problems with the Primaxin), there are two other IV antibiotics that are good options for me - IV Flagyl or IV Zithromax. If I did IV Zithro and my stomach didn't have to be handling that med, I'd be able to try doing oral Mepron with it to treat Babesiosis, a co-infection of Lyme disease which I've been battling for a long time and, despite multiple treatment rounds for it, it appears that I still have it (based on symptoms). I think the fact that I've gotten significantly worse over the past 3 weeks of being off the Primaxin is good proof for him that it is making a difference and, if it comes down to fighting the insurance company to cover it, he might be more comfortable doing that. We discussed a few possible supplements to help with various things (I can't remember specifics on any of them because he's still looking into them for me) and overall just had a good conversation about everything. I think I'm finding that, as much as it helps having someone else there (like my dad) to absorb the information and what's being discussed, I think I have better conversations with Dr. Bock (and maybe all my doctors) when I'm there by myself. When someone else is there with me, often Dr. Bock ends up talking to them instead of talking to me so I think I'll keep going in to the appointments by myself and just be sure to take good notes so I remember what we've talked about.
The rest of that afternoon was pretty uneventful - I drove back to my aunt and uncle's house, we had a little dinner, I did a little schoolwork. That night when my aunt got home from a church meeting we ended up staying up for hours talking which was really nice. I got to hear more about her experiences, about my grandmother and her cancer, and a lot of other things. It was a pretty rare experience since we never have the opportunity for such a long, in depth talk because either the visit is too short or it's always more of a gathering with the rest of my family or for Thanksgiving or Easter. It was just really great to get to talk like that and I'm thinking that it would be nice to go visit for a weekend sometime when there's more time to talk and spend time together. Then on Friday morning I finished up some assignments that were due that day and headed home in the early afternoon. I took my time getting home, stopped off at WholeFoods which is always fun, and ran a few other errands before getting home and crashing. I got my shipment of Primaxin on Friday and started back on it on Friday night. It's definitely hitting me hard which I'd forgotten it usually does. Since I'm getting it through my "other" infusion company (where I get my hydration from) the little bags of saline with the Primaxin powder vial attached is a little different and the saline bag looks like a little mini liter of saline bag which I found really cute. I guess I like mini things!
I worked on Saturday (pretty uneventful), ran some errands, and the family went out to what turned out to be a disaster dinner at Olive Garden for my younger sister's 17th birthday. I won't go in to why it was such a disaster but we're not planning on going back there anytime soon. On Sunday I went to church and spent the rest of the day resting. I'm definitely worn out from the trip last week but I didn't realize just how worn out until today when I was really able to sleep and rest. I got to sleep around 3am or 3:30am this morning, not that late compared to some other nights, I had my alarm set to do my whole morning antibiotic waking up and going back to sleep routine, and then ended up sleeping until amost 4:00PM!! When I woke up and looked at my clock and it said something like 3:50 I did a double take and had to check another clock to be sure it was right. That is by far the latest I've ever slept and it means that (without figuring in the time I was awake for the antibiotic hooking and unhooking) I slept for more than 12 hours. I'm supposed to start my afternoon antibiotic infusion at 3:00pm and I never would have thought that I'd need to set an alarm to wake up for that infusion! It's just crazy and I'm not sure what to think about it other than that I just need more sleep. My body is obviously really worn out and I just need to rest a lot. I've been working on homework and watching some TV this afternoon and evening and now I really need to buckle down and get some homework done before I get too tired (hard to believe that after being up for less than 7 hours I'm already ready to go back to sleep). I'm going to run some extra fluids overnight and hope I'm feeling a bit perkier tomorrow, but I have all week to rest at least - I just have choir rehearsal on Tuesday evening and I'm working on Saturday so I anticipate spending most of the rest of the week resting, sleeping, maybe making it out to the movies to see Charlotte's Web, and just taking it very easy.
So, I think that gets you up to speed on everything since my last update. I have some pictures from my trip last week that I want to share before I sign off:
Driving through the Berkshires on the way to Dr. Bock's
There was some snow on the ground!
Sunset on the drive back to my aunt and uncle's
Another sunset shot
And one of the new Primaxin bags
Please continue to keep Tara, Kelly, Heather, Dylan, Donovan and his family, Sarah, and Malisa in your thoughts everyone else having a rough time. And this Wednesday my little buddy Lexie could use some thoughts for good scans!! Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all having a good week!
Thursday, January 13, 2007 5:12 PM EST I just wanted to let you know that I'm working on an update about my appointment with Dr. Bock and my trip to my aunt and uncle's house. I'll hopefully have it up later tonight but it may not be up until tomorrow because I'm worn out and about to head out for a birthday dinner for my younger sister so I may not be up to it tonight. But things went well!
Wednesday, January 10, 2007 6:00 PM EST
--Albert Camus
I just wanted to get on here quickly and say that I am going to be able to get the Primaxin through the wonderful infusion company where I get my hydration from and they are going to bill my secondary insurance (since my primary insurance has denied coverage). They are pretty sure they'll be able to get it covered so they're shipping it to me now and I'll be able to start back on it this weekend. Such a blessing and I guess it's a lesson that when one door is closed, a window is opened and to remain hopeful even when the situation seems hopeless. I can't say how relieved I am to be getting the Primaxin and, even though this may only be a month's worth, it gives me some valuable time to evaluate my other options and hopefully regain some of the ground it seems I've lost in the last few weeks while without treatment. Thank you to anyone who sent prayers, thoughts, energy, or anything else to me - things do seem to be working out so I thank you from the bottom of my heart! I may update tomorrow after my appointment with Dr. Bock but don't be surprised if you don't find an update until Friday evening.
Tuesday, January 9, 2007 11:59 PM EST
--W. Ralph Ward
Hi Everyone,
It looks like there may be some hope for getting the Primaxin, at least for a month to give me and my doctors time to figure things out. (If you missed last night's update about the Primaxin being denied, you can see it below this update.) There aren't any definites right now but at least there's hope. I could use some extra thoughts and prayers about this. Today was okay - still feeling pretty cruddy and exhausted and having headaches and just feeling crashy (if that isn't a word, I think it needs to be one!). I was up late again last night but only until about 3am so not as bad as it's been some nights. I spent the day mostly resting and made it to choir rehearsal this evening with a quick stop at the grocery store on the way home. By the time I made it home I was just so exhausted and went back to resting and now I'm going to attempt to go to bed and hope that I can get to sleep more easily tonight than I have been. I need the rest and strength because tomorrow afternoon I head off to my aunt and uncle's house in CT for the night, then head to NY to see Dr. Bock on Thursday and back to my aunt and uncle's for Thursday night before heading home on Friday. When I'm at my "normal" energy this trip would be draining and difficult so I just hope and pray that I'm able to manage it without much trouble. I probably won't be updating until I get home on Friday, although I can do a short update on my aunt and uncle's computer while I'm there. Oh, and today I made my reservations to go visit my sister in February! I'm so looking forward to that trip and to seeing my sister and brother-in-law's new house!
Please continue to keep Tara, Kelly, Heather, Dylan, Donovan and his family, Sarah, and Malisa in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all having a good week!
Monday, January 8, 2007 11:59 PM EST
--Edward Teller
Hi Everyone,
I have had another bad day today which unfortunately included receiving a letter from my mail order prescription pharmacy stating that I can't get the Primaxin through them because it's not covered under my benefit plan. This has been very difficult for me to deal with and has only added to my fears of what will happen. Even if this crash is not related to being off the Primaxin, I know that I cannot maintain progress at this point without continued treatment. I will be calling Dr. H (PCP) tomorrow to see if she'd be willing to push my insurance company to continue covering the Primaxin the way I had been getting it through my local infusion company. It's frustrating that this isn't something Dr. Bock (Lyme doctor) is comfortable with or willing to do. I'm so drained - just being up is exhausting right now and I don't have the physical or emotional energy to write more so I'll leave it there. Please continue to keep Tara, Kelly, Heather, Dylan, Donovan and his family, Sarah, and Malisa in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all having a good week!
Sunday, January 7, 2007 11:58 PM EST
You can't see what's round the bend.
Sometimes the road leads through dark places
Sometimes the darkness is your friend."
--Jimmy Buffett
Hi Everyone,
I'm not going to write much tonight because I've had a rough day today health-wise and just don't have the physical or emotional energy to write too much. I did make it to church and I was so glad to be there - it was the coming of age service for our junior youth as they become the senior youth and it was very moving to hear what these amazing "kids" had to say (I hesitate to call them kids because they're so wise beyond their years and today was kind of their ushering into adulthood, although they're still only in their very early teen years). And the choir sang, very well if I do say so myself. But my enjoyment of the service, choir rehearsal beforehand, and coffee hour afterwards was affected by my really feeling pretty cruddy. I had another rough night last night - didn't get to sleep until about 3:30am and I did far too much yesterday so I was already crashing from that - so getting up at 8:30am was not ideal. Since getting home I have pretty much been reclined in my comfy chair with my feet propped up, my computer in my lap, my mouse under my hand, and my mp3 player on in the background. I painted my fingernails...kind of a long process since I did it one or two nails at a time and I don't know how long it will stay in tact for (either because it chips on its own or because I get sick of it) - it's been a long time since I've had painted nails. Here's a picture:
(yeah, it's dark...and sparkly - I'm not one for "normal" nailpolish colors, I guess)
To be honest here (and I guess since it's my page I can be as honest as I want), I'm having a rough time dealing with how I've been feeling lately. I don't know what's causing this crash - I'm sure it has something to do with pushing myself over the past month and maybe stopping the Primaxin (IV antibiotic) has played a role somehow and frankly that scares me more than the crash being caused by something I did or didn't do, like doing too much, because it raises the question of what happens if I can't get back on the Primaxin soon? I have spent too much time today thinking, not thinking intently about anything but just letting my thoughts run a little more wild than usual, and the questions of what will happen in the future have been running a little too wild. And then there are the thoughts about this crash and the fear that it's going to snowball into a replication of the crash I had at this time last year. I guess it's inevitible to have fears like this, no one can stay upbeat and optimistic all the time.
I really need to have a few restful recovery days before I head off to CT on Wednesday and then on to NY on Thursday to see Dr. Bock. I have all day tomorrow and most of the day on Tuesday (until choir rehearsal) to rest and I'll take the drive on Wednesday slow and easy and the same for the drive on Thursday to NY and back to CT and then home on Friday but it's going to be a long few days and I could use any extra energy and prayers that anyone can send to me. On my end I'll do everything I can to prepare for a tiring few days, rest, run extra fluids (which it seems I really need today since my BP has been low...which it usually isn't), try to keep up my eating and drinking although I'm struggling with that (another reason I'm wary of this crash since that was a huge part of my crash last January), and sleep as much as I can. My DVDs are ready and waiting for a day spent in bed resting, sleeping, etc. and hopefully I'll have a few better days. And I really hope Dr. Bock has some ideas of what to do when I see him on Thursday. Tomorrow I'll call and see what's going on with the prescription through my mail-order pharmacy - still hoping and praying that will come through.
Please continue to keep Tara, Kelly, Heather, Dylan, Donovan and his family, Sarah, and Malisa in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all having a good week! I'll leave you with a picture that more or less sums up my afternoon and evening (seems like I'm taking a lot of pictures lately - call it a New Year's resolution, I guess):
Sunday, January 7, 2007 1:14 AM EST
Where you stumble, there lies your treasure."
--Joseph Campbell
Hi Everyone,
Well, today ended up being quite a bit busier (and longer) than I expected. Last night I did get to sleep a bit earlier than what has become normal over the past few weeks - I think I was asleep by 1:30am. I'm shooting for about the same tonight, but it's already approaching that time so I'm not sure what the odds of that happening are. This morning my mom knocked on my door at a little after 9am with my boss on the phone wondering if I was planning to go to work this morning (we hadn't talked about it and she (my boss) hadn't said if she needed me or not so I figured I wasn't working) and I said I could go in for a few hours so she could run some errands she needed to do. That meant getting up then and making it in to work at 10am, which I managed but I was still half asleep. I worked until noon and was able to spend the time there doing some knitting while reading another script so it was pretty relaxed. When I came home I rested for a bit and then went with my mom to pick up her car from the shop (her windshield wipers wouldn't turn off the other day so she had to get them fixed to turn off!) and then we went grocery shopping. I like going grocery shopping but it was a little too much for me today, I think, although of course when we got home I didn't rest or anything, I went straight into making chicken vegetable soup (a quick-cooking one but still very tasty). The soup concludes my 12 Days of Christmas Cooking (today...well, yesterday at this hour, was the last day of the 12 days of Christmas and also was my grandmother's birthday and Three King's Day) but I do plan to continue cooking and baking as often as I'm up to it and as much as my family can eat! Here's a picture of my bowl of yummy soup:
The 12th Day of Christmas Cooking: Chicken Vegetable Soup with Rosemary and Thyme (yummy!)
Tonight I also took a shower before accessing my port and hooking up my fluids (the shower was actually before dinner, not that the order matters much). And I even straightened my hair tonight! Yeah, that rarely happens but my hair is SO MUCH nicer when it's straight. And it's really long (about to my waist when it's straightened)! Here's a picture of it:
From the back - look at that long hair!
And from the front, just for good measure. (And you can see my new coat in the background there.)
Health-wise today wasn't the best of days but it wasn't the worst of days. My stomach is doing well having a break from much in the way of "real food" so I think that will continue for at least a few more days. I forgot how much better I can feel not eating (kind of how you don't realize how much your head hurts until it stops hurting, not that my stomach is suddenly fine when I don't eat). The air hunger has been a major issue today and it just makes me feel awful. But nothing really new to report.
I'm off to bed now and I hope I can get to sleep quickly. Tomorrow I have to be at church at 9:30am for choir rehearsal which I'm sure I'll be half asleep for, but at least I'll be there! Please continue to keep Tara, Kelly, Heather, Dylan, Donovan and his family, Sarah, Malisa, and my little buddy Lexie in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all having a good week!
Friday, January 5, 2007 00:34 AM EST
I sit and rest, and think of you.
Give my weary body peace.
Let my legs and arms stop aching.
Let my nose stop sneezing.
Let my head stop thinking.
Let me sleep in your arms.
--Dinka
Hi Everyone,
Another pretty uneventful day today. I got to sleep a little earlier last night than I have been - around 2:30am. I think I was able to do that because I was stricter about settling into bed and taking the higher dose of Lunesta and just letting myself go to sleep. For some reason I seem to be fighting going to sleep some nights and that's part of the sleeping problem. Tonight I'm aiming for being asleep by 1:30am or 2am at the latest (baby steps). The weird and kind of frustrating thing is that, regardless of when I get to sleep (whether it's 3am or 5am), I keep sleeping later and later into the day. It was noon for a while, then 12:30pm, then 1pm, and today I didn't wake up until a little after 1:30pm. This whole thing really isn't like me and it's a little scary thinking that it might be a sign of something getting worse or being amiss. My body is just so exhausted all the time. I haven't been taking naps during the day (although I frequently move towards a nap and just get side-tracked in the process). I'm spending my time camped out in the comfy chair in my room with all the necessities around me in something of a nest - pillow, blanket, drinks (my chair is right next to my mini fridge but I need to start making some ice cubes in it and keeping a gallon of water nearby), remotes, cell phone, knitting. I'm happy to be hanging out in my chair rather than my bed but I suspect that I might feel less fatigued if I was lying down more. Oh well. I'm hoping to make it out of the house tomorrow...well, maybe not. I mostly just want to get to the grocery store to pick up a few things but by the way I'm feeling right now, I'm not sure I'll make it out. Today I slept late (again) and spent the day in my chair. I started my Friends marathon and I'm 3/4 of the way through the first season (I've watched the first three DVDs - well, technically I only watched one and a half but the first one and a half DVDs I watched at Heather's house a few weeks ago). I really didn't do much of anything besides resting, watching TV, knitting, reading a little bit, and taking it easy. I finished reading a script for Charlotte's Web as a possible play for my older theater class this spring and I think I may go with that, although it will somewhat depend on how many kids I have in the class. The other possibilities (I'm waiting for scripts to come so I can read them) are The Secret Garden, Little Women, and Beauty and the Beast and I'm either going to do some fable plays or an American Girls play with my younger class. I'm looking forward to the classes starting in...two and a half weeks (eek!) but of course that will require quite a bit of energy every week so I just hope I'm in a little better shape by then. I'm having quite a bit of air hunger which is exhausting in itself - definitely something to talk to Dr. Bock about next week.
I didn't exactly do any "cooking" today but I made some pudding tonight which I'm counting as my 11th Day of Christmas Cooking item. It's sugar free cheesecake pudding (made with soymilk, which they say will prevent it from setting but I don't believe it) and I put some in a little mini graham cracker pie crust I had to see how it would be. Here's a picture of it all:
The 11th Day of Christmas Cooking: Cheesecake Pudding
I did take a shower this evening which was very nice but another tiring thing to add. And I got a package of stuff I ordered from L.L. Bean which was exciting but a little disappointing. The jacket I ordered is great (although not my first choice color - I wanted it in a darker color but ended up getting it in light blue) but the messenger bag and fleece top weren't what I was expecting so I'm returning them. And I ordered some really comfy looking fleece pants from Hanes which I'm excited about. I think if I had more comfy, sweatpant-like clothes to wear I'd be more likely to get dressed everyday (although, who am I kidding, any form of getting dressed is overrated if you're just hanging around the house). Health-wise...well, I already mentioned some health stuff. I've decided that tomorrow is going to be a detox day for me - lots of water and tea and not much in the way of solid foods (my stomach needs a break). I'm thinking lots of miso soup and applesauce and maybe I'll break out some babyfood (it's really not bad and I have a ton of it). Depending on how it goes, I may extend it through the rest of the weekend. I feel like maybe my body is so worn out because it's trying to recover from the Primaxin (IV antibiotic) and get everything out of my system and it's just a real struggle because there's so much to cleanse out. So maybe a few days of detoxing a bit will help.
Before I sign off, here are two other pictures I wanted to share. The first is my mom and our cat, Elise, asleep in my mom's bed - I just thought it was really cute:
And this one is just me tonight. Nothing special, just playing around with my camera while I was writing this update:
Okay, I'm heading to bed now. and hopefully I'll be asleep before too long. I've already taken half my dose of Lunesta so I'm definitely on my way to dreamland. Please continue to keep Tara, Kelly, Heather, Dylan, Donovan and his family, Sarah, Malisa, and my little buddy Lexie in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all having a good week!
Friday, January 5, 2007 11:59 PM EST
You do not have to walk on your knees
for a hundred miles through desert, repenting.
You only have to let the soft animal of your body love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting -
over and over announcing your place
in the family of thing.
--Mary Oliver
Hi Everyone,
These past two days have seemed to go by pretty fast. Maybe that's because I'm only up for a few hours of daylight since I've been sleeping until 1pm or later after not getting to sleep until 3am or later. And I've come very close to taking a nap in the late afternoon/early evening but haven't actually taken one...yet. I'm trying to reset my sleep schedule but it's just not working and it's frustrating so I'm just going with the flow the best I can and hope that eventually I become a little less nocturnal! I've also been waking up with headaches which is a sign that something is off but hopefully that will get better soon. It seems that my cold never really developed into anything (*knock on wood*) which I'm glad about - still have the sniffles and a bit of a cough but it's not nearly as bad as it could be. I've basically spent the last two days in my PJs resting in my comfy chair. I've watched some TV and movies, did a little reading today, did various things online, and generally took it easy. Today I did some cleaning and last night I went out to dinner with my mom, brother, and sister which was good but getting dressed and going out of the house was tiring. Tomorrow I don't plan to go anywhere - another resting PJ day. I'm thinking of starting a Friends marathon. When I was visiting my friend Heather a few weeks ago we kind of started one but only got through about one and a half DVDs (out of...40) so I could just pick up from there. Maybe I'll start tonight since I don't anticipate getting to sleep for a few more hours. Or maybe I'll pop in a movie instead. Anyway, nothing else exciting to say. I did a little baking tonight for the 10th day of Christmas (today) and also the 9th day because I didn't get any cooking or baking done yesterday. Here are the pictures of what I made:
The 9th Day of Christmas Cooking: Blueberry Muffins
The 10th Day of Christmas Cooking: Orange Jello (a vegan kind I found at Wholefoods) - okay, so maybe this isn't really "cooking" but it's close enough for me.
Please keep my little buddy Lexie in your thoughts - she's had a rough chemo week and could use some good energy and prayers. Also continue to keep Tara, Kelly, Heather, Dylan, Donovan and his family, Sarah, Malisa, and my little buddy Lexie in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week so far!
Wednesday, January 3, 2007 1:17 AM EST
Show me you can risk being completely at peace,
truly okay with the way things are right now in this moment,
and again in the next and the next and the next. . ."
--Oriah Mountain Dreamer
Hi Everyone,
Sorry I didn't put up an update last night. I've had a few not-so-good nights lately of not getting to sleep until the early (or not so early) morning hours. Sunday night I was up until about 5am before getting to sleep and last night it was about 3am. Thankfully I haven't had to be up too early so I've been sleeping in until noon or later (today it was only 11:30am because I had to work at 1pm) so at least I'm getting a decent amount of sleep. Yesterday I spent the day in my PJs resting, watching some TV and movies, knitting (I'm working on a project I started last winter), took a nice bath in the evening, and generally took it easy. Today wasn't so much of an easy-going day. I worked from 1-5pm, came home for about an hour and then went off to choir rehearsal which was good - nice to see my choir friends, especially since I didn't go to church on Sunday. Yesterday I made French Onion Soup (from my new vegetarian cookbook but I used some chicken base in mine so it wasn't totally vegetarian) for the 7th Day of Christmas Cooking and today I made rice krispie treats. I need to start trying out some more new recipes (maybe more soups from my vegetarian cookbook - 'tis the season for soups!) and I don't think my family can take many more baked goods! Our dining room table is seriously piled with containers of cookies and baked goods as well as some goodie baskets we've gotten from friends. Here are the pictures of today's and yesterday's cookings:
The 7th Day of Christmas Cooking: French Onion Soup (Okay, so I don't think it looks that good in the picture but it was really tasty...trust me!)
The 8th Day of Christmas Cooking: Rice Krispie Treats (yummy!)
Health-wise I'm a bit rocky right now and just trying to hold my ground and not slip backwards (or at least keep any slipping under some kind of control). Today I battled a bad headache which I'm attributing to the bad nights of not enough sleep and maybe also partly because of the weather fluctuations (it's finally cold - not quite as cold as it's supposed to be at this time of year here but at least closer - but it's supposed to get back up close to 60* towards the end of the week!). My air hunger has been pretty bad but I'm doing okay just relaxing when it's bad and that seems to help. And of course I'm tired - not surprising and certainly nothing new but still not fun. I'm trying to do better with drinking more water (versus other fluids) and so far I'm doing pretty well with that. I like adding herbal tea bags to cold water for a little flavoring. I think I'll try to head to bed early tonight and see if I can't stop the cycle (with the help of some extra Lunesta and Phenergan).
Please continue to keep Tara, Kelly, Heather, Dylan, Donovan and his family, Sarah, Malisa, and my little buddy Lexie in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week so far!
Monday, January 1, 2007 1:56 AM EST
Maybe this year will be better than the last
I can't remember all the times I tried to tell myself
To hold on to these moments as they pass
And it's one more day up in the canyon
And it's one more night in Hollywood
It's been so long since I've seen the ocean...I guess I should.
--Counting Crows
Hi Everyone,
I hope you all rang in the new year (or will ring in the new year, depending on what time zone you're in) in a fun and safe way. I didn't do anything exciting. I stayed home with my parents (they were going to go out but decided not to when it came time to decide), watched Office Space (I gave my dad the DVD for Christmas) which is always funny, baked some rolls for my 6th Day of Christmas Cooking (yummy!), and rang in the new year by opening up a bottle of semi-sparkling sweet wine I brought back from Oregon in October. It was all very low-key but nice. I can't believe it's 2007 now. I guess this is the time when we naturally reflect on the year that is coming to a close and look ahead to what the new year might bring. This past year has certainly been one of ups and downs for me with some of the roughest months I have been through in my life so far. But even with the struggles and difficulties, I think it was a pretty good year and I feel like I'm ending it at a good place. I am once again strong and stable health-wise, at about the same place I was at this time last year or even a little bit more improved, I have a good team of doctors, and I am optimistic that 2007 will bring further improvement and better health along with new experiences, beginnings, and endings. It is amazing sometimes to realize how much can happen in one short year. January brought a downward spiral that would continue for the next 5 months before things were figured out and I was pulled out of the tailspin. And through that crash and downward spiral I was able to build a stronger friendship with some wonderful people, namely Diana, Tara, and Sarina who helped me through that very rough time and I feel so blessed to know. I started back to Wheelock in January after a year and a half leave of absence and continue to work towards my degree. The summer brought another awesome DYNA summer chill with a lot of wonderful people, my 24th birthday, another summer of art camp and teaching theater classes, and two wonderful vacations in Maine - one week in June and two in August. I made it back to Monhegan Island in Maine to hike in August, a goal I had set my sights on and was determined to meet. I started back on IV antibiotics in September and have completed 3 months of treatment so far (awaiting getting the antibiotic powder to continue treatment) with noticible improvement but still a ways to go. I had a wonderful time in Montreal with my dad in November and saw some amazing places there. I had two great trips to Oregon to visit my sister and brother-in-law - one in June and one in October. And so many of my DYNA friends and I dealt with the difficult loss of ^^Caitlin^^ during Thanksgiving week. I have made it through the year, and perhaps become wiser and stronger because of the things 2006 brought. And now I look on to 2007 and wonder what it may have in store for me. Hopefully it will bring my graduation from Wheelock in August or December. Hopefully it will bring continued improvement and treatment for as long as I need it. Hopefully it will bring continued friendships with those who are so important to me and new friendships with people I have not even heard of yet. And may we never forget those who are no longer with us but will always live on in our hearts and through our lives that have been so profoundly changed by their influence.
Okay, it's time for me to head to bed and look forward to another calm day at home tomorrow. I plan to rest, watch some movies, try to catch up on some e-mails, do some cooking (I think tomorrow I'll make vegetarian french onion soup from my new cookbook - the rolls will go really well with that), and just take it easy. Here's a picture of the rolls I made tonight:
The 6th Day of Christmas Cooking: Rolls!
Please continue to keep Tara, Kelly, Heather, Dylan, Donovan and his family, Sarah, and Malisa in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you all had a wonderful New Year's Eve!
Saturday, December 30, 2006 11:59 PM EST
all of which have the potential to turn a life around.
--Leo Buscaglia
Hi Everyone,
First of all, a big prayer request for my wonderful friend Tara who is in the hospital and could really use some good thoughts, prayers, and energy.
I don't have much to update about tonight. Yesterday I was going to do an update but I was tired and didn't have much to say so I didn't. Yesterday was pretty quiet. I slept in until about noon, took it easy, and went in to work around 4:30pm to get the mail, make a bank deposit, take down the Christmas tree (fake), and various other things. I ended up being there longer than I expected because I had to fix the antivirus stuff on the computer but it's okay, extra hours are fine with me and sitting there at the computer keeping myself busy while the antivirus downloads and updates isn't too hard to do! When I went in to work I was very surprised and touched to find that there was an envolope for me with a pair of earrings in it from one of the artists from the holiday shop. This woman was in the shop last year and we talked a few times when she came in last year and on the day when she picked up her stuff she told me to pick out a pair of earrings for myself. They're really pretty and are the ones I usually wear when I'm going to wear dangly earrings. This year we had talked a few times when she came in to check on her stuff and she is just so nice. We've talked about my health stuff and she's just such a sweet woman. So I was incredibly touched that she thought about me and left the earrings for me. They're really pretty with a white stone and a light pink stone. It's amazing how something so seemingly small and simple can mean so much and it really made my day...and week! Then last night I baked meringue cookies for the 4th Day of Christmas and cleaned...quite a bit. I vacuumed and dusted the downstairs and the basement (more of my house cleaning to earn some more money and take over the housecleaning duties from the woman who comes every 2 weeks to do some cleaning). Our new vacuum is so great! Today was very low-key. I slept until 1pm (really late for me but I needed it!) and I've spent the day resting, cleaning my room (my rug has never looked so clean!), and just taking it easy. Tonight I baked some biscuits - first just regular bisquick biscuits (a quick snack) and then some cinnamon raisin biscuits (also made with bisquick) which are my 5th Day of Christmas baked goods. I'm making it the 12 Days of Christmas Cooking instead of cookies because my family just isn't eating the cookies fast enough and they're piling up! Tomorrow I believe I'll make some soup from my new vegetarian cookbook from my older sister (there's a recipe for french onion soup that looks really good and everything is low fat or fat free so it works well for me!). I've also been doing a good job so far watching my Netflix movies and sending them back. Yesterday I watched The Five People You Meet in Heaven (I was also given the book for Christmas from Lexie's mom Alice) which I really liked and today I watched The Da Vinci Code which I didn't like as much as the book but I'm glad I saw it.
Okay, that's it for today. Here are the pictures of today's and yesterday's baked goods:
4th Day of Christmas: Meringue Cookies! I made 4 kinds (all out of the same batch) - vanilla, chocolate chip, peppermint, and peppermint chocolate chip. They didn't turn out exactly how I like them but my family all likes them so that's what matters!
5th Day of Christmas: Cinnamon Raisin Biscuits - really yummy and so easy (made with bisquick)!
Please continue to keep Tara, Kelly, Heather, Dylan, Donovan and his family, Sarah, and Malisa in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a great weekend so far!
Saturday, December 30, 2006 1:56 PM EST Prayer Request: My most awesome friend Tara is in the hospital right now with horrible abdominal pain and severe vomitting. She had an awful experience at the ER the other night and was sent home without anything being done so she really needs good thoughts that they'll figure things out this time and she'll be treated appropriately! So if you could keep her in your thoughts, prayers, send good energy, whatever you do and take a minute to go sign her guestbook I know it would help her so much.
Thursday, December 28, 2006 11:59 PM EST
Even after all the promises you've broken to yourself
All will be well
You can ask me how but only time will tell"
--The Gabe Dixon Band
Hi Everyone,
Well, I have a bit to update about from my nice appointment with Dr. H (PCP) this
After the appointment I scooted over to pick up my Domperidone refill at the compounding pharmacy and then stopped at Wholefoods Market (always a fun time) where I got some good stuff including a soy "cheeze" pizza that my mom and I had for dinner - quite tasty - and some goat cheese - also quite tasty but I don't think I can handle much at a time because it's pretty high in fat. I also stopped at the regular grocery store to get some things I needed for cookie baking tonight and I found some light margerine which will (hopefully) work well for baking and help me adapt my recipes with a combination of that and applesauce for the shortening. I came home and spent a few hours baking two kinds of cookies - one for the second day of Christmas (yesterday) and one for the third day (today). And here are the pictures of them:
Second Day of Christmas Cookies: Tiny Tim Cookies (like fruit cake cookies - a family recipe and tradition)
Third Day of Christmas Cookies: Oatmeal (with and without raisins)
That was pretty much my whole day. I was out at Dr. H's and running the other errands for about 6 hours so it was quite a long day out and I plan to really sleep in tomorrow...I just hope no one tries to call me (I think my phone is going on vibrate or silent tonight). I'm heading to bed now, trying to force myself to just put my computer away, maybe pop in a Friends DVD, and just go to sleep instead of getting distracted with other things. Tomorrow I do have to go in to work quickly to pick up the mail, sort through it, do a deposit if there are any checks to be deposited (needs to be done before the first of the year), and take down the Christmas tree. Should take me a few hours to get all that done depending on how difficult it is to take the tree apart. But I can go whenever I want to as long as I make it to the bank before it closes so I'll probably go in in the late afternoon. And I have the rest of the weekend to rest and sleep and I hope I'll regain some of the lost sleep from the past few weeks. I really really want to do everything I can to avoid a crash this winter - I'm scared at the thought of having something happen this year like what happened last year so I'm trying my best to keep myself relatively stable! So it's off to bed with me.
Please continue to keep Kelly, Heather, Dylan, Donovan and his family, Sarah, Malisa, and my little buddy Lexie in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a great week so far!
Wednesday, December 27, 2006 11:59 AM EST
But here and now this is our time
And I may never find the meaning of life
But for this moment I am fine"
--Rob Thomas
Hi Everyone,
Nothing much to report today. I've been having an awful time lately getting to sleep, probably mostly because I just can't bring myself to try to fall asleep until I'm completely exhausted. So I've been up until 2:30pm, 3:00pm, 3:30pm or even later pretty much every night for the past week at least. Last night was one of the worst (if not the worst) that I've done with it - I was up until about 5am before I finally got to sleep. I was intending to sleep in as late as I possibly could to try to make up for this and other sleep loss but then I was woken up around 11am by a phone call - nothing extremely important, just about my hydration shipment. After that I got up to go to the bathroom and ended up not going back to bed. Six hours of sleep for someone who is healthy is usually not sufficient and for me it's really bad. I just don't want to keep letting this go and have it turn into a crash like last year so I'm doing my best to get to bed earlier.
I didn't do a whole lot today. Stayed in my PJs for most of the day in bed. I took a nap for a few hours this afternoon which helped a little bit and I probably could have slept for a few more hours but I had things to do so I got up then. I cleaned the bathroom (I'm taking over the house cleaning to earn some extra money - we currently have someone coming in every other week to clean so I'll just take over for her and do some extra things as they come up), had some dinner, took a bath, and now I'm heading to bed. No baking done today
so I guess on the second day of Christmas I didn't give anyone anything (the first day of Christmas was chocolate and peanut butter chip cookies). I think the weird sleeping got in the way of any good baking opportunities. Tomorrow I do plan to bake so maybe I'll do today's baking tomorrow. Tomorrow I also have a late-morning appointment with Dr. H (PCP) so I'll be up relatively early (have to be up by about 9:30am to leave around 10am) and have the appointment and stop to do some errands on the way home. The rest of the day is empty which is really nice. I still have yet to hear anything about the Primaxin (IV antibiotic) and I need to call Dr. Bock's office to make sure the script got faxed off so that things are at least moving in the right diretion.Okay, I'm really tired and hoping that getting so little sleep last night and during the day today will make it easier for me to get to sleep now. Stranger things have happened! Please continue to keep ^^Caitlin^^ and her family, Kelly, Heather, Dylan, Donovan and his family, Sarah, and Malisa in your thoughts everyone else having a rough time. Please also keep some extra good thoughts for Lexie, my little buddy from church, as she just had chemo today and needs to feel okay for an annual shopping trip with her family and friends. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here.
Tuesday, December 26, 2006 11:59 PM EST
perhaps it is because he hears a different drummer.
Let him step to the music which he hears, however measured or far away."
--Henry David Thoreau
Hi Everyone,
Okay, back to Christmas day (can't believe it was just yesterday!). We got up earlier than I thought we would - Margaret (my sister) came knocking on my door around 9am and woke me up which was okay, although I was up until about 2:30am finishing up my gift wrapping and I was quite tired. We opened our stockings and my parents got up soon after that and we spent about 2 hours opening our presents. I got some pretty cool gifts including a really neat mug my younger sister made for me (not one to be used for drinking because it has a funky shape), a great vegetarian cookbook from my older sister, a waffle iron, some great DVDs (The Dark Crystal and The Princess Bride from my brother, A Prairie Home Companion from my parents, and a Trans-Siberian Orchestra DVD from my dad), a penguin book with tons of photographs, a penguin oven mitt, a really cool penguin picture from National Geographic that my younger sister matted so I can hang it up, and a bunch of other great things. It was a nice morning. Then we made breakfast - Panettone french toast, scrambled eggs, sausage, and bacon but I had an english muffin, a tiny bit of eggs, and a sausage. I made the mistake of having a half a piece of the french toast and ended up in quite a bit of pain from it. My older sister called during breakfast and we all got to talk to her, then I watched Elf with my younger sister, rested, and got dressed and ready to go to my brother's girlfriend's house for dinner. That was nice and the food was really good. And here are some pictures from Christmas (I didn't take as many as I usually do):
Our tree, as if it needed an explanation.
Penguin gifts - penguin oven mitt, little penguin stuffed animal, and matted penguin picture.
My brother, Patrick, and a stuffed snowman from my mom.
Rubber ducky from my brother
The cool mug my sister made for me. And it's filled with butterscotch candies - even better!
A picture of the stained glass in the chapel at Charlton hospital - my mom spent a bit of time here when I was in the hospital back in 2002 for my gallbladder surgery and she printed it out and gave it to me. She had thought about doing that with one of my pictures from Notre Dame Basilica in Montreal but decided that the Charlton chapel stained glass is what's meaningful to her so she opted for this one (long explanation but beautiful picture).
My dad wearing the scarf I made for him.
My sister, Margaret (she hates having her picture taken so this was a rare posed picture...not much of a smile but otherwise it's pretty good).
My mom - not a great picture but the best one I took of her.
And me!
And the picture that's now up at the top of the page was given to me by my dad in his card for me (which he made using a great photograph of an early canoe ride in Maine). I really like the picture and figured it was high time I changed the main picture on here! Today I slept in which was very nice. I haven't been getting to sleep that early lately so sleeping in is definitely nice. I took it easy for most of the day and then went out to dinner with my brother and his girlfriend and then to see Happy Feet with them and my sister and her friend. The movie was good, not exactly what I was expecting but I liked it. I mean, dancing penguins and Robin Williams - who could ask for more? And today was the first day the 12 days of Christmas (from what I've read, the 12 days of Christmas start on Christmas night so I think that would make today the first official day but I'm not totally sure) so I started my 12 days of Christmas baking! Tonight I didn't make cookies that are specifically Christmas cookies but I made chocolate and peanut butter chip cookies and I made them with only half the butter called for and used applesauce for the other half. They turned out pretty good if I do say so myself. Next time I'm going to cut the butter even more. Here are the cookies:
Okay, that's it for me for this update. I'll try to get back to a semi-regular updating schedule and I do feel like I'll manage it soon. I hope you all had a wonderful Christmas! Please continue to keep ^^Caitlin^^ and her family, Kelly, Heather, Dylan, Donovan and his family, Sarah, and Malisa in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here.
Monday, December 25, 2006 11:59 AM EST
~Norman Vincent Peale
Hi Everyone,
I'm not doing a full update tonight since it's very late (technically not Christmas anymore...at least not in my time zone - it's about 1:30am here but there are other US time zones where it's still Christmas so we'll pretend I'm there!) and I'm very tired and looking forward to getting to sleep in tomorrow! But I wanted to at least put up a brief update saying that I had a great Christmas and to wish you all a very merry Christmas! I'll have pictures and everything else to post tomorrow. I have also decided that I will be extending my Christmas celebration to include the twelve days of Christmas from now until January 6th (Three Kings Day, my grandmother's birthday (she would be 74), and also known as the beginning of Epiphany apparently). There won't be a ton of celebrating, but I'm going to do all the Christmas baking I intended to do BEFORE Christmas and hope to bake something different on each of the 12 days. So let the baking and celebrating continue!
Friday, December 22, 2006 10:43 AM EST
Something is not the same
I'm through with playing by the rules
Of someone else's game
Too late for second-guessing
Too late to go back to sleep
It's time to trust my instincts
Close my eyes: and leap!"
--Elphaba, Wicked
Hi Everyone,
I wasn't really planning on doing an update this morning but I have a few specific prayer requests and figured I'd do at least a mini update at the same time. First of all, the prayer requests. When I was figuring out my stomach stuff last winter and spring, I joined an online group for people with gastroparesis and I met some wonderful people there. One of them, Mary, has become something like a second mom to me - supporting me, checking in to see how I'm doing and always wanting updates so she doesn't worry, and being so understanding and helpful with all her GP knowledge. She is in the hospital with various problems and really needs some prayers and good thoughts and energy to get her feeling better and maybe home in time for Christmas! And Heather has been in the hospital for a long time and they are still trying to get her stabilized enough to be transferred to the regular floor or, hopefully, go home soon. Both she and her sister Aly (who was a Wheelock student (my college) for a while so I feel a special bond with her) are struggling to deal with this hospitalization and any prayers, thoughts, or energy you can send to them both for as good a Christmas as possible would be great. They are both so wonderful and it is so hard to be or have loved ones in the hospital around the holidays so let's pray for her to get well enough to go home! And this isn't really necessarily a prayer request, but my little buddy Lexie and her family could use some good holiday thoughts that Lexie (and everyone) stay feeling as well as possible through the weekend. And I also just wanted to post her CB page address since her page is new (I helped her set it up about a month ago) and got permission to post the link - so go over and give them all some good holiday cheer if you get a chance! Lexie and her sister Emily are both such cool kids and wise beyond their years and they are both very dear to my heart.
Okay, now for a little update about me. I'm hanging in there. I had a wonderful visit with my friend Heather from Sunday until Wednesday. Her birthday was Sunday so I was there for the little birthday celebration and then we spent the next three days in our pajamas relaxing/resting/vegging out in the living room watching TV, talking on AIM (yes, we were about 5 feet away from each other and still IMing each other), talking in general, and just having a good time hanging out. When you're sick you often feel your socialization is greatly affected so it's even more meaningful to be able to spend this time hanging out together. Other than that, I haven't done a whole lot since my last update. I had church on Sunday before I left for Heather's and then yesterday (Thursday) I went out running errands and such which was very tiring but I realized there were a few last minute Christmas presents (or components of Christmas presents) that I needed to get. I didn't find everything but the things I didn't find are things that weren't that important to find so it's fine and I'm now done with my Christmas shopping! Now I just have to do the wrapping which I really love doing so that will be fun (I'll probably do that mostly on Sunday).
Health-wise things aren't great but nothing too horrible. My stomach has been pretty bad since the problems on my last morning at my aunt and uncle's (last Friday - a week ago now). So I'm not eating very much and what I am eating is often making me feel sicker than usual but I'm trying to take it in stride and get in what I can. I'm not nearly as bad as I was almost a year ago so I'm so thankful for that - progress is so good and it's a lot easier to see the progress if you compare things from so far back as January! (I can't believe it's almost January again!) I've been having a lot more headaches lately which are probably related to the eating problems (hypoglycemic headaches) as well as having run out of Neurontin which I take to prevent bad headaches. I'm trying to be better about sipping at juice periodically to try to keep my blood sugar as stable as possible but sometimes it's harder than others, so I just got a big box of juice boxes from BJ's Wholesale yesterday while I was out so I'm stocked up! I have a feeling that I won't be partaking of a lot of the holiday treats but that's okay. Last night I did some baking - made gingerbread cookies (which I can kind of eat because they have very little fat in them and if I just eat a little one I seem to be okay) and then rice krispie treats which I made festive by making a thin sheet of them and cutting out shapes with Christmas cookie cutters. They look cute and those are also things I can handle pretty well in small quantities. When I make another batch of them, I'm going to get some little decorations or something to put on them to make them even more festive. Oh, I was talking about health stuff and got a bit off topic. So, things aren't great but they're definitely not as bad as they could be and I'm dealing with them pretty well. Because I was away I didn't get a chance to do my weekly labs until yesterday so I don't yet know how those look - I'm a little worried they'll be funky for some reason (well, they always are funky in some area lately but since I'm in kind of a crash I'm worried they'll be worse than usual). I'm also fighting off the beginnings of a cold. I really hope it doesn't turn into a full-blown cold because then I'll be fighting it off well into the New Year and that's not a very fun way to spend the holidays! We're trying to get my IV Primaxin (antibiotic) figured out and I'm keeping my fingers tightly crossed that things will go through smoothly with my mail-order Rx plan. I'm down to only having a few days of it left and we really need to try to minimize the time I'm off it. So any good thoughts and prayers you might have for that would be much appreciated!
I'm also officially done with my semester of school! I e-mailed off my last assignment on Monday afternoon while at Heather's and got an e-mail from Maya, one of my professors (who I had last spring, too) saying that my last assignment was outstanding (her word) and I got an A on that and an A- for the semester which I'm happy about. My cumulative GPA for everything over the past...6? years is 3.75 so I'm very happy with that, too. My plans for school in the spring have gotten a bit muddled up. First the two classes I was going to take online were full before I was able to register (I can't register until all the degree-seeking students at OSU have had a head start to register) so those were axed and hopes to graduate in May were dashed, but I'm not being annoyed at it (well, I am a little bit) but taking it as a sign that I need to take it easy this spring and not push too hard. Then I found out yesterday that one of my classes I was going to take at Wheelock has been cancelled becuase there were only 2 or 3 other people signed up for it. So I'm re-grouping and signed up for one class online from OSU (Oregon State, not Ohio) and considering signing up for another. I'll also be doing an independent study in linguistics (specifically in infant and child language acquisition) at Wheelock with Maya (my prof. from this and last semesters) which will probably be challenging and then just a one-weekend class in puppetry (sounds like fun!) at Wheelock. So, the semester is a bit different than I thought it would be but it's shaping up to look okay. And graduating in May isn't possible now but I can graduate in August which seems do-able so I'm shooting for that now (I don't even know if I'd mentioned that I was hoping to graduate in May, but I guess it doesn't matter now)! I just hope the semester goes smoothly and that I'm able to take the one remaining requirement (science) with the online class in the spring quarter at OSU.
Now for a few pictures. I put up my little tree in my room last night but didn't really get any other decorations up because I was worn out (and proceeded to bake for an hour - go figure) but I'm hoping to at least get a few other things up like my little stockings that I hang around my room and possibly some more lights around the room. Here's a picture of my tree (I tried taking some without the flash to get the effect of the lights but they didn't come out well):
And I have a few pictures from my trip to CT and NY last week to see my aunt and uncle and go to Dr. Bock:
Their amazing Christmas tree. It's fake and has the lights attached to it which makes it look all the prettier (although no piney smell). This is taken from the couch in the living room where I pretty much hung out while there.
The sunset as I was driving back from Dr. Bock's last Thursday afternoon.
And for the fun of it, my little set up for infusing my antibiotic in my car. I finally figured out a good place to hang the bag from so it was a lot easier than the other places I tried hanging it from!
This wasn't from that trip to CT and NY, I took this picture this morning but thought I'd post it - still in bed, enjoying my tree and watching The Santa Clause.
So, that's it for me today. My plans for the weekend aren't too hectic - working today, working from 10-12 tomorrow morning then my aunt and uncle come for the day (yay! It's been so long since they've been here - usually we go there), Sunday I don't have anything until the evening Christmas Eve services but I'm basically going to be at church from 3:30 until 8pm (3:30pm for choir rehearsal, then singing with choir at the 5pm service, and singing a solo (with my brother) at the 7pm service) so that will be a long evening but I always love the Christmas Eve services so I'm happy to be at church that long on Christmas Eve. And I have some presents for church friends I need to be sure to wrap up and bring with me! I'll be singing "Straw Against the Chill" by Bob Franke which is the song playing on here now. And I'll probably spend the rest of Sunday (before chruch) baking cookies and other good things. Perhaps cranberry bread will be on the menu for Christmas morning. I'm thinking I may get back to more regular updates now but I'm not totally sure. As much as I love writing everyday, after a while I think it just gets too monotonous and breaks become necessary. But start looking for my nightly (or perhaps afternoonly since nights usually are not my best time) updates soon! Please continue to keep ^^Caitlin^^ and her family, Kelly, Heather, Dylan, Donovan and his family, Sarah, and Malisa in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all doing well and enjoying the holidays, whether you celebrate Christmas, Hanukkah, Kwanzaa, Solstice, or something else!
Saturday, December 16, 2006 4:55 PM EST
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you
--Glinda, Wicked
Hi Everyone,
I'm sorry for taking such a hiatus from my regular updates...or from any updates. I think I can partly blame it on being able to sleep better - that is, being able to get to sleep better - which usually means that I'm falling asleep while doing my night infusion of Primaxin (antibiotic) and just can't manage to stay awake long enough to write regular updates. And I've felt that I needed a break, and that when I came back from taking a break I needed to write something more than just a mundane update about what I did that day. I think my updates will continue to be a bit erratic for at least the next week or so (maybe less) but I will get back to regular updates soon, I promise.
This past week since my last update has been quite busy. My older theater class had its production of The Wind in the Willows last Saturday night and Sunday afternoon (pictures will follow, although I don't have that many) so that was pretty exhausting. Then I had my last class of the semester at school on Monday and I was already not feeling great - really worn out from the tiring week leading up to that (with theater rehearsals on Sunday, Tuesday, and Thursday in addition to all my usual stuff). Tuesday afternoon was the production of Hairum Scarum by my younger theater class and they did a great job. Both the classes did a great job, I'm so proud of them and it makes all the hard work worth it. It's just too bad that it's over so quickly! And of course choir rehearsal on Tuesday night after that with some errands thrown in between. Wednesday I worked and then made the drive to my aunt and uncle's house in CT. My appointment with Dr. Bock this week fell on a day when my dad would be out of town on a business trip and my mom works on Thursdays so I made the trip on my own but it basically turned into a 3-day trip to spread out the driving and not wear myself out too much. So I stayed with my aunt and uncle (who conveniently live about halfway to Dr. Bock's office) on Wednesday night, made the drive to Dr. Bock's on Thursday afternoon for my appointment (more details on that will follow), and stayed at my aunt and uncle's again on Thursday night and came home on Friday (yesterday) to work at 1pm. Yeah, a lot of driving, a long few days, a very tired Annie but I managed it and now I'm trying to take it easy more or less. Last night I baked cookies and took it easy and today I'm working and then going to do some more baking (trying to get a box of cookies ready to ship to my sister in time for Christmas) and take it easy again, maybe watch a Christmas movie or something.
Okay, so backtracking to my appointment with Dr. Bock on Thursday. It was an okay appointment. I think when I'm there by myself I don't tend to talk quite as much as when my dad's there, too, so a few of the things I wanted to discuss didn't get discussed but the important topic was what to do about the IV Primaxin. It's been three months and we knew chances were my primary insurance company wasn't going to agree to extend the coverage of it without Dr. Bock writing things for them and really trying to push it, which he's not comfortable doing because, with the Lyme politics the way they are, he could wind up getting himself in trouble if he's too pushy. BUT, we both agreed that the best thing would be for me to continue with the Primaxin as long as it's helping and we don't want to cut it off prematurely because a) I could lose the slow progress I've made over the last 3 months, b) I still have a long way to go before I'm well enough to stop antibiotics and c) I could worsen beyond where I was before starting the antibiotics and continue to get worse. So we want to do whatever we can to try to get the antibiotics. Sure enough, I got a call yesterday afternoon from him saying that insurance is requiring a letter of medical necessity and his notes to agree to extend the Primaxin coverage and he's just not comfortable doing that after I've already gotten 3 months. So on to plan b - trying to get the antibiotics through my mail order prescription plan and then get everything else from the infusion company I get my hydration from. They faxed over the prescription for the Primaxin last night (I didn't know they did that until my dad called a little while ago and told me it was there) and I'll send that in on Monday and keep my fingers and toes and eyes and everything else crossed that I'll be able to get it that way. And that it won't take too long because I really don't want to have a gap in treatment. Other than that, nothing is being changed. We're keeping an eye on my liver numbers because they were high this week and one of them was high a few weeks ago, too. So I'm starting on milk thistle to help my liver. And my white cells are very good right now (6.2) so we're happy about that, but they seem to jump all around so there's no telling what they'll be next week! We're also a bit confused about my continued, fairly rapid weight gain even without eating a "normal" amount of calories on an average day so we're keeping an eye on that and hopefully it will stop and go back to my normal weight soon!
Now, on a slightly different subject (well, it's totally different but related because it has to do with the trip to Dr. Bock) - my car. It's nothing bad - Kermit (that's my name for it, other names include "The Green Hornet" (my boss's name for it) and "The Green Amphibious Banshee" because it squeels when it starts up and looks like a frog - also the reason for my name of Kermit) is still running fine. I opted to take my car rather than my dad's car on the trip to Dr. Bock by way of my aunt and uncle's because it was about 75 miles from hitting 100,000 miles and I really wanted to be the one to drive it when it hit that mark and take pictures and all that. Maybe it seems silly, but when I bought the car just over 4 years ago I wasn't sure if it would last to 100,000 miles or at least if it would last much beyond that but it's still running fine! So, on the Mass Pike on Wednesday night, Kermit hit the 100,000 mile mark and I got pictures and a little video with my camera of it turning over (I was still driving safely, I assure you - my steering wheel has a little place where I could put the camera and take pictures while driving with the other hand and not having to take my eyes off the road for more than a second or two at a time).
So there's the memorable occasion all captured on film (well, not film, on digital...stuff) and Kermit is still running strong and doesn't show signs of kicking the bucket any time soon!
And now for some pictures of my theater classes on their performance days:
My Wind in the Willows kids hanging out before the Sunday afternoon performance.
From top to bottom, left to right: Toad, Squirrel/Weasel, Mole, Rat, Rabbit/Weasel, Badger, Housekeeper, Nancy/Weasel, Mouse/Weasel, Raccoon. They all did such a good job!
Me and the kids backstage (well, in the kitchen which serves as our extended backstage space) doing our little energy circle before the show to get the kids relaxed and focused.
And my younger class before their show on Tuesday afternoon.
From top to bottom, left to right: Cinderella, Hilda (hairdresser), Olivia (hair salon owner), Goldilocks, Briar Rose, Alice (from Alice in Wonderland), Rapunzel
The younger kids' play, Hairum Scarum, is about a hair salon where fairy tale characters are their clients and they all come in needing/wanting their hair changed for one reason or another. Goldilocks needs a disguise to evade the three bears' warrant for her arrest (she gets a red, stright wig with bangs), Rapunzel wants her hair chopped off because she's sick of people climbing up it (she gets a short, blonde wig), Cinderella needs a good hairstyle for the prince coming over later (she gets a brown wig with curls), and Briar Rose needs an updated hairstyle after having been asleep for a hundred years (she gets a purple wig). And just for fun, I did a little experimenting with the wigs myself:
Goldilocks' wig
Briar Rose's wig
Rapunzel's wig (yes, I look kind of freaky there both because of the hair and because of my expression - one of my friends and I agree that it looks like Stepford Wives freaky)
So, that's more or less what's going on in my life lately. I've been busy with way too much stuff and I'm feeling the effects of it but I'm handling it all pretty well (or at least my body seems to be holding up). I am looking forward to things slowing down soon, though, and I'll have a nice week off between Christmas and New Year's when I can pretty much just rest and recover from everything over the past few months. Tomorrow I'm going away for a few days to visit my friend in CT (yes, somehow I seem to be spending a lot of time in CT) for her birthday and just to hang out which should be really nice and fun and relaxing. And then I come back on Wednesday, have Thursday off, work Friday and for a few hours on Saturday morning, my aunt and uncle are coming for the day on Saturday, and then it's on to the Christmas festivities! Crazy how Christmas has snuck up like that. I have a little more gift buying to do but I should be able to finish it up with a quick errand after I finish work in a little while. I haven't really done any purposeful shopping (I mean, going specifically hunting for presents for people) but I've managed to find good things and I always prefer for the gifts to find me rather than the other way around. Of course I still have to wrap everything and get some of the things sent off to my sister and brother-in-law but it shouldn't be too difficult to do that before I leave tomorrow (well, get them packaged up at least, I'll have to leave the actual shipping for my parents to take care of while I'm away).
Health-wise things are okay. My headaches have calmed down now that my theater classes are over and my trips up to Boston for class are finished - I think the combination of both those things ending at the same time was just too much stress and my body was having trouble. My stomach crashed a bit yesterday morning after eating too much for breakfast and I'm being good about giving it a break from "real" food at least for a few days. So I'm sticking to liquidy/mushy stuff. I tried some more substantial soup last night and just didn't want to eat it and attempted an apple this morning which was a very bad idea. I was having bad abdominal pain after a few bites of the apple and packed up my heating pad to bring here to work with me which was very helpful and I'll certainly remember how easy it is to just sit here at the desk with it on my belly for future bad stomach days. As I said at the beginning of this update, I'm seeing improvement in my sleep - at least in the ease of getting to and staying asleep if not in the quality of sleep. My energy seems to be pretty good considering all I've been doing and the fact that I'm not crashing horribly (*knock on wood*). Overall, things seem to be pretty good. Have to keep an eye on my liver numbers and white cell count, make sure I'm taking all my supplements to balance everything, and take it easy. Resting is hard to schedule in around everything else but I'm certainly doing my best to rest when I'm home. When I'm not at work or school or church or running small errands I'm usually in my pajamas (I just got three really cozy new sets of PJs since I don't have as many as usual with some getting worn out last year) in bed on my laptop or watching TV or more often both at the same time. And I've been knitting quite a bit which is nice - helps me pay attention to reading or TV better when I have my hands busy doing things.
Well, I believe I've written quite a novel here! I guess that's what happens when I don't update regularly. I'll try to get back towards doing nightly (or maybe morning or afternoon since I fall asleep in the evening) updates but it may be a bit erratic until after Christmas. Please continue to keep ^^Caitlin^^ and her family, Kelly, Heather, Dylan, Sarah, Malisa and Donovan and his family in your thoughts everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good weekend!
Saturday, December 16, 2006 12:25 PM EST
I'm still here, hanging in, trying to wrap things up before the holidays. I'll do a real update soon, maybe later today depending on how busy it is at work.
Saturday, December 9, 2006 10:41 PM EST
--Albert Camus
Hi Everyone,
I'm sorry for taking so long to update. I've been busy so writing my usual daily updates has fallen down quite a bit on my priority list. And I think I've needed a break from writing my pretty mundane nightly updates about what I did that day and other fairly trivial things. Caitlin's passing has affected me more than I realized. It's hit everyone in DYNA pretty hard and we're all trying to deal with it the best we can. We're talking about her, remembering good memories we had of her, and keeping her spirit alive within us all. Death has a way of making one stop and think and look at the world more carefully, maybe not seeing it more clearly but not just rushing through life and letting everything become a blur. And someone young passing away seems to make one stop even more. I'm sure everyone has lost a loved one, usually it's grandparents or older family friends. Not that losing someone who is older makes it easier...well, maybe it does in some ways. They have had more years, they have had careers, they may have had families, and their passing can be better understood as part of the circle of life. But when a young person dies it feels like a huge injustice, completely unfair to them and to those who love them, they didn't get to have that kind of long life that they should have had. I am so thankful that I was able to go to Caitlin's memorial service last Friday. It made her passing seem more real and hearing people talk about her, seeing pictures of her, meeting her family helped me deal with things a little better. Something the minister said is coming to mind as I write this. He said that some people take 20 years of living and draw it out into 70 years, and some people take 70 years of living and squeeze it into 20. Caitlin may not have had the long life that she should have, but she affected so many people and changed so many lives. She may not be here physically but she lives on in our hearts and I know so many of us have been inspired by how Caitlin lived her life, her neverending faith, her happy, positive attitude, and her amazingly strong spirit.
And there is something else that her passing has made me stop and think about - friendship. Specifically how the idea of what friendship is changes when dealing with chronic illness. The internet becomes a meeting ground, we find people who understand what we are going through and offer support and encouragement when we aren't doing well. And sometimes our best friends are people we have never met in person, or people we see very infrequently, but we talk to them online through e-mails and instant messages and blogs or Caringbridge pages. The friends we had in school or other activities before we got sick seem to fade away, or rather to move forward and it feels like they're leaving us behind. We may stay in touch with some of them, go out and socialize from time to time when our energy allows, talk to them online or on the phone every once in a while, but for the most part they are not there. They don't know what is going on with us, what new treatments we're on, when we crash, how we struggle. And those rare few who do stay in our lives to the extent that they know what's going on and try to understand our struggles can't really understand and it is inevitible that they will eventually go off to college, get married, get "real" jobs, and we will see less and less of them, which of course isn't their fault but it is still sad for us who feel left behind. And when that happens, our online friends who are struggling with similar difficulties in their lives are there and we feel a little less alone, a little less isolated. We can vent about our frustrations and the ignorance others show to us sometimes. We can have mundane conversations like any friends have. We can be silly and goofy and loopy, especially when talking in the wee hours of the morning when sleep just won't come. These friends from across the country, across the world, or just across town become lifelines. We become integral parts of each other's lives. And it is amazing how much we can understand one another without ever meeting, and in some cases without any real direct contact except through blogs and Caringbridge pages. We lift each other up when we are down, or commisserate during really difficult times. These friendships are so precious, in some ways even more precious than ones we've had since early childhood with friends we grew up with, because these friendships are based upon a common understanding. Although we may not always talk about our illnesses and struggles with each other, there is a kind of unspoken understanding there that flows through the relationships. We shape and change one another's lives and provide a level of understanding that people who don't deal with the same daily struggles can't truly understand, no matter how hard they may try. All of this makes it even more difficult to process it when one of these friends leaves us because we know the kinds of struggles they've been through and how hard they've fought. But maybe it also makes it easier for the same reason - we know how much they have struggled and suffered and we can take comfort in the belief that they are now someplace without pain, without suffering, where they can fly free. And they will forever live on through us.
Needless to say, with all this going on along with having a very busy few weeks I'm not in the best shape but I'm hanging in and not crashing too badly right now. The Lyme rally in New York on the 30th went well and was well attended with about 350 people showing up to protest the new IDSA (Infectious Diseases Society of America) Lyme treatment guidelines which are just ridiculously restrictive and cross a line from treatment guidelines into the land of dictating how doctors can and cannot treat their patients. We got some media coverage and the cars driving by definitely took notice. It was really cool having cars honking at us in agreement! But it was a very long day coming after another very long day of an early appointment with Dr. H (PCP) and then driving to Connecticut that evening. The day after the rally I headed off to my DYNA friend Heather's house and that night we went to Caitlin's memorial service which was hard but being there with a friend helped. I stayed over with Heather that night and then came home on Saturday morning and worked that afternoon. This week has been really busy - I sang at my mom's church and then had 3 hours of extra theater classes in the afternoon followed by another few hours of trying to get things organized and somewhat prepared for their play, then school on Monday, more theater classes on Tuesday followed by choir rehearsal, a crash day on Wednesday when I stayed in my PJs and barely left my bed, one final dress rehearsal with my older theater class on Thursday afternoon with a few long hours beforehand spent finishing up props and costumes, and Friday was another crash day. I have discovered just how great it is that so many TV networks have started making TV shows available to watch online. I spent quite a bit of Friday watching episodes of Heroes which I hadn't really managed to watch when the episodes are on TV and I think I'm hooked. It's like a cheap TIVO! The only downside is having to watch it on a computer screen instead of a TV screen but in some ways that makes it better - it's nice watching things that are right there next to me instead of across the room and I can take my computer with me all around the house. Today (Saturday) was a very long day for me. I worked from 1-5pm, grabbed a sandwich for dinner around the corner from work, and got ready for the first performance of The Wind in the Willows by my older theater class. I have to say they surprised me with how well they did - very few times when I had to prompt lines, only a few mishaps (including Toad slipping on a shawl while running off stage after breaking out of prison), and no huge mess-ups. The biggest problem was in the last scene when the girl who plays Nancy has to make a really fast change from being a weasel to being Nancy (the jailer's daughter who helps Toad break out of prison) and she was trying to get her weasel nose makeup off and wasn't ready for her entrance with the housekeeper but the kids on stage covered very well - a good reason for playing all those improvisational games! I'm very proud of the kids and all the hard work they put into the show. And the parents were all so happy with the way it turned out and the kids all had a great time and asking about the next play (not sure what we'll be doing next yet, but I'm thinking about it and ordering some scripts to find a good one).
Health-wise things aren't wonderful but I'm not crashing as hard as I could be considering what things have been like for the past month. My biggest issue right now is really bad "air hunger" which is really exhausting and draining. It's hard to explain what it's like but it basically makes me feel like I'm not getting enough air so I try to take deeper breaths but I can't take deep breaths most of the time. It's like there are two sections of a deep breath - the initial breath and then the ending breath which is the deep part. I get the first part of the breath but when the air hunger is bad I can't get the second part of the breath, if that makes any sense. It drives me crazy and just leaves me feeling exhausted and frustrated. I'll talk to Dr. Bock about this when I see him next week. Other than that, mostly the usual stuff - headaches, fatigue, nausea, joint stiffness (which often includes pain from sitting in one position too long), etc. I'm sleeping a bit better than I was a few months ago so I think that's one symptom that has improved with the Primaxin (IV antibiotic). My current order for the Primaxin is up in about a week, I got my last shipment of supplies on Wednesday, so now comes the anxiety and nervousness about what will happen next. In a perfect world Dr. Bock would be able to just call in an extension on the order and keep doing it as long as I'm improving and not having any serious side effects. Okay, so maybe in a perfect world I, and all my friends, wouldn't be sick at all, but I guess I'm thinking of a realistic perfect world (is that an oxymoron?). Anyway, I'll be seeing Dr. Bock (Lyme doctor) on Thursday and we'll see what happens then. I think he's going to try to extend the Primaxin and see what my insurance does but in the mean time, I'm going to see about getting it through my other infusion company. I guess I have to wait and see what will happen...
Okay, this has turned into a bit of a novel. I've been writing it over the last two days and it's covering the span of more than a week so I guess it's no surprise that it's really long. I will try to get back to more of a regular updating schedule soon but it may not be back to my regular nightly updates for a little while. Please continue to keep ^^Caitlin^^ and her family, Kelly, Heather, Dylan, Sarah, and Malisa in your thoughts everyone else having a rough time. I ask for special thoughts and prayers for Donovan and his family as they received some devastating news. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good weekend.
Sunday, December 3, 2006 11:36 PM EST
or we can take charge and rule our lives from within."
--Earl Nightingale
Hi Everyone,
This is going to be another short update because, as I was getting set to write something I started getting some bad abdominal pain and had to lie down until it eased up and now I'm just so exhausted that I don't have much energy to write much. I have a feeling I won't get around to doing a real update (and re-cap of the past...5 days) until Wednesday, my "crash day". Yes, I've scheduled my crashes (right now) - Wednesday and Friday this week are "crash days" and I hope to catch up some stuff and most importantly to REST REST REST! So until then, I may not update much if at all. And when I do update, I'll probably have quite a long update with a re-cap starting from last Wednesday so check back soon for that! For now, I'll just say that I'm way too busy, drained both physically and emotionally, and just looking forward to next Wednesday when school and my theater classes will be over and I can take some time to seriously rest. Please continue to keep ^^Caitlin^^ and her family, Kelly, Heather, Dylan, Sarah, and Malisa in your thoughts as well as my little buddy Lexie who is in the hospital with the chicken pox (doesn't sound like much fun) and everyone else having a rough time. I ask for special thoughts and prayers for Donovan and his family as they received some devastating news last week. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week.
Saturday, December 2, 2006 11:33 PM EST
If you cannot refuse to fall down,
refuse to stay down.
If you cannot refuse to stay down,
lift your heart toward heaven,
and like a hungry beggar,
ask that it be filled,
and it will be filled.
You may be pushed down.
You may be kept from rising.
But no one can keep you from lifting you,
from lifting your heart
toward heaven -
only you.
It is in the middle of misery
that so much becomes clear.
The one who says nothing good
came of this,
is not yet listening.
--Clarissa Pinkola Estes
Hi Everyone,
I really can't handle doing an update tonight, especially one to re-cap the last 4 days, so that will have to wait. I'm falling asleep here and I am anticipating a rather bad crash this week so I may need to take a little break from updating to conserve my energy for the things I absolutely have to do. I'll update when I can and probably do a slow(ish) recap of my trip to CT. Please continue to keep ^^Caitlin^^ and her family, Kelly, Heather, Donovan, Dylan, Sarah, and Malisa in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week.
Tuesday, November 28, 2006 11:54 PM EST
-T. S. Eliot
Hi Everyone,
Today was okay and nothing big has happened with my boss yet, but I have done what I can do for now and the ball is in her court at this point. After talking to a few people I decided to write her a letter which I did before going in (a little early) to teach my theater classes. I tried to explain the best I could so I know whatever happens I've done the best I can to make my voice heard. I gave her the letter and I'm not sure if she read it or not because it was still there at the desk when I was leaving after my theater classes (she was already gone since the gallery closes an hour before my classes end). I'll wait and see if she calls me and, if she doesn't, I'll see her on Saturday when I go in to work next and hopefully we'll be able to discuss things and both of us will have put some thought into what we want and need. Anyway, my classes went pretty well and I'm getting excited for the younger kids play which is generally more low-key and less stressful than the bigger, older kids show. I'm looking forward to the older kids show, too, but we have a ways to go before we're ready for the performances which are a week from Saturday and Sunday! Eek! After the classes I stayed for a while figuring out props and scenery details and then went off looking for some of the props I still need to get (I found a few of the things I needed but still have a few to track down or make). I didn't go to choir rehearsal because, even if I hadn't been running those prop errands, I was too wiped out to go. This evening I made some cranberry bread - we've been out of it for a few days now (or maybe it's just one day) so it was high time to make some more! And I'm going to bring some with me to give to the Lymie friends I'm staying with tomorrow and Thursday night. And I've been trying to tackle my laundry. I used to do it about once a week but I think it's been 3+ weeks since I last did a load, at least since before I went to Montreal. Now I just need to go put another load in, hook up my fluids, and head to bed. Tomorow will be an early morning for me - I have to leave by 7am to head to my appointment with Dr. H (PCP). I got this week's lab results today and my white cells are still low (a little bit lower than last week) which is discouraging since I can't blame it on a lapse in taking the shark liver oil as I've been able to do before. And just to make things interesting, one of my liver functions (my SGOT or AST) is high. I'm not sure what that means but I'll talk to Dr. H about it tomorrow and see if it's anything to be concerned about. One thing's for sure, my wacky labs with something new being high or low each week I'm certainly getting to know what each thing is measuring and what a high or low number means! But at least it's just those two things that are off, everything else is normal so I'll take it! After my appointment with Dr. H I have a few errands to run on the way home (pick up my domperidone refill, my usual stop at Whole Foods, the bank). Then I have to pack and make banana bread when I get home - I go to the trouble of setting aside two bananas to make banana bread with whenever we get a bunch of them and I keep those two in a bag to help them ripen faster but the downside of this is that if I don't have time or feel like making banana bread with them during the window of time when they're best for baking with the bananas just go to waste! And that window of prime baking opportunity will probably be over by the time I get back from CT on Saturday and of course I'll be happy to be able to bring some banana bread with me on my little trip (I'm packing a lot of food I can handle to make things easier for me and the people I'm staying with). I'll have my computer with me while I'm away (from tomorrow afternoon until Saturday early afternoon) but I'm not sure about internet access so I'm not sure if I'll be updating every night. I'll be sure to take some pictures of the Lyme Rally on Thursday and of whatever else is interesting.
Please continue to keep ^^Angel Caitlin^^ and her family, Kelly, Heather, Donovan, Dylan, Sarah, and Malisa in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week.
Monday, November 27, 2006 11:59 PM EST
--Flora Whittemore
Hi Everyone,
Today I took a "personal day" of sorts and I'm really glad I decided to do that rather than keep pushing and make it to school today. I let myself sleep in a bit before getting up and drawing my weekly labs. I spent the day resting, watching TV, doing stuff online, and this afternoon I went out to get some blood drawn for a test I can't do as part of my weekly labs and to pick up a few things. Tonight I took a nice long bath. Overall it was a pretty low-key day and that's what I really needed. I could use a few more like this but I'll take the one for now. Hopefully it will be enough to get me through the rest of the week. I've been thinking quite a bit about what to do with my work situation and with the advice of a number of people I trust I feel I have a better handle on that, I just don't know how things will end up but at least I have a better idea of what I need to express to my boss. Tomorrow I'll talk to her and I'm dreading it but I know it needs to happen and I can't put it off or it will just be more difficult. So I could use some good thoughts tomorrow afternoon that things will go smoothly or at least not make things more stressful. This excerpt from The Prophet by Kahlil Gibran says very well the way I'm viewing my job now and the need for me to leave it soon:
And if you cannot work with love but only with distaste, it is better that you should leave your work and sit at the gate of the temple and take alms of those who work with joy. For if you bake bread with indifference, you bake a bitter bread that feeds but half man's hunger. And if you grudge the crushing of the grapes, your grudge distils a poison in the wine. And if you sing though as angels, and love not the singing, you muffle man's ears to the voices of the day and the voices of the night.
Health-wise things are...okay. Some various issues but nothing horrible. Tonight I discovered that one of my back molars has a rather odd chip in it - it's like a big groove on the side of my tooth inside my mouth (as opposed to the part that faces out) and I'm not sure when it happened or what caused it. I was supposed to have my 6-month cleaning this Friday but I'm switching with my brother's appointment for the 11th since I won't be around on Friday. But I haven't changed the appointments yet so when I call to do that tomorrow I'll see if I should go in before then to get this checked out. It doesn't hurt and it doesn't seem like the rest of my tooth is crumbling away but I don't know what this is from or what else might happen to the tooth.
Well, my Primaxin just finished up so I'm going to hook up my fluids and head to bed. Please continue to keep ^^Angel Caitlin^^ and her family, Kelly, Heather, Donovan, Dylan, Sarah, and Malisa in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you all had a good Monday.
Sunday, November 26, 2006 11:35 PM EST
and it's time to step into the darkness of the unknown,
faith is knowing that one of two things shall happen:
Either you will be given something solid to stand on
or you will be taught to fly."
--Edward Teller
Hi Everyone,
The quote at the top of this entry has always been a favorite one of mine, but I have continually struggled to have faith in it. I'm a planner, I like knowing what will happen, I like stability, I don't like change and I like uncertain change even less. But I struggle to live my life with the faith that either something will catch me or I'll learn to fly when faced with uncertainty. With all that has happened in the past week and all that is coming up in the next week I feel like I am being stretched, not to see how far I can stretch but rather to see how much I will let myself be stretched before making the necessary changes to relieve the strain. I am being faced with necessary change and I don't necessarily have control over what happens, but I have control over how I handle things. I can crumble, I can get angry at the world, or I can look inside myself and try to figure out what it is I want and need and do what I can to get there. I know this isn't what my normal daily entries are like, but I can't help but get a little introspective and re-evaluate my priorities. If you're in the dark about all that has happened, go into the journal history and read yesterday's entry.
Today has been okay but I'm at a breaking point where I just have to take time to "reboot" and just have some time to rest. Church this morning was good and I got to talk to some friends who are always so supportive. I had a quick stop at home and then off to an extra rehearsal for my kids' theater class which was okay but when I'm already worn out, I tend to get even more frustrated with the kids not paying attention and not listening. That was basically my day. Health-wise today wasn't a very good day. I woke up with a bad headache that went away (or at least got better) with medicine this morning but now it's creeping back. I'm not quite sure what to think of these more frequent headaches after not having that many for quite a few months but it probably is just related to me being generally run down. I also had bad abdominal pain for a while this evening but my heating bad and lying flat has helped. After all these years, it still kind of surprises me how much stress can affect my overall health. I have decided to take tomorrow off and rest and I e-mailed one of my professors to let her know what's going on (the general idea at least, not really any details) and that I won't be in class tomorrow. Hopefully a day of downtime will help, or at least revive me enough to handle the rest of this week which will be busy and draining.
Well, I need to get to bed. My Primaxin is almost done infusing so I'll get myself ready for bed and by then it should be done. Please continue to keep Angel Caitlin and her family, Kelly, Heather, Donovan, Dylan, Sarah, and Malisa in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you all had a good weekend.
Saturday, November 25, 2006 11:32 PM EST
and I shall exist till the end of time, for my being has no end."
--Kahlil Gibran
Hi Everyone,
Today has been all in all a pretty bad, very stressful and emotional day. It started out early - I got up at about 7am so I could say goodbye to my sister before she left for the airport to go home to Oregon. It was hard saying goodbye and I miss her a lot but she'll be home again in the spring and I'm keeping my eyes open for cheap plane tickets with the possibility of going out to visit sometime this winter if something reasonable crosses my path. And then came the big stresses of the day. I don't want to go on and on about it so here's the short version - basically I have to find a new job. I went in to work at 10am and my boss got there a little while after that and was surprised I was there. She told me that I can work through the end of the holiday shop (right before Christmas) but that after that I should take 3 months off. Apparently she's annoyed about me not working consistently but it's not all one sided - she has some part in this, too. And the real kicker is her saying (as she always says when something like this happens), "I'm so accommodating and flexible for your medical needs and there is no other job you could get that would be this accommodating." She says this quite often and I'm realizing now that it's abuse in a sense - she makes me feel like I'm worthless and unable to do any other work so I should bend over backwards to make her happy and keep this job. I knew it was time for me to leave and move on, and I was expecting to do this after the spring semester (when I hope to be graduating) so the fact that I'm looking for a job isn't what's stressful and frustrating, it's that, after more than 7 years of working there, I am being shoved aside in what I feel is a very disrespectful way. It has come to the point now that I dread going to work, I don't feel comfortable being there, and talking to my boss has become very stressful. I'm not sure what's going to happen right now with things, and I don't know if I'll continue with any work at the art center (like teaching theater classes or doing stuff for art camp) or if I'll even work through the rest of the holiday shop but I know I need to talk more to my boss, feel that I am heard, and try to leave with some sense of closure. There are a lot of details I'm leaving out there but I don't want this to turn into a novel.
And then I came home, turned on my computer, did a few things online, and learned that Caitlin earned her angel wings on Tuesday. At that point I kind of fell apart. It was heartbreaking to let this information sink in and to know that I will never be able to meet her in person as I'd imagined I would someday. I can't imagine what her family is going through right now and I know they would appreciate any words of support and encouragement you could offer. I was glad to sign on to AIM and have a chance to talk to one of my best DYNA friends who was pretty good friends with Caitlin, it helped to process things with someone else. Caitlin was so amazing and strong. She has inspired me and she will always hold a special place in my heart.
After such a long and emotional day I need to get some sleep. I can tell that I am at that breaking point where I'm just so exhausted, not getting enough rest, generally not feeling well, and with every additional stress or frustration I just get closer to the edge where I'll just have a break down and just completely crash. Hopefully things won't get to that point, but I know I need to be better about setting limits and resting when I have the chance. For now I need to get to bed and get some sleep. Please continue to keep my friend from church in your thoughts as well as Angel Caitlin and her family, Kelly, Heather, Donovan, Dylan, Sarah, and Malisa in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you all had a good Saturday.
Saturday, November 25, 2006 11:57 AM EST
This morning I learned that Caitlin earned her wings on Tuesday. She was an amazing person with such strength and faith. A real inspiration to many people, including me. I wish I had gotten to meet her in person but I feel like I've known her for a long time online. Please go over to her page and leave her family a message if you have a minute. I know it's so hard to know what to say at a time like this, but I'm sure they would appreciate any words of support or comfort. Fly high, Caitlin, free from pain.
Friday, November 24, 2006 11:59 PM EST
A thousand fibers connect us with others;
and along those fibers, as sympathetic threads,
our actions run as causes, and they come back to us as effects."
--Herman Melville
Hi Everyone,
Another late night for me but today wasn't a very busy day so I'm holding up alright (although there were certainly times during the day when I was nodding off). I slept in until about 11am and had kind of a slow morning and early afternoon. The whole family went out for a mid-afternoon lunch which was nice. This evening I made peppermint meringues which turned out very tasty and I'm sure I'll be experimenting with lots of different flavorings and additions to meringues in the coming months since it's a cookie I can definitely tolerate. And they're pretty easy to make, too! Nothing much else exciting to report about today. It's sad that today was the last day of my sister's visit, she leaves tomorrow morning, but she'll be back in the spring for a friend's wedding so at least I have that to look forward to. I have a busy weekend and week coming up - working tomorrow, church and theater rehearsal on Sunday, school on Monday, theater and choir rehearsal on Tuesday, appointment with my PCP on Wednesday morning and then off to Connecticut to stay over with some wonderful friends in preperation for attending a Lyme disease rally (in response to the guidelines put out by the IDSA which basically screw us chronic Lymies and can prevent us from getting treatment) and then I'll be coming home on Friday. Yeah, pretty busy so I'd better get to bed!
Please continue to keep my friend from church in your thoughts as well as Caity, Kelly, Heather, Donovan, Dylan, Sarah, and Malisa in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all had a good week!
Thursday, November 23, 2006 11:59 PM EST
Hope without thankfulness is lacking in fine perception.
Faith without thankfulness lacks strength and fortitude.
Every virtue divorced from thankfulness is maimed and limps along the spiritual road."
--John Henry Jowett
Hi Everyone,
It's very late (almost 1am, despite what the time shows at the top of this entry) and I'm exhausted so this will be short. But I want to wish everyone a very happy Thanksgiving. I had a wonderful day with my family at my aunt and uncle's house in Connecticut. It was so nice having the whole family (minus my brother-in-law) together and it all went by very fast but was a really great day. I managed to eat a little bit of the real Thanksgiving staples - turkey, stuffing, cranberry sauce, green bean cassarole, candied yams, and a tiny bit of mashed potatoes (I never really trust mashed potatoes to be low-fat unless I've made them myself - no telling how much butter and milk or cream other people put in) and I brought fat-free gravy with me so I was able to make things as easy as possible. I didn't eat that much but it was enough and I was good about eating very slowly and stopping as soon as I started feeling full to avoid any kind of bad situation. And I had pumpkin custard and cranberry bread for dessert - both of which I made myself so I knew they were safe. I also snuck a little bit of brownie and thankfully didn't have too much trouble with it.
It has been interesting looking back at the past year and how much has happened, the rough spots I've been through and at all the things I'm thankful for. My family tops the list - I am so grateful to have such a supportive, loving, close-knit family that is always there for me when I need them and provide me with so much. And my church family has been such a blessing, I couldn't imagine a more supportive group of people to grow to know and love. And my friends - both online and in person - who are always there when I need someone to talk to and continually surprise me with their care, concern, and understanding. I am thankful that I am able to be back in school, even if it's only part-time. I am thankful for finally having a good medical team. And so many other things too numerous to list. And right now I am very thankful to have a nice cozy bed to climb into under a nice warm comforter and to have another day with all my siblings together to look forward to tomorrow.
Please continue to keep my friend from church in your thoughts as well as Caity, Kelly, Heather, Donovan, Dylan, Sarah, and Malisa in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all had a wonderful Thanksgiving (or, if you're not from/in the US - a wonderful Thursday)!
Wednesday, November 22, 2006 11:59 PM EST
--Elisabeth Kubler-Ross
Hi Everyone,
I'm writing this in the middle of the kitchen on a folding chair waiting for my triple batch of cranberry bread to finish cooking. Yes, I'm making a triple batch because it seems to disappear very quickly around here! I'll be bringing probably half of what I'm making to Thanksgiving dinner tomorrow at my aunt and uncle's house but I'm sure I'll be making more for us at home later this week. I'm really exhausted from a long day of doing too much but at least my energy was spent doing things I love and that make me feel good. This morning I woke up with a horrible headache - it seems the headache that had been steadily getting worse throughout the week decided it couldn't creep along slowly anymore. So I spent the first few hours after waking up lying curled up in bed with a rice pack over my eyes and forehead listening to Harry Potter on my mp3 player (softly). I took my migraine medicine pretty much as soon as I woke up and the headache did subside a bit but I can still feel it lingering there, threatening to jump back into full swing. Needless to say I'll be travelling with a lot of medicine tomorrow just in case something happens. After the headache started to subside I got up, had some breakfast, got dressed, and headed off to visit my wonderful friend from church who has been dealing with such horrible health problems lately (Lyme is a very strong suspicion and she will be evaluated for that next week). We had a very nice visit which ended sooner than either of us would have liked because I needed to get home to do my afternoon Primaxin infusion. I'm very thankful to have spent the early afternoon visiting with her and I hope to do that again soon. Before coming home I swung by the grocery store to pick up a few things I needed for baking this afternoon (and just in general) and then, hooked up to Roly Poly (my IV pole) I got to work in the kitchen whipping up the various tasty things I'll be bringing to Thanksgiving dinner tomorrow. I made cranberry sauce (I'll only eat homemade - can't stand the jelly stuff from a can), snickerdoodles (unfortunately not really something I can eat but I did eat a really small one tonight and it was so good), pumpkin custard, and cranberry bread and mini-muffins. I wanted to try my hand at meringue cookies but there just wasn't enough time and I didn't have enough energy. I also got to take a shower this evening so I'll be nice and clean for tomorrow. So nice to be clean! And if I have the energy in the morning, I'll probably straighten my hair which I only do for special occasions since it takes so long with my really long hair.
Health-wise I'm doing...okay. Not great, definitely really worn out from the past few weeks and feeling the effects of overdoing it, but basically dealing with the usual stuff. I'm hoping my stomach will behave itself tomorrow so I can partake in as many of the wonderful Thanksgiving foods as possible but I will definitely be taking it easy and I'll be pretty cautious. Part of the reason for making so many things to bring is because I know I'll be able to eat some of them - the cranberry bread and pumpkin custard mostly. I'm also bringing my own jar of fat free gravy in case the gravy there is homemade with tons of butter. And I think I may need to skip some of the tasty side dishes, unfortunately including the mashed potatoes if they're made with tons of butter and milk or cream. But I'm sure I'll manage alright and take a tiny taste of the things I probably shouldn't be eating.
Well, the cranberry bread is just about done so I better wrap this up and get myself to bed! Please continue to keep my friend from church in your thoughts as well as Caity, Kelly, Heather, Donovan, Dylan, Sarah, and Malisa in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all had a good week and I wish all my US friends a very happy Thanksgiving tomorrow!
Tuesday, November 21, 2006 11:33 PM EST
But not to brothers and sisters.
We know each other as we always were.
We know each other's hearts. We share private family jokes.
We remember family feuds and secrets, family griefs and joys.
We live outside the touch of time."
--Clara Ortega
Hi Everyone,
I'm far too tired to write a full update tonight but I'm happy to say that my older sister, Sarah-Kate, arrived here safe and sound this morning and it's so nice to have her here. I taught my theater classes this afternoon and they were a bit more stressful than usual (well, the older class was, the younger class was actually very good) because two of the kids were dealing with some misunderstandings and there was quite an emotional issue to address, which I did and hopefully it made a difference. But in any event, class wasn't quite as productive as it would have been without that added drama. After class I came home, visited with everyone for a while, and then we had a turkey dinner (yes, I realize that may seem weird since Thanksgiving is only 2 days away, but we had a free turkey that we needed to use and since we're not making Thanksgiving dinner ourselves, we wouldn't ordinarily have the leftovers which are one of the best parts of a turkey dinner in my opinion). I'm just exhausted from too many days without enough rest and sleep. And I've been battling a bad headache for the past few days and today it has gotten progressively worse and that takes quite a bit out of me, too. But I'm falling asleep here so I'll sign off for the night, go get ready for bed, and hopefully by then my Primaxin will be done so I can go to sleep. I'm so looking forward to sleeping in tomorrow and having a few days to rest, relax, visit with my sister, and do some holiday baking! Please continue to keep my friend from church in your thoughts as well as Caity, Kelly, Heather, Donovan, Dylan, Sarah, and Malisa in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Monday, November 20, 2006 11:59 PM EST
--Flora Whittemore
Hi Everyone,
Another long and busy day today. I feel like I've had no break or time to really rest since coming home from Montreal over a week ago. I've had one resting day since then (last Wednesday) but every other day has been unusually busy with doctor's appointments or school or theater classes or all the various other things I've had to do. I'm so looking forward to having having a bit of a break after I get through tomorrow (although of course I'll be baking a lot on Wednesday and all the Thanksgiving stuff on Thursday). I know I'm in for quite a crash when I finally have time to stop and realize just how exhausted I am but it's going to happen sooner or later so I'll just deal with it the best I can. Today I did make it to school, although a bit later than planned partly because I left late (that's what happens when you don't get out of bed and start getting ready until noon) and partly because of traffic because of construction. So it just meant I had to only infuse 500mg of Primaxin instead of the full 750mg - not great but at least I got the bigger bag in. I think the extra fluids I ran last night helped to keep me going today (and of course I had my usual hydration running during the day today) but I was so tired and out of it for most of class that I'm not sure how much really sunk in. Oh well, at least I was there. We got out of class early because we were all so tired and obviously not up to much class participation but there was more traffic leaving at that time than the usual time so I ended up pretty much getting home at the normal time, although I did stop at the grocery store for a few things. And of course when I got home I couldn't just rest as I should have, I decided to do some baking. I attempted to make a tofu "cheesecake" which is supposed to be pretty good. I haven't been able to try it yet since it has to cool off in the fridge before eating it. I'll be sure to report on it tomorrow. But now I'm ready for bed and I need to get some sleep. Tomorrow I have to run around trying to gather up as many props for my theater classes as possible and teach the two classes but I don't have choir rehearsal and my family is going to have a turkey dinner (yes, I know it's not Thanksgiving, but we got a free turkey from the grocery store for earning a certain number of turkey points over the past month or so, so we're having our own turkey dinner tomorrow night). And the most exciting thing tomorrow...my sister will be home!! She isn't quite on her first flight yet but she should be at the airport and she'll be getting into Boston around 9am and home soon after that!! I'm so looking forward to it. But I better get to bed now if I have any hope of being productive tomorrow. Please continue to keep my friend from church in your thoughts as well as Caity, Kelly, Heather, Donovan, Dylan, Sarah, and Malisa in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you all had a good Monday!
Sunday, November 19, 2006 11:59 PM EST
--Anonymous
Hi Everyone,
Well, today was an extremely long day and I'm exhausted so I'm just going to do a very brief update tonight (yeah, I know I say that often and end up writing a lot but I swear, this time I mean it!). I made it to church early for choir rehearsal, we had a great Thanksgiving service, then I visited with people for a bit and proceeded over to Alice's (Lexie's mom) house for a bit of lunch before heading up to Jamaica Plain for the ordination of our past student intern minister, Peter. The ordination was nice but made for a very long afternoon. It was a very nice ordination (the first one I've been to) and a nice blending together of our church and his home church in JP. This church is about a mile down the street from my old apartment (I lived there from the fall of 2003 to 2004) and right across the street from the community theater where I was in a production of Inherit the Wind while living up there but ironically this was my first time setting foot in this church! Anyway, it was a very long day and I got home around 8:30pm. But it was a very nice day - great to see Peter in such an important part of his journey, wonderful to get to chat with Alice (and Lexie and Emily) on the drive to and from JP (I was the navigator), and just a nice day overall. When I got home I just felt like crashing and going to sleep for a few days but I needed to get my homework done for class tomorrow which I did manage to do. But as I always do at this time of the week, I'm not 100% sure I'll make it to class tomorrow. With my homework done chances of making it there go up but I haven't felt great today so I'll see how I'm doing tomorrow. I'm getting in some extra fluids overnight and hoping that perks me up a bit. So with that I will sign off and get to bed! Please continue to keep my friend from church in your thoughts as well as Caity, Kelly, Heather, Donovan, Dylan, Sarah, and Malisa in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good weekend!
Saturday, November 18, 2006 11:59 PM EST
much more than what we accomplish...
far more than what we possess."
--William Arthur Ward
Hi Everyone,
I yet again waited until I'm falling asleep to start writing an update so this will be short. It seems like I'm falling asleep much earlier than usual, which I'm not complaining about (I'd rather go right to sleep at midnight when my Primaxin infusion is done rather than be up until 2am or later trying to get to sleep) but it's thrown me a bit from my "normal" routine.
Yesterday I had my appointment with Dr. R (GI) and it wasn't a great visit but it wasn't bad really. It felt rushed and I didn't get to really talk much about what's going on. But he is addressing the reflux, although not with any big changes right now. I'm switching from Pepcid to Prilosec at night in addition to my usual morning dose of Prilosec and I'm taking Maalox up to 4 times a day when the burning gets worse. Dr. R thinks the reflux is worse because of the Primaxin which is very possible, although I was having increasing issues before starting on the Primaxin but maybe the Primaxin is just making it worse. If these little medication changes don't help after a month I'll get back in touch with him and we'll figure something else out. If the meds do help then I won't go back for 3 months. I really didn't get to talk to him much at all about how I'm still struggling with eating but since things are better than they were before it seems like we never get into specifics. I think he may think I'm eating "normally" (whatever that is) so maybe I need to bring it up more at my next appointment. Other than that, yesterday wasn't very exciting. I took the train up and back to Boston for the appointment so I had some time to kill afterwards while waiting for my train back and I sat around at South Station nibbling a bit at some "lunch" and people watching. Then I came home and crashed pretty hard for the rest of the afternoon and evening. Today wasn't too bad but not particularly restful. I worked from 10am-2:30pm, ran a few errands to pick up some meds and a few things at the grocery store, and then came home to bake cranberry bread for the ordination of my church's previous student intern minister tomorrow. And I took a nice shower this evening which is always enjoyable, although I would have liked it more if I'd had time to take a bath and relax a bit there (although sometimes it's just easier to get in and out and spend the time resting in bed instead of the tub).
Tomorrow will be another long day - choir rehearsal before church, then the service (with choir singing), then I'm going over to my little port buddy Lexie's house to grab something to eat and visit for a while before heading off to the ordination. And at some point I have to do my homework for class on Monday (it shouldn't take too long but still I'll need to find some time to do it). And I'd really love to try out some low-fat christmas cookie recipes - I'm trying to find ways to still be able to enjoy my holiday foods without paying for it too much! Today at the store I picked up some soy eggnog to try out and I think I can adapt my gingerbread cookie recipe to be pretty much fat-free and I have a few recipes for sugar cookies that have very little fat in them. Hopefully I'll find ways to enjoy all those yummy holiday foods. And if not, I'll still bake them for everyone else to enjoy! I have quite a few things to make to bring to Thanksgiving so I guess I know how I'm spending Wednesday! I can't believe it's almost Thanksgiving and that means my sister is coming home really soon - she's getting here on Tuesday morning and she'll be here until Saturday morning. So happy to get to see her and hopefully get to hang out with all of my siblings at once which hasn't happened in...I don't even know how long.
Health-wise I'm doing so-so. In the last few days I've done pretty well at knowing when I need to stop eating and avoid the temptation of taking just one more bite. But this evening I had a second small bowl of cereal and that pushed me over the edge so I'm curled up with my heating pad, dealing with a lot more reflux, and I'm learning my lesson. But at least I was doing well before tonight so hopefully I'll continue on that path. I've had some headaches off and on over the past few days (that is some worse headaches than my usual, daily ones) but I've only had one bad one this week that required my migraine medicine so that's good at least. My joints are giving me a hard time and I'm having more air hunger but nothing too terrible.
Well, this ended up being longer than I thought it would be but I better stop here and go get ready for bed so when my Primaxin is done I can just go right to sleep. Please continue to keep my friend from church in your thoughts as well as Caity, Kelly, Heather, Donovan, Dylan, Sarah, and Malisa in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good weekend!
Friday, November 17, 2006 11:59 PM EST
--Mary Stewart
Hi Everyone,
I'm way too tired to do a real update tonight so I'll include the report on today's doctor's appointment in my update tomorrow. Hope you all had a good week!
Thursday, November 16, 2006 11:45 PM EST
--Rabindranath Tagore
Hi Everyone,
Today was a long and tiring but overall pretty good day. My dad and I left around 9:30am to head to New York to see Dr. Bock and it was a pretty easy drive out there, except for some pretty heavy rain at some times. We were a few minutes late for my appointment but usually it's no big deal since they're usually running late but not today! We sat for just a few minutes in the waiting room before we were taken back and then we were only there for a few minutes before Dr. Bock came in. We were in and out of there in less than an hour and less than four hours after leaving home! Record time! The visit was good. Dr. Bock is really thrilled at how well I'm handling the Primaxin at the higher dose and that I'm seeing improvement. He said I look better than I have in a long time so that's encouraging (although those of you with invisible illnesses know that the outside doesn't always reflect what's going on inside). We're not changing anything right now, I'm getting my iron levels checked again since I've been on the iron supplement for a few months but I'm sure that's all going to be okay since my hemoglobin and hematocrit have been normal for the past month. The one concern is a nosedive in my white cells but we'll keep an eye on that and hopefully it will rebound or at least not drop any lower. My white cells were the only thing off in this week's labs which is good but it would be nice to have everything be normal one of these weeks! But I'll take one thing being off over a bunch of things being off. My dad and I stopped in at my aunt and uncle's and had a nice visit and dinner (I didn't eat much since I was still full from lunch at T.G.I. Friday's after my appointment). I can't believe we'll be back there in a week for Thanksgiving! Crazy! I slept most of the ride back home and I'm quite worn out from the long day and still trying to recover from the busy week last week. Tomorrow I have to be up early again to catch the train to Boston for my appointment with Dr. R (GI). I need to talk to him mostly about my worsening reflux issues and hopefully he'll have some ideas of what to do to help that.
Now I better finish this up since my Primaxin is done and I'm plenty ready for bed. Please continue to keep my friend from church in your thoughts as well as Caity, Kelly, Heather, Donovan, Dylan, Sarah, and Malisa in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Wednesday, November 15, 2006 9:54 PM EST
"No," said Pooh humbly, "there isn't. But there was going to be when I began it.
It's just that something happened to it along the way."
~Winnie-the-Pooh
Hi Everyone,
Sorry I didn't update last night (for any of you that stopped by looking for one). I pretty much just fell asleep during my night Primaxin infusion and when I woke up around midnight I didn't want to do too much to wake myself up so I did as little as possible before going to sleep for the night. I was surprised that I fell asleep (at least for more than a few minutes) before taking my nighttime meds that help me sleep and I'm taking it as a sign that my body can't be pushed anymore, I need to stop and rest or I'm bound to be heading for trouble. Yesterday was a long, pretty tiring day. I slept in a bit, then drew labs, de-accessed, took a shower, re-accessed, did my afternoon Primaxin infusion, and went off to teach my theater classes. The classes went okay and I'm feeling pretty good about where we are in the rehearsals for both plays (one for the younger class and one for the older class) but we still have a lot of work to do, beginning with them finishing learning their lines. Then I cleaned things up there and went off to choir rehearsal which was good but I was so tired and low on energy that I'm not sure how much I'll remember of what we went over but at least I was there. And when I got home I more or less went to bed and rested (and slept for a while) before turning in for the night. Today was very low-key which was very necessary. I was hoping to get out to run a few errands (mainly the post office and bank - so exciting!) but I wasn't up to that so I just stayed in my PJs and rested in bed for most of the day. I watched Elf (trying to convince myself it's almost Thanksgiving and the beginning of the holiday season), did some knitting, and now I'm hoping to get some homework done before my limited energy is zapped. Tomorrow will be a long day to New York to see Dr. Bock (Lyme doctor) and then stop in at my aunt and uncle's in Connecticut for dinner. And Friday will be a pretty long day, too, going up to Boston to see Dr. R (GI doctor). But hopefully the two days of doctor's appointments won't wear me out too much since I have a busy weekend coming up and then my older sister will be getting here from Oregon on Tuesday morning! Yay! I'm so looking forward to her visit - it's been so long since she was home and longer since she was home for a holiday.
Okay, time to hook up my Primaxin and try to get some homework done (still need to finish up the homework that was due this week but I should be able to finish that tonight). Please continue to keep my friend from church in your thoughts as well as Caity, Kelly, Heather, Donovan, Dylan, Sarah, and Malisa in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Monday, November 13, 2006 11:50 PM EST
But still I am one.
I cannot do everything,
But still I can do something;
And because I cannot do everything
I will not refuse to do the something that I can do."
--Edward Everett Hale
Hi Everyone,
This will be quick since I'm falling asleep here. Today wasn't a great day overall but not horrible. I did drag myself up to school because there were a number of reasons why I really needed to be at class today. But the drive and just being out of bed, upright, and semi-alert was exhausting. And on top of that, I went up early to do my IV Primaxin (antibiotic) infusion at school before class as I always do only to discover that I had all my supplies except alcohol pads (to clean the cap of my IV line)! I searched through my bags and didn't find any hiding in there so I had to just skip the infusion (because hooking up without cleaning the endcap first is just asking for an infection and I would never risk it like that). I was kicking myself for forgetting that small but very important part of medical supplies but there wasn't much I could do at that point. I'll just be sure to keep some extras in all my bags in case I'm using a bag that I don't usually keep medical supplies in (yeah, I don't know if that sentence makes sense but I'm so tired that I'm not going back to fix it).
Well, I better get to bed (or rather to sleep since I'm already in bed). Please continue to keep my friend from church in your thoughts as well as Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you all had a good Monday!
Sunday, November 12, 2006 11:59 PM EST
What appears bad manners, an ill temper or cynicism
Is always a sign of things no ears have heard, no eyes have seen.
You do not know what wars are going on down there where the spirit meets the bone.
--Miller Williams
Hi Everyone,
Sorry I didn't update last night. I made it home safe and sound but I was really tired and couldn't sit down and write anything. I'm definitely worn out and it will probably take a while for me to recover from everything I did while I was in Montreal but I'm glad I pushed myself and did the things I did because it was a wonderful trip. I'm going to backtrack to Friday first because that was a great day and I don't want to forget to share it.
On Friday I spent the day going around to five different churches and cathedrals, all within walking distance of our hotel. First I went to Cathedral Marie-Reine-du-Monde which was beautiful. I didn't know a whole lot about it before so it was a nice surprise to see how beautiful it was. Since pictures are worth a thousand words, I'll defer to pictures to convey my words:
Next I went to the Christ Church Cathedral which was simple but very pretty, especially the stained glass window by the altar. Again, here are pictures instead of me rambling on trying to describe it:
And then I went on to Saint Patrick's Cathedral which was a big surprise since I had absolutely no information about it, I just saw it on my map and figured I'd stop in and see what it was like:
And then came the big cathedral, Notre Dame Basilica, which was just...amazing, which really isn't a big enough word to begin to describe it. The way the altar is painted and lit it just looks...I can't even describe it so I'll just give you the pictures to see for yourselves:
Those are of the main altar and give you an idea of what the cathedral was like. It was very peaceful and just an amazing experience. I sat for a long time at one of the side altars and prayed (which I really don't do but it seemed to be the thing to do there). I prayed for many of my friends and loved ones who are having difficult times and I felt I connected with something, what I don't know but yesterday I was feeling that I had just spoken to one of those friends that I prayed for even though I hadn't had communication with her since before I left for Montreal. Here's the side altar I spent that time at:
And later in the afternoon I went back and lit a candle and sat there for a while longer. The candle I lit is a four-day candle which means it will be burning (or at least should be burning) until sometime on Tuesday afternoon which is pretty amazing to think about. I hope that with that candle still burning there, my thoughts and prayers are somehow still burning strong. I took videotaped the candle with my camera so here it is if you want to see my candle burning strong:
After the first visit to Notre Dame Basilica (because I went back later in the afternoon for a second, shorter visit) I went back over to Notre Dame de Bon Secours that I had visited on Wednesday and had a moving time at. It wasn't quite as great this second time which I think is partially because it was a nicer day out and more people were there (and the first time I went when it was raining and grey outside it was impressive to step into this glowing cathedral) and also after going to Notre Dame Basilica, nothing could really compare. But it was still nice to go back and here's a picture from that day of one of the side altars with Saint Anne on the lefthand side:
After all that I was quite worn out (lots of walking) and I rested for a bit before going out to dinner with my dad in Old Montreal at this great, cozy little place. We were seated on the second floor right next to the window overlooking the cobblestone street and every once in a while we'd hear "clip, clop, clip, clop" and see a horse-drawn carriage go by which was pretty cool. So it was a nice way to spend the last night there.
Yesterday we had breakfast at the hotel restaurant and then packed up and headed home. It wasn't a bad drive - pretty much exactly 6 hours including the few stops we made and we got home right around 5:00pm. I unpacked and showed my mom my pictures and talked to my brother (who has just given his notice at his job (he delivers pizza for Domino's in New Bedford) which is kind of a big deal because it's related to people being held up at gunpoint, I won't get into it but he could probably use some good thoughts to help him find another job that will be less stressful and safer). And I eventually made it to bed (had to stay up for my Primaxin infusion).
Today was a long day and I'm so wiped out from it and from not having enough time to rest and recover from being away last week but the day overall was pretty good. I made it to church early for choir rehearsal and the service today was really good. And then afterwards I spent a long time talking to my friend who is very sick (but made it to church by pure will, being pushed in a wheelchair and just not doing very well) as there is a very strong suspicion that she has Lyme disease underlying all her health problems that have escalated so much in the last few months. So we talked for a long time - I'm trying to do everything I can to get her help and I'm sure that one way or another she'll get to where she needs to be but it might take a little bit of pushing in the process. But she could use some good thoughts and prayers. I also got to talk to some other people which was nice. And my friend Alice (the mother of Lexie, the little girl with the brain tumor that I've talked about from time to time) told me something that kind of surprised me but made me think. She was saying that she was glad that I was back at church this week and that when I'm not there, it's like there's something missing (which leads to them worrying that something is wrong). She said I'm like a beacon of hope that you can push on through even with a chronic illness. She said it better than I'm remembering but it made me think of my connection with my church family in a different way and it gives me renewed strength to plod along through rough times. That support has been so helpful and important to me over the last few years and especially in the last year or so.
So after church I stopped at home quickly before heading off for an extra theater rehearsal for my older theater class. Only half the kids showed up and I couldn't get in touch with the one other kid that we really needed to do a "real" rehearsal but we managed okay. I'm sure some of the kids just forgot (and to be honest, I had forgotten about it until a parent called me yesterday to ask about it) so I'll just have to be better at reminding them (and maybe their parents) about the few extra rehearsals we have scheduled. But that was pretty tiring. Since then I've pretty much been resting. I tried to do some homework but my brain is so foggy that it's a lost cause tonight. I'm not totally sure if I'll actually make it to class tomorrow but I'll play that by ear and see how my head and everything else is doing in the morning. Hopefully I'll be up to making it to class, even if I'm not able to finish up all the homework (I e-mailed one of my professors to give her the heads up that I might not have all the reading and homework done to turn in tomorrow but I'll do my best).
Well, I better go. My primaxin is almost done and I'm falling asleep here so I better post this before I fall asleep for good! Please continue to keep Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you all had a good weekend!
Thursday, November 9, 2006 8:19 PM EST
--Henry David Thoreau
Hi Everyone,
Sorry for not updating sooner - it's just such a pain to go down to the lobby to go online and deal with trying to get the internet code to get online (for some reason they will charge a person the same amount for internet access whether they can go online from their room or not which just seems ridiculous). So I haven't been online much at all. I also haven't been good about writing updates everyday to post later so I'm going to go write a bit about each day now (they'll be in reverse order so they'll go into the journal history the right way). There IS an update at the end of today's update that I did actually write on Monday night (well, technically Tuesday morning - just after midnight) so I'll just go through the past 3 days now.
First off, today was quite a good day overall. It was the last day on my 3-day museum pass so I had quite a bit planned and of course didn't get around to it all (and some of the stuff I DID get around to wasn't really worth the effort). I started out fairly early (well, just before 10am) and headed off to the metro to go to the Biodome, Insectarium, and Botanical Gardens. The Biodome was really great. There were four different climates represented with animals and plants in each climate section of the building. It was kind of like a zoo all indoors with a Tropical Forest, Laurentian Forest (i.e. deciduous and coniferous forest), St. Lawrence Marine Ecosystem, and Polar World (arctic and antarctic). I took lots of pictures but you can't use the flash in the exhibits so some of them are a little blurry. Here are the best ones as well as some videos I took with my camera:
A prairie dog (a temporary exhibit)
Parrots in the Tropical Forest section.
Yes, those are porcupines...in a tree (part of the Laurentian Forest section)
A capybarra - the worlds largest rodent (I'm serious!)
And of course I'm saving the best for last...THE PENGUINS!!! They have four different kinds of penguins there - rockhopper penguins, macaroni penguins, gentoo penguins, and king penguins. This was the first time I got to see macaroni, gentoo, and king penguins and I was most excited about seeing the kings. They really look regal and are much calmer than the other breeds in the exhibit. There were only 3 or 4 of them but they were so great to see. Here are some pictures and videos (sorry if you have dial-up!):
A shot of most of the penguin exhibit (there was glass between the visitors and the actual exhibit because of the cold temperature required for the antarctic conditions these penguins are used to)
Three of the king penguins (I can't even say how much I loved seeing them!)
And some of the gentoo penguins
And now for some movies!
Watch closely towards the beginning of the video and you'll see a penguin dive down and the jump up on the rocks.
I call this "March of the King Penguins" (they were marching more before I started taping so I only got a few seconds of it but they're still really cute!)
Okay, that's it for the Biodome pictures and videos. I hope you enjoyed them, especially the penguin ones! After spending a few hours there I headed off for the Inesectarium which wasn't too far away but it was a bit of a walk and I was really disappointed with it. I was expecting like rooms of butterflies and other insects buzzing around but it was pretty much all just dead insects pinned onto boards in display cases. So I sped through that and walked around the Botanical Gardens a little bit but it's too late in the fall for there to really be anything to see there so I just headed back to the Biodome and spent another hour or so there. Then I headed back to the Metro and realized I had planned to go to the Just for Laughs Museum but it was 4:30pm and it closed at 5pm so I didn't even try (it was about 7 or 8 metro stops away and who knows how far from the metro to the museum). BUT the Museum of Contemporary Art is open until 6pm and on the same metro line so I popped over there for a little bit (it was nice but small) and then headed back to the hotel. It was a long but really fun day. My dad and I got room service for dinner (easier than trying to find a place to eat since we were both pretty worn out) and I'll soon head downstairs for a brief internet session before hooking up my Primaxin and hopefully heading to bed early tonight.
Wednesday November 8, 2006
--Kahlil Gibran
Okay, Wednesday. I did a lot of walking and it was raining (although only lightly most of the time) but it was still a thoroughly enjoyable day. I started out with the Science Centre which was disappointing since I thought there was going to be the human body exhibit (with real bodies showing the various organ systems) but apparently it was only there until mid-September and they just haven't taken it off their website yet. After that I walked around Old Montreal for a while and went over to the Musee Marguerite-Bourgeoys and Chapelle Notre Dame de Bon Secours which was really quite amazing. The chapel was amazing and so peaceful and really moving. I was surprised by it.
Then I took the tour of the museum part (included in my 3-day museum pass) which included going up to the top of the tower where you can look out at the city (although with the rain and fog it wasn't that great a view). These two angels are on the roof on either side of the tower:
After that I just walked around some more, popped into some stores, and just took my time seeing things and walking back towards the hotel. My dad and I went out to dinner with two of his co-workers at the restaurant on the top floor of the hotel that is the only rotating restaurant in Montreal (no great views because of the fog).
Tuesday November 7, 2006
--Elisabeth Kubler-Ross
Okay, and Tuesday. On Tuesday I spent most of the day at the Holocaust Memorial Center which was very good and moving but in a different way than the one in Washington DC (which I've been to 3 or 4 times). I took my time and spent a few good hours walking through it and watching the videos of survivors talking about different aspects of the war and the concentration camps and everything else that they went through. Since it was already a bit later than I'd planned I decided to change my plans a bit and just go to the Museum of Archaeology and History which was a little disappointing since I was more interested in the archaeology part and it was more about the history but it was still good. Then I came back to the hotel in the mid-afternoon and did my afternoon Primaxin infusion and more or less rested. That night my dad and I went to dinner with his boss at the revolving restaurant on the top floor of the hotel - slightly better views than Wednesday night and a good meal overall (although I just got a chicken sandwich - nothing too exciting).
Whew! Okay, so that's my week so far. I can't believe tomorrow is the last day before we head home on Saturday morning! I have plans to visit a lot of the churches and cathedrals nearby (and there are at least 5 or 6 on my list), some of which may be better than others. I'm going to go back to Notre Dame de Bon Secours and also to at least 2 others. I need to come back in time to do my afternoon Primaxin since I made a judgement call and skipped it today (Thursday) and yesterday (Wednesday) so I could have more time out enjoying the city. But I can't do it too many times so I'll probably push it back a bit later than usual and try to head out fairly early to get in as much as possible. But now I need to head downstairs to get online and post this before I have to hook up my evening dose (one of the big issues with not having internet in the room - I'm restricted with when I can go online because of my infusion schedule).
Please continue to keep Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. Please also keep my friend from church in your thoughts as she is dealing with some rough things and still without a definite diagnosis - she could really use some strength and good energy. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you all had a good week!
Tuesday November 7, 2006 12:10 AM EST
--Unknown
Hi Everyone,
Today overall was a nice low key kind of day. I took some time in the early afternoon to go walking around, both underground and outside (I needed some fresh air and the fresh, crisp fall air was just right), and saw what the area right around the hotel is like. It's nice - lots of cool looking buildings and I haven't even ventured into the more interesting parts of the city yet. I was party walking just for the sake of walking as I felt I needed to get moving or I was just going to turn into a couch potato (or "bed potato" would be a better term since there isn't a couch in the hotel room) and partly walking to see the area and explore a bit. I didn't really do much other than look around. I did stop in at a little convenience store in a cool part of the underground (in reference to the underground city - a pretty cool part of Montreal) and I was so tickled to see all the containers of things I know but with French on them so I got a bottle of Boost (nutritional drink) for kicks. I wish they had Ensure since that seems to be what I'm drinking more often than Boost but it's just more of a cool thing than something to really drink (although I'm sure I will at some point, especially since it's a flavor I've never seen at home - just mocha, nothing too out there, but I've never seen it in the stores at home). After the walking around I came back to the hotel room and more or less crashed. I spent some time on homework but I'm still struggling to understand last week's readings and concepts which I think at this point is a lost cause and I just need to move on and address the problems when I get back to class next week. I also more or less planned out which museums/attractions I want to visit and what would be the best way of organizing them into days with the least amount of bustling from one place to another. I think I have it pretty well planned out but I wasn't able to get complete information on the Holocaust memorial that's at the top of my list of things to see so I'll have to get online tomorrow morning and check on that which could change my plans for what to see tomorrow (oops, it's today by now - sneaky little midnight creeping up!). But, my basic plan is to go to the Holocaust memorial, The Science Center, maybe the Museum of Archaeology and History (it sounds interesting), and if I'm up to it and there's time I'll also go to one of the cathedrals. I'm really trying to pack it in! And in order to do that, I better get to sleep.
Please continue to keep Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all had a good week so far!
Sunday, November 4, 2006 1:00 PM EST
--Albert Camus
Hi Everyone,
I'm here safe and sound in Montreal with my dad. We don't have internet access in our room (because our floor and 2 or 3 of the floors directly below us have very weak signals) so I couldn't update last night but we can get on the wireless internet down in the lobby, so we (my dad and I) will be heading down there shortly to get online and do a few things before going off to find some lunch (although I'm not very hungry right now - but I'll nibble at something at least). The drive up here yesterday was actually pretty nice - lots of great views of the mountains and valleys in Vermont and really no traffic to speak of. I managed to stay awake until we got to the Canadian border but from there to Montreal (only about 40 or 50 miles) I was dozing on and off. While I was awake I was pretty much knitting - a nice way to pass the time on a car trip although I think doing it for too long would make me get car sick but I took breaks when I needed to. After we got to the hotel we checked in, brought our huge amount of luggage up to the room with the help of the bellhop (we seriously packed more than I could imagine two people would need for a week but two boxes and a backpack are just my medical supplies and we brought a few bags of food to snack on and that I can eat so that makes it more understandable). We changed our clothes and headed down to the hotel restaurant to meet one of my dad's friends and co-workers (my dad and he both have "remote offices" which means they work from home - my dad from Massachusetts and his friend from Missouri). He was very nice and we had a great dinner (although the food wasn't amazing). It was a very nice way to start the week here. After that we basically came back to the room and crashed.
This morning I did my usual IV Primaxin routine but my cell phone alarm clock didn't go off the third time (it went of at 7am for me to take oral meds, then 8am to hook up the first bag of Primaxin, then it was supposed to go off at 9:15am for me to switch bags). Our phones are acting strangely but it's how my brother and mom's phones act when we're in Maine - they lose power really fast and get really hot when you try to use them. The case this morning was that my phone was dead after only being unplugged from the charger for, at most, 6 hours. So I'll have to use the alarm clock radio to wake me up which is fine (and maybe preferable to the alarms on my phone) but our phones are basically useless, not that we were going to use them very much since the rate per minute is pretty high being out of the country. Anyway, I've basically been resting all morning, doing some stuff on my computer, and generally taking it easy and recovering from the long drive in the car yesterday. I haven't quite come up with a game plan of what to do when but I think I'll sit down and figure out what museums I want to see and then try to strategically plan the best way to see them all. If anyone has any suggestions of museums or other things to see in Montreal, please let me know!
Well, I better go. We're heading downstairs now. I'll try to update every other day or close to that but I'll probably write updates everyday and just not be able to post them everyday (so I'll post a few at a time). Please continue to keep Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you all had a good weekend!
Friday, November 3, 2006 11:59 AM EST
And the fear struck fearless be.
May the grieving shed all grief -
And the sick find health relief.
--Zen chant
Hi Everyone,
A very short update tonight. I'm pretty much all packed up and ready to leave tomorrow morning for Montreal with my dad. I didn't realize how much medical stuff I need for a week! I have two boxes of Primaxin bags and supplies and a rolling backpack with all my hydration supplies and oral meds. And on top of that I have my suitcase of clothes (it's a lot harder packing for cold weather than warm weather - there need to be more warm clothes that end up paking up really small!), a backpack with odds and ends, two bags of food and drink stuff, my backpack for in the car, and my bag of knitting. Yep, I've most likely overpacked but there really aren't many things that I know I won't need and since we're driving it's a lot easier to just back whatever I need. Oh, and there will be a cooler also with some drinks and my supplement syringes that get added to my saline bags. But now I'm falling asleep here and need to get sleep. We won't be leaving really early but early enough that I can't sleep in. While I'm away I expect to be able to get online from the hotel so I'll continue with my daily updates. But if I miss a day, don't worry!
Please keep Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope everyone had a good week!
Thursday, November 2, 2006 11:59 PM EST
--Mahatma Gandhi
Hi Everyone,
Today was overall an okay day but not as productive as I was hoping. I slept in A LOT (woke up at 1:00pm) and that was even after going to sleep at a reasonable time (by my standards anyway - before 1am). So I guess I just needed the sleep and I wouldn't be surprised if there's a repeat of it tomorrow. But that's fine with me, as long as I can get done what I need to get done. This afternoon I ran a few errands - picked up my check and my hotpot from the art center, stopped by the post office, and the bank (yeah, really exciting!). The rest of my afternoon was pretty low-key. I had some issues with my Primaxin infusing - it would infuse fine and then I'd look up at it a little while later and it was either going REALLY slowly or had stopped altogether but I always got it going again, not sure what's up with that. And then ended up making the mistake of not mixing the powder with the saline of the second bag (the 250mg one) so I just got extra plain saline. Luckily, though, the other day I could only infuse the 500mg bag so I had an extra 250mg bag left so I just hooked that up when I realized the mistake (when the unmixed bag was finishing) and I got it all in but it all took longer than usual. And this evening I baked a batch of banana bread and a batch of blueberry bread (usually they're muffins but it's a little easier to just bake it in the square glass dish than in muffin tins and then you can just cut off a small piece instead of having to eat a whole muffin). And I made a quick trip out to the grocery store to get a few things I realized I should get for the trip as well as some snack stuff for the car ride. And of course there was Grey's Anatomy which I watched and taped but I missed about 15 minutes because I was in the kitchen taking care of the blueberry bread so I'll have to re-watch it tomorrow and watch ER which I only taped. Tomorrow will be spent packing - quite a bit to do there. At least I did my laundry earlier in the week so that's all set. Just a matter of getting everything together and into my suitcase and then packing up all my medical supplies. It's all a lot easier to manage since we'll be driving - I don't have to worry about plane regulations or packing light enough to avoid problems. So that will be a bit of a long day and I want to bake a few more things to take with me (perhaps I'm overdoing it with food planning, but it's a lot easier for me to overpack than underpack with that).
I better get to sleep. Please keep Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Wednesday, November 1, 2006 11:59 PM EST
But only true friends will leave footprints in your heart.
--Eleanor Roosevelt
Hi Everyone,
I'm just about to snuggle down in my bed and try to get some sleep so this will be short(ish). This morning was a bit of a rough start to the day. I left for my appointment with Dr. H (PCP) a little bit late and then ended up getting stuck in traffic jam after traffic jam. What is usually about an hour long drive ended up taking twice as long! Apparently there were a lot of other people who were late for their appointments and the office was great about getting me in but just a little later in the morning. So I ran a few errands and then went off to my appointment which went really well. Dr. H spent a long time with me even though there were other patients waiting to see her. The main concern right now is the reflux which Dr. H can tell is still bad by my red, raw throat. So she's juggling around my reflux meds and I'll be talking to Dr. R (GI) about that in depth when I see him in 2 weeks. Since my anemia seems to be under control I'll be able to cut back to just one dose of iron a day instead of two and Dr. H has ordered labs to check my vitamin D levels since I'm probably not getting enough in my diet right now. We talked for a while about how my eating is and there are some things to keep an eye on there. Dr. H wants me to try to increase my calories because it seems like my body is still in starvation mode and causing some issues so hopefully we'll help that if I'm able to get in some more calories. Umm...other than that there wasn't a whole lot to the appointment. Dr. H is very supportive of my trip to Montreal - she really understands how important it is (to me at least) to keep doing the fun things to offset the medical stuff so she's happy I'm getting to go on trips and enjoy myself. I know I've said it before, but it seems like she and I just click well and I'm so happy to have her as my PCP now.
Okay, I'm hooked up to my fluids and ready to head to bed! Please keep Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Tuesday, October 31, 2006 11:12 PM EST
The moon is full and bright
And we shall see what can't be seen
On any other night."
--Jack Prelutsky
Hi Everyone,
I hope you all had a fun, safe, and sweet Halloween! I miss that excitement of being a kid at Halloween - trying to think up a good costume and then getting to go out with flashlights and pumpkin trick-or-treat containers to pick up the loot! But I think my favorite part of Halloween was coming back home, dumping out the candy on the floor in the living room, organizing it, and trading with my brother and sister (my younger sister is enough younger than me that our trick-or-treating days didn't really overlap much if at all). I'm sure most of you know what I'm talking about. It was always interesting trying to figure out what it would take to get that Milky Way bar or Reese's Peanut Butter Cup. But it wasn't really about the candy for me, it was that evening spent with my siblings that was so great. Even on the years when I didn't go out with them, when I went out with friends, I still loved that time with our candy spread out before us and just being kids. I find that's why I like the holidays so much - because of the memories spent with my family and often the memories of holidays with my siblings are my favorite. And that's what I miss the most as we've all grown up and with my sister all the way across the country in Oregon. I miss those exciting Christmas mornings sitting together opening our stockings and having Christmas dinner together. These things still happen but as we've gotten older they've changed. Change is inevitible, people grow up and outgrow old traditions (like leaving cookies, milk, and a letter for Santa on Christmas Eve.) but I can't help but miss the way things were when we were younger. But I am so thankful for having such wonderful family memories.
Anyway, enough reminiscing. Today was a long day but not as long as I was expecting. I slept in a bit, but not as much as I would have liked, and then frosted the cupcakes I made and finished getting everything else ready for the Halloween parties for my theater classes. Then it was off to get my car inspected and I wasn't sure how long it would take since I did wait 'til the last day of the month and I figured other people would be out there scrambling to get inspected but it didn't take long. The first place I went to said they couldn't do it since I needed the emissions inspection part, too, but the second place I went did it without a problem and very little waiting time. So my car is all set for another year at least as far as inspection goes. Then it was off to my theater classes. All the kids in the younger class came and we had a nice party for the first half of class and then I let them go off to be in the Halloween parade. I got to watch the parade from just outside the art center and I took some pictures, although none of them turned out great. But here are a few of them:
The start of the parade. There are three of my theater kids in this picture - the two black vampires on the right and the pink vampire in the middle - and my boss is the witch right behind the pink vampire but you can't see her very clearly.
Really cute - a whole family dressed as different colored M&Ms (there were two other kids in the wagon the dad is pulling).
Another really cute - and imaginitive - costume idea. The girl with the box on is a dryer and her friend next to her (who is kind of hidden by another person) is a washer. Reminds me of the Halloween when me and a friend were salt and pepper shakers.
Another one of my theater kids there in the pink costume.
The second theater class wasn't quite as good as the first one - only 5 kids showed up and they all left early so it was a short class but still fun. And then I found out that choir rehearsal was cancelled for tonight so I got to come home and relax for the rest of the evening. We had a total of 3 trick-or-treaters at my house. Pretty measley but better than the zero trick-or-treaters we had last year. For my theater class parties I dressed up as a farmer in my comfy overalls, a flannel shirt, and my younger sister's straw hat. Here's a picture my mom took after I got home from the parties:
You can't really tell but I had a toothpick in my mouth, that's why I'm not really smiling. It was a comfy costume and I was glad I dressed up but didn't go overboard with it.
Health-wise today wasn't too bad. Still dealing with ups and downs of my stomach but trying to work with it and not eat too many things I know I have trouble handling. It's been hard with the Halloween candy around and I admit I've broken down and eaten some but I'm trying to be careful about it. Tonight I'm curled up with my heating pad on my belly, though, and fairly distended so I know I overdid it today. Tomorrow is another day! I got the results of this week's labs and they look better than last week's - my white cells are back up to normal range and my BUN is almost back up to normal and nothing else is wacky! These are the best overall labs I've had in quite a few weeks so I'm happy about that. I think my white cells were low last week because I was coming down with a virus (a cold that has continually waxed and waned for the last 3 months or so). Either that or the shark liver oil is really doing a lot more than I think and cutting back to 2 a day instead of 3 a day for a few weeks there was causing the drop. Whatever it was, though, I'm glad they're back up to normal. No other health news to report. I see Dr. H (PCP) tomorrow morning earlier than I'd like to be up let alone an hour from home but I'll survive. And I'll go pick up my refill of Domperidone while up there, too (it's really convenient that the compounding pharmacy I get it at is right around the corner from Dr. H) and make a few stops on the way home, mostly at Whole Foods to pick up a few things for my trip to Montreal and just to have around. Other than that, I just have to swing by work to pick up my check for October and the hot pot I've been leaving there which has been great and made me realize how much it will help to have it with me in Montreal since I won't have any kind of kitchenette or anything in the room. So I'll be sure to bring lots of foods that I can handle that just require hot water to be added! Soup bowls, cream of wheat, instant oatmeal, cup-a-soup, tea, and whatever else I can think of that will help me eat reasonably well and not have to rely on eating out all the time (those of you with stomach problems know how hard it can be to eat out sometimes - why is it that so many things are fried or covered in cheese nowadays?). Then I'll probably spend time finishing up my packing list, making sure everything is in order with my infusion company for my antibiotics and supplies, and maybe start packing since it may be better to start early so I don't forget anything. It's a little stressful trying to make sure I have all my medical stuff for a week away since I'll technically be out of the country and it would be harder to get things sent to me there than it was when I was in Oregon.
Okay, I'm finishing up my Primaxin and then I'll head to bed with my hydration overnight. I'm not looking forward to having to be up early tomorrow (my appointment is at 9am, which means leaving before 8am, which means starting my Primaxin around 6am - not much fun but at least I can sleep through at least part of it!). Please keep Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you all had a good Halloween!
Monday, October 30, 2006 11:51 PM EST
--Elisabeth Kubler-Ross
Hi Everyone,
I find it interesting that often the most tiring days are ones that go by the fastest. Today was one of those days. This morning I really didn't want to get up but I had to draw labs and de-access and take a shower and re-access before leaving for school. So I got up and did all that and got off to school. I managed to run around campus getting the registration things I needed to get to register for spring classes and I did my Primaxin infusion and everything. Class went pretty well but I was more out of it than usual so I spent most of the class trying to keep my eyes open and trying to understand what was being discussed. I'll need to go over the readings and everything again but I'm sure I'll understand it after spending a little more time on it. I stopped at the grocery store on the way home to pick up a few things for the halloween parties for my theater classes tomorrow afternoon and when I got home I baked chocolate cupcakes for the parties and cranberry bread for home. I'll have to frost the cupcakes tomorrow and I have a few other things to do for it, too. I just hope most of the kids decide to come since it's optional and it seems a lot of them like to go trick-or-treating early so we'll see. If they don't show up, I'll just have to bring the food home and I'm sure someone will help eat it up. (I'm trying to be semi-healthy with the party snacks - low-fat chocolate cupcakes, apples and caramel dip, pretzels, apple cider, and grape juice punch - but of course I'm also giving them little Halloween goodie bags with some candy in it, I just couldn't resist!)
Health-wise things aren't the greatest but I'm managing okay. The reflux is still a big issue and today I had more of the gnawing, burning kind of pain in my upper abdominal area. Other than that I'm just feeling overall cruddy which I'm sure is partly due to not getting enough sleep for a few nights in a row (falling asleep around 2am and having to wake up 4 hours later to take meds and then every hour or so after that doesn't make for a good night's sleep). So hopefully having a few days this week to sleep in will help. Tomorrow I have to get out to get my car inspected (yep, I waited 'til the last day of the month to get that done), then get the party stuff finished and go off to my theater classes and then to choir rehearsal. We're not really expecting any trick-or-treaters (we had NONE last year) but I'll miss them anyway since I won't be home 'til about 9pm. But I'll get to see the Halloween parade going right by the art center (where I work and teach my theater classes) so I'll have to be sure to bring my camera for that and for my theater kids that dress up for the party!
Well, I'm almost done with my second bag of Primaxin so I better finish up and get ready for bed. Please keep Diana, Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you all had a good Monday!
Sunday, October 29, 2006 11:59 AM EST
Is all that you can see,
Just keep on climbing
Til you're where you want to be
Then find yourself a resting-place
Where you feel satisfied.
And take the good view in off the mountainside."
--Michael Troy
Hi Everyone,
This will be quick since it's late and I'm not feeling great as seems to be usual around this time of day. This morning I had some trouble with my alarm clock. Well, not so much with the alarm clock as with my own brain because I accidentally set it to go off at 6:00pm instead of 6:00am (figures I'd overlook that after making sure to change it back an hour before going to bed last night). But luckily I woke up just before 8:00am on my own and I was able to get in most of the 500mg bag of Primaxin before I had to leave for church - better than nothing! Church was good and I had a different experience of it because I was drafted at the last minute to go down with the older RE (religious education) class since they were short a teacher today and I had a good time doing that but of course would have liked to have been able to stay for the sermon, too. I've been wanting to help with RE for a while and was going to be one of the regular teachers last spring but with my health in such disarray I had to put that on hold. So now I'm basically a substitute RE teacher until I feel I can handle doing it regularly for the duration of one of the lesson plans. Apparently when I got up to go down with the kids, one of my church friends was worried I was leaving because I wasn't feeling well and as soon as the service was over she went over to my dad to ask if I was okay. It's nice to know that people are concerned but it's funny how quickly people assume the worst. If I miss a week of church people worry it's because I'm feeling really sick! I better be sure to let people know I won't be there next Sunday (because I'll be in Montreal with my dad) or they'll probably worry then, too! My dad and I stuck around for a little while at coffee hour and talked to a few people before heading home where I spent the afternoon pretty much resting. I did get to my homework eventually and just have some reading to finish up tomorrow before my class. I'm falling asleep here so I won't go into any health stuff tonight. Oh, and I put up yet another posting on my blog this afternoon. Tomorrow is my school day which I hope won't be too tiring since I have a full week ahead of me!
Please keep Diana, Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Sunday, October 29, 2006 4:35 PM EST
Just wanted to hop on here and say that I know I just changed the song on here a few days ago but I felt I needed to change it again. I love "Both Sides Now" (which is what has been on here for the last few days) and I'll probably use it again soon but I've had a number of things pulling me towards the song that's playing now, "Circle Game" by Joni Mitchell. The music director at my church played and sang it a few weeks ago as a prelude or postlude or something like that during the service. Then the other day it was playing at Barnes and Noble as I was going into the store. Somehow I just feel it's the right song to be on here right now. So enjoy it! If you'd like to read the lyrics, scroll up towards the top of the page - they're in purple font just below the music controls.
Saturday, October 28, 2006 11:59 PM EDT
--Anais Nin
Hi Everyone,
Today has been an okay day overall, although I'm feeling a lot of stomach pressure and some pain and nausea along with more reflux (which usually goes right along with the pressure) so it's not ending on the best note but at least the rest of the day wasn't too bad. We've had bad weather today - very rainy and windy but thankfully we've only lost power for less than a minute all day. Just long enough to reset a lot of the clocks around the house but not long enough to cause any kind of a hassle except for re-setting the clocks. But of course tonight (or rather tomorrow morning) the clock changes anyway so it's not too much of a hassle. I worked today from noon to 2:00pm and it wasn't very exciting. I worked on correcting a number in the new brochures for a while and also put together most of the little Halloween bags for my theater kids. After work I pretty much got in my pajamas and spent the rest of the day hanging out and resting. Health-wise things are so-so. I was too ambitious with food today and now I'm paying for it. It's so hard to really stick to the foods I know I can handle when there's so many other good things to try! But most things really aren't worth the problems they cause afterwards so I just have to be more careful and stricter with myself. A lot of times I'm sure it's more the amount I eat that's the problem rather than what I'm eating (although there are definitely some things that cause problems no matter how much I eat). And on top of those stomach problems I'm feeling really puffy today and according to our scale I've gained 5 lbs. since this morning! Crazy! But hopefully everything will even itself out soon if I do what I need to do to stabalize a bit more. I'm just thankful that the Primaxin isn't making me feel that sick today and that the time change will give an extra hour of sleep tonight!
Well, my Primaxin is finishing up so I better unhook and get myself to bed (but I don't think I should completely lie down right because of my reflux). Tomorrow I have to be at church early for choir rehearsal before the service and then the afternoon will be devoted to homework (yeah, I'm such a good procrastinator that somehow Sunday afternoons are always when I get the homework done). Oh, and I keep forgetting to mention that I have a few new posts up on my blog so go over and take a look at them if you have a minute or two to spare. Please keep Diana, Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Friday, October 27, 2006 11:59 PM EDT
But here and now this is our time
And I may never find the meaning of life
But for this moment I am fine"
--Rob Thomas
Hi Everyone,
Today was okay overall but it's very late and I need to get to bed so this will be short. I had a pretty productive afternoon running errands. I went to a few craft stores to pick up a few things, Barnes and Noble to get a few books with the gift card my sister gave me for my birthday, BJs wholesale to get a few things, and finally Wal-Mart where I got a good plastic drawer organizer thing to keep my antibiotic supplies in. It's so nice to feel organized with all that finally! So that was my day more or less - nothing too exciting but at least I got things done. Now I need to get to bed and hopefully get a good night's sleep (I need it after the busy afternoon I had). Tomorrow I'm working but only from 12-2 so it won't be too bad. Then I have to get to homework and hopefully finish watching the movie I have from Netflix right now so I can send it back and actually make use of the membership I'm paying for! Please keep my friend from church in your thoughts - she's in the hospital in Boston with major GI problems. Please also keep Diana, Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Thursday, October 26, 2006 11:38 PM EDT
Laugh like we're mad
Cause this crazy, mixed up beauty is all that we have
Because what's love but an itch we can't scratch,
a joke we can't catch
But still we laugh..."
--Jewel
Hi Everyone,
Today was an uneventful day. I slept in until after noon and took it easy all day but managed to do quite a bit of baking. I made cranberry bread, banana bread, and nearly fat free brownie bites (which actually taste more like chocolate cupcakes so maybe I should change the name). Everything turned out very yummy and the recipe for the chocolate cupcakes/brownies was a new one I just found today and I know it will become a frequent treat for me! Yay for finding a way to eat some chocolate! And they taste more or less like normal chocolate cake so I'm probably going to make them for the Halloween parties I'm throwing for my theater classes. Health-wise I'm doing so-so. Having some headaches, not really bad ones but the kind that just makes me feel all over icky. And I definitely did too much "real food" eating today so I'll need to scale back on that for at least the next few days. But all of this is nothing new and I can handle it well enough. Now I just need to get myself to bed and hopefully get some good sleep!
Please keep my friend from church in your thoughts - she's in the hospital in Boston with major GI problems. Please also keep Diana, Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Thursday, October 26, 2006 3:27 PM EDT I just wanted to post a request for thoughts and prayers for my friend from church who has been in the hospital in Boston since Monday due to GI problems. She has been unable to eat solid foods for over a week and is also dealing with heart issues. So please keep her in your thoughts and prayers for the doctors to figure out what is going on and a speedy recovery.
Wednesday, October 25, 2006 11:59 PM EDT
--Elisabeth Kubler-Ross
Hi Everyone,
Today was actually a pretty good day overall. I got to sleep in which was very nice and definitely needed. And I basically spent the day resting in my nice comfy chair. I took a nice (although rather short) bath this evening during my (short) de-accessed time. Nothing else very interesting as far as what I did. Health-wise things are so-so. I'm doing okay as far as my stomach and eating goes as long as I make sure to stick with pretty easy foods and limit how much I eat at a time. I'm dealing with more reflux issues, though - not so much with the reflux going up to my throat and mouth but more with a burning type pain just below the bottom of my breastbone. I will talk to Dr. H (PCP) about that next week and I'll be seeing Dr. R (GI) in a few weeks so I'll also bring it up with him. This morning I got the results from my weekly labs and my hemoglobin and hematocrit are still holding in the normal range, although they both are a little lower than last week. Unfortunately, though, a few other things are low - my BUN is 4 (normal is 6-20 according to my lab) and my WBC count is 3.8 (normal is 4.5-10.5). The BUN probably isn't a cause of concern right now, although if it stays low we'll have to figure that out better, but the WBC count is a little more worrisome for me since it was all the way at 6.2 just a week ago. I'm hoping it will rebound next week and I really hope it's not a sign of my immune system having more trouble (low WBC counts were one of the big issues when I had to stop the Primaxin in January due to the whole major crash). And my alkaline phosphatase, while still in the normal range, dropped quite a bit from last week. Having things off for one week won't make me worry but if they're off again next week, especially if they go down more, I'll worry a bit about them. I see my PCP next week so I'll talk to her about all this then anyway.
Tomorrow my plans are pretty laid back again. I'm hoping to get out of the house to at least swing by the library to pick up a few books waiting there for me and hopefully out to Wal-Mart or K-Mart to get an organizing cart thing to help organize my medical stuff (it's in cardboard boxes right now and not as well organized as I'd like). I also need to do some more baking since we've almost finished up the banana bread and the spice cake (not so much a cake, more like a gingerbread) is gone. I think I'll make cranberry bread and probably some more banana bread and maybe I'll make some other stuff, too, depending on how I'm feeling. And I need to make a few phone calls to make sure all my medical stuff is set up for my trip to Montreal with my dad. We leave a week from Saturday! Well, I better get myself to bed. I got to sleep much earlier last night than I did the night before but I'm still usually up until 1am or later. Oh well, I'll take it, especially when I can sleep in which fortunately is happening a lot more right now. Please keep Diana, Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Tuesday, October 24, 2006 11:59 PM EDT
~Winnie-the-Pooh
Hi Everyone,
Today was an okay day but last night was pretty rough which of course affected how I was feeling. I've been having more trouble than usual with insomnia the last few nights, or maybe longer, but last night is probably one of the worst nights where that's concerned - didn't get to sleep until after 4am, just 2 hours before I have to wake up to take my first dose of meds of the day (after which I go back to sleep but there's a lot of waking up and going back to sleep after that). Anyway, this morning I drew my weekly labs, tried to catch up on some things online, watched a little TV while resting (I watched one episode of Grey's and one of ER from while I was away - just two more weeks to catch up on!), and eventually got dressed and off to teach my theater classes. The classes went fairly well but the older class was pretty difficult, although that's more or less normal for them. Then I headed off to choir rehearsal but left early to come home for my dad's birthday celebration - Chinese food for dinner and apple pie and ice cream for dessert (I made myself a baked apple instead of pie since the pie crust is too much for my stomach usually). It was nice having everyone in one place at the same time and having a good time. When there are a lot of us together we can get pretty wacky which is fun. And my older sister called to wish dad a happy birthday and she said they found a house and they'll be closing on it right before Thanksgiving! So exciting and just a little scary to think of my sister owning a house. I'm looking forward to seeing it the next time I go out to visit (which probably won't be until the spring but nothing is planned yet).
Okay, time for me to try to get some sleep. Tomorrow I have nothing to do so I'm planning on taking it easy, sleeping in (and napping), and taking a nice long bath! My wonderful friend, Diana, is in the hospital now and could use some good thoughts. Please also keep Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Monday, October 23, 2006 11:59 PM EDT
--Norton Juster, The Phantom Tollbooth
Hi Everyone,
Today was an okay day - nothing too great and nothing too horrible. I slept in a bit until about 11am and spent a while doing this and that online and of course I didn't get to finishing my homework (the actual part of the homework that I had to turn in) until about a half hour before I was planning on leaving. But I got the homework done and got off to school only a half hour after I was planning. I do have a bit of leeway about when I leave since I go up to school early to infuse my afternoon Primaxin dose there instead of trying to do it in the car or something like that. The office where I usually do my infusion was in use this afternoon but thankfully the office right next door wasn't being used so it worked out fine for me to set up there. I brought my laptop with me and now there's wireless internet in the college center so I occupied myself with random online stuff (amazing how much time you can
Health-wise things are so-so. The nausea from the Primaxin is definitely noticible and it's been difficult trying to get back on my regular schedule of oral meds and infusions, especially since I'm trying to tweak my infusion schedule to move things a little earlier to accommodate the longer infusion time and work around my school class and theater classes. My stomach isn't great so I'm trying to take it easy on it. I'm trying to make smoothies for some meals and throw in some protein powder along with fruit and juice or soymilk and so far that seems to be going okay but I get full really fast (which is the case with pretty much everything but liquids usually aren't quite as bad). I'm also trying to drink a lot of herbal tea to get in more water and avoid diet soda and other drinks like that and it's also cozy to curl up in my comfy chair with my blanket, laptop, and a nice pot of tea.
Well, I'm all done with all my infusions and can finally get to bed so I'll go do that now. Tomorrow is my dad's birthday (HAPPY BIRTHDAY, DAD!) so my usual Tuesday plans are being adapted a bit - I'll teach my theater classes and then go to choir for the first half and then come home for a late dinner and birthday festivities.Thanks so much for stopping by! Please keep Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. And I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good weekend!
Sunday, October 22, 2006 11:59 PM EDT
I sit and rest, and think of you.
Give my weary body peace.
Let my legs and arms stop aching.
Let my nose stop sneezing.
Let my head stop thinking.
Let me sleep in your arms.
--Dinka
Hi Everyone,
This will be quick since it's very late (almost 1am contrary to what the time on this post says - I keep it at 11:59pm if it's after midnight to avoid having it show up as the next date). Today wasn't too exciting. I made it to church which was good. Then I spent the afternoon doing school work (finally I managed to stop procrastinating long enough to get it done) and baking a little. I made another batch of the spice cake I made the other day (which got eaten up VERY quickly) but with a few tweaks to the recipe to try things out. The cake is fat free and vegan and I seem to be able to handle it pretty well - yay! And of course it's great that my family likes it so much. I'm more or less finished with my school work for tomorrow - the reading is done, I just have to write a one-page reading question response which shouldn't take me very long before I go to school tomorrow. Health-wise things aren't too bad. I'm having more nausea with the higher dose of Primaxin but handling it pretty well so far. I've found that I can minimize the nausea if, at first sign of it, I lie down or curl up and try not to concentrate on anything. I can manage watching TV but reading or doing anything else that requires concentration and focusing makes me feel sicker.
Well, that's it for me tonight. I need to get to sleep so I'll be somewhat rested for school tomorrow. Today is my wonderful friend, Tara's 20th birthday! Go over to her site and leave her some birthday wishes if you have a chance. Thanks so much for stopping by! Please keep Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. And I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good weekend!
Saturday, October 21, 2006 11:59 PM EDT
ask yourself what makes you come alive.
And then go and do that.
Because what the world needs is people who have come alive."
--Harold Whitman
Hi Everyone,
I'm just finishing up my IV Primaxin infusion and definitely feeling the effects of being on the higher dosage. I was lucky and had relatively few bouts of what I'll call "Primaxin nausea" (because it's a very different kind of nausea than my normal or GP nausea) when on the lower dosage. But now that I've gone from 500mg to 750mg I'm kind of holding my breath and hoping things don't get too much harder to tolerate. The delivery didn't get here today until almost 6:00pm so I didn't get to start back on it until tonight's dose starting at 10pm (it's just after midnight now and I'm more than ready for bed). With the dose I'm on I have to infuse two different bags of Primaxin - a 500mg bag and 250mg bag - because it doesn't come in 750mg and I thought it might be easiest to start out with the lower dose bag and then go up to the higher dose but it really doesn't make much of a difference in the long run - I end up with the same amount of medicine in me (I hope) and I'll just have to do what I can to figure out what will prevent too much additional nausea. Anyway, my day today was pretty boring. I slept in until after noon and could have probably rolled over and slept quite a bit longer at that point but decided I better get up and not spend the whole day sleeping. I didn't do what I was hoping to do today but that's mainly because I'm a wonderful procrastinator. So no school work got done (which means tomorrow it's down to business) but I made some baked pumpkin custard (basically pumpkin pie without the crust and baked in custard cups and small mugs) and banana bread and I spent quite a while reorganizing and cleaning up my room so that things are starting to look a little better! My comfy chair is no longer buried under piles of mail, books, random pieces of clothing, etc. and I'm actually sitting in it right now! I'm really trying to keep things organized and I really want to be able to spend time in my comfy chair as the temperature starts dropping and I anticipate spending lots of time curled up under blankets and such. I'm also happy with the way my medical supplies are starting to get organized and I spent a while working on that since I got the big shipment of Primaxin supplies this afternoon and those needed to get put away. I still need to measure between my bed and the wall and try to find a plastic cart with drawers that might fit there to keep my Primaxin supplies in instead of the cardboard box I have there now. I'm sure none of you really care about how my room is organized so I won't go on anymore about that. So basically I baked, cleaned, and procrastinated. At least my procrastination was pretty productive! I'm also trying to pick a song to change the song on here to and I'm having a hard time but there's of course no rush in changing it (I like the one on here now - Eva Cassidy has a beautiful voice) so I'll figure it out eventually (I'm thinking Bob Franke for those of you who know who he is).
Well, my Primaxin is finishing up and I'm falling asleep so I'll stop here. Tomorrow morning I have church but no choir rehearsal beforehand so I just have to be there at the usual 10:30am time. And then I need to devote the rest of the day to homework and hope I'm feeling up to tackling it!
Thanks so much for stopping by! Please keep Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. And I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good weekend!
Friday, October 20, 2006 11:11 PM EDT
but rather the judgment that something else is more important than fear."
--Ambrose Redmoon
Hi Everyone,
If you haven't seen the update from this afternoon, I'm keeping it up on the main page and it's good news for a change so make sure to read it. I'm not going to say much now since I did that extra update this afternoon and today has been a very boring day. I slept in and spent more or less all day in bed resting, watching some TV, doing stuff online, etc. I did bake some vegan spice cake this afternoon (from my older sister's vegetarian cookbook) and it turned out pretty tasty and doesn't need any adapting since none of the recipes in that particular cookbook have oil or butter in them (and obviously no eggs). I didn't do very well sticking to more tolerable foods today so I'm paying for it tonight and feeling sick and heavy stomach and having a lot of reflux so I have to do a better job of that tomorrow (and maybe even go overboard in the other direction to try to let things from today clear out). I don't have much of a plan for tomorrow - sleep in, do homework, try to catch up on some of the TV I taped while I was away in Oregon (can you believe I haven't gotten caught up on the last 3 weeks of Grey's yet?), get started on the Primaxin (see this afternoon's update for the details on that). Okay so maybe I do have a plan for tomorrow, albeit a loose one. But I'm feeling pretty sick now and I'm just going to get ready for bed and hope I fall asleep easier than the last few nights.
Thanks so much for stopping by! Please keep Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. And I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you all had a good week!
Friday, October 20, 2006 3:18 PM EDT
FRIDAY AFTERNOON UPDATE!
Expect your prayers to be answered in wondrous ways.
The dry seasons in life do not last.
The spring rains will come again."
--Sarah Ban Breathnach
Hi Everyone,
I had to come on here and let you all know the amazing turn of events that just took place. Okay, maybe not a turn of events (I wonder what the definition of that is) but an event. I just got a call from Steve at Coram (my local infusion company where I get my IV antibiotics from) saying that they received the perscription for continuing the Primaxin and my insurance company has approved it!!! Can you believe it?? I certainly can't. I'm in shock! So they're sending out a shipment tomorrow of the higher dose (750mg instead of 500mg) which, as I know from last time, means infusing two bags (one 500mg bag and one 250mg bag) but I'm an old pro at that from last winter. I'm still just trying to wrap my mind around this. I guess I should curse my insurance company - afterall, I have always been able to get what I need one way or another. Just imagine if Dr. Bock had written the orders for continuation last week instead of yesterday, I wouldn't have had any lapse in treatment. But I'm not going to look at it negatively - I don't think I've lost any ground in the last week and having a break has allowed me to sleep more and recover from my trip a little easier so I'll look at it as a good thing and how things were supposed to happen.
Okay, just had to share that with all of you! If you were sending good insurance thoughts my way, thank you so much! Apparently they worked!! But also please don't forget about everything I said in last night's update about the IDSA guidelines making things much more difficult for us Lymies (Lyme patients) and please consider signing the petition on the Lyme Disease Association's website. There are still so many Lyme patients who need to get proper treatment and are unable to because of these guidelines and other conservative doctor's views.
I hope you're all having a good Friday!
Thursday, October 19, 2006 11:51 PM EDT
They said, "We are afraid."
"Come to the edge," he said.
They came.
He pushed them,
And they flew...
--Guillaume Apollinaire
Hi Everyone,
Today has been a bit of a mix of emotions. I had my appointment with Dr. Bock and things aren't looking great as far as continuing my treatment of IV Primaxin (antibiotic) the way I've been doing it (through my local infusion company covered through my primary insurance company). If you're not already familiar with the whole Lyme disease controversy, I recommend you read this. In the last few weeks, the IDSA (Infectious Diseases Society of America) has come out with their updated Lyme disease treatment guidelines. If you're not familiar with the Lyme controversy, there are basically two professional medical groups that address Lyme disease - the IDSA and ILADS (International Lyme and Associated Diseases Society). ILADS is the group that treats patients appropriately with long-term antibiotics when needed and accept that Lyme disease can be very long lasting or chronic and require aggressive long-term treatment and that patients CAN and DO get better when treated appropriately. The IDSA is in the conservative camp, believing that Lyme disease, even late-stage Lyme disease, is easily cured with four weeks of oral antibiotics with at most an additional 2-4 weeks of IV antibiotics and that any lingering or returning symptoms after that (even if they are exactly the SAME symptoms as before treatment) are due to a supposed "post-Lyme syndrome". So anyway, the IDSA released their updated Lyme guidelines while I was away in Oregon and the guidelines basically state their beliefs about only short-term treatment being necessary and there being no such thing as chronic Lyme disease and they actually go so far as to list a LONG list of antibiotics and treatments that one SHOULDN'T use for Lyme disease which just shocks me. There is a good chance that these guidelines will affect if/how us Lyme disease patients will be able to get our treatments covered by insurance companies and Dr. Bock is very doubtful that my insurance company will agree to continue covering the Primaxin. So that is very frustrating, angering, depressing, and about a million other things but we're still trying to get it covered through my primary insurance company - Dr. Bock has dictated a letter of medical necessity for continuation of the Primaxin for 60 more days and we'll see what happens with that. I've already put in an e-mail to my other infusion company (where I get my hydration from) about possible alternative ways to get the treatment - they know of some other options and I'm hopeful/optimistic that I'll get the treatment somehow, I just don't know how long it will take or how many hoops we'll have to jump through to get it. (By the way, if you are a Lyme disease patient or would like to help fight back against the problems from the IDSA guidelines, please go sign the petition on the Lyme Disease Association website.)
Okay, so that's the long, frustrating part of the day. The rest of the appointment with Dr. Bock was pretty uneventful - he's happy my labs are better and he thinks the Primaxin may be part of the reason for that. He thinks I'm looking a little better and not as pasty as I do sometimes apparently. We discussed the other treatments he would think of for me next if I can't get the Primaxin, none of which are covered by insurance and all of which are expensive so I don't know about any of them. Other than the appointment, the rest of the day involved A LOT of sleeping. If you read here regularly, you might remember how I spent most of the day on my first Saturday in Oregon sleeping and trying to stay awake but falling back asleep constantly. Well that was more or less how today was. I slept most of the way to Dr. Bock's, then I slept a good deal of the way to my aunt and uncle's house where I promptly set myself up on the couch and fell asleep again for about two hours, I woke up when my aunt got home and we had dinner and then I slept most of the way home. And I'm still exhausted so I'm headed to bed. It was very nice seeing my aunt and uncle and I'm looking forward to seeing them again in four weeks on the way back from my next Dr. Bock appointment and in five weeks for Thanksgiving (and they were really happy to hear my sister is coming home for Thanksgiving).
So that's about it for me tonight. If you could maybe send some good insurance thoughts my way in the next week or so I would appreciate it. I just really hope I don't have too long of a lapse in treatment because I don't know what will happen during that time as well as how I'll tolerate it when I go back on. Thanks so much for stopping by! Please keep Kelly, Heather, Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. And I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Wednesday, October 18, 2006 11:59 PM EDT
--Martin Luther King, Jr.
Hi Everyone,
Sorry for no update last night. Somehow I went to bed and completely forgot about updating until I woke up this morning. Nothing too big happened yesterday anyway - slept in a bit, went to work, taught my theater classes, went to choir rehearsal, stopped at the grocery store, came home and had some dinner and more or less collapsed. Today was somewhat similar - slept in a bit, went to work, ran some errands after work, came home and had some dinner and more or less collapsed. I haven't been feeling very well the last few days. I've been having stomach troubles so I'm sticking to easy foods and I know I'm not getting in enough throughout the day but hopefully this won't last too long. I do have some good news though - yesterday I got the results of this week's labs and they look great! I hadn't had labs in two weeks since my infusion company screwed up sending the lab-in-a-box kit to Oregon but the change from two weeks ago was amazing. My hemoglobin jumped from 10.6 to 12.7, my hematocrit went from 34.4 to 41.3, and my alkaline phosphatase is at one of the highest numbers I've seen it at - 56! My white cells are a very healthy 6.2 - possibly the highest (good high) that they've been at least recently and everything else just looks great. There's only one thing that's low and it's just a borderline low (my mean cell hemoglobin concentration (MCHC) which was 31, normal is either 32-36 or 31-37 depending on where you look - my lab says 31-37 is normal but then it says my 31 was low so I'm not sure what that's about). So I guess the iron supplement has kicked in which is great! I just wish I was feeling a difference in my energy level but I'll take a change in my labs! Tomorrow is my appointment with Dr. Bock and it will be a long day so I better get to sleep. Hopefully I'll sleep some in the car, too, but I often don't for one reason or another so I won't count on that. I have all day Friday and Saturday to recover, though, so that's good. Hopefully Dr. Bock will get all the Primaxin stuff squared away so I won't have too long of a lapse in treatment (although I am enjoying having an easier schedule for medicine). Oh, and I almost forgot, my older sister is officially coming home for Thanksgiving!! Yay!! We were trying to plan everything and book her tickets before the price went up and she just had to check with her new boss (she's changing jobs at the end of the month) to make sure she could get the few days before Thanksgiving off. So we got the word today that it was a go and we jumped on the tickets and they ended up being even less than we thought! I'm so looking forward to having her home for a little while and I know she's looking forward to coming home, too. This is her first time coming home for a holiday since she moved to Oregon in the fall of 2002 (she's been home other times - mainly for her wedding in 2004).
Thanks so much for stopping by! Please keep Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. And I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you're all having a good week!
Tuesday, October 17, 2006 1:12 AM EDT
And to make an end is to make a beginning.
The end is where we start from."
-T. S. Eliot
Hi Everyone,
I'm about to go to bed but wanted to post something (I seem to be having trouble getting used to a nightly updating schedule after my trip so if I miss a night it's probably because I forgot rather than that something's wrong). Today was okay but pretty long. I slept in until 11am and only woke up/got up then because I had set my alarm to go off then. I'm trying really hard to adjust to this time zone again but of course it's always difficult to reset your internal clock (but maybe I have more trouble than is "normal"?). I mean, it's 1:00am and I'm just starting to feel like it's bedtime so I'm either on a messed up eastern time schedule or still on somewhat of a pacific time schedule. Anyway, back to my day. I spent most of the morning and early afternoon trying to take care of some e-mail things and paying a few bills and stuff like that and eventually got myself off to school but without having done the reading for class. I had a really hard time finding parking on campus but eventually I found a space (after doing a few loops around to each of the lots) and got to class just barely on time. It ended up not mattering that I hadn't done the reading, I still understood all the stuff in class and I'd done the part to hand in so it's all fine. I will catch up on the reading (or at least skim those chapters) in addition to my regular reading for next Monday. The drive up and back to school was pretty easy since I was driving my dad's car (he got a new battery for my car today but some of the screws and nuts holding it in place just kind of turned to dust when he went to unscrew them so those need to be fixed which will require a trip to the shop). Oh, I FINALLY got my state handicapped placard - it was waiting for me when I got back from Oregon and it took a really long time to come. I don't use it all the time but it helps so much when I'm going to big stores, the mall, or places like that and need to conserve my energy for actually doing the shopping and not worry about having to walk a long way to the car. Anyway, when I got home I made some really cooked mashed carrots and mashed potatoes for dinner along with some applesauce (yeah, it sounds like a baby's dinner!) which seems to all be sitting pretty well. I'm sticking to mushy foods and liquids for now in hopes of getting back to kind of a stomach baseline.
Okay, that's plenty and I need to try to get to sleep. Thanks so much for stopping by! Please keep Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. And I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you all had a good Monday!
Sunday, October 15, 2006 9:38 PM EDT
We know each other as we always were. We know each other's hearts.
We share private family jokes.
We remember family feuds and secrets, family griefs and joys.
We live outside the touch of time."
--Clara Ortega
Hi Everyone,
Sorry for no update last night - I was really worn out and just not feeling up to writing anything. I made it home safely, although later than expected due to bad weather in Las Vegas where I had my first layover. We ended up taking off quite a few hours late (around 2:30am PDT) which in turn meant that I missed my original connection in Philadelphia by two hours and had to get on a later flight. I also almost ended up getting a free round trip ticket anywhere in the US by volunteering to give up my seat on that flight to Boston and waiting for the next one but they ended up not needing my seat which was actually disappointing (I wouldn't have minded spending 4 more hours in the airport to get a free trip!). But I got home earlier so it's okay. After getting home in the early afternoon (which felt like the early morning due to the combination of being on pacific time and having flown all night so not knowing what time zone I was in) I unpacked and more or less took it easy all afternoon and evening. This morning I DID NOT want to get up for church and kept hitting the snooze button but I did get up and dressed and ready to go (although I was leaving late) and had the unhappy surprise of my car not starting. My dad was off walking in the reservoir (where he goes walking a lot) which meant his car was gone and my mom had already left so my dad came home and picked me up and I got to choir rehearsal very late but still in time to run through the song a few times and feel comfortable with it. Church was good, I got to talk to quite a few people and it was nice to be back. This afternoon I baked a bit and I've otherwise not been very productive. I really have to get to my school work now (although depending on how I'm feeling tomorrow I may stay home from class to rest - I'm just not feeling quite right and don't want to push myself too hard right away) so I'll end this here. I was really sad to leave Oregon and my sister and felt really torn between there and here but of course it's nice to be home and in my own bed. Sigh. I'll just have to get back to visit my sister again soon.
Thanks so much for stopping by! Please keep Tara, Donovan, Dylan, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. And I'd love it if you took a minute to sign my guestbook so I know you were here. I hope you've all had a good weekend!
Thursday, October 12, 2006 4:55 PM PDT (7:55 PM EDT)
--Ralph Waldo Emerson
Hi Everyone,
Well, today was definitely a better day than yesterday overall but I'm definitely not feeling great (not sure what's going on with me but hopefully it's a short-lived thing, probably partially due to eating too much "normal" food while here at my sister's). This morning when I woke up I was feeling really sick and actually had woken up earlier afraid I was going to throw up (and of course that was while my sister and brother-in-law were getting ready for work so they were showering and in and out of the bathroom so it wouldn't have been good to have needed to camp out on the bathroom floor). I didn't throw up and was able to sleep on and off until about 9:30am with my usual waking up ritual to get my antibiotics hooked up and all that. When I got up I had a horrible headache which had started last night and was making me feel nauseous on top of the regular nausea so I snuggled up on the couch for a little while. After a bath (and some migraine medicine) I was feeling a little better and got out of the house around noon to head downtown on the bus. Somehow I managed to get caught up in a long conversation with an elderly neighbor who was out sweeping the path outside her apartment and she ended up talking for about an hour! It was interesting - she's had an interesting life with lots of travelling - but after about 45 minutes of standing there talking I was feeling pukey and dizzy but didn't want to say anything because I figured she'd worry and prolong the conversation so I managed by squatting down to rummage in my backpack. Anyway, by the time I was on my eay I ended up being early for the next bus so I killed a little time getting some coffee at Starbuck's and had a good afternoon downtown walking around. I didn't do too much shopping but it was a really nice, warm day and I managed pretty well walking around. I'm really worn out now and I'm sure I'll sleep well tonight! Since I was gone all afternoon I didn't do my afternoon antibiotic so I'm still de-accessed until tonight and I'll probably get in another quick shower before then and be nice and clean for my trip home tomorrow night.
Well, my sister's off taking a quick bike ride and should be back soon so I'll wrap this up. I'm hoping to get out again tomorrow - hopefully to the river by the mall to do a little walking and enjoy the scenery but I'll play it by ear and see how I'm feeling. I hope you're all having a good week! Please keep Tara, Donovan, Dylan, Aly, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. And I'd love it if you took a minute to sign my guestbook so I know you were here. I will keep posting updates every few days while I'm here but I'll write updates more frequently and just post a few at a time. Thanks for stopping by!
Wednesday October 11, 2006 6:52 PM PDT (9:52 PM EDT)
--Ray Bradbury
Hi Everyone,
Today was "one of those days". I had such high hopes of actually getting stuff done and getting out to enjoy the nice weather at least for a little while but of course none of that happened. I got up around 9:30am which seems to be my average get-up time here. I camped out on the couch for a while and had some breakfast, watched some TV, nothing too exciting and I was feeling okay at that point but was taking it easy - popped on the Grey's DVDs where I had left off yesterday (I'm now through the 5th disc) and rested for a while and soon I was starting to feel really sick whenever I would try to stand up and walk around. It was a pretty unusual sick feeling for me - the kind of feeling like I might black out, like ACTUALLY black out which I've never actually done but it's not really common for me to even feel that sick nowadays with the saline helping. So a little trip into the kitchen became a mad dash to get back to the couch and it blew off any thoughts of going for a walk in the nice, warm, sunny afternoon. And of course I didn't get any school work done either. But sometimes there are just days like that and it's no big deal - as long as I don't have anything really pressing to get done I don't altogether mind if I have to spend the day camped out in bed or on the couch, it's just annoying. But I'm feeling better now and I hope I'm feeling up to going downtown tomorrow!
Tuesday October 10, 2006 12:22 PM PDT (3:22 PM EDT)
--Mahatma Gandhi
Hi Everyone,
I didn't get around to typing up an update yesterday but it was really far from interesting or exciting so no big loss there. Yesterday I spent the day in my PJs camped out on the couch, never left the apartment, really nothing exciting. I watched a few more episodes of season 2 of Grey's Anatomy (I will get through all of them by the time I leave but I'm only on the 4th DVD and I only have a few more days here with hopes of actually DOING something one of these days), did some stuff on my computer (not any school work...I'll get to it at some point), talked to my mom for a little while in the afternoon, baked some vegan oatmeal cookies out of one of my sister's vegetarian cookbooks and they turned out pretty good and I didn't have to adapt them to get the fat out (and there's a sugar free variation of them that I'll have to try at home). Yeah, that was my day. Today has been very quiet so far. Still in my PJs (although I'm about to go get dressed when I finish this), been watching some TV and taking it easy. My stomach isn't doing great today and I think I need a day of resting it so I'm trying to stick with easy foods. I'm not sure if it's really stomach pain, it feels more like pain at the bottom of my esophagus (like pain at the bottom of my breatbone between my ribs) so maybe it's more reflux type stuff. Either way I need to take it easy with food and I've been spending a lot of quality time with my heating pad. I was supposed to get my lab-in-a-box kit yesterday (fed ex-ed from my local infusion company) but apparently they sent it to my HOME address! Grrr! The reason they had to fed ex it in the first place was that they didn't put it in my initial shipment last week. So now they're fed ex-ing another one out today that should get here tomorrow so my labs are going to be overdue this week - not great but not the end of the world, just frustrating. Anyway, I'm going to get dressed and head over to the coffee shop for a little while (as long as I last) to go online and then quickly to the grocery store to get popsicles and a few drinks before settling into the couch for the rest of the afternoon. My plan is to make tomorrow a school work day and then Thursday I hope to take the bus downtown and spend the afternoon walking around there. It's supposed to get really warm and stay nice for the rest of the week so I'm very happy about that and I just need to GET OUT of the apartment and ENJOY it!
Here are a few pictures from the trip to the vineyards/wineries on Sunday:
This was the view from the first winery we went to, Iris Hill - a really beautiful view.
One area of grapevines - so pretty
Another area of vines from afar.
And this was the second winery we went to - Silvan Ridge - another beautiful place. Unfortunately I didn't take as many pictures here as I did of the first vineyard.
Okay, that's it for me today. I'll go get dressed, hook up my backpack of fluids, and head over to the coffee shop and hopefully have a quiet afternoon. Thanks so much for stopping by to see me! I hope you're all having a good week! Please keep Tara, Donovan, Dylan, Aly, Sarah, Malisa, Heather, and Caity in your thoughts as well as everyone else having a rough time. And I'd love it if you took a minute to sign my guestbook so I know you were here. I will keep posting updates every few days while I'm here but I'll write updates more frequently and just post a few at a time. Thanks for stopping by!
Sunday, October 8, 2006 10:47 AM PDT (1:47 PM EDT)
--Anonymous
Hi Everyone,
Boy, I have to say that the quote up at the top of this entry pretty much sums up my day yesterday. I'm not one to really sleep all day long, in fact I usually have trouble falling asleep during the day. But yesterday morning I got up around 9:30am and within a half hour to an hour felt like I just needed to sleep for a while but I pushed through it. My sister and I went out to the Saturday Market here and to a local art exhibit which was nice but by the time we got back home I was just falling asleep so I went and took a nap and woke up more than 2 hours later - really not like me. And not only had I slept for such a long time but I was still exhausted and proceeded to keep falling asleep curled up in a chair in the living room. It was strange but I just couldn't keep my eyes open and whenever I'd go to rest my eyes I would fall asleep! Today so far I seem to be doing better (*knock on wood*) but it's early yet and I am feeling tired but hopefully it's just my normal tiredness. I just wish yesterday hadn't been a weekend day because I only really have two days to really spend with my sister when she's not working and I'd really like to not be sleeping through them. I'm guessing part of the extra exhaustion is from this cold I'm battling. It seems to be moving and I'm blowing my nose a lot and coughing so I guess that's better than being completely stuffed up but still no fun. Today my sister's friend is coming over and we're going to go to a few wineries (one is having a fall festival or something like that) so that should be fun. I'm not sure how much wine I'll be able to handle but I'm going to see how it goes and at least have a few samples. The wineries are also supposedly really beautiful so if I can't enjoy the wine, I'll enjoy the view and take lots of pictures so all of you can enjoy the view, too! That's it for me today. I'll probably update again tomorrow from the coffee shop (I'll have to take a picture of that so you can all see where I'm writing from!) - today I'm able to get a weak internet connection from one part of the living room so I wanted to put up something.
I hope you're all having a good weekend! Please keep Tara, Donovan, Dylan, Aly, Sarah, Malisa, Heather, and Caity in your thoughts as well as everyone else having a rough time. And I'd love it if you took a minute to sign my guestbook so I know you were here. I will keep posting updates every few days while I'm here but I'll write updates more frequently and just post a few at a time. Thanks for stopping by!
Sunday, October 8, 2006 10:47 AM PDT (1:47 PM EDT)
--Anonymous
Hi Everyone,
Boy, I have to say that the quote up at the top of this entry pretty much sums up my day yesterday. I'm not one to really sleep all day long, in fact I usually have trouble falling asleep during the day. But yesterday morning I got up around 9:30am and within a half hour to an hour felt like I just needed to sleep for a while but I pushed through it. My sister and I went out to the Saturday Market here and to a local art exhibit which was nice but by the time we got back home I was just falling asleep so I went and took a nap and woke up more than 2 hours later - really not like me. And not only had I slept for such a long time but I was still exhausted and proceeded to keep falling asleep curled up in a chair in the living room. It was strange but I just couldn't keep my eyes open and whenever I'd go to rest my eyes I would fall asleep! Today so far I seem to be doing better (*knock on wood*) but it's early yet and I am feeling tired but hopefully it's just my normal tiredness. I just wish yesterday hadn't been a weekend day because I only really have two days to really spend with my sister when she's not working and I'd really like to not be sleeping through them. I'm guessing part of the extra exhaustion is from this cold I'm battling. It seems to be moving and I'm blowing my nose a lot and coughing so I guess that's better than being completely stuffed up but still no fun. Today my sister's friend is coming over and we're going to go to a few wineries (one is having a fall festival or something like that) so that should be fun. I'm not sure how much wine I'll be able to handle but I'm going to see how it goes and at least have a few samples. The wineries are also supposedly really beautiful so if I can't enjoy the wine, I'll enjoy the view and take lots of pictures so all of you can enjoy the view, too! That's it for me today. I'll probably update again tomorrow from the coffee shop (I'll have to take a picture of that so you can all see where I'm writing from!) - today I'm able to get a weak internet connection from one part of the living room so I wanted to put up something.
I hope you're all having a good weekend! Please keep Tara, Donovan, Dylan, Aly, Sarah, Malisa, Heather, and Caity in your thoughts as well as everyone else having a rough time. And I'd love it if you took a minute to sign my guestbook so I know you were here. I will keep posting updates every few days while I'm here but I'll write updates more frequently and just post a few at a time. Thanks for stopping by!
Friday October 6, 2006 10:40 AM PDT (1:40 PM EDT)
Hi Everyone,
I'm here at the coffee shop across the street from my sister's apartment complex sipping a cup of coffee with quite a bit of hubub going on around me. When I was here in June this place had just re-opened after rennovations and it was a nice, quiet place to sit and get online stuff done but now it's full of people so I guess it's gotten really popular! Maybe it's just the time of day - maybe the afternoon would be less busy so I'll have to come at different times to see when it's most peaceful (I really don't do that well with lots of commotion when I'm trying to think and on top of that I also have another fairly bad headache today - obviously not as bad as yesterday since I'm up and dressed and out of the apartment but it's still not much fun). Before I go on into any kind of update about myself, I need to ask for you to send as many prayers, good thoughts, positive vibes, whatever you want to send over to my most wonderful friend Tara who is having a really rough time right now. She needs lots of thoughts and prayers so she can start feeling better and not have any more excitement for a while. And on top of everything she's dealing with being in the hospital and not doing well in that regard, yesterday was her aunt's funeral and I know that must have been an extra difficult day for Tara and her family so please keep her in your thoughts.
I don't have a whole lot to update about. I wrote a rather lengthy update yesterday which will be posted underneath this (to keep everything in the right order once it goes into my journal history). Last night I had talked to my mom twice - the first time was about this IRS tax return thing that I'm having to deal with about my taxes last year (apparently they didn't receive my pin number signature when I did my taxes online so now we're trying to figure some confusing stuff out) and the second time was because, in the process of looking for a med in my room that I need them to send out to me (I didn't pack enough), my dad noticed that my VCR was on and he turned it off...in the middle of it taping Grey's Anatomy! My mom called me right away and we figured it out and got it taping back on the programming I had put in but I know I lost at least a few minutes of the show so hopefully it wasn't at a really crucial part! (I think it was probably about halfway through the show so it shouldn't have been a cliffhanger or anything.) I would have tried watching it here when it came on later (the whole time difference is so confusing when I talk to my mom while shows are on there and then have to realize they aren't on here) but I was more or less falling asleep and my sister was watching TV with me so I didn't try.
I am definitely in full-fledged cold mode - stuffy nose, blowing my nose all the time, coughing a lot, feeling like my brain is full of stuffing (which may not be the cold, lol), and generally just feeling really worn down and tired. I've been falling asleep on the couch early but I have to stay up to do my Primaxin which I've been starting a little early lately so I can get to bed a little earlier. It's not that I'm having trouble with the time change, although I'm sure that's part of it. I'm starting to fall asleep at like 8:00pm here which is only 11:00pm at home - I'm routinely up until about midnight or later and even then I'm not as tired or foggy as I have been right after dinner here. It's weird but probably a combination of this cold, the time change, and recovering from the trip out here. Other than the cold and the headaches and being exhausted I'm doing okay. My stomach seems a bit better than it was so that's good. Now I'm just going to finish this up, finish checking my e-mail, check in on a few CB friends (sorry I've been so bad about signing guestbooks lately) and head over to the grocery store to pick up a few things I couldn't find yesterday and then go back to my sister's apartment and spend the rest of the day camped out on the couch again. But maybe I'll give Grey's a rest today and watch something else (see the update below this for info about my Grey's overdose).
I hope you're all having a good week and a great Friday! Please keep Tara, Donovan, Dylan, Aly, Sarah, Malisa, Heather, and Caity in your thoughts as well as everyone else having a rough time. And I'd love it if you took a minute to sign my guestbook so I know you were here. I will keep posting updates every few days while I'm here but I'll write updates more frequently and just post a few at a time. Thanks for stopping by!
Thursday October 5, 2006 5:15 PM PDT (8:15 PM EDT)
Okay, so I think I may be overdosing on Grey's Anatomy. I seriously spent all day working my way through season 2 on DVD (I just finished the 3rd DVD, but I didn't watch all three of them just today...I watched some yesterday). I'm to the point now where my thoughts are forming themselves into commentaries resembling Meredith's voice-over commentaries. Granted, today I'm recovering from being up for close to 24 hours yesterday and making a trek across the country AND I'm fighting off a cold AND my stomach is feeling messed up and...well...I'm just feeling pretty cruddy. So I don't feel bad for spending the whole day in my pajamas, sacked out on the couch with my heating pad on my belly and my computer propped up on two footstools (one on top of the other so they're a little taller than the couch) and the Grey's DVDs more or less constantly playing. In fact, it's kind of nice to spend the day this way, but maybe it's time to take a break before I start having conversations with my sister and brother-in-law about all the happenings at Seattle Grace Hospital which wouldn't make much sense to them since they don't watcn Grey's. I have no doubt that I will have made it through all the season 2 episodes and special features by the time this vacation is over. In fact, it wouldn't surprise me all that much if I made it through them more than once (although, believe it or not, I do hope to actually make it out of the apartment at some point during this trip - the closest I got today was looking out the peep hole in the door and THINKING about opening it up to see what the weather was like). But I wonder how much is too much. I guess I may find out for myself.
Anyway, other than having Grey's on the brain and feeling really cruddy I'm doing okay. I woke up this morning with one of the worst headaches I've had in a long time but it's a lot better now after taking meds for it and resting (horizontally) for the whole day. It was the kind of headache that you can feel there before you even open your eyes, and when you DO open your eyes and you see the light it just hurts more, and standing up or walking around or going from a lying down to a seated or standing position just makes it throb. Not to mention the fact that I realized last night that I forgot to make sure I had enough of ALL my meds, somehow I managed to overlook my Neurontin which I take to help me sleep but also as a headache preventative med so I either need my parents to mail me more (I get a 3-month supply at a time through my mail-order prescription plan so I have a lot at home, just not with me) or figure out a way to manage with what I have (I haven't counted how many I have but I'm guessing only enough to last me half the trip or the whole trip with only one dose a day - not sure which would be better...or rather which would be less bad). My packages of medical stuff all got here safely and my antibiotic infusion company (because I just have to have things complicated by having two infusion companies) sent me EVERYTHING - I mean a new IV pole, a new sharps container, a new box of gloves (which I don't use anyway), but of course they forgot to send a lab kit and of course I forgot to bring my folder with their contact info and of course since I'm in a different time zone, by the time I really think about trying to call it's already after 5:00pm there. But I'll get it one way or another...I hope. I really can't go a whole week without labs, that would be bad. (In a pinch, I could get my parents to mail me the extra lab kit I have a home but that would be a pain and extra expense for us rather than my insurance company.) But everything else got here and I have a whole room full of boxes of medical stuff. I seriously didn't realize just how much medical stuff I require for a 10-day period until now when I see it all in big boxes in a small-ish room. For some reason my antibiotic infusion company also sent me a weird number of huber needles and y-connectors and dressing change kits - 4 needles but only 2 y-connectors and 2 dressing change kits. I could understand if it was the other way around (with less needles than the other stuff) and I could conceivably use the needles without the same number of y-connectors, but I really can't use more needles than dressing change kits. So I'll have to ask about that when I call, too.
Okay, well I think I'm going to take a break from Grey's and find something else to do until my sister and brother-in-law get home from work (my brother-in-law should be home fairly soon). Maybe a nap is in order. I wish I felt a little better so I was up to reading (I brought a few books with me that I've been wanting to read but havn't had a chance, including "Wicked", but I'm sure I'll get to them sooner or later when I've recovered a bit more from yesterday).
Wednesday, October 4, 2006
Around 10:30 AM EDT (but flying over time zones so who knows what the actual time is)
--Dr. Seuss
Hi Everyone,
I'm writing this update from about 28,000 feet on the plane from Boston to Phoenix - the first of two flights to get me out to my sister in Oregon. The flight so far has been uneventful which is good. And getting through security wasn't as difficult as I thought it might be, but I also opted to not even attempt to bring on any liquids in my carry-on other than my homeopathic nausea med (my saline and antibiotics are being shipped out there by my two infusion companies and I packed up the rest of the last shipment of antibiotics and supplies in my suitcase which was quite a feat, let me tell you - no room for toiletries so the store will be one of my first stops when I get to my sister's). I thought this would be a good time to write that update about my doctor's appointment yesterday that I said I'd post today (although it might be tomorrow depending on when I feel up to sitting in the coffee shop across the street from my sister's apartment so I can get online). The appointment with Dr. H (PCP) went well and she was able to suggest some things and take care of a few things I need or need done. We talked about my reflux being bad and she looked in my throat and said it's very red and raw looking so that's not good. She's having me double my Pepcid AC dose (that I take at night - I also take Prilosec in the morning) and she suggested that when I get back from this trip I should try to put my bed on an incline (like Diana's bed at home but hers is inclined for different reasons). So I'll try that and see if it helps and gives me some relief from the awful sore throats I wake up with most mornings now. And of course she hopes that my GI will get back to me soon with some other suggestions.
We also talked about my anemia and she said there's a liquid iron supplement that I should keep in mind in case my stomach starts having trouble with the pills but so far so good. I didn't have this week's lab results in time for my appointment but I got them when I got home and more things are low now including my hematocrit and some other things also related to anemia but my hemoglobin isn't dropping anymore and has come up 0.3 in the last month so that's good I guess (well, good at least that it's not dropping lower, not sure the tiny improvement is really much of anything to count as significant). We talked a bit about foods to get more iron in but she didn't have a lot of suggestions there since I don't eat red meat and generally have more trouble with meats and proteins than other foods so I don't eat that much meat in general. Let's see, what else... Oh she'll get in touch with Dr. Bock about writing the letter of medical necessity for continuing the Primaxin (antibiotic) and hopefully that will get to my infusion company and then my insurance company by the time the initial month-long approved treatment runs out (which is the 11th). If it doesn't happen quick enough, I'll have a lapse in treatment which isn't the end of the world but it would be much better to avoid that. I also told her that I feel I'm tolerating the Primaxin enough to up the dose from 500mg to 750mg which makes for longer infusions and will be harder on my body but I really need to get up to at least that dose as quick as possible because it wasn't until I increased the dose last time that I started to see a difference. So hopefully getting to the increase fairly quickly and continuing with my pre-medication with Zofran and Phenergan will provide some improvement with minimal side effects (mainly I'm talking about nausea which has been the hardest side effect of Primaxin for me to handle but this time around I'm doing pretty well as long as I make sure to take the Zofran and Phenergan about an hour before the infusion and don't run it too fast). I think that was pretty much the whole visit. It's interesting to see that when I'm in her office (or some other doctor's offices) my blood pressure is more normal or low compared to what it is when I'm at Dr. Bock's office. I was about 120/68 in Dr. H's office yesterday and at Dr. Bock's I'm usually somewhere between 140/80 and 130/70 but since the bottom number is never high I think it has more to do with WHEN they're taking the bp (and maybe I'm more anxious in his office than in Dr. H's?). At Dr. H's office, there isn't a nurse to check you in so she comes and gets you from the waiting room, you go into her office and sit and talk for a while and THEN she does the exam and takes your bp whereas at Dr. Bock's they take your bp right after you've stood up, walked down the hall, gotten weighed, and gone into the exam room and hopped up on the table. I think all that moving around just throws my body off and causes the higher bps. Just an interesting observation.
After my appointment with Dr. H I swung literally around the corner to the compounding pharmacy that I get my Domperidone from. Usually the ship it since they're in Newton which is an hour or a little more away from me but this time it worked out great for me to pick it up there - saved on shipping costs, I needed it FAST (I only called them yesterday morning for them to call Dr. R's (GI) office to get a refill authorized for me) to take with me on this trip, and I was there literally around the corner from them for my appointment with Dr. H. It was cool getting to see the actual place and all the supplements and homeopathic remedies and everything that they carry. It looks like it will work out well for me to pick it up there regularly, too, since I'll be seeing Dr. H every 4 weeks (so I'm alternating with Dr. Bock and Dr. H every 2 weeks to check-in and make sure things are okay while on the IVs). And my productivity didn't end there. After that I stopped at Whole Foods Market (one of my favorite stores) since it's on the way home and I got a few supplements I needed along with some food that I will hopefully get a chance to eat on this trip (my stomach isn't sure what it wants and with no liquidy foods I'm being very careful about what I eat). I also got some smallish containers of goat's milk to try (in regular and chocolate) but I didn't try them before I had to leave this morning so that might just be wasted money, especially considering that the regular goat's milk container says the sell-by date was a few weeks ago - I really should check that before I buy something. I'm not sure that I would tolerate goat's milk anyway because it's high in fat - even higher than whole cow's milk - but I wanted to give it a try. And then after that I stopped at Vitamin Shoppe which was on the way home and I'd never stopped in at. I needed a few other supplements that I wasn't able to find anywhere else but they had them at the Vitamin Shoppe. It was seriously an amazing store - huge with nothing but supplement bottles everywhere. It's nice to know that it's there near Dr. H's so if I need supplements I can just stop in there on my way home from my appointments with her. Then of course I came home and did a mad dash to get my Primaxin infusion in before I had to go teach my theater classes and then had to run to the bank to deposit some checks via ATM and then to the pharmacy to fill a script from Dr. H today and then home to madly pack! I got to sleep around 11:00 or 11:30pm and was up at 3:00am - not enough sleep for a functional Annie! But I napped a bit on the plane and I plan to take a nap this afternoon so hopefully I'll adjust to the time difference fairly easily.
Well, that seems like a pretty good update. I think I'll watch an episode of Grey's Anatomy on my computer now (I'm only on the first DVD of the second season - I need to take some time to work my way through all the DVDs which could take a while but I'm not complaining!). PLEASE keep Tara in your thoughts and send prayers, good thoughts, positive energy, whatever you have her way as she's having a really rough time right now and needs to feel better SOON!
UPDATE 9:33 AM PDT/12:33 PM EDT
Well, I was happy to find that the Phoenix airport has free wireless internet! So I'm able to post this earlier than expected and also check in on some people and check my e-mail, etc. - all the stuff I couldn't do this morning since I already had to get up at 3:00am and adding any other tasks onto the necessary ones of getting dressed, brushing my teeth, packing up the few things I needed to pack, etc. would have just made for an even more insane wake-up time. I'm happy to report that the flight here was very smooth. And here in the Phoenix airport I was able to find a pretzel place that has fat-free soft pretzels so I got one of those and dipped it in salt (it wasn't salted either) since I certainly need the extra sodium for the rest of the trip! The pretzel unfortunately doesn't seem to be sitting great but I don't know if it's the pretzel itself or my stomach just being messed up from flying. I also don't think I'm staying hydrated enough so I will buy plenty of drinks here for the next (and last and shorter) leg of my journey. I still have plenty of snacks with me so if I keep nibbling at those I should be fine for the rest of the trip. And in 4 hours I'll be in Oregon saying hi to my sister! I'll stop there since this whole posting is getting VERY long. I'll update again tomorrow or the next day depending on when I get out to the coffee shop to go online.
PLEASE keep Tara in your thoughts and prayers and go over to her site to say hi and let her know you're thinking about her! Also keep Donovan, Dylan, Aly, Sarah, Malisa, Heather, and Caity in your thoughts as well as everyone else having a rough time. I hope you're all having a good week so far! And I'd love it if you took a minute to sign my guestbook so I know you were here.
Tuesday, October 3, 2006 10:29 PM EDT
What's impossible
Well they forgot
This world keeps spinning
And with each new day
I can feel a change in everything"
--Jack Johnson
Hi Everyone,
I'm heading to bed right now and really have to get to sleep FAST because I have to be up at 3:00am - definitely NOT looking forward to that but I'm really hoping I'll sleep most of the trip out to Oregon. Today was okay but very long. I'll do a full update on it (mostly my appointment with Dr. H, my PCP) tomorrow but I just wanted to post a little something before my day of travelling. I'm pretty much packed up (just a few things left to pack in the morning) and unfortunately I'm going to have to buy all new toiletries when I get out there because there just isn't enough room in my suitcase to pack any of them along with all the IV supplies I packed into my suitcase instead of my backpack. Hopefully tomorrow won't be too rough and I think I've figured out the eating/liquid restricion stuff at least to an extent where I'll manage okay with the trip - I'm bringing the solid foods I can generally tolerate (fat free homemade muffins, goldfish, pretzels) and coung to some extent on being able to pick up a smoothie or something similar in the airport either in Boston or during my (shortish) layover in Phoenix.
Please keep Tara, Donovan, Dylan, Aly, Sarah, Malisa, Heather, and Caity in your thoughts as well as everyone else having a rough time. I hope you all had a good weekend! And I'd love it if you took a minute to sign my guestbook so I know you were here. Thanks!
Monday, October 2, 2006 10:59 PM EDT
It's gonna be a good day, just wait and see
It's gonna be alright, cause I'm alright with me
It's gonna be, it's gonna be, it's gotta be..."
--Jewel
Hi Everyone,
First of all, please keep my awesome friend Tara in your thoughts. She was home for a little while last night but had to be re-admitted to the hospital this morning and is now dealing with sepsis. So please go over to her page and leave her some good thoughts!
This is going to be short(ish) since I have to spend a while gathering some of my stuff for my trip together since tomorrow is going to be one BUSY BUSY day! But I'll start with today first. Today was my school day and that went fine. I didn't end up sleeping in because I had to draw labs, de-access, take a shower, and finish my homework. I also had to handle a phone call from my local infusion company and talk to the pretty clueless supply coordinator who for some reason was thinking I was going to BRING all my IV supplies with me to Oregon rather than the much more logical solution of them sending the stuff out there (or what makes more sense to me, to have the branch out THERE send out my supplies on Wednesday). So I got that sorted out and did the other things I needed to do before heading off to school. School was fine but I was definitely foggy. The good thing about that, though, is that it seems the Phenergan isn't making me into as much of a zombie as it used to so maybe my body is getting used to that side effect!
Health-wise today things were okay overall. My stomach has been okay as long as I stick to fairly easy foods. I tried out canned peaches tonight and that seemed to be okay so hopefully canned fruit will be another thing I can add to my list of staple foods! The reflux has been okay so that's good, too (I think sticking to my "safe" foods for the most part has helped quite a bit with that). I've had a bad headache coming and going but it doesn't seem to be getting any worse right now so hopefully I'll just sleep it off and wake up without it. My hips have been bothering me but that could be partly from sitting in positions that put too much stress on them (like sitting Indian style on my bed all the time with my laptop).
I'm getting a little concerned about handling the flying on Wednesday not because of the flights themselves (usually I can handle flying fairly well - the take offs and landings are always a bit rough but I handle it okay). But I'm worried about how I'm going to handle food for the trip out there. I can't bring any liquids from home in my carry-on luggage (except for travel sized toiletries - really, that's not something I'm worried about getting out there). There are some special exceptions for medications, obviously, so I'm not really worried about those. It's just the food aspect. No babyfood is allowed for anyone not travelling with a baby so that's out. No applesauce, I assume no jello, no soups or anything like that, no liquid nutritional drinks, etc. I'm not sure what to do since my diet lately consists of mostly mushy or liquid foods and although I may not feel much like eating on the flights, I know I have to MAKE myself eat SOMETHING during the 10 hour trip. I guess I'll bring the non-liquid foods I think I might do the best with and just play it by ear but this is just one more hassle to deal with when travelling. As if it wasn't hard enough to travel when dealing with chronic illnesses!
Okay, that's enough for tonight. I thought this was going to be short! Guess not! Tomorrow will be a long day. I have an appointment with Dr. H (PCP) at 11:30am so I have to leave at 10am for that. Then theater classes from 3:30-6pm and I have to fit in some errands and...oh yeah, PACKING! And then I have to be up and out the door around 3:30am on Wednesday. Yes, you saw that right, 3:30am. How much you want to bet that that means I won't get any sleep tomorrow night? Please keep Tara, Donovan, Dylan, Aly, Sarah, Malisa, Heather, and Caity in your thoughts as well as everyone else having a rough time. I hope you all had a good weekend! And I'd love it if you took a minute to sign my guestbook so I know you were here. Thanks!
Sunday, October 1, 2006 9:48 PM EDT
Goodness or meanness, life has one warning
It echoes all over the world..."
--Dar Williams"Every time you choose one more morning
Goodness or meanness, life has one warning
It echoes all over the world..."
--Dar Williams
Hi Everyone,
I can't believe it's October already. Where did the month of September go?? It seems like it was just yesterday that the semester was starting and I was easing back into life after my vacation in Maine. Seriously, it's crazy how fast time seems to go sometimes! Only 2 ½ days until I'll be in Oregon! Yay! I have quite a bit of stuff to get done before I leave very early on Wednesday morning but I should be able to get everything done if I plan right (and don't have any major problems). Today was fairly long and of course I didn't get to sleep in because of choir rehearsal before church but it was okay, I was just really groggy for a while this morning and I didn't get out of bed until about 15 minutes before I had to leave. On mornings when I have to be up fairly early it helps me to stay in bed while I'm going through the waking up process (well, the beginning of the process at least) and I spend that time mentally going through my clothes and figuring out what to wear so I don't have to try on a dozen different outfits before I find something good to wear. Anyway, church was good and very moving this morning and during coffee hour I got to talk to quite a few people which was nice. I got up during Joys and Sorrows and shared that I'm going to Oregon on Wednesday and a lot of people wished me safe travels (which I may need, considering the new regulations of what you can carry on (not sure what the regulations are on oral meds, does anyone know?) and I'll be starting my trip back home on the evening of Friday the 13th...not that I'm superstitious or anything). After church I stopped in at the grocery store for popsicles, soup, and a few other odds and ends. I got some canned peaches and pears to try out and hopefully I'll handle them okay because it would be great to be able to eat a little more fruit (right now I'm more or less only able to handle applesauce and babyfood fruit when it comes to fruits). Then the rest of the day was spent baking (I made pumpkin muffins, blueberry muffins, and banana bread - it really wasn't as much work as it seems, they were all made using the same basic quick bread recipe and just tweaked for each kind), cleaning up my room and doing homework. I made a dent in cleaning my room but I still have quite a bit to do before it's as clean as I'd like it (which I'm hoping I'll be able to do before I leave for Oregon). I'm not done with my homework because as I was trying to finish reading the last article for class (and then write my one page reading question response) I started getting really bad abdominal pains and had to immediately lie down with my heating pad on my stomach. It took me by surprise because I didn't eat anything weird or very adventurous right before it happened - I'd had a cup-a-soup and a small container of pear babyfood - and I hadn't had this kind of pain for quite a while (at least not to this intensity) so I'm still lying down and taking it easy with my heating pad but thankfully the pain has subsided.
Speaking of my stomach and eating, today has been a better day when it comes to sticking to "safe" and "easy" foods - mainly soup and babyfood - but I made the mistake of having a little bit of dry granola in the afternoon and felt yucky for a while (maybe the pain was delayed pain from that?) so I won't be eating that for a while. I've been refluxing a lot but it's not quite as severe as it can be so although it's more frequent, it hasn't been causing as much raw throat pain as other days. My easy food diet will continue for another few days at least (probably until I'm out in Oregon if not longer). When I get out to Oregon I'm going to have to do some shopping and probably make some soup or something to be a staple food for me. And I'll try to pack some babyfood so I don't have to go buy more of that out there (I'll put it in my suitcase to avoid any issues with security). Not much else to report here - still just trying to lay low (as much as I can) and I thankfully seem to be tolerating the Primaxin pretty well, well enough so that I may let Dr. Bock know that I think I can handle an increase in the dosage. I see Dr. H (my PCP) on Tuesday morning and she has to get in touch with Dr. Bock to let him know how I'm doing so he can write a letter to my insurance company stating the medical necessity for continued treatment. Whew! Wish it didn't have to be such a chain to get that info to my insurance company but hopefully it won't get messed up along the way or delayed or anything.
Well, I need to get my evening dose of Primaxin ready and hook up to that and my fluids to run overnight and hopefully I'll feel well enough to sit up and finish my homework while the Primaxin infuses. If not, there's always tomorrow morning (although I'd rather have the extra sleep instead). Tomorrow is school day which means a pretty long day but I'll manage. Please keep Tara in your thoughts as she continues to recover from her gallbladder surgery but at least she's home now! Also keep Donovan, Dylan, Aly, Sarah, Malisa, Heather, and Caity in your thoughts as well as everyone else having a rough time. I hope you all had a good weekend! And I'd love it if you took a minute to sign my guestbook so I know you were here. Thanks!
Saturday, September 30, 2006 11:10 PM EDT
They sparkle and shine when the sun is out,
but when the darkness sets in,
their true beauty is revealed only if there is a light from within."
--Elizabeth Kubler-Ross
Hi Everyone,
I'm done with my long week of working everyday!! Yay! I survived and I'm so glad it's over but getting my paycheck next week will be very nice. This morning was a pretty early morning since I had to be at work at 10am. I didn't get school work done at work unfortunately but did have some productive time spent on replying to e-mails that have been sitting in my inbox for weeks, or in some cases months. After work I came home and decided to make some soup. It's so easy to just throw things in a pot with some stock (I used vegetable stock this time because we happened to have more of that) and water and seasonings and voila...soup! I think I need to keep in mind that pasta expands and while it might not look like very much, it will end up being a lot when it's done (especially when the soup cools down). Other than that I've basically been resting, watching some TV, doing various things online, making sure my packing list for my trip to Oregon isn't missing anything, and otherwise not being particularly productive. Health-wise things have been so-so today. I didn't do as well today about sticking to easier foods and I'm definitely feeling the affects of it now (it always gets worse later in the day). Tomorrow is another day and I'll try to force myself to stick with the liquids and really mushy foods (and the soup I made today more or less falls into that category since I cooked the veggies for a really long time). I had a bad headache coming and going this morning but thankfully it seems to have given up. I've been refluxing quite a bit this afternoon and tonight. Some days are worse than others but I'm starting to sense some problems with my throat because of it so I really hope it doesn't get any worse before I hear back from Dr. R (GI).
Well, that's it for me tonight. I have church in the morning and I have to go in early for choir rehearsal at 9:30am. I have to spend the rest of the day finishing my homework and getting started on cleaning up my room (I want it to be CLEAN before I leave for Oregon on Wednesday and also so I can decorate for Halloween/Autumn). Please send some extra prayers and good thoughts to my awesome friend Tara - she's having a rough time recovering from gallbladder surgery yesterday. Also keep Donovan, Dylan, Aly, Sarah, Malisa, Heather, and Caity in your thoughts as well as everyone else having a rough time. I hope you all had a good Saturday!
Friday, September 29, 2006 11:32 PM EDT
So we can see the brighter side
And giving what we've been denied
Is all a seed need sow
All a heart need know."
--Lori McKenna
Hi Everyone,
Only one more day of work left! Yay! Actually my boss is already back from vacation and she stopped in to work this afternoon but she's taking the rest of the weekend off (which I knew was the plan). Anyway, today was another pretty long but overall okay day. I really need to have a few days of being able to sleep in LATE to recover from this week and unfortunately tomorrow and Sunday are not going to bring that (and for that matter, Tuesday and Wednesday I have to be up early). Work was quiet but with a few more people coming in to see the show than most other days this week. Someone actually bought one of the photographs in the current (members') show. And I did actually get quite a bit of my homework done with plans to get the rest of it done tomorrow morning at work (if I'm not too foggy). After work I ran a few errands - returned a CD clock radio to CVS (I bought it yesterday but it turned out to not be quite what I wanted) and then went to Wal-Mart and got a better one. It's amazing how big the time screen is on it - I mean seriously, it's HUGE (I'll have to take a picture of it sometime). Other than that I've just been resting, watching some TV, had a dinner of nice mashed up food (mashed potatoes, mashed up carrots, and applesauce) which was actually very tasty. I did okay today as far as my stomach and eating goes - mostly liquids and mushy food. I think I need a few more days of this easy diet before I try eating more normally again. I e-mailed my GI dr. about the bad reflux I'm still having but didn't hear back from him today - hopefully he'll get back to me early next week with some good ideas of how to prevent the reflux or at least protect my esophagus from getting damaged from the acid. I'm already on pretty strong meds for it but they don't seem to be taking care of it. I'm sure my GI will have some suggestions or thoughts about it.
Well, this Primaxin infusion is making me feel pretty nauseous so I'm going to just curl up and watch TV until it's finished. Please send some extra prayers and good thoughts to my awesome friend Tara - she's having a rough time recovering from gallbladder surgery yesterday. Also keep Donovan, Dylan, Aly, Sarah, Malisa, Heather, and Caity in your thoughts as well as everyone else having a rough time. I hope you've all had a good week!
Thursday, September 28, 2006 11:39 PM EDT
Standin' on the edge of something much too deep.
It's funny how we feel so much but we cannot say a word.
We are screaming inside, but we can't be heard.
--Sarah McLachlan
Hi Everyone,
Well, this week is definitely taking a lot out of me. I'm glad my boss only goes away once or twice a year so I don't have to work so much on any kind of a regular basis! Yesterday was okay but a long day and today was pretty much the same. Not a lot of exciting stuff to report about. I got the results of my weekly labs yesterday and nothing much is new there - still low hemoglobin and some other related things but my WBCs are fine and my alkaline phosphatase is possibly the highest it's been in the last few years (that always tends to drop quite a bit while I'm on treatment or otherwise not feeling well so it will be interesting to track it with this treatment). Health-wise things are a bit like a see-saw from day to day and within a day (or even hour or minute sometimes). I'm exhausted, not getting enough sleep what with working so much and still adjusting to the Primaxin infusion schedule. My stomach is...okay but I'm definitely not being strict enough with myself about holding back on eating "normal" foods (not really normal to most people but more normal than my safe foods) and I'm going to take tomorrow to just stick to liquids and see how I'm doing after that (I know I said I was going to do that earlier this week but it just didn't work out that well). It's hard to be at work for four hours, be bored, and to avoid snacking on things but I need to figure something out to avoid that as much as possible. Speaking of work, I can now add that to the (ever growing) list of places I've accessed Winnie (my port). I de-accessed this morning after my Primaxin infusion to shower before work and wouldn't have had time to numb before accessing if I accessed before going to work so I just brought everything along with me to work and set myself up at a table in the theater and it worked out fine but I was worried someone was going to come in to the office and need something while I was in the other room accessing. That didn't happen but made me move pretty quick with things just in case. This evening was great with Grey's Anatomy and ER - great Grey's, not the greatest ER but it was okay.
Okay, I'm nauseous (stupid me for eating too much this evening - you'd think I have no will power!) and tired and need to go to sleep. Please keep Tara in your thoughts - she's in the hospital recovering from gallbladder surgery and she could use a lot of good thoughts and well wishes! Also keep Donovan, Dylan, Aly, Sarah, Malisa, Heather, and Caity in your thoughts as well as everyone else having a rough time. I hope you're all having a good week so far!
Wednesday, September 27, 2006 11:19 PM CDT
Though the road only got longer, we endure.
And I swear it makes us stronger
Even when the wolves are howling at the door…
We endure.
--Janis Ian
Hi Everyone,
Sorry, I'm not up for an update tonight. Working so much this week is really taking a toll on me, more so than I expected. I'll do an update while I'm at work tomorrow or tomorrow night. Please keep Tara in your thoughts - she's in the hospital awaiting surgery to have her gallbladder removed. Also keep Donovan, Dylan, Aly, Sarah, Malisa, Heather, and Caity in your thoughts as well as everyone else having a rough time. I hope you're all having a good week so far!
Tuesday, September 26, 2006 11:10 PM EDT
Standin' on the edge of something much too deep.
It's funny how we feel so much but we cannot say a word.
We are screaming inside, but we can't be heard.
--Sarah McLachlan
Hi Everyone,
I had a long day today. This morning I drew blood for my labs and got that all set for Fed-Ex to pick up (it's SO convenient to be able to draw my own labs and have Fed-Ex come to my house to pick them up and send them off to the lab). I ended up getting up earlier than usual (about 10am) but didn't do much of anything productive before heading off to work at 1:00pm. Work was really quiet but I was very busy getting the scripts ready for my two theater classes. The first (younger) class was fine and pretty easy to handle but the second (older) class was very difficult today. For the most part the kids were happy with their parts (we're doing The Wind in the Willows and we read through most of it last week) but there were a few of them that were upset about it. It's so hard to try to make the kids happy while still keeping in mind the best interest of the whole class and the play. Oddly enough, one of the kids was upset because she got a bigger part than she wanted, quite the opposite of what I normally encounter. I think it will be okay, though. I'm having them take a week to process it and we'll talk about the parts again next week and if any changes absolutely have to be made, I'll make them but they should expect to keep the parts they were given today. Anyway, it was a long 2 1/2 hours of classes and by the time the second class was over, my throat was very painful and I was quite hoarse so I almost didn't go to choir but I decided I really needed to go since we're singing this Sunday and I missed last week's rehearsal. That went fine and I got to talk to Lexie's mom, Alice, for a little bit before rehearsal which was nice. Lexie is doing very well with her chemo since she's started getting regular accupuncture so that's great!
Health-wise today things were okay. I'm being strict with myself about sticking to easy foods and I think that's helping my stomach but right now I'm feeling pretty nauseous from my Primaxin infusion. My throat is still really sore and I'm not sure yet what it's from but hopefully it will start getting better soon! This morning when I woke up (the first time - to take my meds an hour before my morning Primaxin infusion) my throat hurt so much that it was really hard to swallow but through the day it got a bit better. I just wish it didn't seem to reset itself each morning. Oh well. I better lie down and snuggle under the covers (it's cold in my room) until the Primaxin is done. Then it's off to sleep (I hope). Tomorrow I'm working and I don't have anything else going on! Yay!
Please keep Bailee's family as they deal with their loss, Donovan, Dylan, Tara, Aly, Sarah, Malisa, Heather, and Caity in your thoughts as well as everyone else having a rough time. I hope you're all having a good week so far!
Monday, September 25, 2006 10:02 PM EDT
--Winnie-the-Pooh
Hi Everyone,
I'm being smart tonight and writing my update before my evening Primaxin infusion so I'm not feeling quite so cruddy and I can just rest during the infusion. Today was a long Monday but it seems to have gone by pretty fast. I had a pretty rough night last night and didn't get to sleep until about 2:30 or 3:00am. My stomach was bothering me which is my own fault from a few days of pushing my eating limits and it's just been building up and I've been feeling worse and worse from it. I did a little better about being conservative with my eating today but I think I need to take a few days off of "real" eating and stick to soupy stuff and mushy stuff to let things calm down. This morning I woke up with a bad sore throat and that continued throughout the day. I think there are a few possible causes of the sore throat - a dreaded cold (hopefully that's NOT the cause since I'm not 100% over my last cold that I caught at the beinning of August), bad reflux yesterday and overnight, thrush (yeast infection in the mouth and throat), or part of the Lyme kicking up its heels from the Primaxin. I don't really know what the cause is right now but I'll try a few things tomorrow and see if I can't make it feel better. I stayed in bed and rested for a while this morning and eventually got dressed and off to school. I had a nice set-up in the student development office with my afternoon Primaxin infusion. I did homework while I infused and it worked out well. And I have to say the whole parking situation (being able to park on campus versus chancing it with finding street parking) helps SO MUCH. I was able to park in a space right next to the college center and classroom building where my class is so it was great. Knowing I'll be able to find parking close to my class takes a load off my shoulders. Class was fine but I was pretty foggy during a good chunk of it.
Health-wise I'm doing so-so. The sore throat is painful and annoying but hopefully nothing to really worry about. My stomach problems will probably get better if I'm really strict with myself about having a few days of liquids so I'll do that tomorrow and Wednesday and see how things are after that. I haven't had bad headaches for a few days which is nice (*knock on wood*) but I'm generally feeling worn down and just not myself but hopefully it's the antibiotic doing what it's supposed to do and not anything else. That's about it for me tonight. I better go hook up my Primaxin and rest until it's done and I can go to bed. Tomorrow will be another long day - work, teach my two theater classes, and choir rehearsal. Better make sure I get to sleep early tonight! Please keep Bailee's family as they deal with their loss, Donovan, Dylan, Tara, Aly, Sarah, Malisa, Heather, and Caity in your thoughts as well as everyone else having a rough time. I hope you all had a good Monday!
Sunday, September 24, 2006 10:24 PM CDT
and I shall exist till the end of time, for my being has no end."
--Kahlil Gibran
Hi Everyone,
Not much to update about today. I made it to church this morning but wasn't feeling very well while I was there. I think I push myself too hard when I'm out in public to just be "normal" and seem okay even when I'm really not feeling okay. At church usually it's something so silly as standing up for the hymns versus staying sitting down. There are some Sundays when I'm fine standing for the hymns but then there are days like today when standing up, breathing, and singing at the same time just makes me feel like I'm going to pass out or throw up but I still push myself to stand up. Yes, it's silly and stupid to even be analyzing this, but since my church is a place where I feel very comfortable and accepted, it's strange that I would feel so weird about doing whatever I need to feel as well as possible while I'm there. Anyway, church was good and I stayed afterwards for coffee hour and talked to some people which was nice. Then I came home and basically spent the rest of the day in bed. Yes, in bed with the TV on, the computer propped on my lap, sometimes awake, sometimes asleep, but definitely NOT doing what I should have been doing - homework! I kept looking at the clock and saying, "Okay, I'll do homework in a half hour..." and it just didn't get done. I know I'll get done what I need to get done and I have time tomorrow, before leaving for school and while I'm at school doing my antibiotic infusion, but it's frustrating when things just don't get done. But I know that on days when I just can't get going on things, my brain isn't in very good shape and I need to give myself some slack.
So, that was pretty much my day. I'm feeling a little warm tonight and hope I'm not getting sick or anything. Tomorrow is my school day so it will be pretty long, but it's just the start of the week. I'll be working Tuesday through Saturday while my boss is on vacation so I really need to pace myself and get lots of sleep which I should get started on right now! Please keep Bailee's family as they deal with their loss, Donovan, Dylan, Tara, Aly, Sarah, Malisa, Heather, and Caity in your thoughts as well as everyone else having a rough time. I hope you're all having a good weekend!
Saturday, September 23, 2006 11:02 PM EDT
~Winnie-the-Pooh~
Hi Everyone,
HAPPY FIRST DAY OF FALL!
I'm going to keep this relatively short since my evening Primaxin (antibiotic) infusion is close to being done and I just need to get myself to bed asap when it's finished. Today was an okay but very long day for me. I had to work this morning at 10am and I have to say that I don't really mind having to wake up early to do my morning Primaxin infusion when I get to go back to sleep until noon, but having to wake up early for the infusion and then get up earlier than I'm ready to is quite a bit more difficult and tiring. I dragged myself out of bed about 15 minutes before I had to leave for work - thankfully I'm not one to worry much about what I wear and I'm usually able to get dressed quickly so I got to work only a minute or two late. This week is going to be interesting because my boss is away on vacation (somewhere warm and sunny - I believe somewhere in the Bahamas but I don't remember exactly where) and I'm working all week - Tuesday to Friday from 1-5 everyday and Saturday from 10-2. It's not a bad thing when it comes to money (of which I seem to always have less than I expect to) and work is pretty quiet on most days so it's not stressful or anything, but having to be up and about everyday like that is tiring. I'm glad I'll have my trip to Oregon to look forward to (only 11 days away!!) and not a lot else going on this week to worry about. Anyway, work today was quiet and I spent a lot of the time there working on stuff for my theater classes - figuring out which play to do with the younger class, typing up a revised rehearsal schedule for the older class, finalizing the casting for the older class, etc. I did get to a little bit of school reading but I have a bunch more to do tomorrow (and I also have Monday before class to finish it up if I need it - I'll have an hour or more at school while infusing my afternoon Primaxin infusion to do homework if I don't finish it before then). After work I ran a few quickish errands, mainly to get some more pill organizers to try to figure out the best way of keeping on top of all my variously timed medications and supplements (right now I have 10 different med times and unfortunately they just don't make pill organizers that have 10 compartments - it has been interesting lately seeing how I kind of keep track of time in reference to my medication schedule). Then I came home, did my afternoon Primaxin infusion, rested, did stuff online, baked pumpkin muffins this evening, and generally had a quiet afternoon and evening.
Well, the Primaxin just finished so I'm off to bed. I'm planning on going to church in the morning (unless I'm feeling really really awful) and then I hope to spend the rest of the day doing school work and resting. Please keep Bailee's family as they deal with their loss, Donovan, Dylan, Tara, Aly, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. I hope you're all having a good weekend!
Friday, September 22, 2006 4:34 PM EDT
--American Indian Proverb
Hi Everyone,
Sorry for no update last night (if anyone checked in to read one), I was just worn out and not feeling great and needed to just go to bed. So I'll backtrack now to yesterday. My dad and I got going pretty much on time to head to New York for my appointment with Dr. Bock. I slept a good deal of the way there thanks to getting up early and the side effects of Phenergan. The office was very quiet, almost eerily so, mostly I think because the infusion nurse wasn't there (I'm thinking she was on vacation but I didn't ask) so the infusion/waiting room was completely empty the whole time we were there and I saw a few other patients in various places of the office but overall it was just very empty. Fortunately that meant that I had my appointment pretty much on time and we got out of there pretty quickly. The visit with Dr. Bock went pretty well. We believe I'm herxing and that's why I'm feeling worse right now but that's a good thing so we just have to hope we're right about it. I'm starting on an Iron supplement for my anemia and I had labs drawn to check my iron levels as a baseline before I start the iron. We're happy that my white cell count is staying in the normal range, although it's not quite at my normal level but still at a good place. I'm also starting to take charcoal capsules three times a day to hopefully help with the nausea but I have to say it's quite a trick trying to fit them in to my already very full medication schedule since I can't take the charcoal with anything else or it will just absorb everything (I was already taking my various meds and supplements at 7 different times a day so now with the charcoal I'm up to 10 times - I need to go out and buy some better pill organizers!). He also called in a script (to the compounding pharmacy) for Tigan, another nausea med to try in place of the Phenergan to see if I can avoid being knocked out and sleeping all day. I have to call the pharmacy to find out about the cost and insurance and all that so I'm not 100 ure I'll go through with getting it (depending on the cost and all that) but if it's not too expensive or if they take insurance I'll give it a shot. Dr. Bock was surprised to hear about my problems with the infusion company and he immediately wrote out a script for me to get more than one dressing change/huber needle a week but I'll get back to that in a second.
After finishing at the office, my dad and I went out to lunch at T.G.I. Friday's (I had my usual plain chicken breast sandwich, which I get most places, and still have 3/4 of it leftover in the fridge) before getting back on the road. I did my afternoon Primaxin infusion in the car rigged up hanging from the coathook at the backseat door and I slept quite a bit of the way to my aunt and uncle's house. We had a nice visit with them and they all ate lobster chowder that smelled really good but I knew it would make me pretty sick so I stuck to just a piece of the tasty foccacia bread, although I did also have a brownie for dessert which made me feel sick but it was worth it. Soon we were on the road home and I was again asleep for a lot of the drive. After getting home I rested until I was all done with my evening Primaxin infusion and then went to bed.
Now, back to the infusion company/IV supplies problem. Dr. Bock wrote the orders for me to get more than one huber needle and dressing change kit a week and I was all ready to fax it off to my infusion company this afternoon (well, waiting for my dad to be done with a work call so I could use his fax machine) when my nurse called. She was calling about the number of sets of tubing I need a week (I had problems last winter with using tubing for more than one infusion - it would start running really slow and basically it seemed like the filter was getting clogged up or something - and I had to start getting enough tubing to use a new set for each infusion and I was trying to avoid that problem by asking for enough tubing to do that from the beginning this time) and understood my reason for needing that much tubing but I'm going to try just changing it daily and see if I have problems. If I do, I'll continue getting enough tubing to change for each infusion. Since she called, though, I also talked to her about my problems with the supply coordinator and getting enough hubers and dressing change kits and all that. She said she had already straightened out the issue of getting enough hubers and dressing change kits so there was no need for me to fax the orders. She also said she'd talk to the supervisor about me changing supply coordinators. I really like my nurse - she's so nice and really advocating on my behalf which means so much. She's making sure I get everything I need and even though I don't see her in person since I care for my port myself, I'm sure I'll be talking to her periodically as problems arise or just to make sure things are going okay. She's going to call me on Monday to find out how the tubing is working and we'll figure everything else out then, too. I'm so glad this has worked out and I hope I get a new supply coordinator who won't be so frustrating and difficult to deal with.
Okay, that's it for me. I just finished my afternoon Primaxin infusion and de-accessed so I can take a nice long bath this afternoon. I got my DVD set of the second season of Grey's Anatomy in the mail yesterday and I'm excited to get started watching that so I'll pop one into my computer and watch an episode while I soak. I also have to catch up with my shows from last night that I taped since I didn't know what time I'd be home (and it's just easier to watch taped things because I won't miss anything and can go back if I zone out or fall asleep). And of course there's school work to do! I won't do another update tonight since this one is so long but I'll be back to my regular updating tomorrow.
Please keep Bailee's family as they deal with their loss, Donovan, Dylan, Tara, Aly, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. I hope you're all having a good Friday!
Thursday, September 21, 2006 11:59 PM EDT I'm not up for writing a whole update tonight so check back in the morning to hear about my doctor's appointment and visit with my aunt and uncle today. Hope you're all doing well!
Wednesday, September 20, 2006 11:30 PM EDT
--Garrison Keillor
Hi Everyone,
Well, today wasn't a very good day for me - not feeling well, lots of frustrations about my supplies from my local infusion company (where I get the IV antibiotics from), etc. Basically I'm having huge issues with my supply coordinator - there were mistakes with some things in my delivery today so I called about them and just ended up getting in a long discussion about it. I won't get into it but I got really frustrated and upset about it all and I'll call and try to talk to someone else tomorrow and also bring up these issues with Dr. Bock (since it could probably all be helped by him sending orders that it's fine for me to have as many huber needles and dressing change kits a week as I need - the supply coordinator was saying I could only have one a week and that they weren't going to send me any more than that because de-accessing and re-accessing more than once a week increases chance of infection which is true but it really isn't her place to be making it into a big issue!). My day got a bit better when I went out to dinner with my sister, brother, and brother's girlfriend for a sibling night (well, sibling and significant other night). That was nice but I just haven't been feeling well so it took a lot out of me. Health-wise I've been pretty nauseous, not eating much, shakey, having headaches, really tired, and thirsty all the time (kind of weird since I'm ALWAYS sipping at something). I spent a few minutes writing out some notes of what to talk to Dr. Bock about tomorrow and hopefully we'll get a few things figured out.
Time for me to get to bed. Tomorrow I'll be gone all day for my appointment with Dr. Bock and then stopping in to see my aunt and uncle for dinner. Hopefully I'll get some school reading done in the car or Dr. Bock's waiting room and the day won't be too tiring but I'm hoping to get some sleep in the car, too. Please keep Bailee's family as they deal with their loss, Donovan, Dylan, Tara, Aly, Sarah, Malisa, Caity, and Diana in your thoughts as well as everyone else having a rough time. I hope you're all having a good week so far!
P.S. I just figured out I could upload videos to my photobucket account so here's a video I took at Pemaquid Point in Maine in August (sorry there's no sound, it's much better with the sound of crashing waves to go with it so you'll just have to imagine that part):
Tuesday, September 19, 2006 11:59 PM EDT
Letting go of everything that is not you,
All the expectations,
All the beliefs,
And becoming who you are.
Not a better you, but a realer you.
We need to let go
To throw away everything that isn't us
In order to be more whole."
--Rachel Naomi Remen
Hi Everyone,
Today was okay but I'm definitely feeling the Primaxin. I believe I'm Herxing (what it's called when you feel worse as the bacteria is being killed off because as it dies it releases neurotoxins which make symptoms worse) because I'm having bad headaches a lot, feeling very fatigued even when the Phenergan has worn off, feeling weak and shakey, and just worse overall. This morning I slept in until about noon after my whole wake up, go back to sleep, wake up routine (which I'm already getting sick of but hopefully I'll get more used to it as time goes on...and a new CD clock radio that actually works to play CDs on would be nice). I could have probably slept longer but I forced myself to get up and face the day. I spent a while getting the scripts for my theater class (the older one) ready and then headed out to teach the classes. Unfortunately two of the kids in my older class dropped out and they were my two older, and very dependable kids! Oh well, I'll figure the casting out without them but I'll have to change a few things in the script (which are of course all printed and collated) but I'll make it work. I opted to skip choir rehearsal and I was going to just come home after the classes but I decided to go run a few errands and went to K-Mart to get some of my drinks that I can only find there and then to the grocery store to get, you guessed it, popsicles! The grocery store I went to (not my normal one, it's farther away) has the third flavor box of sugar free popsicles - Tropical - so now if I do extra driving (in opposite directions) I can get all three flavors boxes of sugar free popsicles - very exciting! (LOL, I know, it's pretty sad that that makes me excited.) Since coming home I've been resting, catching up with some online stuff, watching some TV, etc.
Health-wise things aren't great but I'm managing. I got my lab results back today from my regular labs (while I'm on IVs) that I drew yesterday and my suspicion about being iron-deficient was proven correct. My hemoglobin is low so I'm anemic - oh joy! Hopefully this is something we can get figured out when I see Dr. Bock on Thursday. A few other levels having to do with hemoglobin (MCH and MCHC, for those of you who know about CBCs) were low but not that low so hopefully it's not too bad. Looking at the list of foods that are high in iron is a bit frustrating since everything I've seen listed are things I really can't tolerate! Oh well, I'll get things sorted out on Thursday, I hope. Fortunately everything else in my blood work was fine.
Well, I'm feeling pretty sick right now (I ate too many goldfish crackers tonight - I really need to work on stopping myself from eating too much since that's probably what makes me feel sick most of the time) and I'm exhausted so I need to get to sleep. Tomorrow I have nothing! Yay! I might go out for dinner with my brother and sister for a sibling night but that's not definite yet. I'm thinking I might de-access in the afternoon to take a soak in the tub but it might be better to wait until Friday to do that so I'm cleaner for church on Sunday (it's pretty sad that I strategically place my shower/bath days to be as close as possible to days when I have to go out). Please keep Bailee's family as they deal with their loss, Donovan, Dylan, Tara, Aly, Sarah, Malisa, Caity, and Diana in your thoughts as well as everyone else having a rough time. I hope you're all having a good week so far!
Monday, September 18, 2006 10:56 PM EDT
The precious moments are all lost in the tide.
They're swept away and nothing is what it seems,
The feeling of belonging to your dreams..."
--Roxette
Hi Everyone,
Health-wise today was not a very good day but in other areas it wasn't bad. Unfortunately since health stuff often overshadow and affect everything else, having a bad health day generally means everything else wasn't as good as it would have been otherwise. This morning I did my whole waking up and going back to sleep routine but when I woke up to unhook from my morning antibiotic infusion I had to stay awake (and be awake enough) to draw my labs and call Fed-Ex to come pick them up. Then I de-accessed, turned on the TV, and went back to sleep for another hour or so. Eventually I knew I had to get up and take a shower and get up to school early enough to run around to get the parking situation figured out and find out about getting a room to do my afternoon Primaxin (antibiotic) infusion before my class. My shower wasn't as nice as it would have been if I'd been able to spend more time enjoying it (or better yet, taking a bath) but time was short and I was feeling shakey so I kept it relatively short. The drive up to school wasn't bad except for a stretch of construction. I ended up doing my afternoon antibiotic infusion in the car on the way to school (I had an interesting thing rigged up - it worked but wouldn't be something to do very often) and when I got to campus I was able to find a good, fairly close parking space so that was very nice.
I ran all over campus (okay, not really ran, more like slowly walked and periodically rested while waiting for elevators) - I go my parking permit (not that cheap but it will be worth it) and I'm going to be allowed to park on campus earlier than what the permit usually allows since I have to get there early to do my Primaxin infusion, I got a temporary handicapped permit from disability services that's just good on campus but will help to ensure I get a parking space in the lot on campus (which happens to be right next to the building where I have my class), and I got everything arranged to have a place to infuse my afternoon antibiotics. Everyone at school is being so accommodating and I feel very lucky to have everything working out well. I'm actually going to be using an office in the student development office for my infusions - the woman whose office it is is so nice and has been really great at helping me out with things. When I met with her last semester about this same thing, we talked for quite a while and she remembered me from my admissions interview which really surprised me. It turns out that it will work out well for me to use her office for my infusions since their department meeting is every Monday afternoon during the time I need to infuse so she'll be out of her office but I'll probably see her from time to time when her meetings get out early. Her office is pretty big with a nice table I can sit at to do homework or bring my laptop up and go online or watch a DVD. I think it will work out really well and I'm so grateful for it!
Anyway, then I had my actual class which was fine. I was pretty out of it which surprised me because I decided to not take my Phenergan before my afternoon antibiotic infusion to try to minimize the zombie feeling during class. Well, the nausea wasn't TOO much worse than when I do take the Phenergan but I was still a zombie so it wasn't worth it. I just really wish I didn't have to take the Phenergan all the time because I feel like I could just sleep all day long - definitely not a productive way to spend the day but maybe that's just what's necessary right now. I'm going to talk to Dr. Bock about this on Thursday when I see him and see if he has any ideas for ways to keep me awake with as little nausea as possible. The drive back home from school wasn't bad but driving at night is always a bit difficult for me because I zone out. Mondays are definitely long days and I'm glad I can sleep in tomorrow.
Health-wise today wasn't great. I had another awful headache (not sure if it's a Herxheimer reaction (which would be a good thing), regular migraines, or hypoglycemic headaches because I haven't been up to eating much these past few days). I was pretty nauseous most of the day but managed to eat some semi-nutritious foods. I'm definitely going through a lot of popsicles. And I've also been craving ice lately - I'm not sure what that's all about but I'll mention it to Dr. Bock (and I'm interested to see what my labs look like since I know craving ice can be a sign of low iron levels).
Okay, this update has gotten much longer than I planned so I better wrap it up (and lie down while my evening Primaxin infusion finishes up). Tomorrow I have the morning free to sleep in and rest and then I teach my two theater classes in the afternoon and I have choir rehearsal (which I may end up skipping depending on how I'm feeling) in the evening so I better get some sleep! Please keep Bailee's family as they deal with their loss, Donovan, Dylan, Tara, Aly, Sarah, Malisa, Caity, and Diana in your thoughts as well as everyone else having a rough time. I hope you all had a good Monday!
Sunday, September 17, 2006 11:53 PM EDT
And you start to think you won't smile again.
And those coals turn to cinder,
Think of me, and I'll warm you from within."
--Michael Troy
Hi Everyone,
Today has been a rollercoaster kind of day for me. I went to church this morning and went early for choir rehearsal but I wasn't feeling very well while I was there. I had to sit down during choir rehearsal because I was just feeling a lot of pre-syncope/dysautonomia symptoms and I was still nauseous from my morning Primaxin infusion. And of course I was out of it all morning because of my morning Phenergan and not being able to sleep in to sleep off the exhaustion side effect I experience from it. But oh well. After church my dad and I swung by the grocery store near church to get a flavor of popsicles that I can only find there. And I spent the rest of the afternoon and evening resting, watching some TV off and on, and working on my school work for my class tomorrow. Now I really need to go to bed. I have an awful headache that I just hope is gone when I wake up in the morning. I'm also pretty nauseous even with the Zofran and Phenergan on board. I can't tell if the headache is making the nausea worse or if the nausea is making the headache worse. Or maybe it's just the Primaxin making everything worse. Oh well.
Tomorrow I have to draw my labs in the morning and go up to school a few hours early to pick something up and go to a meeting before my class. I found out that I can park on campus after 3:30pm if I buy a graduate student parking pass (the undergraduate ones only let you park after 5pm and my class starts at 4pm so that wouldn't work) but I'm not totally sure if that will work because I really need to get an arrangement set up so I can get to school around 2:30pm and have a room somewhere (probably a conference room) to infuse my afternoon Primaxin dose that's supposed to be at 3pm but I can tweak the time a little bit if necessary. Hopefully something can be worked out to accommodate all my needs and if not I'll have to decide if I'd rather take my chances with street parking and get there early to infuse or infuse in the car while I'm driving up to school to park on campus with the parking pass. I'll figure something out.
And some other exciting news (well, maybe the school stuff wasn't exactly exciting, more regular news) - I'm officially going to Oregon to visit my sister in October. I'll be leaving two weeks from Wednesday and staying there for 9 days. I'm really looking forward to that and since it's so close (I can't believe it's just over 2 weeks away!) I have to get on top of getting my medical stuff coordinated so I'll have as much stuff shipped out there ahead of time as possible. I'm a bit worried about the new regulations of not being able to carry liquids onto the plane. I'm not comfortable checking the Primaxin (I'll inevitibly have to take at least a day's worth with me even if I can get some shipped out there) so that could be difficult. I guess I'd be okay checking a few liter bags of saline, but I'm iffy about it. I HAVE to carry on my vitamin syringes (no needles attached) because they have to be kept refridgerated. I'll look into all this more this week and make sure everything is made as easy as possible.
Okay, this ended up being a lot longer than I intended or thought it would be. Time to go to sleep. Please keep my uncle Doug (mom's brother) in your thoughts as recovers from a broken hip as well as Bailee's family as they deal with their loss, Donovan, Dylan, Jaxon, Tara, Aly, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. I hope you're all having a good weekend!
Saturday, September 16, 2006 10:54 PM EDT
--John Watson
Hi Everyone,
I think I need to start doing my updates before my evening antibiotic infusion because I feel sick from it and very out of it from the Phenergan. So this will be short. This morning I slept in again (after doing my whole wake up for meds, go back to sleep, wake up to start infusion, go back to sleep, etc.) but not as late as yesterday. My day was pretty quiet. I made some adapted oatmeal cookies and spent a little while set up on the couch in the living room. I also made it through the afternoon without a nap but that's because I was in the midst of baking cookies when I really needed to lie down and nap for a while so I pushed myself through it. Sorry this is so short, but I'm really not feeling well from the antibiotic infusion I'm doing right now and just exhausted. Tomorrow I have church and I have to go in early for choir rehearsal because we're singing during the service. Then I have to finish up my homework for Monday so I really hope my afternoon isn't a wash like they have been lately. I'm sure I'll need a nap, though, since I won't be able to sleep in because of church.
Well, that's it for me tonight. I know my updates lately haven't been that interesting but I guess there haven't been very exciting things to write about. Please keep my uncle Doug (mom's brother) in your thoughts as recovers from a broken hip as well as Bailee's family as they deal with their loss, Donovan, Dylan, Jaxon, Tara, Aly, Sarah, Malisa, Caity, and Diana (who is in the hospital right now) in your thoughts as well as everyone else having a rough time. I hope you're all having a good weekend!
Friday, September 15, 2006 11:59 PM EDT
I am over the water
And I'm scared as hell
But I know there's something better
Yes I know there's something..."
--Paula Cole
Hi Everyone,
Today overall wasn't a horrible day but was definitely not one of my best. I forgot just how tiring the Primaxin infusion schedule is, although it could be worse (when I first went on it, Dr. Bock was talking about eventually going up to 4 times a day instead of 3 - that would mean VERY little sound sleep). I woke up at 7am to take my Zofran and Phenergan and then went back to sleep. Then I woke up at 8am and hooked up my morning Primaxin infusion and went back to sleep. Then I woke up at 9:15am to unhook the infusion and went back to sleep. I didn't wake up for good until 12:30pm which is really late for me to sleep. I think it's a combination of the Primaxin wiping me out and the Phenergan knocking me out, a side effect I knew would be difficult to handle with taking it three times a day. Anyway, once I woke up for good I got up, had a little something for breakfast, and spent the day in bed resting, sleeping off and on, infusing all my infusion stuff, doing stuff online, watching TV, etc. The y-connectors for my port got here today - really fast shipping since I only talked to the nurse about them yesterday! So I went ahead and hooked one up to my line and I was able to infuse my saline and all my Primaxin infusions without having to unhook one to run the other! It's great! (Yeah, it's sad that I get excited about something like this, but it's just so cool and I really wish I'd known about them when I was on Primaxin last time. It would have made life a lot easier.)
On a not so good note, I'm definitely seeing some side effects from the Primaxin already. I'm having my usual lack of appetite, food doesn't interest me, don't feel like eating side effect that I get whenever I'm on heavy duty antibiotics (especially IVs). And I'm still nauseous even with the Zofran and Phenergan before each dose but I know it would be SO much worse without those two meds so I'm so grateful to have them to lessen the nausea. And because of the Phenergan I'm basically sleeping all the time or in a half-asleep state watching DVDs on my computer or watching TV. But I'm taking these side effects in stride and trying to take it easy. I'm trying to eat what I can and feel like and I'm sticking to pretty easy foods - jello, mashed potatoes, yogurt (not always easy on my stomach but easier than a lot of things, plus the probiotics in it are always good while on antibiotics!), popsicles, saltines, etc. I'm hoping to feel up to making some adapted oatmeal cookies tomorrow and maybe some soup with easy to handle stuff in it. I have nothing going on tomorrow but I really have to get some school work done (it's a bit challenging to get things done when I'm always so tired from the Phenergan!). Then Sunday is church and the choir is singing so I have to be there early (not really looking forward to actually having to be up at a particular time but I guess I should just be thankful that I don't have to be up early most other days).
Well, that's it for me tonight. I know my updates lately haven't been that interesting but I guess there haven't been very exciting things to write about. Please keep my uncle Doug (mom's brother) in your thoughts as recovers from a broken hip as well as Bailee's family as they deal with their loss, Donovan, Dylan, Jaxon, Tara, Aly, Sarah, Malisa, Caity, and Diana (who is in the hospital right now) in your thoughts as well as everyone else having a rough time. I hope you're all having a good week!
Thursday, September 14, 2006 11:26 PM EDT
But here and now this is our time
And I may never find the meaning of life
But for this moment I am fine"
--Rob Thomas
Hi Everyone,
This will be short because I'm infusing my Primaxin and feeling nauseous from it - bleh. This morning I got my delivery of Primaxin (antibiotic) and supplies and then my nurse came around noon to oversee my first dose. She was very nice and we had a good time talking and getting to know each other and the infusion went smoothly, better than the one now seems to be going but it makes sense that the longer I'm on it, the worse the side effects. After the nurse left, I basically went to bed for the rest of the day and slept on and off for the afternoon. I'm not sure if it was the Primaxin or the Phenergan or what that knocked me out but I was really tired and asleep for quite a long time. I took a quick trip out to pick up a few meds at the pharmacy and a few things at the grocery store (it's amazing how many popsicles I can go through in a week). When I got home I set up camp on the couch in the living room, had some dinner, watched some TV, answered some e-mails, and basically took it easy. Now I'm infusing my evening dose of Primaxin (and feeling sick from it, as I mentioned) and I'm going to head to bed when it's done.
Please keep my uncle Doug (mom's brother) in your thoughts as recovers from a broken hip as well as Bailee's family as they deal with their loss, Donovan, Dylan, Jaxon, Tara, Aly, Sarah, Malisa, Caity, and Diana (who is in the hospital right now) in your thoughts as well as everyone else having a rough time. I hope you're all having a good week!
Wednesday, September 13, 2006 11:20 PM EDT
So we can see the brighter side
And in giving what we've been denied
Is all a seed need sow
All a heart need know."
--Lori McKenna
Hi Everyone,
Well, if you missed my update from earlier today, the big news of the day is that my IV Primaxin (antibiotic) has finally been set up and approved by my insurance company. I'll be getting the delivery of everything tomorrow and a nurse will come to oversee the first infusion. I talked a bit about all this stuff in my earlier post (which is underneath this one if you scroll down) so I won't go back into all that. My day today was very quiet and low key - I stayed in my pjs all day, took a nice long bath this afternoon since it will be more difficult to have long de-accessed times once I start the Primaxin, finished watching one of my Netflix DVDs, and generally took it easy. Nothing much else to update about. It's nice to have a boring day sometimes. Tomorrow will be another (hopefully) boring day. I'll have to go out at some point to pick up a few refills of things at the pharmacy and a nurse will be coming to oversee the first dose of Primaxin (not sure what time that will be yet, I'll get a call sometime tomorrow letting me know more specifically when it will be) but other than that there's nothing going on. I'll just take it easy, rest a lot, and try to ease into being back on Lyme treatment. The infusion schedule is kind of tiring - infusions at 8am, 3pm, and 10pm and each infusion is about an hour plus my hydration fit in around that somehow. Today when I was talking to the people from Coram (my local infusion company) I forgot to ask if I could get y-connectors to make it possible to infuse two things at once so I won't have to stop my hydration to do my Primaxin infusions - that will make life quite a bit easier than having to figure in the stopping time to my hydration infusion time and all that. But I'll ask them about that tomorrow or something.
Okay, it's off to bed with me! Please keep my uncle Doug (mom's brother) in your thoughts as recovers from a broken hip as well as Bailee's family as they deal with their loss, Donovan, Dylan, Jaxon, Tara, Aly, Sarah, Malisa, Caity, and Diana (who is in the hospital right now) in your thoughts as well as everyone else having a rough time. I hope you're all having a good week!
Wednesday, September 13, 2006 12:59 PM EDT
I just had to jump on here quickly to give some good news. I got a call from Coram, my local infusion company, letting me know that the IV Primaxin (antibiotic) has been approved by my insurance company!! So I'll be starting on it tomorrow! This is very good news as I was unsure that it would be approved at all through Coram and that I might very well have to work with my infusion company in Florida that I get my IV hydration from and that it might take at least a few more weeks to get that going. So, anyway, I'll officially be starting back on Lyme treatment tomorrow after a 9-month hiatus. Now I just have to try to keep as healthy ON the treatment as possible and avoid any major crashes like the one I had starting in January. I'll be taking Zofran and Phenergan before every dose (three times a day) to reduce the infusion-induced nausea as much as possible and I'll have that crazy infusion schedule again - 3 times a day, more or less every 8 hours but I manage to squeeze in some more sleep by doing it every 7 hours during the day and then it's a 9 hour break overnight (except that it isn't really that long because of the time the actual infusions take). Okay, this has turned into a much longer update than I planned. I'll come back for a real update tonight.
Tuesday, September 12, 2006 11:49 PM EDT
ignore the small saily difference we can make which, over time,
add up to big differences that we often cannot foresee."
--Marian Wright Edelman
Hi Everyone,
Today was an okay day for me. I slept in quite a bit (until almost noon!) and could have just spent the whole day in bed sleeping and resting if I didn't have things I had to do. I watched some TV, did some stuff online, and got ready to teach my theater classes. It looks like the classes are going to end up being pretty good. There are 5 kids signed up for the younger class (grades 1-3) and one more probably joining the class later on in the fall and there are a whopping 12 kids signed up for the older class (grades 4-8). There may very well be more kids signing up for both classes as the word gets around a little more (the newsletter only went out yesterday due to some problems with the printing of it). If many more kids sign up for the older class, we could run into problems but the younger class could stand to have a few more kids. Anyway, the classes went pretty well although some of the kids in the older class are a bit high-energy and can be difficult to deal with. I need to figure out a good way of getting the kids to focus and a way of getting their attention that doesn't include me yelling or I'll be losing my voice every week! After the classes I went straight over to church for choir rehearsal and had a little bit of quiet time alone at church before everyone got there. Choir rehearsal was good but it's a bit of a stretch in energy to have much left to put into the rehearsal after 2 1/2 hours with kids. I stopped at the grocery store quickly on the way home and I've been more or less resting since I got home.
Tomorrow I don't have anything I have to do which will be so nice. I need to get started on my reading for my Wheelock class and I've had the same two netflix DVDs for over a month so I really need to watch at least one of them and return it! I also need to talk to my boss about me going to Oregon next month and what I could do about my theater classes for the week I'd be gone. Hopefully she'll be okay with me working something out, but just in case I haven't made the plane reservations yet. Please keep my uncle Doug (mom's brother) in your thoughts as recovers from a broken hip as well as Bailee's family as they deal with their loss, Donovan, Dylan, Jaxon, Tara, Aly, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. I hope you're all having a good week!
Monday, September 11, 2006 11:59 PM EDT
--Henry David Thoreau
Hi Everyone,
Just a few things to say tonight. First of all, I got an e-mail back from my professor for my summer online class giving me my final grade - an A! Yay! I got a 94 on my final exam and an A- on my final paper and A's on everything else in the course so it's a big yay that it's done and I did so well in it! And my professor really was so great and understanding. In his last e-mail to me he said that he admires my perseverance. I'm so lucky to have such great professors. So, my day today was okay but long. I didn't get to sleep until close to 4am this morning so I slept in quite a bit ('til after 11am - still not that much sleep but better than getting up early). I stayed in bed for a little while after waking up and eventually got up and ready to go to school. I had my (very quick) meeting with disability services to get my accommodations letter for my professor. I don't think I'll really need many accommodations since this class doesn't have exams and isn't a lecture (so I don't really need to use a tape recorder) but it's still good to have the letter out there just in case. My professor is the same one I had in the spring for my other language development class (I'm taking Linguistics this semester) and after class we got to talk for a few mintues which was nice. She has rheumatoid arthritis so she understands what it's like to deal with chronic illness and she's just so great. I'm looking forward to the class and getting into the material. I was pretty out of it during class because I had to take a Phenergan when I got to school - my stomach was just not doing great so I figured it would be better to be sleepy than nauseous but of course being a zombie in class isn't the best thing. And being a zombie driving home is worse, but I was more awake driving home than in class and I was listening to Harry Potter which surprisingly keeps me more alert than listening to music. You'd think it would put me to sleep more but I think having something to concentrate on more intently than music helps to keep me alert. This evening after getting home I mostly rested, did stuff online, watched some TV, had some dinner, nothing too exciting. I talked to my brother-in-law for a little while which was nice. I was calling to talk to my sister about me going to visit next month but she wasn't there so I talked to Matt for a little bit - he's doing pretty well, recovering from his hernia operation last week. I've been looking at plane ticket prices for next month and right now looks like a good time to grab tickets since the price has come down a little bit in the last few weeks so I'll do that once I figure a few things out and talk to my sister to finalize the plans. But I'm so excited about visiting and getting to see Oregon in the fall! (I've never been there in the fall - late spring, summer, winter, but no fall).
Well, I better get to sleep to try to make up for the lack of sleep last night. Tomorrow I teach my first theater classes of the fall term assuming there are enough kids signed up for them to run...we shall see. Please keep my uncle Doug (mom's brother) in your thoughts as recovers from a broken hip as well as Bailee's family as they deal with their loss, Donovan, Dylan, Jaxon, Tara, Aly, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. I hope you're all having a good week!
Sunday, September 10, 2006 11:59 PM EDT
we are all geniuses when we dream,
the butcher's the poet's equal there."
--E. M. Cioran
Hi Everyone,
Even though the time on this post is just before midnight, it's actually just after 1am (I make it 11:59 PM if I'm updating after midnight just so it will still come up on the day it still feels like, if that makes any sense to anyone) and I'm exhausted so this will be quite short. I just finished my final exam and e-mailed it off to my professor FINALLY! So I'm done with my summer class and in...15 hours I officially start my class at Wheelock. Nothing like a little break, lol. I'm just glad to have the weight of one class off my shoulders before I put the weight of a new one on it. This morning I went to church which was nice, got to catch up a little bit with some friends there, then I came home and spent the rest of the day working on and off on my final, resting, procrastinating with stuff online and TV, and otherwise taking it easy. My mom and sister went to Verizon to cancel our phone plan and sign up for a new one (to save us money) and I got a new phone which I really like - a flip camera phone with a color screen and some other cool features that I'll explore more when I have more time.
Now it's way past my bedtime. Please keep my uncle Doug (mom's brother) in your thoughts as recovers from a broken hip as well as Bailee's family as they deal with their loss, Donovan, Dylan, Jaxon, Tara, Aly, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. I hope you're all having a good week!
Saturday, September 9, 2006 10:51 PM EDT
--Joe Paterno
Hi Everyone,
Today was overall pretty low key. I actually didn't step foot outside the house and I was in my pajamas all day, although I did change them this evening after taking a nice bath. I slept in this morning until about 11 or 11:30am and I was still really tired and probably could have slept for a few more hours if there wasn't noise in the house keeping me awake. I spent the day resting, watching TV, working on my final exam (which is close to being done! finallY!), taking a nice long relaxing bath, and generally trying to take it easy. I'm still not feeling well, though - I can't really say it's any one thing that's wrong, I just generally don't feel good, I'm really exhausted, and my stomach is more off than it's been, although that does seem to be slowly improving. Tomorrow is the first regular church service of the new year and the choir is singing so I'll be going in early for rehearsal and to hopefully catch up with some friends! Then I have to come home and finally finish my final exam. If I don't finish it tomorrow...well let's just say I really need to finish it tomorrow. And then I start my class at Wheelock on Monday. I'm glad that's with the same professor I had in the spring because it's just one less thing to wonder about, and I know she's really understanding and just an overall great teacher. I have a meeting with disability services before class and it will be a pretty long day for me, but I'm looking forward to starting the class.
I need to get to bed and hope to get to sleep soon. Please keep my uncle Doug (mom's brother) in your thoughts as he recovers from a broken hip and surgery yesterday, my brother-in-law Matt as he also recovers at home from hernia surgery, Bailee's family as they deal with their loss, Donovan, Dylan, Jaxon, Tara, Aly, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. I hope you're all having a good weekend!
Friday, September 8, 2006 11:18 PM EDT
I was just checking in on some CB friends before going to sleep and I was surprised and very saddened to find that Bailee earned her angel wings on Wednesday. She had a long, hard fight and now she can fly high, free from pain. Please keep her family in your thoughts.
understands where you have been,
accepts what you have become,
and still, gently allows you to grow.
--William Shakespeare
Hi Everyone,
This will be a quick update tonight, but I guess ANY update is better than none. Today was a bit of a busy day for me. I took it easy this morning before taking a shower (today was a de-accessed day) and going in to work from 1-3 to get the mailing put together. Then I ran some errands (to pick up a perscription and some popsicles), came home and got ready for the plays tonight. I straightened my hair (I'll have to get a picture of it tomorrow while it's still straight to show how long it is - and it just keeps growing!), got all my stuff together, and headed over to the library where the arts festival is. I got there a little later than planned but it was okay. The plays went well and it was a lot of fun. I got to meet the playright of one of the two plays I was in and he and his wife were both very cool and nice and just had lots of good things to say about the play and my performance. His wife actually came up to me afterwards and said, "You were AWESOME!" Very nice to hear, especially from the woman who has read that part over and over during the writing process. And the playright said he couldn't have asked for us to do a better job with it and everyone I talked to afterwards really enjoyed both plays so it was a success! It was a lot of fun but I'm glad it's over now so I can rest more and concentrate on finishing my summer class and starting my fall class (which starts on Monday). Now I'm just ready to go to sleep and spend all day tomorrow finishing my final exam so I don't have that hanging over my head anymore (and so it's not TOO much later than the regular turn-in time).
Please keep my uncle Doug (mom's brother) in your thoughts as he broke his hip earlier today and had to have surgery to put some pins and plates in. He's in the hospital and has a long recovery road ahead of him (he lives in Tennessee and I haven't seen him in...over 6 years). Also keep my brother-in-law, Matt, in your thoughts as he also recovers from surgery, although only minor surgery to fix a hernia. And continue to keep Donovan, Dylan, Jaxon, Tara, Aly, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. I hope you're all having a good week!
Friday, September 8, 2006 11:49 AM EDT
for a life without faith in something is too narrow a space to live."
--George E. Woodberry
Hi Everyone,
Sorry for no update last night (if anyone came by looking for one, I never know if anyone reads this daily). I honestly forgot and I was just so tired that I got myself home from rehearsal and ready for bed. I'm still not feeling very well - stomach isn't good and I'm sticking to "easy" foods (I actually broke out the baby food again yesterday - a bit depressing but necessary), I have a massive headache this morning, I'm really tired and just not feeling well overall. Tonight is performance night for the plays so then that will be over and no more rehearsals. I also have to go into work for a few hours this afternoon to help get a mailing out and I'm still chipping away at my final exam - I have an extension until whenever I can manage to finish it. My professor this summer has been so great and I'm so thankful to have someone very understanding and accommodating.
Anyway, I just wanted to put something up here in case people came over looking for last night's update. I'll do a real update tonight if I'm not too exhausted after the plays.
Wednesday, September 6, 2006 11:59 PM EDT
--American Indian Proverb
Hi Everyone,
Another quickie update tonight. Today was not a good day for me health-wise. I don't know if writing my paper took more out of me than I thought, or if the play rehearsals are taking more of a toll than I realized, or if I'm recovering from Maine, or what's going on but I was just not feeling well at all today. My stomach wasn't good and my appetite just wasn't there - food didn't seem appetizing - so that just made everything else worse and I was really exhausted and having trouble just keeping my eyes open (not that I was falling asleep, just that I was so worn out it seemed to take a lot of energy to keep my eyelids up). So I stayed in bed pretty much all day, working on my final exam on and off. I e-mailed my professor about having such an awful day today and he's giving me extra time to finish the final. He's been a wonderful professor and so nice and accommodating - it would be nice to take another class with him sometime if I can manage it. I had rehearsal tonight and now I'm just so exhausted and need to sleep.
Please continue to keep Donovan, Dylan, Jaxon, Tara, Aly, Sarah, Malisa, and Caity in your thoughts as well as everyone else having a rough time. I hope you're all having a good week!
Tuesday, September 5, 2006 11:59 PM EDT
--Unknown
Hi Everyone,
Very short update tonight. My paper is finished and sent off, although that only happened about 20 minutes ago. I spent all day on my paper and I'd pretty much finished it by the time I had to leave for rehearsal at 6:30pm. My original plan was to finish it and send it off before leaving but that didn't happen. Before rehearsal I had to run over to church to pick up the choir music for this Sunday since I had to miss choir rehearsal tonight to go to my play rehearsal. The play rehearsal went fine but it was long. Then I came home and had something to eat as I finished my paper. Now I'm feeling pretty sick from eating too much (I was really hungry for a change when I got home and overdid it because of that) and just really tired. I'm almost done with my class now - final paper is finished, final exam will be done over the next 48 hours (I'll get the e-mail with it tomorrow morning and have until Friday night to finish it). Can't wait 'til it's done! Now it's off to bed with me for a hopefully very good night's sleep.
Please continue to keep Donovan, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time. I hope you're all having a good week so far!
Monday, September 4, 2006 10:41 PM EDT
By all the means you can,
In all the ways you can,
In all the places you can,
To all the people you can.
As long as ever you can.
--John Wesley
Hi Everyone,
Ugh. That just about sums up how I'm feeling right now, both mentally and physically. Why is it that it always seems to happen that when you need your brain to actually work in some semblence of a normal way it decides to take an extended vacation? Maybe it's not just my brain, maybe I'm just worn out or something but everytime I sat down and tried to do work on my final paper (which is due tomorrow night, in case I didn't mention that before) I got maybe 2 or 3 minutes into jotting down notes in my outline and I found myself not being able to think anymore. Nothing new of course, just frustrating. I know the paper will get done, it will just probably get done by me locking myself in my room tomorrow and turning off my internet so I can finish it. Or maybe I should pack my stuff up and go to the library since there are fewer distractions there, but it's much less comfortable. One way or another it will get written, it always does, and I have the outline and my references all together and it only has to be 8-10 pages so I'm not too worried but still, there's that anxious side of me that gets stressed out about it. And of course being stressed out makes it that much more difficult to try to concentrate on actually doing the work so it's all just a viscious cycle. I plan (hope) to get at least an introduction/overview written tonight but I'm not sure that will happen since I'm already about to fall asleep. Perhaps just an early start tomorrow.
And now I've rambled on for a paragraph about my homework and I'm sure none of you really care about that at all. My day today was okay but somehow I'm completely drained without actually having done a whole heck of a lot. I slept in a bit, although not as late as I would have if my mom hadn't been playing piano. Then I did some stuff online, watched some TV while trying to wake up and rest at the same time, and eventually got dressed and headed out for day two of rehearsing for the plays for Friday. Today it was just me and Michael rehearsing the play that's just the two of us so we went for a walk and ran through it a number of times to help us get more familiar with it and think about the pacing of it all. Then we blocked (staged) it and I think it's going well. It better be since we only have...3 more days of rehearsing until the real thing, unless we rehearse on Friday afternoon before the run-through at the performance space and the real performance. I have to find time to finish learning my lines...after the paper is done. I have to keep my priorities in order! After rehearsal I went to the grocery store to stock up on my staples, mainly I needed popsicles but I also got my other foods so I should be good for a while. Since then I've just been resting, watching TV, doing random stuff online, working a little here and there on my paper, and trying not to get too stressed out. Health-wise I'm having an okay day - no big headache again today, stomach is a little iffier than usual, my ears have been hurting for some weird reason (not sure about that), and my joints, muscles, and even skin have been achy which happens when I get worn out. I just need a good night's sleep and hopefully things will be better in the morning so I'm going to head to bed now after hooking my fluids to run overnight (I think I'll be doing that most of this week because of rehearsals - easier to do blocking and all that without my backpack).
Please continue to keep Donovan, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time. I hope you all had a good Monday/Labor Day (for my US friends)!
Sunday, September 3, 2006 11:59 PM EDT
It's gonna be a good day, just wait and see
It's gonna be alright, cause I'm alright with me
It's gonna be, it's gonna be, it's gotta be..."
--Jewel
Hi Everyone,
Sorry I didn't update last night. I was so worn out from a long day and coming home and just not feeling very well so I just went to bed early. Yesterday started very early - I got up at 6am and went out kayaking, meeting up with my mom and dad in the canoe down the channel. It was kind of windy so the kayak ride wasn't as peaceful as it usually is that early in the morning but it was still good. Then we packed up, cleaned the cottage, and my aunt and uncle got there to take over the cottage (they rent it for two weeks right after us). We went out for lobster and I actually was able to eat it without much trouble, I was just smarter this time and didn't use any melted butter to dip it in (in June I wound up feeling pretty sick from lobster but it seems like it was mostly the butter's fault). Then we stayed at the cottage for a while and eventually got on the road after a quick stop at Round Top for ice cream (frozen yogurt for me). We got home around 7:30pm and unloaded (my dad did most of the unloading) and settled back in to life at home, which is a little difficult but I don't want to totally fall into my normal habits - like watching TV all day (failed on that today) and not eating well enough, etc.
Today was very quiet. Last night I started getting an awful headache and it just got worse this morning. I hoped it would go away overnight but I guess it wasn't that kind of headache. I suspected it might be a dehydration headache, even though there weren't any big reasons why I would be dehydrated, but I ran extra fluids today and it seemed to help - the headache is pretty much gone now and I hope it doesn't come back tomorrow. It was one of the worst ones I've had in a while. Other than that, I just stayed in bed or in my comfy chair in my room most of the day until I had to get dressed and go out to rehearsal for the two 10-minute plays I'm in on Friday. That was fine and it's nice to get back into some theater stuff and to be doing it with Michael (from my church) is always fun. But it's going to be one heck of a week - rehearsals every night (tomorrow it's in the afternoon) and then the performance on Friday. It will be okay, I'll manage with it all and Michael knows all about my health stuff so he's trying to not wear me out too much with everything. I also have to write my final paper for my online summer class which is due on Tuesday and my final exam is Wednesday to Thursday (due Thursday night) but I'll manage. Somehow I always manage.
I need to get to sleep - I'm really tired and still recovering from everything I did in Maine. Even though it was a great vacation and overall restful, I still didn't get as much sleep as I should have and opted to stay up and do things rather than rest so now I'm paying for it. But here are some pictures before I sign off for the night. These are ones my dad took that I didn't have access to until we got home and back on our computer network:
My dad, sister, mom, and me at Pemaquid Point.
Me and my brother (above and behind me) at Mt. Battie in Camden, ME.
Me and my brother at the library downtown in Damariscotta waiting for his bus home last Saturday.
On the cliffs of Monhegan Island - I really like this picture and it's now the main picture at the top of this page! You can even see my wonderful hydration backpack that helped to keep me going on the (easy-ish) hike. Now my pump and backpack have been hiking and out to some beautiful cliffs.
My brother and I on the cliffs of Monhegan Island.
The cliffs of Monhegan - a different angle from my picture of the cliffs since my dad went down a little lower than I did.
My sister, me, and my brother in my sister's truck, Winston.
That's it. I'm off to sleepy land and hope to sleep well tonight. Please continue to keep Donovan, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time. I hope you all had a good weekend!
Friday September 1, 2006 1:49 PM EDT
And all these messages we send (keep askin')...
"How do I get out of here?
Where do I fit in?"
Though the world is torn and shaken,
Even if your heart is breaking,
It’s waiting for you to awaken
And someday you will
Learn to be still..."
--The Eagles
It's Friday, usually a day when everyone is keeping an eye on the clock and counting down the hours until it's officially the weekend (and a three day weekend at that) but I'm doing just the opposite - wishing I could grab onto time and dig my heels into the ground to somehow slow it down so I could extend this day, or freeze it, so tomorrow won't come and my time here in Maine won't end. Yes, I know all good things must come to an end, and this is one good thing that always comes back around as the calendar flips to the summer, but that doesn't really make it easier to leave this world and go back to the real one where there's more hustle and bustle and less peace and tranquility. Not very balanced it seems. I feel (as I always do towards the end of my time here) like this vacation has gone by too fast but at the same time it feels like I've been here forever. After only a few days here, or even as soon as I arrive sometimes, it feels like that other world is just a distant memory, almost like it's not real at all. My dad says that maybe this is the real world and the world back at home is the dream, and sometimes it feels like that. But of course once I get back home and have been there for a few days, it feels like the time here on the porch and dock and sitting in front of the fire are just whisps of a wonderful dream. This place is magical somehow. Not in the sense that amazing things happen here - the sun shines and the rain falls here the same way it does anywhere else. But it's a different world. And not even just right here at the cottage, I feel it when we cross the bridge into Maine although it isn't quite as strong as it is here at the cottage. There's just something about it. I'm sure some of its magic comes from all the years of coming here and the way it never seems to change - it's timeless, except for the changes we can see in the town and a new cottage or house popping up around the lake somewhere. I feel a connection to this place more so than any other place I've ever been. It's like when we drive into the driveway my soul knows it's home.
Now it seems like it would make sense to move up here, then. Not to this cottage since a) it's not a year-round cottage and b) it's not for sale but to an apartment in town or close by. This was my plan for a while - to move up here and get an apartment after finishing college and then pursuing grad school up here and settling down. And it is still there in my mind as a possibility but there are a few things that kind of deter me from doing that. The first is that living here might take away some of its magic and I wouldn't want to do that. Having to get a job and work here like it were the "real world" might do something to it. And I would hate to live in town and not be able to come here to the cottage in the summers. But I could live just far enough away so this area would still be special - maybe closer to the coast or a little further north or south - and it would probably still hold that Maine magic that I feel throughout the state. Then of course there's all the medical stuff, including whether or not I'd be able to hold down a full-time job (or enough of one to support myself), travelling to see doctors, etc. but even all that could probably be worked out with planning. And living away from my family would be hard, but Maine and Massachusetts aren't that far away from each other, although if my family gravitates towards the west coast (i.e. the Oregon area where my older sister and brother-in-law already live) this point would require a lot more thinking. This may sound weird but one of the things that I feel pulled back home for is my church. It's grounding for me and I feel so accepted and comfortable there. And it's not because of religion (if anything it's because of the lack of typical organized religion - it's a Unitarian Universalist church which doesn't have a creed - for more info visit the Unitarian Universalist Association), it's because of the people, the minister, the choir, the building, it all just feels part of me even though I've only been going there for...wow, almost 5 years (it will be 5 years since my first time there just before Christmas this year, although I didn't start going really regularly until the spring of 2002). It's hard to explain or describe so I won't try to. I've been to the closest UU church (a fellowship, actually) here and it was nice but nothing like my church, largely because of the people. I have good friends at my church and I wouldn't want to lose that connection.
So, anyway, these are my wandering thoughts this afternoon. I'm not feeling great or else I'd probably be out in the kayak since it's a pretty calm day and I could probably manage a good ride. Hopefully in a little while I'll feel a little bit better and up for a ride since I've only been out in the kayak once the whole time I've been here. And I'm hoping to go for one last swim later on (I de-accessed with that in mind but my skin didn't appreciate having the new tegaderm ripped off it and is now all red and painful so I have some ointment on it and I'm hoping it will have healed enough to allow for accessing tonight - the alcohol used before accessing is rough on my skin under the best circumstances and when my skin is all red and irritated it's even worse). But now I think it's time for a (hopefully quick) nap to sleep off the phenergan I took a little while ago and hopefully restore my stomach enough to feel up to eating (right now I'm battling waves of nausea which could be caused by just overdoing the eating the whole time I've been here, including too much pie which has been very ambitious of me but I fear too much of a leap to be eating it regularly). When I get home I'm going to try starting on a stricter diet to keep my stomach more even instead of so many ups and downs. For a while I've been eating more or less whatever I feel like (and feel I have a hope of tolerating - some things are still way off limits) and I think after a while my stomach just can't handle it anymore and I have a lot of much worse days before it gets back to baseline. So, anyway, I'm going to stick to a very easy diet for at least a few days a week and be better about avoiding things I know are more difficult to tolerate and hopefully that will all make a good difference.
Wednesday, August 30, 2006 2:04 PM EDT
Hi Everyone,
(That quote above is from a sign at a glass replacement place down the street from the cottage - they always have some kind of saying or quote on it and I thought that was appropriate for me to put up here.)
No big update today. I haven't been writing things everyday when I'm at the cottage (and not online) because I just haven't had much to write about. We had a few rainy/very grey and cloudy days and spent pretty much all afternoon and evening on Monday by the fire in the living room - very cozy. And yesterday my dad and I (the only ones here now, if you missed the previous posts) spent all day sitting at opposite ends of the kitchen table on our computers, reading, and just kind of having a relaxing day while it was still gloomy outside. But the sun broke through in the late afternoon and we had a bit of a sunset in the evening - a very nice thing to see after a few days of nothing but rain and gloomy weather!
This morning we got up early (well, early for me) and went to Pemaquid Point to have breakfast at the restaurant there. I always get blueberry pancakes and they're very yummy but they give you three HUGE pancakes and I could never eat that much. I managed to eat about one whole one (it was actually parts of two different once since they were stacked up) and they were very yummy and it was very nice just sitting there with the sun on my face and the waves crashing outside with a cup of coffee. My dad and I talked for a long time, all about his family and what they did/do for a living and social mobility (you can see my online class breaking through there) and I learned a lot about my family - especially my great grandparents on my dad's dad's side (I never knew them but I did know my dad's mom's dad, if you can follow that, lol). So, anyway, we had a nice, long breakfast with lots of talking and then went and sat on the rocks for a few hours - a very nice day out and quite warm (I'm wearing shorts now for the first time since...well, probably Sunday afternoon if not before). Very nice.
My brother is on his way up here for the rest of the week (he got a late start today and called to say he was leaving at about the time we expected him to get here - but that's just Patrick, he leaves when he's ready to leave and doesn't stress about it all if there's no real reason to be somewhere at a particular time). Tonight we plan to go out to King Eider's Pub again which will be nice - probably another long meal. But I need to wrap this up since my dad will be back from the grocery store to pick me up soon (I'm downtown at the bookstore cafe) and he'll have ice cream in the car so I better be ready when he gets here!
Here are a few pictures from Pemaquid Point today before I leave:
Hope you're all doing well. I'll come around and visit everyone's pages soon, I promise!
NOTE: I'm posting multiple entries at a time while I'm on vacation in Maine since I'm not posting updates everyday. The most recent entry is at the top and they go back in time as you go down the page. So to read them in order, start at the bottom and go up.
Monday August 28, 2006 11:02 AM
no point in the future to get to.
All you have ever longed for is here in this moment, right now."
--Oriah Mountain Dreamer
Wow, I can't believe it's Monday already. I'm trying not to think about the shortness (is that a word?) of the time I have left here in Maine on vacation but it's hard not to let it creep in from time to time. I'm just trying to enjoy my time here as much as possible. Today is a cold and rainy day so I'm all comfy on the couch (well, futon actually but it's not folded down so it's more of a couch right now) with my cozy blue fuzzy blanket, my music playing from my bedroom (which is about 20 feet away from me here on the couch - small cottage), the smell of eucalyptus from an incense cone that just finished burning, and my computer and notebook to work on or write whatever I feel like. My dad is going to come down and build a fire and I imagine we'll spend most of the day here in the living room by the cozy fire. There was mention of going out to eat to break up the gloominess but I'm not sure if that will happen or not but I do plan to go into town at some point to go online (and post this). (NOTE: We did go out to eat at King Eider's Pub where I got my usual eating-out meal of a grilled chicken sandwich and ate a little of the fries that came with it - hope that doesn't end up being a mistake, my stomach has been a bit unpredictible lately.) I need to look at plane ticket prices out to Oregon for October and see if they've gone up (or down, which would be nice). I don't have definite plans to visit my sister but I'm basically just waiting to hear when she plans to go to Tennessee to visit friends which isn't definite either because my sister had to call one of the friends to see when would be a good time for her to go - not that any of you really cared about the specifics of that! So I have to look at that, and also search to see if I can find any other articles or books to use for my final paper (due a week from tomorrow, I believe - yikes!) and I think I wanted to look up a recipe for something but I can't remember what it was right now...maybe pancakes? Mmmmm...blueberry pancakes would be yummy some morning.
Okay, just made a list of what I need to do online (otherwise I'm bound to forget at least half of the things I meant to do) and reminded myself of what exactly my final paper is supposed to be about. It would have been good to have double checked that a while ago, like before I read a few articles so I would have known what to be looking for/focusing on. I think I rely too much on journal articles and books when I write papers - I don't write a lot of my own thoughts and ideas and mainly just bring together the topics discussed in the articles. But usually my papers for school are supposed to focus on journal articles and have lots of references and citations, it's just that this paper for my online summer class is supposed to focus more on my own ideas and be more of a free writing essay. I'm just not as good at that! Oh well, it will come together and I'm sure it will be fine. I'm too much of a perfectionist, especially when it comes to schoolwork. When I first went back to public school for a class during my junior year (after being at home for everything during my sophomore year) I spent 3 or 4 days working on a 2 or 3 page essay from the perspective of Miss Haversham from Great Expectations (one of our summer reading books) and was just way too much of a perfectionist with that. The same thing kind of happened when I first started public school in 6th grade (I was homeschooled through 5th grade - not sure if I've mentioned that before) - I spent forever working on homework that shouldn't have taken very long. In both instances, though, once I got used to school I got a little less stressed about making everything perfect but I'm still definitely a perfectionist when it comes to papers.
I was just looking through some poems and quotes I have saved on my computer and I came across this one that I really wanted to share so I'll wrap up this post with this:
After a while you learn the subtle difference
Between holding a hand
And chaining a soul.
And you learn that love doesn't mean leaning
And company doesn't mean security.
And you begin to learn
That kisses aren't compromises
And presents aren't promises.
And you begin to accept your defeats
With your head up and your eyes ahead
With the grace of a woman or a man
Not the grief of a child.
And you learn to build all your loads on today
Because tomorrow's ground is too uncertain for plans
And futures have a way of falling down in midflight.
After a while you learn that even sunshine burns if you ask too much.
So you plant your own garden
And decorate your own soul
Instead of waiting for someone to buy you flowers.
And you learn that you really can endure
That you really are strong.
And you really do have worth.
And you learn. And you learn.
And with every failure you learn.
--Anonymous
Sunday August 27, 2006 8:14 PM
--Ralph Waldo Emerson
These past two days have been good and relaxed which is very nice after a pretty busy week last week. I was so tired last night that my dad and I both went to bed around 9:30pm, something I probably haven't done in quite a while (not counting falling asleep unintentionally at that time which does happen from time to time). Since I was so tired when I was going to bed, which is when I usually get on my computer and write my updates, I didn't get a chance to write anything so I'll backtrack to yesterday. Yesterday started early with everyone up by 7:30am (I didn't have to be up by then but there was noise in the cottage so I decided to get up then). My mom and younger sister were getting packed up and ready to leave around 8:00am and my brother was getting his stuff together to send a lot of it home with my mom and sister and then take the bus home at 9:40am - lots of commotion. My mom and sister left a little after 8:00 and then my dad, brother, and I had some breakfast and headed off to town to put my brother on the bus and then my dad and I did some laundry, went to the cafe to go online (well, I went online, he read), and walked around downtown while we waited for the laundry to be done. We went down to a store called The Green Store that I like - lots of eco-friendly things as well as just the hippie type things. I got a few things including a nice purple backpack that's a great size for infusions. I probably have 6 or so backpacks for infusions now and I definitely use my hydration backpack the most out of any of them but it's nice to have a selection to choose from. And I can always use the little backpacks for other things when I'm not infusing. After that long time in town, we came home and spent most of the afternoon down on the dock, each sleeping a bit now and then and getting a little sunburned. I went out for a short kayak ride which ended up being kind of a brainstorming session about the future of Lyme Out Retreats. I decided I do want to do more of them (I was on kind of a break of indefinite length right now and not sure if I'd go forth with any more) and I've made some decisions about the structure of them, turning them more into a relaxed weekends with a few activities rather than a weekend with a schedule where there's a lot happening everyday. The main obstacle right now is finding a place to hold them at - a camp or retreat/conference center that rents to groups, that has self-cook facilities (I feel it's important that we be a self-sufficient group and do our own cooking), and that doesn't cost an arm and a leg. And preferably within an hour or two from me. I'll keep looking around and probably go tour a few places with plans to have a retreat in the winter or early spring (January - April). Anyway, the rest of the day wasn't spent doing much of anything. I tried making baked boneless buffalo wings using chicken breast and buffalo sauce and they turned out pretty good but the sauce wasn't quite right so I'll have to try some different brands to find a good one. It is nice to have another adaptable recipe, especially since I do love buffalo wings but can't usually eat them at a restaurant because they're often fried. And then, as I said before, my dad and I both went to bed early but I ended up watching an episode of Friends on my computer before going to sleep (there was a particular episode that I wanted to see for some reason, so I found the right DVD and watched it and it was a nice way to end the day).
Today was another laid back, relaxing day but with crummier weather than yesterday (it was cloudy yesterday morning but then it cleared up and was quite nice). I'd been thinking about going to church at the Midcoast UU Fellowship in Edgcombe but the final deciding factor was dependent on when I woke up this morning (their services are at 10:30am year-round). Well, I kept waking up from about 7:30am on and finally a little before 9:00am I got up, had some breakfast, and decided to go to church. It was a nice service, although there are definitely things I like better about my church (just little things, mostly about the structure of the service), and I stayed after and talked to some people which was also nice - probably the most I've conversed with people other than my family since getting up to Maine last Saturday. This afternoon my dad and I went back to Mexicali Blues because he needed some incense. I got a few more things there - a ring, some incense of my own, and sunglasses case that I thought would work to hold my IV flushes and extra supplies in my backpack but my saline flushes are too long so they'll just be for my sunglasses (there's another bag there that I'm sure would fit all my IV supplies for carrying in my backpack so I'll have to go back sometime and get that). We made a stop at the grocery store for a few things for dinner and then came home and I spent most of the rest of the afternoon baking. I made another batch of cinnamon rolls (I need to take a picture of them sometime to show how yummy they look - too bad I can't post taste samples!) which turned out good but a bit different looking than usual and I made a batch of blueberry muffins which are quite tasty (I haven't had a cinnamon roll yet but my dad had one and didn't say they weren't good so I'm assuming they're tasty, too). We had stir-fry for dinner and now we're both in the living room by the fire on our computers. It's chilly out so the fire is very nice and I'm sure it will be another early night for me tonight, not sure about my dad since he has to finish up a poster for a conference he's going to in a few weeks so he can e-mail it off tomorrow. Before I end this, here are a few pictures from the last few days:
This was the sunset on Friday night - we've been having some nice sunsets this year.
From my kayak ride yesterday. It was a nice day and very calm - great for kayaking (especially when I'm tired and can't handle too much paddling).
I took this as I was emerging from the channel back into the lake we stay on - a nice, sunny day.
Well, it's now started to rain so I'll just grab a book and a piece of blueberry pie and hang out by the fire until I start falling asleep. I hope you're all having a good week(end). Since I've been away I haven't been keeping up with CB pages like I usually do but I'm thinking of you and I'll get around to some pages and sign some guestbooks when I get home if not before!
NOTE: I'm posting multiple entries at a time while I'm on vacation in Maine since I'm not posting updates everyday. The most recent entry is at the top and they go back in time as you go down the page. So to read them in order, start at the bottom and go up.
Friday August 25, 2006 9:54 PM
--Anne B. Sekel
Well, the plan for the day didn't exactly work out the way we had planned. Going out to breakfast didn't happen because we all slept in too much - at 10:15 I staggered out of bed long enough to ask my sister if we were still going to breakfast and she said probably not, we could go out for lunch so I went back to bed until almost 11:00 - nearly 12 hours of sleep but I really needed it (and need to get to bed within the next few minutes to avoid falling asleep here in the middle of typing so I'll make this short). After all taking showers, we headed out to Mexicali Blues, although in separate cars (me and my brother went in my dad's car and my sister went in her truck). I found some nice things there and bought a cool hippie shirt and a very comfy skirt and there are a few other things I'm thinking about going back to get but I'm not sure yet. After that my brother and I went to town and out to lunch (my sister decided just to come home - she wasn't in the best mood) which was good and then I got a new dry bag (for going out in my kayak to keep my stuff dry) and went to the bookstore to go online and just get the scripts Michael (from my church) had e-mailed to me. I don't think I mentioned this before but he had asked me a few weeks ago if I'd be up to doing a few short, 10-minute plays that he's directing for an arts festival in Middleboro at the beginning of September and I said sure but since I hadn't heard from him until yesterday I thought it wasn't going to happen. Well, it will, Michael just had some stuff going on and didn't get in touch with me about it, so I have the two scripts now and they're both great comedies that I know we're going to have a lot of fun doing. They're staged readings so memorization is optional, but I'm going to try to memorize them, and we'll be rehearsing everyday once I get home on the 2nd since the festival is on the 8th! Anyway, I got the e-mail with the scripts and didn't spend long in town. Later this afternoon I went swimming (it was pretty chilly but I still went in with my brother and sister) and we got pizza for dinner (well, cheese-less calzone for me) and ice cream (frozen yogurt for me) for desert. My brother has decided to go home tomorrow for at least a few days so he's taking a bus to Boston in the morning and my mom and sister are leaving to drive home before him since she has to start school on Wednesday. So it will just be my dad and I at least until Tuesday - sigh. Well, I better get to bed! I'm really exhausted, to the point where I've opted to not access Winnie and do my fluids overnight because I just don't feel up to doing the accessing but I'll do that first thing in the morning and run extra fluids during the day tomorrow. Hopefully I won't be in bad shape because of no fluids tonight!
Thursday August 24, 2006 10:07 PM
--Helen Keller
Today was a good but very tiring day. We went to Monhegan Island which was a lot of fun. It started early - we were all up around 7:00 or 7:30am and left a little after 8:00am to get the 9:00am ferry over to the island. The ferry ride was fine although a tad bit chilly. I got a cup of coffee that took the chill of it so it was a nice ride out. When we got there we went to the village, used the bathroom (there's only one public bathroom on the island), get sandwiches to take with us on the trails, and headed up through the Cathedral Forest to Squeaker's Cove. It was a nice spot and we stayed there for quite a while lying out on the rocks and enjoying the sound of the crashing waves (although not quite as crashing as I remembered). Everyone else ate their lunches but I wasn't feeling like eating much so I just snacked on some goldfish. Then we headed up on another trail but had to turn back because we got to a steep part on an open, rocky area and my mom doesn't like going down cliffs so we went back through the first trail and stopped at the Ice Pond where there are some very friendly ducks. If you've been a long time reader of this page, you may remember the pictures of the ducks (and my brother feeding them chips) from my last visit to Monegan Island two years ago (if you didn't see that, go back to the August 2006 postings). Well, they're still just as friendly. We didn't feed them anything but while we were there, a girl who is staying on the island for a few weeks came with some bread to feed them and so they all headed over to the shore where we (and she) were. After that we got some frozen yogurt/sorbet and drinks and went to The Black Duck Emporium (one of the cool giftshops on the island). Before long it was time to head back to the wharf for the ferry back to the mainland and the day was over. We got back and we were all pretty worn out. I held up surprisingly well which I think was due in large part to the fact that I was infusing my saline the whole time we were out there - thank goodness for that and portable pumps! When we got back, I hooked up some extra fluids and I think together they'll keep me from crashing too badly, although I'll still need to take it easy over the weekend and probably most of next week. It was a very nice day. Since getting back we've been hanging out, had some dinner (I finally did decide to eat - it was weird how I wasn't really hungry or feeling like eating while out on the island and hiking and my stomach is more off than usual today), and later I played a game of Upwords with my dad and brother.
And of course, here are some pictures from the day on Monhegan:
New Harbor, where we get the ferry to Monhegan, this morning while waiting for the ferry to leave.
The classic shot of the cliffs of Monhegan.
The harbor at Monhegan taken from the wharf where the ferries dock.
My favorite picture from the day, a shot down the hill a bit of the lawn of The Island Inn down to the water.
I'll probably have some more pictures to post when I have access to my dad's pictures from the day (either later on during the vacation or, more likely, when I get home and we're back on our computer network). It's definitely time for me to get to sleep and try to recover from the day. The plan for tomorrow is to go out to breakfast with my brother and sister in the morning, then off to Mexicali Blues (I haven't been there yet and my sister wants to go), a quick stop at the kayak place downtown to see if they sell dry bags, and then the rest of the day will be for resting, relaxing, and just taking it easy.
Please keep Baby Donovan in your thoughts as he has relapsed for the fourth time and he and his family could use all the thoughts they can get. Also please continue to keep Heather, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time.
NOTE: I'm posting multiple entries at a time while I'm on vacation in Maine since I'm not posting updates everyday. The most recent entry is at the top and they go back in time as you go down the page. So to read them in order, start at the bottom and go up.
Wednesday August 23, 2006 12:18 PM
-- Ryokan
I don't have a whole lot to say this...afternoon (it was morning when I started writing this but I only got as far as picking out the quote before it turned into afternoon). Last night I got the cinnamon rolls all ready to bake this morning and although they didn't really rise in the refridgerator the way I was hoping and expecting, I took them out and let them rise while the oven was preheating and they turned out nice and big and fluffy and yummy anyway. Today the plan is to take it easy, hang out, go into town to go online and pop around to some stores, and generally have a nice laid back Maine day. I'm going to take it pretty easy so I'll be in the best shape I can be for Monhegan Island tomorrow. And here are a few pictures from the past few days:
It was pretty cloudy and stormy looking on Monday afternoon but it didn't rain.
And this is Patrick taking the first swim of the vacation. The water looked pretty darn cold.
This is the traditional picture of Pemaquid Point from our brief trip there yesterday.
And here's my sister, Margaret, at Pemaquid Point.
And my brother, Patrick, at Pemaquid Point.
And just for good measure, my parents at Pemaquid Point.
I straightened my hair today because my sister's hair straightener was turned on on the dresser when I was getting dressed. It makes it at least an inch and a half longer, although it's hard to tell since I don't have a contrast of how long it is when it's not straightened.
And finally a picture of me from today. Happy to be on vacation (but I look a little dopey, oh well).
So that's it for today. Hope you all enjoyed those pictures. I'm sure I'll have a bunch from Monhegan to post later this week. Hope everyone is having a good week so far and enjoying the last of the summer (or beginning of the school year, depending on where you live/what school you go to)!
Please keep Baby Donovan in your thoughts as he has relapsed for the fourth time and he and his family could use all the thoughts they can get. Also please continue to keep Heather, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time.
Tuesday August 22, 2006 9:56 PM
--Robert Frost
I'm sitting here waiting for my cinnamon rolls to finish their short rise before I roll them up with the cinnamon and brown sugar filling. My plan is to have them rise overnight in their cinnamon roll form in the fridge to slow down the rising process so I can get up and bake them in the morning and therefore have fresh cinnamon rolls first thing in the morning without having to do all the work early in the morning. We'll see if it works the way I plan. Anyway, today was a pretty good day. It was a nice, warm, sunny day so I de-accessed this morning and took a shower and then went swimming a little later on. Being in the water - whether it's shower or lake - is just wonderful. It was a pretty laid back day. We went to Pemaquid Point for a little while this afternoon but it was a pretty quick trip. We didn't make it back as soon as we'd planned, though, which messed up our plans to have fajitas for dinner, but that's okay, we'll have them tomorrow night. On the way back from Pemaquid my parents stopped to get the ferry tickets to Monhegan Island (we were in different cars so they stopped and us kids continued on home, although in a round about way). Unfortunately the ferry for tomorrow morning was sold out so we're going on Thursday. That might be just as well anyway so I have an extra day to rest up for it. After getting home I went grocery shopping with my dad and brother which is always more entertaining than it would seem. We brought back a rotissarie chicken and some sushi (I didn't eat it because they didn't have the vegetable sushi I eat) as well as a bottle of wine for dinner. I think I drank a tad too much wine - definitely more than I've drunk at one time this summer - and I'm still a bit tipsy but it's wearing off. After dinner we went for ice cream at Round Top (well, frozen yogurt for me) which was very tasty and now I'm just waiting for my cinnamon rolls to be ready to roll...which I think they are! After that I have to access Winnie (my port) to infuse my saline overnight and then hit the sack. It's been a long day and I really could have stood to take a nap this afternoon, but oh well. Off to roll those cinnamon rolls!
Monday August 21, 2006 10:02 PM
But my hands are not trembling and my head it is not bowed
Cause I'm not looking for any answers, no truths to be revealed
All that I am asking is to show me something real..."
--Kris Delmhorst
Just wanted to write a little something before I go to bed (early bedtime for me tonight - we're all kind of calling it an early night). I obviously made it to the cafe today and was online for a while. After that, I spent the afternoon more or less resting. I set myself up on the porch with a little bed on the metal bench couch thing (hard to explain) and my computer with a Friends DVD for a few hours which was nice. I didn't actually sleep but I was resting so that helped a bit. Later on we went out to the lobster wharf for dinner but I wasn't feeling up to lobster so I made a sandwich and brought that and some goldfish and reduced fat potato chips so that was good and everyone else enjoyed their lobster and clams. Not much else to talk about today so I guess I'll call it a night.
NOTE: I'm posting multiple entries at a time while I'm on vacation in Maine since I'm not posting updates everyday. The most recent entry is at the top and they go back in time as you go down the page. So to read them in order, start at the bottom and go up.
Monday August 21, 2006 9:20 AM
This could be
The difference between what you need
And what you wanna be."
--Matchbox Twenty
Yep, it's just after 9:00am and I'm up, I have a batch of blueberry muffins in the oven (made with fresh Maine blueberries - yummy!), and I'm here with my computer writing an update. SHOCKING! I tend to wake up earlier while here on vacation because I don't want to miss the time doing vacation stuff, unfortunately that means I don't get as much sleep so I'm more tired and I'm not good about taking naps because I don't want to miss out on anything (and it feels weird to go into my room and take a nap since there's so many other nicer places to sit and read or nap but I don't ever take naps there either). I need to be better about that if I'm going to be in good shape at the end of the vacation and ready for school to start. So far, though, I haven't been pushing myself too hard because the weather hasn't been very good. Today it isn't raining but it's cloudy and damp and looks like it will probably stay that way for the rest of the day. The plan for today is to go into town soon with my dad to go to the cafe and go online (to post this and check e-mail and do all that stuff I'm so used to doing everyday). I also want to pop into some of the stores downtown to get a few things or at least look around. And perhaps later there will be an outing to Mexicali Blues but I'm not sure about that (we always go once or twice while we're up here to get incense and look at the cool clothes and everything else they have there - it's a pretty cool store). Yesterday after I finished writing my update we had dinner - very tasty - and later went out to Round Top for ice cream (well, frozen yogurt for me - I can't have my beloved peppermint stick ice cream that I only get at Round Top because my stomach would probably have a fit about eating real, high fat ice cream - oh well, they have good frozen yogurt and low fat ice cream flavors) and then hung around, read, played some games on my computer (nice to have that to entertain me when I'm not feeling like/up to reading or doing other things). Okay, now it's about an hour after I started writing this so perhaps that's a sign that I don't have much to say! Oh, I'm also putting a new thing up on my blog. I hope you're all having a good Monday!
Please keep Baby Donovan in your thoughts as he has relapsed for the fourth time and he and his family could use all the thoughts they can get. Also please continue to keep Heather, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time.
Sunday August 20, 2006 6:40 PM
Let your dreams bind your work to your play
What can you do with each moment of your life
But love til you've loved it away
Love til you've loved it away"
--Bob Franke
I didn't get around to writing an update yesterday (Saturday) but there wasn't much to update about. The ride up here to Maine was pretty uneventful. I was riding up with my sister, Margaret (or Meg as she likes to be called now) in her new (used) truck and it was actually pretty comfortable. We hit some minor traffic going through Boston and then further up in Maine (or New Hampshire, can't remember exactly where it was) but we made pretty good time and got up here around 4:00pm with my parents about 20 minutes behind us. It was nice to get back up here and have that feeling like I never left. Somehow that's always been the way it feels when I get here. It's like I've always been here and the rest of my life - my life when I'm back home - is just a dream that I wake up from when I get here. That's how much at home I feel here. It's nice to open up the cottage door, step in, and get a good whiff of that smell that is so specific to the cottage - kind of a combination of mothballs, must, and nature (maybe not the BEST smell in the world but one that just brings with it such good memories). Now we're filling the cottage up with smells of good things being made in the kitchen. Today we're making a great vegetable soup for dinner and I just made a batch of very tasty oatmeal cookies (the adapted ones that I can usually tolerate pretty well). Anyway, back to yesterday. Once we got up here and got our stuff unloaded, I unpacked into my usual side of the dresser in the room with the set of bunkbeds that I share with my younger sister (I used to share it with my older sister when she came but now the top bunk has been passed along to my younger sister - and the bottom bunk that I sleep in used to be my grandmother's when she was still alive but when she passed away it was given to me) and generally settled into the cottage. We went out for dinner at Romeo's, a pizza place down the road that we very often go to for our first dinner here before we go grocery shopping. I was a little annoyed that my chicken teriyaki sub that doesn't say it has cheese on it (and I specifically ordered it without mayo so I could handle it better) came with melted cheese all through it. I picked out what I could that was cheese-free and scraped off the sub roll the best I could so I ended up with some edible stuff (and my dad ate some of the cheesed parts) but it just was annoying. Yeah, I could have taken it back and asked for it without cheese since the menu doesn't say it has cheese on it but I didn't feel like making a fuss about it, I'll just be sure to make a point of saying no cheese if I get any kind of sandwich there again. After dinner my dad and I went grocery shopping while my mom and Margaret came home. Then we just settled in and eventually all went to bed. I slept pretty well last night which was nice after not getting to sleep until about 3am or later the night before (I had packed some of my sleeping medicine so I couldn't take everything possible to get to sleep - oh well, I got to catch up on some episodes of a show I had taped over the last few weeks).
Today (Sunday) has been pretty laid back. It's been raining pretty hard off and on today so we haven't been able to enjoy the dock or the lake but we've had a fire going all day (although a lot of the time no one has been down in the living room to enjoy it) and I went out to the grocery store with my mom to pick up some things we didn't get yesterday and also to get the stuff needed to make the great vegetable soup (maybe that should be the name - THE GREAT VEGETABLE SOUP). We're getting ready to eat now so I need to wrap this up. All in all, I'm just really glad to be in Maine and on vacation.
Friday, August 18, 2006 11:51 PM EDT
So we can see the brighter side
And giving what we've been denied
Is all a seed need sow
All a heart need know."
--Lori McKenna
Hi Everyone,
Well, I'm (mostly) packed for Maine and looking forward to leaving in the morning for two great weeks of vacation! Today was a fairly good day overall. I got to sleep in which was VERY nice, although I didn't sleep that late, just late enough to feel good without missing too much of the day. I spent the day finishing up doing my laundry, packing, doing stuff online, packing some more, going over to my friend and co-worker Michele's house (she lives around the corner from me now which is very cool - a very nice house) because she had my camera (I left it at work on the last day of art camp and she ended up with it), and packing some more. Yeah, I packed quite a bit. But pretty much everything is packed up. Just the few things left that have to wait until the morning either because I'll need to use them or because they need to be refridgerated (i.e. vitamin/mineral syringes and food stuff). After all that packing I headed off for my theater kids' play after stopping at the pharmacy for a few refills of things and at Marion Pottery Works to pick up the mug I painted while I was babysitting a few weeks ago. My theater kids did a good job with the play and the parents were all happy and the kids were happy so that's what matters in the end, even if I always feel they could have done better. I'm just happy they pulled it off pretty well and that the class is now finished (I like the actual teaching of the class but the feeling when it's over is wonderful). Unfortunately I didn't get a picture of the kids - I'm always bad about getting my camera out before the play and afterwards the kids all scatter. Oh well. I need to head to bed now since it's getting pretty late. While I'm away I won't be posting daily updates but I'll probably write something everyday and post all of them a few times a week (internet access is limited to the coffee shop downtown and it's actually nice not to have internet access at the cottage - a little less of the "real world" to sneak in on the vacation). And of course I'll be posting pictures!
Before I sign off for the night, I have a special prayer request. Baby Donovan has relapsed for the fourth time and he and his family could use all the thoughts they can get. I just can't imagine what they have been through already and the road isn't going to get any easier so please keep them in your thoughts. Also please continue to keep Heather, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time. I hope you all had a good week!
Thursday, August 17, 2006 11:06 PM EDT
I see the dust cloud disappear without a trace
I want to take shelter from the poison rain
Where the streets have no name
--U2
Hi Everyone,
Today was overall a pretty good day. Not the greatest health-wise but good in most other areas. I had to get up early this morning - not always the best start to my day but I managed okay. I got the train up to Boston at 9:38am and had an easy ride up there and over to Mass General to see Dr. R (GI). The appointment went fine, it was short and basically consisted of me saying I'm doing okay overall in the GI area and I told him about the last few days of worse stomach problems. He thinks the pain and nausea are from my cold making the gastroparesis worse since it's already sensitive so hopefully it will get better when my cold gets better. I'm staying on the Domperidone and the only thing to keep an eye on is the side effect of being more fatigued after each dose so I'll keep tabs on that and let Dr. R know about it when I see him again in 3 months. I also told him I'll be going back on IV antibiotics in a few weeks and he said I should take both Zofran and Phenergan before each dose to prevent nausea (I was only planning on Zofran but I'd rather prevent nausea rather than deal with it when it gets bad). That's the gist of the appointment.
After the appointment I hopped on the T (subway) back over to South Station and realized I had an hour and 45 minutes to wait for the next train home so I decided to go for a walk down to Boston Common, stopping at CVS to get a notebook and pen (can you believe I didn't have any writing utensils with me?) and 7-11 to get a nice slurpee. (I didn't have my camera with me or I would have taken pictures of the gorgeous day in Boston.) The crystal light flavor there was raspberry lemonade which was pretty sweet but a nice change from my usual passionfruit at the 7-11's near me. I had a nice walk down there and realized I miss Boston. I wrote more about that on my blog so I won't go into detail about that here, just suffice it to say that it was a nice way to kill some time. I got the train back home and slept most of the way home - I was really worn out and took Phenergan in the early afternoon so that knocked me out quite a bit. This evening I've been resting, started doing my laundry so I can pack tomorrow for Maine, made some rice krispie treats (I'm being optimistic that my stomach will handle them alright, it does seem a bit better and I've been able to handle small amounts), and generally not done a whole lot but I've been recovering from the trip to Boston and back.
Health-wise things are so-so. My stomach is still a bit unpredictible. I didn't eat much of anything until the late afternoon when I was home and it seems that some things are okay on my stomach but some things aren't okay and I can't really predict what will sit okay and what won't. I'll just keep taking it easy with the food for a while longer before being outgoing with it. I was dealing with a bad headache this morning but my migraine med helped that and it's not too bad anymore. Other than that, I'm just really tired so I need to head to bed. Tomorrow I don't have anything I have to do until my theater kids' play in the evening so I'll spend the rest of the day finishing my laundry, packing, and running any errands I need to run before leaving for Maine on Saturday. I'm so looking forward to that vacation.
Please keep Diana in your thoughts as she just moved into her dorm and is about to start her first year of college - congratulations Diana! Also keep Heather, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time. I hope you're all having a good week!
Wednesday, August 16, 2006 10:32 PM EDT
but is has found no remedy for the worst of them all -
the apathy of human beings.
--Helen Keller
Hi Everyone,
Having trouble keeping my eyes open now so this will be very short. Today was an okay day. Took my car into the shop for an oil change and to have a few things looked at (nothing needed except the oil change, thankfully). I can't believe the next oil change is marked for just after it hits 100,000 miles! I just hope it lasts a while beyond that. This afternoon I worked in the office at the art center and then taught my last theater class for the summer - just the performance on Friday and then I'm done with that! After that I did a few quick errands (out of popsicles already - I go through them a lot faster when I'm not eating much "real" food) and came home where I decided I needed to clean up my room a bit. So I cleaned off my big comfy chair which gets covered in junk pretty quickly when I'm not feeling great. And I vacuumed - yeah, amazing! It's so nice to have a cleaner room but it's so easy to let it get dirty. Now I'm just exhausted and my stomach isn't liking the muffin I tried eating for dinner so I better call it a night. Tomorrow I go up to Boston to see Dr. R (GI) and I'm hoping he has an idea of why my stomach is flaring up right now. Oh well, if he doesn't I'm sure it will run its course.
Please keep Diana in your thoughts as she just moved into her dorm and is about to start her first year of college - congratulations Diana! Also keep Heather, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time. I hope you all had a good Wednesday!
Tuesday, August 15, 2006 10:35 PM EDT
the places where you can risk letting the world break your heart.
And I will take you to the places where the earth beneath my feet
and the stars overhead make my heart whole again and again.
--Oriah Mountain Dreamer, "The Dance"
Hi Everyone,
Today was an overall pretty low-key day. I got up somewhat early this morning and went off to have my labs done (the ones Dr. Bock ordered when I saw him on the 3rd but they had to be fasting so I couldn't get them done in his office). That went smoothly. Then I came home to wait to hear from Morgan's mom about babysitting this afternoon but didn't hear from her until about 1:30. We were tentatively planning on going to a movie today since it was raining but the times didn't work so I didn't babysit. So without knowing it yesterday was my last day of babysitting Morgan for the summer - a bit bittersweet. I ran some errands in the afternoon, mainly to go get alcohol swabs (to clean the end of my port tubing before hooking up to anything) but I also got some oyster crackers and cup-a-soup (yep, back to those old staples for a little while at least). I also finally got a call from Dr. Bock's infusion nurse, Marian, about getting the IV Primaxin set up to start when I get back from Maine. It only took her...close to two weeks to get started on it! Grrr! I won't be surprised if it isn't set up for me to start when I get back from Maine but I'll keep my fingers crossed and really hope it goes through smoothly (that would be a surprise!). Nothing much else to report - a pretty low-key day. Oh, I made some vegetable soup, too. It was really easy - just used a carton of chicken broth, a big can of crushed tomatoes, cut up a bunch of veggies, added some seasoning (it didn't need much), sauteed some chicken breast, and threw in some alpahbet macaroni we had on hand and voila! Pretty tasty and it's really nice to be able to experiment with making different soup from scratch since I have a feeling that will be a staple for me for a little while right now.
Health-wise, my stomach seemed a bit better by this afternoon but that may be partly due to the fact that I'm being very careful about what I put into it so it's getting a bit of a rest. My cold is still in full swing and I'm all stuffy and constantly blowing my nose. But only a few more days until I'm officially done with my summer jobs and then it's off to Maine for two weeks! Yay! Before that, though, I have some schoolwork to get done tomorrow, I'm working and teach my last theater class tomorrow afternoon, on Thursday I have an appointment with Dr. R (GI) in Boston, and then on Friday is my theater kids' play! And somewhere in there I have to do laundry and pack for Maine (I have my packing list in the works so it shouldn't be too hard to pack).
Well, I better get to bed. Please continue to keep Heather, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time. I hope you're all having a good week so far!
Monday, August 14, 2006 11:34 PM EDT
but the bumble bee doesn't know it so it goes on flying anyway."
--Mary Kay Ash
Hi Everyone,
First of all, I have to acknowledge that today is my sister and brother-in-law's second anniversary! I don't think either of them read this page but I want to wish them both a very happy anniversary. I can't believe it's been two years already! It feels like just yesterday that we were all getting ready for the wedding but at the same time it feels like such a long time ago. Anyway, just had to mention that first.
I'm not feeling all that great tonight so this will be short(ish). Today was a relatively good day but I was really exhausted all day and honestly could have (and would have) fallen asleep if given the chance. I got up a little after 9:00 after hitting the snooze button a few times (that's either the best invention or the worst invention, depending on how you look at it) and got ready to pick up Morgan and head to the beach. It's nice going to the beach early because there are less people there and it means we head home earlier, giving me a longer break between babysitting and teaching my theater class. Morgan brought a friend to the beach so that left me with a little more time to relax (and read). The tide was really high which was nice - we've mostly been at the beach at low tide and it's not as much fun to go swimming when you have to wade through seaweed to get to deep enough water to really swim. After dropping Morgan and her friend back off at home, I came home for a quick shower and headed off to the art center to figure out the lighting for my theater class's play before the class started. Class went okay, although it's getting to that "oh no, the play is on Friday and the kids don't know what they're doing!" stage where I'm a bit stressed but trying to just keep in mind that the important thing is that the kids are having fun. After class I swung by the grocery store for popsicles and a few other things (got some low-sugar fruit juice - getting a little tired of just diet soda, propel, and vitamin water), then to 7-11 for my usual slurpee (no, I don't get them everyday, but probably averaging every other day), and home to rest for the rest of the evening. My stomach/GI tract started going a little haywire soon after I got home so I haven't been able to eat much of anything and I'm putting myself on liquids until it settles down a bit. Thankfully it seems to be a tiny bit better now than it was earlier this evening. I took a very long bath this evening and that did seem to help my stomach a bit but I couldn't stay there forever! I LOVE my de-accessed days when I can just spend as long as I want soaking in the water.
Health-wise I'm still dealing with the cold (my nose is so stuffy and my head just feels a whole lot foggier than usual plus the other usual cold symptoms) and the previously mentioned GI problems. Nothing is too horrible so I won't complain about any of it! Tomorrow I'm babysitting but it's supposed to rain so the plan is to take Morgan to the movies which is fine with me - getting paid to go sit in a movie theater and watch a kids' movie, sounds like a good deal to me! In the morning I need to go get lab work done (fasting labwork so I can't eat anything more tonight, not that my stomach really seems like it will let me!) but that shouldn't be too bad, just kind of routine labs for before I start back on the IV antibiotics in a few weeks. After babysitting I'll have the rest of the afternoon and evening free which will be very nice. I have to do some serious school work to finish up the last unit's work - then I'll just have the final paper and final exam to worry about! Yay! I better head to bed now, it's getting late and I'm quite exhausted (didn't get a nap today). Please continue to keep Heather, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time. I hope you all had a good weekend!
Sunday, August 13, 2006 11:25 PM EDT
Is all that you can see,
Just keep on climbing
Til you're where you want to be
Then find yourself a resting-place
Where you feel satisfied.
And take the good view in off the mountainside."
--Michael Troy
Hi Everyone,
Well, this cold is kicking my butt and not making life much fun for right now, but it could be a lot worse so I'm not complaining...too much. I basically spent the day in bed today - watching TV, doing stuff on my computer, watching DVDs (haven't gotten to the second half of Dr. Zhivago since I wasn't really awake enough to be able to handle that today), napping quite a bit thanks in part to taking benadryl to help my congestion and sinus pain. Not a very exciting day but I got some much needed rest. This afternoon I did manage to make some chicken pasta salad which was a long process - marinating the chicken (in fat free italian salad dressing - yummy) and then baking it, chopping up all the veggies and sautéing them, and making the pasta which was probably the least difficult part of it all. I haven't actually eaten any of it yet but it's in the fridge for me to chip away on this week. Unfortunately I was feeling really sick part way through doing all that - nauseous, clammy, shaky, dizzy - and I'm not totally sure what the cause of it was. It could have been Dysautonomia related from being in the hot kitchen and being upright for most of the time or it could be hypoglycemia related from not really eating much. Whatever it was caused by, though, I sped through what I had left to do and ran back to bed to lie down and nap some more. Since I was feeling cruddy I set up a little veggie chopping board where I could sit down by putting the cutting board across the top of the garbage can (don't worry, none of the veggies touched the garbage can at all, it was all clean and hygenic). This evening I went out to dinner at Uno's with my parents, my brother (Patrick) and his girlfriend (Maria). I think Uno's is one of my favorite restaurants now that I have such trouble with food because they have a yummy veggie soup that I can handle pretty well so that's what I had. I've decided that I'm trying to be too ambitious with what I'm eating lately and trying to eat more "normal" foods when I really should still be cautious. I've been more nauseous and in more pain lately than I really need to be so I'm steping back a bit on that and trying to stick more to "safe" and "easy" foods. After getting home, I took a nice long bath and really enjoyed it. I'm glad it's not so hot anymore so I can really enjoy baths without feeling sick from the hot water and hot weather on top of each other. Other than that, nothing much to say about my day and weekend. I did find out last night that I can have more time to finish my final paper and before I have to take my final exam for my online class because the professor was planning it as an 8 week course but it's actually supposed to be an 11 week course so I'll have until just after I get back from Maine to finish my paper and I'll take the exam right after the paper is due (or right before, can't remember exactly right now). That's all good news because I was nervous about getting it all done.
Health-wise not a lot to say. The cold is definitely in full swing in my head, sinuses, and chest to some extent. I'm using nasal spray and sudafed and that seems to be helping (and knocks me out so I'm getting more sleep). I was going to run extra fluids today but decided I'd wait and see if I can manage without the extras (and it also made it possible for me to take a bath tonight since I was able to deaccess before going out to dinner). Tomorrow's plan as of right now is babysitting at the beach from around 10-2 and then teaching my theater class at 3:30. I have to go early to get the lighting figured out and I better write myself a note to bring the few props we still need (and a few costume items for kids who need to borrow things). I need to go to the grocery store to pick up popsicles (I have a new favorite kind - sugar free crayone pops which have a bunch of different flavors and are a nice change from the boring orange, cherry, and grape flavors) and to the library to return some things. Not too bad of a day but I'll need some rest when it's done. And speaking of rest, I better get to bed!
Please continue to keep Heather, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time. I hope you all had a good weekend!
Saturday, August 12, 2006 10:28 PM EDT
Laugh like we're mad
Cause this crazy, mixed up beauty is all that we have
Because what's love but an itch we can't scratch, a joke we can't catch
But still we laugh..."
--Jewel
Hi Everyone,
I'm heading to bed now (yes, an early night for me) so this will be short(ish). Today was a very low key day. I definitely hvae a cold now - sniffly, stuffy, coughing, sore throat (although that's better than it was), and just generally feeling more cruddy than usual. On the other hand, though, I seem to be eating more than my usual which isn't a bad thing, although it makes for more nausea and just general GI uncomfortableness (is that a word?). I stayed in bed pretty much all day resting and drinking lots of extra fluids along with infusing my regular IV fluids. My mom went out and got me some nasal spray and sudafed and the nasal spray helps for a few hours but can only be used every 12 hours so that's a bit frustrating and the sudafed mostly knocks me out but does help the stuffed feeling somewhat. I rested, watched TV and DVDs on my computer (the first part of the new version of Dr. Zhivago from Netflix and some ER), and napped a bit. I went out for a short walk on the bogs in the late afternoon to get out of the house and feel less like a blob. It was nice to get out but the short walk definitely tired me out so I came home and slept for a few hours. The nap was good and perked me up a bit but now I'm just ready to go to bed. Tomorrow will be another "club bed" day (as Tara would say) with no plans other than sleeping and resting and probably watching the second part of Dr. Zhivago.
Please continue to keep Heather, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time. I hope you're all having a good weekend so far!
Friday, August 11, 2006 11:34 PM EDT
What's impossible
Well they forgot
This world keeps spinning
And with each new day
I can feel a change in everything"
--Jack Johnson
Hi Everyone,
A long but good day for me today. I went to Providence and got together with my good friends Barb and Jack who I met through my Lyme retreats and have really been great friends. We got some lunch and spent a long time talking and just hanging out. Then we got in touch with our other friends, Leigh and Jim, who were coming back from the cape but would be around to get together later this evening so I opted to stick around to see them. Barb and I took naps and then met up with Jack, Leigh, and Jim for ice cream. I only stayed a little while before heading home but I got to meet Leigh and Jim's cute puppy, Scout, which was nice and it was great to see all of them. Barb and Jack are moving to Connecticut so we won't be able to get together as often as we have been, but they'll be coming back here to visit and we'll have to take road trips down there to visit, too. Now I'm exhausted and just ready for bed.
Please continue to keep Diana in your thoughts as she recovers from her shunt surgery. Also keep Heather, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time. I hope you've all had a good week so far!
Thursday, August 10, 2006 9:45 PM EDT
--Leo Buscaglia
Hi Everyone,
Another quick update tonight before I call it a (very) early night. Art camp is officially over for the summer! Yay! It just got harder and harder to get myself out of bed as the summer went on so it will be so nice to be able to sleep in more. Art camp this morning was fine, although quite frustrating to deal with kids who were more rambunctious than normal (probably partly from the full moon and partly from it being the last day of the session and performance day). They did a great job with the play and were so cute but I'm so glad it's over. We had a staff lunch afterwards which was nice, too, and then I stayed at work until 5:00 (or just before) helping get out the membership renewal mailing. Mailings are probably my LEAST favorite thing to do at work, but it's nothing too horrible. Then I popped over to the M's house afterwards to get something I left there and I talked to Lissa (the mom) for a little while which was nice. After a quick trip to the grocery store for popsicles (and a few other things) and a swing by 7-11 to get a slurpee which is one of the few things that makes my throat feel better, I headed home and I've been resting since then. My throat is still sore, but it's coming and going. Unfortunately I'm coughing a bit more and a little raspy in my chest which I'm not happy about. But I'm hanging in with all that. Tomorrow I don't have anything in the morning (yay!) and then in the afternoon I'm probably going to Providence to get together with at least two of my lymie friends (Barb and Jack) and possible with one other, haven't heard back from her yet. So that will be fun. And I have the whole weekend free with nothing to do! Woo hoo! I'm so looking forward to that!
Please continue to keep Diana in your thoughts as she recovers from her shunt surgery. Also keep Heather, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time. I hope you've all had a good week so far!
Wednesday, August 9, 2006 10:49 PM EDT
Standin' on the edge of something much too deep.
It's funny how we feel so much but we cannot say a word.
We are screaming inside, but we can't be heard.
--Sarah McLachlan
Hi Everyone,
Another quickie update tonight, but I promise I'll do a more normal update soon and fill in the stuff I haven't talked about this week. I'm feeling pretty cruddy tonight and have been for most of the day, with my sore throat persisting and actually getting worse as time goes on (grrr!). I'm pretty sure there's some kind of infection going on because my body is just exhausted (although that could be me recovering from the babysitting last week). Art camp this morning went fine, although it's frustrating to have the kids not pay attention and for me to have to scream at them to be quiet so I can get their attention (especially when my throat hurts and I already told them it hurt and I didn't want to have to yell). The play this session is going to be so cute and I'm looking forward to that tomorrow. After camp I went out to lunch with Michele (the director of art camp) and Lilly (the music/dance teacher at art camp) and her daughters (two of the cutest girls I've ever met, and so well behaved!). That was fun but tiring. I had theater class this afternoon which went fine, although again the kids were a bit haywire (it's a full moon - I swear I can tell that by how the kids act). I had to run to AC Moore afterwards to get some styrofoam cones for the art camp play (for the unicorns) and then came home, got in bed, and rested. I took a nap for about 2 hours this evening and now I'm ready for bed so I'm going to get to sleep. Tomorrow is the last day of art camp for this summer! I can't believe it's almost over. There's a staff lunch after camp so I'll stay for that and then either go to Providence to meet up with some of my Lymie friends or work in the office at the art center (I'm still waiting to hear back from my Lymie friends about those plans). Please continue to keep Diana in your thoughts as she recovers from her shunt surgery. Also keep Heather, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time. I hope you're all having a good week so far!
Tuesday, August 8, 2006 11:36 PM EDT
muffling pain and thought together in the merciful dark.
--Mary Stewart
Hi Everyone,
I'm too tired for a real update tonight. Today went okay - art camp, babysitting (easy because Morgan brought along a friend and they took care of themselves for the most part so I just sat back in my beach chair and relaxed), errands, out to dinner with my parents and sister. I'm not feeling very well - started getting a bad sore throat last night and it's getting worse so I'm just really really hoping it's not going to turn into something worse, like a cold or strep. When I get a cold it takes me months to fight it off. I did extra fluids today after getting home from the beach and errands and showering and I took some vitamin C and echinachea so hopefully that will help, too. Now I'm exhausted and will be asleep as soon as I close my eyes (I started nodding off before but had to change my hydration bag from my half liter to my full liter to run overnight so my pump woke me up and I got the rest of the way ready for bed). Please continue to keep Diana in your thoughts as she recovers from her shunt surgery. Also keep Heather, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time. I hope you're all having a good week so far!
Monday, August 7, 2006 10:55 PM CDT
But still I am one.
I cannot do everything,
But still I can do something;
And because I cannot do everything
I will not refuse to do the something that I can do.
--Edward Everett Hale
Hi Everyone,
The parents are home, I have officially given up my responsibilities of taking care of the kids and the dogs and gotten paid for the long 10 days of house/babysitting (with a little extra thrown in for the extra time I ended up putting in because their flight was delayed coming back), and I'm so glad that's over. I went over this morning and walked the dog which was actually not bad, other than having to get up early (7:15 - ugh). I enjoy taking walks like that and maybe I'll make more of an effort to take walks. I could leave early for art camp and take a walk down to the beach before camp but then I run the risk of not feeling good for the rest of the morning so perhaps I should scratch that idea. Oh well, it was nice anyway. Then I ended up not babysitting for Morgan because it wasn't a good beach day so instead I went shopping, mainly to stock back up on "my" foods but I also ended up going to K-Mart (specifically for my sugar free lemonade that I can only get there) and I got some clothes, too. Yeah, K-Mart doesn't have the best quality clothing but I got two pairs of cute capris (on sale), a cute care bears nightshirt, a David Ortiz Red Sox t-shirt (about time I got one!), a pair of very comfy pants and hoodie, and I think maybe one or two other things that I can't think of now. Most of the stuff was on sale but I still spent more than I was expecting. Oh well, I just better stay this size for a while so I can actually get use out of these clothes!
After that I came home and rested for a bit, made some rice krispie treats (decided that was better than buying the boxes of them at the store with all the added ingredients, plus it's cheaper in the long run), and got ready for my theater class. Before the class I went over to the M's house and talked to Lissa (Anne and Rady's mom) about how everything had gone at home and how their trip was (it sounds amazing). It was nice to be there and NOT be the one in charge of the kids! Then I went to teach my theater class which went fine, although the kids were a bit unfocused (not quite as bad as usual) so we didn't have time for any games after running through the play. After that for the evening I just came home and rested, had some dinner (I got some vegetable sushi at the grocery store) but I've been feeling pretty cruddy this evening (either the result of a migraine/hypoglycemic headache and/or being somewhat dehydrated) so I'm just trying to drink a lot now and get to bed asap. Tomorrow's agenda includes art camp in the morning (first day of the last week for this summer!), babysitting after that, and then the rest of the afternoon/evening with no plans. Perhaps I'll watch my Netflix DVDs or something else and just rest/sleep/recover.
Please continue to keep Diana in your thoughts as she recovers from her shunt surgery. Also keep Heather, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time. I hope you all had a good Monday!
Sunday, August 6, 2006 11:59 PM EDT
-- Christian Morgenstern
Hi Everyone,
There's no place like home! Okay, so things today didn't go exactly as planned. Anne and Rady's parents aren't home yet. Their flight from Italy was delayed by 8 hours because of some stupid flight attendant on the plane they were supposed to be getting on in Italy opening the door of the plane before the plane had landed (on the incoming flight, they weren't on that plane). So they had to fly the new part from the US to Italy so that the plane could fly from Italy to the US. Anyway, so they're not home. BUT I'm not babysitting anymore - Anne and Rady are sleeping over at a friend's house and I'm at home about to go to sleep in my own bed after 10 nights of sleeping in a strange bed in a house that's nice but not my home. I had to go over to walk the dog tonight and feed him and everything and I'll have to go over in the morning to walk him again and make sure he's okay but I'm at home and free of kids. Today Rady was especially difficult and I tried not to let it get to me too much (I tried to be patient and calm but it was very difficult). I went to church this morning which was so nice - I didn't realize just how much I missed church until I was back there! Michael did a good job with his "sermon" and he talked to me about a theater thing he's been asked to participate in and he wants me to be in at least one of the two short plays he'll be doing (he doesn't know what plays they'll be yet, but he'll let me know when he does and we'll start working on them). So I'm excited about that. After church I went back to the M's house and made pancakes for a late breakfast/early lunch and then later I took Anne and her friend Virginia to Wal-Mart and out for ice cream. It was a nice day overall except for the frustrations with Rady. I wish I could have finished the week and a half on a good note with him but I guess he just was having a bad day. Or more like he was getting progressively crabbier and less compliant with my requests as the week and a half went on. I need to get to bed now so I can get up and go walk the dog in the morning before going to babysit Morgan at 9:30 (ugh!). Then I teach my theater class in the afternoon and I'll swing by the M's house before that to see them (the parents should be home by about 11:00am) and get paid for the long 10 days of house/babysitting. Then I actually have the rest of the afternoon and evening to myself! Woo hoo!
Please continue to keep Diana in your thoughts as she recovers from her shunt surgery. Also keep Heather, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time. I hope you all had a good weekend!
Saturday, August 5, 2006 11:31 PM EDT
is to have been able to give a large part of one’s self to others.
--Pierre Teilhard de Chardin
Hi Everyone,
Down to the last night house/babysitting and I'm really exhausted and ready to go home to my own bed and REST! Last night the dog was really good compared to how he's been most nights this week - he didn't whine or bark at all that I can remember and I was able to get to sleep at a fairly reasonable time. But this morning I still didn't want to get up and had to drag myself out of bed. It's been interesting being on such a different schedule while being here and in some ways I like it - being up longer and able to do more - but I'm so ready to be home and able to sleep in on mornings when I don't have art camp or anything else (which will pretty much be every morning after this coming week - the last week of art camp for the summer!). When I got up, Anne had already walked Patrick which was a nice surprise (it's hard to believe sometimes that she's only 10 with how responsible she can be). I did my morning routine - gave Rady his meds, had some breakfast and coffee, this morning Anne wanted scrambled eggs so I made those for her and sat around talking to her for a while. She had plans to go help a friend sell tickets to the antique show down the street in the center of Marion so I dropped her off at that at 10:00, ran some errands (had to get a plunger - figures that while I'm here the toilet clogs and I can't find a plunger anywhere!), swung by my house and got to talk to my mom for a while, then picked Anne up and headed off to the mall shortly thereafter (after unclogging the toilet - took all of 30 seconds once I had the plunger - ahh, the glamour of being in charge of a house, lol). Anne and I spent quite a while at the mall and it was fun but very tiring. By about 3:00pm I was drooping quite a bit and we'd gone to every store we wanted to so we headed home. She had a bunch of birthday money (her birthday was last Saturday) so she was spending that and I got a few things - a pair of pajama shorts at Old Navy, another pair of really soft fuzzy socks (this time from JCPenney), a pair of penguin earrings and a nice small backpack from Claire's (the backpack is a good size for my infusion stuff and part of the proceeds from it go to the Make a Wish foundation which is great), and I think that's it. It was fun but I was really wiped out so we came home and relaxed a bit (after swinging by the grocery store to get stuff for tacos for dinner and a few things so Anne and I could make brownies tonight). We had dinner then made the brownies which turned out pretty good (they were a recipe from a cookbook she got in the mail today as a birthday present from her uncle). Now both Anne and Rady are headed to or already in bed, Patrick (the dog, not sure if I've ever mentioned his name) is asleep here at my feet at the table, and I'm about to take a nosedive into my computer if I don't get to bed myself. So I better head up and get myself tucked in before a pull a Diana and fall asleep on my laptop keyboard (if you've been reading Diana's page you'll get that, otherwise don't worry, it's not that important).
Tomorrow my plans are to get up early and get over to church since the service is by my friend, Michael (he was the director of the play I was in for the dinner theater in the spring of 2005) and then get back here fairly early (well, by 10:30) to make pancakes for breakfast (Anne requested them this morning but I said I was too tired so I'd make them tomorrow). Anne wants to go to Wal-Mart to look for temporary tattoos so I'll take her there and other than that we have a pretty laid back day planned (or not planned would be more accurate). Their parents will be getting back sometime in the late afternoon or around dinner time and we have a little welcome home party planned - we got a Friendly's party ice cream roll today and have brownies and Anne has a few presents for them so I'll stick around a little while for that and hopefully to hear about Europe (I need to come back when they get their pictures developed and see all the places they went). It's going to be so weird to go back to my own house, sleep in my own bed, not have to worry about getting the kids up and putting them to bed, not have the dog to take care of, just generally go back to my "normal" life. It will be weird but I'm ready for it. I think I'll miss Anne and maybe we'll take trips to the mall just as friends and not with me babysitting sometime - that would be fun. Okay, time to get to bed. Last night here! Yay! I've survived the 10 days (well, almost, just have to make it through tomorrow!).
Please continue to keep Diana in your thoughts as she recovers from her shunt surgery on Monday. Also keep Heather, Dylan, Jaxon, Tara, Aly, and Sarah in your thoughts as well as everyone else having a rough time. I hope you're all having a good weekend so far!
Friday, August 4, 2006 10:56 PM EDT
You'll go thru anything.
And on your way to be free
You know, love is everything.
--Shawn Mullins
Hi Everyone,
I'm sitting here watching "What Not To Wear" after Anne requested to be allowed to stay up to watch it (it's apparently her favorite show) but she's fallen asleep on the couch and I'll wait to wake her up until the show is over when I'll shoo her and Rady both off to bed and get to bed myself. Last night was a rough night thanks to the dog who kept me up until about 1:00am trying to figure out where he would finally agree to settle down for the night. Every 10 or 15 minutes I had to come downstairs to let him out on the porch or let him back in or put him out on the front steps or let him back in - I'll be so glad when I'm home and don't have a dog to deal with! I know he doesn't mean to be a pain and it's hard for him to deal with his "parents" being gone but it's just reinforced the fact that I'm not a dog person. My day today wasn't too bad. Anne was sleeping over at a friend's house and Rady actually got himself up around 8:00am which was nice (although he was playing with the dog and they were both making quite a bit of noise right outside my bedroom) so my morning was a bit more laid back than usual. I ran over to my house briefly to pick up a few things I forgot to get yesterday and then ran over to 7-11 to get a slurpee (I've really been in popsicle and slurpee withdrawl since I haven't been able to take off and get things for myself). Then I did some school work out on the porch for a little while until I had to go to work at 1:00pm and work was fine - pretty low key and I spent a while doing stuff online (mindless stuff, not anything productive).
After work, I took Anne and her friend over to Marion Pottery Works which is one of those places where you pick a piece of pottery, paint it, and then they glaze and fire it for you. I'd never been there or to any place like that before so it was as much for me as for them. I painted a nice big mug that's cool because it has flat sides and Anne made a plate for her parents as a welcome home present (although it won't be ready for about 10 days so it won't be here when they get home). Then we came home for a quick dinner and headed off to see the play (The Drunkard) at the art center. That's the play I was supposed to be in but there was all that drama with Wendy and all that. I didn't think I was going to see it because I was still feeling kind of upset about everything that happened with it but it was something to do with the kids so I opted to see it anyway. Rady only lasted through the first act (out of three) and left during the first intermission (isn't it interesting how he can sit and play video games for hours and hours and hours but he can't sit through an hour and a half play?) but Anne and I enjoyed it. My friend and co-worker Michele was in it and she was really good and my theater kid, Maddy, was the only kid in it (she played the daughter of the main woman) and she did a great job, too.
Health-wise today hasn't been great and as the day has gone on, a migraine has been building but hopefully I'll go to sleep and get rid of it overnight. I'll take something for it before I go to bed. I'm also just so tired and at the point of almost counting down the hours until Anne and Rady's parents come home except that I don't know exactly when they'll get here, just that it will be in the afternoon (probably late afternoon). I really need to just sleep for a while, but of course I have to work next week so it won't be that restful but at least it will be more restful than it's been while I've been house/babysitting! Other than my head and the fatigue, health stuff isn't too bad. I better get the kitchen cleaned up and then wake Anne up and get her and Rady off to bed before calling it a night myself. Please continue to keep Diana in your thoughts as she recovers from her shunt surgery on Monday. Also keep Heather, Dylan, Jaxon, Tara, Aly, Sarah, and Kara in your thoughts as well as everyone else having a rough time. I hope you all had a good week and have a great (and restful) weekend!
Thursday, August 3, 2006 11:59 PM EDT
Though the road only got longer, we endure.
And I swear it makes us stronger
Even when the wolves are howling at the door…
We endure.
--Janis Ian
Hi Everyone,
Today was a long day but I got some extra and much needed rest so that was good. I didn't sleep very well last night (which has been pretty common since I've been house/babysitting and not in my own, comfortable, comforting room - I miss my room so much) but I managed to get up this morning when my alarm went off and did my usual morning stuff including taking a quick shower (I love being de-accessed when it's hot out and being able to take refreshing showers a lot). I made it over to art camp for an hour before I had to leave to go to my appointment with Dr. Bock. Art camp went fine - I only had the oldest group so that was nice. Then I quickly got my stuff together, dropped Anne off at a friend's house (where she's spending the night) and then zipped home to meet up with my dad and head off to New York. I slept part of the way to NY and talked to my dad quite a bit which was nice. After not really seeing him for a week it was nice to have the time together. When we got to Dr. Bock's office, I settled down into one of the nice reclining chairs in the waiting/infusion room and soon drifted off to sleep. We ended up waiting for about 45 mintues before being taken back and I slept on and off for that time. The appointment itself went pretty well. My weight is stable (thank goodness!) although still a little bit below my "normal" weight. Dr. Bock agreed with me that the Mepron and Zithromax doesn't seem to be helping and since it's rough on my stomach it makes sense to stop it. And he agrees that I should go back on the Primaxin again to see if I will improve on it like I was starting to before. But he wants my stomach (and me in general) to be as good as possible so I'll take a month off (it was originally going to be two weeks but since I go to Maine two weeks from Saturday it seemed best to wait until I get back) and then start on the Primaxin. They'll set it up now (and it may very well take the whole four weeks to get it set up) so it will be ready to go when I get home. I'll also be taking a supplement to help keep my white cell count up since it dove pretty low towards the end of the time I was on it before (in early- to mid-January). So that's the plan. I see Dr. Bock again in 6 weeks - about a week and a half after I will (hopefully) be starting the Primaxin. When we were checking out, I had a happy surprise that Amber (who was my nutritionist when I was on the gluten and corn free diet and worked as the supplement person in the office) was there and I found out why she hasn't been there for a while - she has a beautiful baby boy! He looks about 3 months old and it was a surprise to see she had a baby because the last time I saw her I didn't even realize she was pregnant. Her little boy is so cute and happy - he was just smiling nad laughing at me. It was just really nice to run into her and I hope to see her again at one of my appointments.
My dad and I drove to my aunt and uncle's house for dinner and had a nice (although somewhat short) visit and it was nice to see them, as always. And then I slept most of the way home from there. I was really tired. After a quick gathering of things I needed from home, I headed back over here to the M's house and Rady got home from his friend's house around 10:00pm. I wish they were both spending the night somewhere so I'd have a night to myself, even if I still needed to be over here at least I'd be alone, although still have the dog, who, by the way, is driving me up the wall and a big reason for me not getting a good night's sleep. But he seems to be settled down right now so I should get to sleep while it's quiet. Thanks so much for coming by to see me. I'd love it if you'd sign the guestbook! Please continue to keep Diana in your thoughts as she recovers from her shunt surgery on Monday. Also keep Heather, Dylan, Jaxon, Tara, Aly, Sarah, and Kara in your thoughts as well as everyone else having a rough time. I hope you're all having a good week!
Wednesday, August 2, 2006 10:47 PM EDT
--Kahlil Gibran
Hi Everyone,
Another quickie tonight. It's just too hot to be on the computer for very long. Today was an okay day - 7 days of house/babysitting down 3 1/2 to go! (Yeah, I'm counting down the days at this point right along with the kids.) Art camp went fine this morning and I was so happy to be in the air conditioned building since it was extremely hot today. After art camp, Anne suggested we go to Friendly's for lunch and I was fine with that since it meant a ride in an air conditioned car and then sitting in an air conditioned restaurant (although it wasn't that air conditioned, not as much as we would have liked). In the car going there, the temperature read 99* and then up to 102* at one point - way too hot for my taste (and makes for not a great health day for me). After a little while in a sweltering house (which, by the way, lost power for a while this afternoon) I headed over to the art center to enjoy the wonderful a/c and prepare for (and then teach) my theater class. That went fine. A little later on I went back to the art center for more a/c and to finish writing the play for this session of art camp. This evening we went out and rented Aquamarine (and went to KFC for Rady to get food - I swear, that kid doesn't have a clue what a balanced diet looks like but I'm trying not to stress out over his eating chips and cookies and fried foods all day long since I'm just the babysitter and he's not my responsibility after that) and watched that which was pretty good. Of course Rady didn't watch it with us, he was off playing the video game he rented. Now it's cooled down a bit thanks to a rainstorm and hopefully I'll be able to sleep somewhat comfortably (I'm going to de-access when my infusion finishes in a few minutes and hop in the shower so I'll feel less stick tonight - I'm not feeling as drained as I would if I hadn't done an extra half liter of fluids today). Health-wise, not a great day today but I blame a lot of it on the heat and not being in air conditioning for a good chunk of the day. Now it's time for bed!
Please continue to keep Diana in your thoughts as she recovers from her shunt surgery on Monday. Also keep Heather, Dylan, Jaxon, Tara, Aly, Sarah, and Kara in your thoughts as well as everyone else having a rough time. I hope you're all having a good week!
Tuesday, August 1, 2006 10:56 PM EDT
Condemnation does not liberate, it oppresses."
--C.G. Jung
Hi Everyone,
Just a quickie update tonight because it's late and I'm not feeling very well. Today was a really hot day and I was de-accessed so I didn't get my IV fluids during the day when I really needed them so I'm feeling pretty cruddy. Art camp this morning went fine, this is going to be a good session with a lot of older kids so I'm looking forward to working with them on a challenging show (although it's still just art camp so it's not that challenging, more just for fun). After art camp I came over to the M's house and basically spent the afternoon trying to stay as cool as possible. I took a trip out to the grocery store to get a few things and went over to the art center for a little while to take care of things and also just to get in some air conditioning so I'd feel a bit better. The kids are starting to really wear on me and I'm so ready for the week of babysitting to be over. I was supposed to babysit for Morgan this afternoon but that didn't happen because of miscommunication and since it was so hot out. Tomorrow is art camp and then my theater class and I'm going to go over and see if my boss could use some extra help during the rest of the afternoon (an excuse to get in some air conditioned time because tomorrow is supposed to be another really hot day).
Okay, off to bed now. The dog is being a big pain tonight and being loud but hopefully he'll quiet down soon. Please keep Diana in your thoughts as she had shunt surgery yesterday. Also keep Heather, Dylan, Jaxon, Tara, Aly, Sarah, and Kara in your thoughts as well as everyone else having a rough time. Hope you're all having a good week so far!
Monday, July 31, 2006 11:32 PM EDT
Give yourself some time to falter.
But don’t forgo knowing that you're loved no matter what
And everything will come around in time.
--Sarah McLachlan
Hi Everyone,
Today was a very long day and started very early so I'm really worn out. The house/babysitting is really taking its toll but hopefully the rest of the week will prove to be a little less tiring since I'll be away from the house for a while each day (and all day on Thursday). This morning I was up at 6:30 to get dressed and off on my way to my appointment with Dr. Hubbuch at 9:00. I left some extra time and stopped at home to drop off a few things and print out the application for a handicapped placard (the one I had expired in June and I need a new one at least by the time school starts at the beginning of September). The appointment with Dr. Hubbuch went well. I'm realizing with each visit just how nice it is to have a PCP who I trust, who listens to me and understands me and really seems to know me, not like my old PCP. Nothing new happened at the appointment but it went well. I also told her about my dad's early Lyme and was able to get him in to see her on Wednesday! I know that if I'd just called to get him an appointment I wouldn't have gotten him in that fast but she came out to the office with me to make sure he got in as soon as possible. I feel better now knowing that he'll see her and make sure to get proper treatment and avoid all the late stage complications - much better to err on the side of caution and overtreat now rather than risk him ending up much sicker later on. After the appointment I stopped at Whole Foods Market (there's one on the way home from her office) mainly to get pepper jack rice cheese that I've only been able to find there and I picked up some other things, too. I stopped at home briefly on the way home, too, and after I got back here to the house I'm staying at this week, I ended up calling home and talking to my mom for a while (I was trying to get in touch with my dad but he was out and it wasn't that important). I've actually been homesick since I've been staying here and haven't seen or talked to my family very much. I'll be glad to be home on Sunday and crawl into my nice, comfortable bed and SLEEP! I taught my theater class this afternoon and that went fine, although I'm still struggling to have the kids take the play somewhat seriously. Oh well. Tonight we went out to dinner at IHOP (difficult getting the kids to agree on a place to eat) and ran a few errands on the way home - not very exciting - and then took the dog for a walk. Now it's getting late, Rady still isn't in bed (he wandered downstairs to get something about a half hour ago and I don't know what's taking him so long - I should investigate), and I need to get to bed soon since I have art camp in the morning and then an afternoon at the beach with Morgan and at least Anne if not Rady and/or one of Anne's friends.
Please keep Diana in your thoughts as she had surgery to have a shunt put in this morning. Also keep Heather, Dylan, Jaxon, Tara, Aly, Sarah, and Kara in your thoughts as well as everyone else having a rough time. I hope you all had a good Monday!
Sunday, July 30, 2006 10:34 PM EDT
Hi Everyone,
Quick update tonight since it's about time for me to go shuffle Rady off to bed and head to bed myself (if he'll go to bed quickly, that is). Today was a busy and tiring day but I managed okay. Last night was a bit of a rough night because of their dog being a pain. He was whimpering and barking a lot and keeping me awake (of course he would always bark just as I was drifting off to sleep) so eventually at about 1:30am I got up and went down to see what was the matter. He seemed like he wanted/needed to go out so I opened up the front door (not the main door used in their house) and he went out and just sat on the front steps! I stayed up for about a half hour and then lured him back inside with a treat and he was okay until about 7:00am when he started doing the same thing so I hooked him up to his outside line and went back to bed. I'm definitely not a dog person. Anyway, so today I took Anne and her friend to the mall and we had a good time shopping and walking around together. I was overjoyed to find the best jeans (for me at least) at Old Navy which they haven't had for a few years so I got two pairs of them (in two different sizes - yeah, that's more or less the story of my wardrobe these days), another pair of pants that were on sale, and a pair of really soft fuzzy socks so it was a pretty productive shopping trip for me. Then tonight I went with Anne to walk the dog and we took a really long walk but it was nice, until it got buggy. So now I'm really worn out and need to go send Rady to bed so I better wrap this up. Tomorrow I have to be up early and leave around 7am from here to stop at my house and then go off to my appointment with Dr. Hubbuch and I'll be back here sometime around noon to hang out for a few hours and then teach my theater class. Not a horribly busy day but an early one so I need to try to get to bed soon!
Please send good thoughts to Diana as she'll be having a big surgery tomorrow. Also keep Heather, Dylan, Jaxon, Tara, Aly, Sarah, and Kara in your thoughts as well as everyone else having a rough time. Thanks so much for coming by to see me and I hope you all had a good weekend.
Saturday, July 29, 2006 10:57 PM EDT
It's gonna be a good day, just wait and see
It's gonna be alright, cause I'm alright with me
It's gonna be, it's gonna be, it's gotta be..."
--Jewel
Hi Everyone,
Today was a relatively laid back day but a laid back day while house/babysitting is still so much more tiring than a laid back day at home. For one thing, I have to get dressed in the morning - no lying around in my PJs all day - and I can't very well just lie in bed all day watching TV or doing stuff on the computer. So, I got dressed this morning and took a walk down to the post office to mail a few things and then went over to the library to get a book for my final paper for my online summer class. It's interesting being so close to everything and being able to walk there. It was a hot day, though, so I spent most of the rest of the day either inside (not air conditioned but still pretty cool) or on the screened in porch on my computer or reading. I took Rady to the mall briefly to get out of the house (my request, not his) and then this evening we went over to their friend's house for birthday cake since today is Anne's (the girl I'm babysitting) birthday. She's officially 10 and it was nice that we could celebrate it with her (she had a celebration with her parents before they left). Other than that, I really didn't do much of anything today but that was fine with me. I almost felt like I should have volunteered to work today since the art center is right next door and I had to be up and dressed anyway. Oh well, maybe I'll offer to work on Wednesday afternoon before my theater class since I'm already babysitting on Tuesday and working on Friday and Thursday is my Dr. Bock appointment. I could use the extra money and it's kind of nice to have an excuse to get out of the house. Plus the art center is well air conditioned and Wednesday is supposed to be really hot. There aren't any plans for tomorrow. I had thoughts of trying to go to church but I hate to abandon the kids (not that they care much if I'm around or not and I'd be back around 10am so they probably wouldn't miss me) so I'm not sure if I'll end up going.
Please send good thoughts to Heather, Dylan, Jaxon, Tara, Aly, Sarah, Kara and Diana (she has a big surgery coming up on Monday) as well as everyone else having a rough time. Thanks so much for coming by to see me and I hope you're all having a good weekend.
Friday, July 28, 2006 10:45 PM EDT
understands where you have been,
accepts what you have become,
and still, gently allows you to grow.
--William Shakespeare
Hi Everyone,
I'm more or less falling asleep here so this will be short (although I can't go to bed until I get the kids to bed - bleh). Today was long and last night I didn't sleep very well - a combination of being in a strange bed, sleeping in a room facing a major street (and not being used to hearing cars at night, I'm sure it wouldn't have been as much of a problem if I was still living just outside Boston), and not having air conditioning to keep me cool. A night without enough decent sleep is a big deal for me and, although it's not infrequent for me to not sleep "enough" hours (for me at least), the fact that I couldn't rest much during the rest of the day made it harder to deal with. But I've made it through the day and hopefully the kids won't give me a hard time about heading to bed very soon. This morning I met my good friend Jess for coffee/breakfast and that was very nice. Jess was my theater teacher at the art center starting when I was 8 so I've known her for 2/3 of my life and she's been a great mentor and friend to me. After a scare of locking my keys in my car and managing to get them out by sticking my arm through the slightly open window and unlocking the door with a pen (since my arm isn't long or thin enough to reach all the way to the lock) we had a very nice visit. It had been about a year and a half since I'd seen her (except for running into her at the grocery store last week - very random) so it was great to have that visit. I feel so blessed to have a good friend (well, more than one) who I feel I can really just talk about anything with and even after not talking for years, it's still completely comfortable talking. After that I came back "home" (well, my temporary home while I'm house/babysitting) for about an hour and then headed next door to work - very short commute, lol. Work was fine and I was actually happy to be there and considered it a bit of a break from my bigger job until a week from Sunday - the babysitting. Thankfully, though, the kids both ended up going out to a movie and dinner with friends this afternoon/evening so I had a few hours to myself which was very nice. I had a chance to go get a slurpee to cool me down and take some time to lie down with a DVD in my computer and rest for a while. Now Anne (the younger one) is sleeping over at a friend's house around the corner and Rady (the older one, obviously) has a friend sleeping over (Anne's friend's twin brother, interestingly enough) so I don't feel as bad about keeping to myself and resting tonight.
Health-wise today hasn't been great but it's not as bad as it could be. My stomach itself is okay but my GI tract in general is being funky - not sure what's going on there. And I've had a migraine more or less all day, except for a few hours after taking some medicine for it this morning. I haven't been able to take my preventative migraine med because I get it through my mail-order pharmacy and the Rx had run out so they had to call Dr. Bock's office and that just took a while. But I finally got it in the mail today so hopefully that will stop these migraines from becoming a normal occurrance like they used to be. I just need to go to bed now so I better go warn the kids (Rady and his friend) that they have 15 minutes until it's bed time! (I'm being too soft with them, I think - they're supposed to start heading to bed earlier than that but I want to make things as easy for me as possible so I'll be a little leniant.)
Please continue to keep Kaitlyn's family in your thoughts as she earned her wings on Sunday. Also please send good thoughts to Heather, Dylan, Jaxon, Tara, Aly, Sarah, and Kara as well as everyone else having a rough time. Thanks so much for coming by to see me and I hope you've all had a good week and have a great weekend!
Thursday, July 27, 2006 10:28 PM EDT
--Anne B. Sekel
Hi Everyone,
I'm happy to say that I do have internet access here at the house I'm staying at for 10 days while house/babysitting so I'll be able to update on my regular nightly schedule (more for my continuity than yours, I think). Today was a very long and tiring day and I just hope the week and a half of house/babysitting gets a little easier as the time goes by (I think it will). Not that it was a rough afternoon/evening, just not my usual quiet, lying-in-bed, resting thing. Art camp this morning went well - the kids did a great job for the play and I was very proud of them, especially the few who had real lines to memorize and did a wonderful job. I'm glad that the second session of camp is over, though. Just one more two-week session to go! Yay! After camp I swung by the bank with my sister to deposit our checks for this session and then headed home to finish getting my stuff together, grab some lunch, and head over here to the M's house. The afternoon was relatively quiet but I felt I needed to be out hanging out with Rady (the older kid) who was playing a video game and then we watched a DVD. I really just wanted to take a nap but he likes having someone around to just hang out with so I was fine doing that. I definitely need to take more time out to rest, though, or I'll be in a huge crash by the end of the weekend. We went out for dinner just at a local fast-food-ish place and the food wasn't great on my stomach but I managed okay with some zofran to help. And I spent a while online on my laptop downstairs (so I wasn't totally out of range from the kids) doing school work and just this and that. Now I'm about ready to go shoo Rady up to bed and head to bed myself. Tomorrow morning I'm meeting my very good friend Jess for coffee/breakfast which I'm looking forward to but I'm not totally sure if I'll be able to go by myself or if the kids will want to come along. I'd like to go by myself since I haven't seen Jess for a year and a half or so and it would kind of impede on the catching up to have the kids along but I'll see what they say in the morning when I'm getting ready to go. I have to be up at 8:30, though, to wake Rady up to give him his morning meds (he has ADHD) so I better go get him started to bed and head there myself.
Please continue to keep Kaitlyn's family in your thoughts as she earned her wings on Sunday. Also please send good thoughts to Heather, Dylan, Jaxon, Tara, Aly, Sarah, and Kara as well as everyone else having a rough time. Thanks so much for coming by to see me and I hope you've all had a good week!
Wednesday, July 26, 2006 11:59 PM EDT
--O. Carl Simonton
Hi Everyone,
I'm almost done with the second session of art camp! Yay! Only one left to go after tomorrow. Today seemed like a long day and something funky is going on with my stomach even without the antibiotics to mess it up more so that just wore me out, too. But it was an okay day overall. Art camp went pretty well but some of the kids were not doing a very good job of listening and following directions and paying attention which is always tiring. I had a sore throat and was losing my voice halfway through the morning which doesn't usually happen (I'm usually losing my voice by the end of the morning but not before then). Then I drove Morgan home because her mom had a conference call at noon and couldn't pick her up (and I don't babysit on Wednesdays because that would just be too much with art camp and my theater class). I had a little time at home to try to eat some lunch (I may have to put eggbeaters on my "makes me nauseous" list but I don't want to give up on them yet), worked on some costume stuff for the art camp play tomorrow, and went off to teach my theater class. The kids in that class also seemed a bit off the wall today so maybe it's a full moon or something but they had a good time which is what really matters.
After class I went next door (next to the art center, that is) and sat down with Lissa to talk specifics about me house/babysitting while she and her husband are away. They leave tomorrow morning and come back a week from Sunday so while they're gone, I'm basically in charge and taking care of the kids but I'm still going to be able to do all my regular stuff (work, babysitting, doctor's appointments, etc.) and the kids have playdates and are old enough to occupy themselves a lot of the time. But it will still be tiring for me, I'm sure, and I'll be living at their house so that will be a little weird for me but I'm sure I'll handle it alright and I'll just have to be sure to take rests when I can and try to pace myself. I'll also be close to home so I can come pick up things if I need things (so I don't have to bring over a week and a half's worth of clothes and medical supplies). But I'm all packed up now to get me through to the beginning of next week and after art camp tomorrow I'll come home to pick up all my stuff and head over to their house. While I'm there I'm not sure how much internet access I'll have so I'm not sure how often I'll be able to update but I can always pop next door to the art center everyday to check my e-mail and post a quick update so I'll try to do that!
Okay, bedtime. I'm all accessed and hooked up to my fluids overnight which I really need. Giving my skin a break from being accessed and not doing my hydration yesterday took a toll on me but my skin appreciates it so much. Please keep Kaitlyn's family in your thoughts as she earned her wings on Sunday. Also please send good thoughts to Dylan, Jaxon, Tara, Aly, Sarah, and Kara as well as everyone else having a rough time. Thanks so much for coming by to see me and I hope you're all having a good week so far!
Tuesday, July 25, 2006 11:10 PM EDT
--Eleanor Roosevelt
Hi Everyone,
Today was an okay day overall. Art camp went fine this morning and actually went by quickly which was nice for a change. Either I was in a bigger fog than usual or I was more awake than usual because it usually feels like a really long 3 hours. I'm sure the coffee helped and I also did more of a grazing breakfast rather than trying to get down what I can before camp starts and maybe have a few crackers sometime in the middle of the morning so I think grazing is a better plan for my breakfasts. After camp Morgan and I went to the beach for a few hours and I actually had a good time there. It wasn't super hot but warm enough to go in the water so we went for a swim and went out to the raft for a little while, played in the sand, got slushes (the lemon flavor seems to agree with my stomach more than my favorite watermelon flavor that I got yesterday), and then packed everything back up and headed for her house to drop her off so she could take a bath before her theater class at 3:30. It was a fun afternoon. Then I came home, took a shower to wash the beach off of me (I didn't seem to be quite as sandy as yesterday), and spent the afternoon doing stuff online (none of which was school work), watching DVDs and TV, and resting. I was de-accessed today to go to the beach and as I was getting ready to put the EMLA on Winnie (my port) to get ready to re-access, I just looked at my poor, dried out, angry skin and decided I could manage without my fluids today to give my skin a bit of a breather. I've been putting lotion and ointment on it to try to heal it up a bit before I go at it with the alcohol and tegaderm again tomorrow and hopefully that will help reduce the skin soreness and pain I usually have for a while after accessing (the alcohol to clean the area is really rough on skin!).
I also had a quick phone call with Lissa who lives next door to the art center (where I work). She used to work at art camp and I know her pretty well - I've babysat for her kids a few times and her daughter took theater with me a few sessions (and used to come to art camp) and a while ago she asked if I'd be available and willing to stay with her kids while she and her husband are away for about a week and a half. It's snuck up on me but they're leaving on Thursday so I'm going over there tomorrow after my theater class to talk over all the specifics and get the schedule figured out. I'll still be able to do all my usual work things and go to my two doctor's appointments next week (Dr. H on Monday and Dr. Bock on Thursday) but I'll be staying at their house and basically be the one in charge of looking after the kids (they're...10 and 13 or a little older, I think - at least going into 6th and 8th grades).
Okay, bedtime for me! Tomorrow is art camp in the morning and then my theater class in the afternoon so a bit more of a quiet day than my "typical" summer day but I've figured out that art camp, babysitting, and theater class all in one day is just too much. Please keep Kaitlyn's family in your thoughts as she earned her wings on Sunday. Also please send good thoughts to Dylan, Jaxon, Tara, Aly, Sarah, and Kara as well as everyone else having a rough time. Thanks so much for coming by to see me and I hope you're all having a good week so far!
Monday, July 24, 2006 11:11 PM EDT
--Vincent van Gogh
Hi Everyone,
Tiring day today and I'm feeling kind of yucky but not as bad as I could be feeling. I had another difficult-to-drag-myself-out-of-bed-hit-the-snooze-button-half-a-dozen-times morning. I got myself up, showered, and got everything together for a day (well, half-day) at the beach with Morgan, the girl I babysit in the summer. We had a pretty good day at the beach - swam a bit (although not as much as we usually do because it was low-tide), dug a big hole (yeah, exciting!), had some slush, and I got a bit too much sun. I'm not sunburned like I was after going to the beach last Monday but I'm definitely worn out and have a headache which I usually get after being in the sun too long. Overall, though, the time at the beach wasn't as tiring as it is sometimes and it went by pretty quickly so before I knew it we were packing up and I was heading to drop Morgan off at home. I came home, took a shower to get the beach off me (amazing how there's a specific feeling the beach leaves on you...and in your hair), accessed Winnie (my port) to start up some extra fluids to help me rebound from the long day, and headed off to teach my theater class. The class went pretty well but it's a little difficult running the play with the kids because they've been having a hard time staying focused for very long at a time. Maybe that's a sign that I should only run half the play each week and spend the rest of the time playing games or working on other things (like projection - the kids really need to work on that).
After the class I had some time to kill while waiting for a refill of phenergan to be ready so I swung by the library to pick up a book that I may use for the play for next session of art camp, then over to Wal-Mart to pick up a few things, and finally to the pharmacy for the phenergan and over to 7-11 for my usual slurpee. My dad and I talked for a bit when I got home and we each made our own dinner (it's interesting that we each made our own thing even though we were the only two people home (my mom's away for the week and now that my sister has her license she's never home) but we just each knew what we wanted and had our own plans). I'm really ready for bed now - hooked up to my normal fluids to run overnight and then de-access again in the morning for another day at the beach. Usually I wouldn't agree to swim at the beach two days in a row (i.e. one of the two days Morgan would bring a friend or just understand that I can't go in the water over my knees) but we've had so few days at the beach this summer that I caved and said I'd swim. I also don't totally mind having more days when I can take showers and cool off. So tomorrow I have art camp in the morning, and then babysitting until 3:30 when Morgan has theater class (not with me) and then the rest of the afternoon and evening are free, although most likely will be spent doing school work or something like that. Oh, and speaking of school, I got my grade for my mid-term and I got a 95 which I'm very happy about. I was a bit worried and just thrilled to be doing so well in the class when I haven't been having a great summer health-wise.
Please keep Kaitlyn's family in your thoughts as she earned her wings yesterday. Also please send good thoughts to Dylan, Jaxon, Tara, Aly, Sarah, and Kara as well as everyone else having a rough time. Thanks so much for coming by to see me and I hope you all had a great Monday!
Sunday, July 23, 2006 11:11 PM EDT
--Anne B. Sekel
Hi Everyone,
Nothing exciting to report today. I honestly spent the whole day in my pajamas in bed watching ER DVDs (haven't watched the whole second season yet so I thought it was time I got on that!). It was a nice restful day but I'm still really exhausted so I'm going to head to bed now. Tomorrow I babysit from 10-2 and then teach my theater class at 3:30 so it will be a pretty full and tiring day. Health-wise today wasn't great but not horrible. I woke up with the beginnings of a migraine but waited on taking meds for it until I knew it wasn't going to go away on its own. It was really only bad when I was upright so I managed with it pretty well while lying down. My stomach doesn't like me right now after eating too much throughout the day but hopefully the phenergan I just took will kick in soon. I'm taking a break from my antibiotics (well, one's an antibioic, the other is an anti-protozoal drug) for a few days to give my stomach a rest - I was starting to feel pretty sick after each dose. That's how things tend to work with me - I seem to tolerate oral meds alright at first but the longer I'm on them, the more nauseous I get with each dose. Originally this med vacation was just going to be for yesterday so I'd be feeling a little better for Megan's wedding but I think a few extra days off them will be good for my stomach. Okay, I'm off to bed!
Please continue to keep Dylan, Jaxon, Tara, Aly, Sarah, Kara, and Kaitlyn in your thoughts as well as everyone else having a rough time. Thanks so much for coming by to see me and I hope you all had a great Sunday!
Saturday, July 22, 2006 11:25 PM EDT
they must be felt with the heart.
--Helen Keller
Hi Everyone,
I'm exhausted and generally icky tonight but today was really a fun day at my friend Megan's wedding. It's a little scary that one of my good friends is now married - someone I've known since 6th grade, no less. I've been thinking back through our years in school together, the year we were apartmentmates in Boston, and just all the years that have gone by. We were living together when she met her husband (wow, so weird to call him that). He's a wonderful man and I know they will be very happy together. Megan was a beautiful bride and I was so glad I was able to be there and be a part of celebrating their love and committment to each other. The ceremony was very nice and I sat with a few high school friends. And the reception was fun, although windy and quite wet at times (it was held at a YMCA camp and we were all sitting on covered deck with the sides open). I sat with one of my other old Boston apartmentmates, Emmy, who was a bridesmaid in the wedding, and some of Megan's other friends from college who I'd met before. I held up pretty well throughout the day but by the time I left the reception around 4:30 I was really worn out so I came home and crashed. I put on a movie but was falling asleep so I ended up just taking an hour and a half nap. Now I'm pretty ready to head to bed and have the whole day tomorrow to just rest!
Please continue to keep Dylan, Jaxon, Tara, Aly, Sarah, Kara, and Kaitlyn in your thoughts as well as everyone else having a rough time. Thanks so much for coming by to see me and I hope you all had a great Saturday!
Friday, July 21, 2006 11:39 PM EDT
I am over the water
And I'm scared as hell
But I know there's something better
Yes I know there's something..."
--Paula Cole
Hi Everyone,
Today wasn't too bad for me overall, although it was definitely a funky stomach day. I didn't sleep too well last night and kept waking up either too hot or too cold so it wasn't a really restful night but at least I got to sleep in until about 10:30 this morning. I did a little more work on my midterm, had some breakfast (which didn't seem to sit too well on my stomach and either that or my morning antibiotics left me feeling really queasy for the rest of the day), de-accessed and took a shower, and headed out to work. The shower was so nice and made me feel a little better. Work was kind of busy with stuff to do because there was a new art show opening tonight. So I had to make the list of pieces in the show and some other things which took quite a while. Eventually my boss left and I had an hour left to work on my midterm so I got a little more done (mostly reading). Then a quick detour to 7-11 to get a slurpee (yeah, that's become a regular after-work thing for me) and came home to plug away at my midterm. I finished it and e-mailed it off at about 11pm so now I'm done with that!! Such a relief to have that over with. I took another shower tonight in preperation for my friend, Megan's wedding tomorrow (yeah, I didn't mention it last night because I didn't realize it was already that late in the summer!) and picked out something to wear to that. Then re-accessed Winnie (my port) and I'm ready to head for bed. Health-wise today was a bad stomach day and the heat and humidity was definitely getting to me so I was just feeling all over pretty icky but staying in the air conditioning helped. Hopefully I'll hold up well tomorrow at Megan's wedding and I hope to have a great time!
Please continue to keep Dylan, Jaxon, Tara, Aly, Sarah, Kara, and Kaitlyn in your thoughts as well as everyone else having a rough time. Thanks so much for coming by to see me and I hope you all had a great week!
Thursday, July 20, 2006 11:59 PM EDT
And dreamser's dreams like bedsheet sails
And I believe in Peter Pan
And miracles, anything I can to get by
And fireflies..."
--Lori McKenna
Hi Everyone,
Yay! I'm half-way done with the summer of Art Camp and there's hope I'll make it through in one piece, lol. This morning I spent almost 45 minutes hitting the snooze button. Needless to say I was having a hard time getting myself up but tomorrow and Saturday and Sunday I get to sleep in later! Once I got going a bit, the morning went fine. The kids this session are a bit more difficult at times than other sessions of kids but overall they're good kids. Thank goodness I decided to read them the story I used for the play this session because that calmed them down a bit and really kept their attention. I wish I could read them books more often but that doesn't really fall under the category of "theater" except when it has to do with the play. Oh well.
It didn't end up being a nice day (not raining, just cloudy) so instead of going to the beach to babysit Morgan we grabbed some lunch at the general store (or rather she grabbed some lunch, I didn't get anything) and came back to my house to play for a while. Of course I got dragged out on the trampoline for a little while (that girl can really tire me out!) but thankfully we spent about an hour watching TV, resting, eating lunch, and taking turns playing a solitaire peg game she found in the coffee table drawer so that gave me a rest. After dropping her off I came home and got started on my mid-term and I've been chipping away at it slowly all evening. It'll take me quite a few more hours tomorrow to finish it (partially because I have to read or re-read a lot of the articles that were assigned and I didn't read carefully enough or didn't get a chance to read at all) but I'm sure I'll finish it if I pace myself. I want to get a little more reading done before I call it a night so I better get to that.
Tomorrow I'm only working from 1-5pm in the office at the art center which will be a nice change from the long days I've had so far this week. Then my friend, Megan's wedding is on Saturday (I really need to write things on my big calendar so I don't have a chance of forgetting things when I don't look in my pocket planner regularly). I'm really looking forward to that and just hope I hold up okay, especially since the reception isn't going to be air conditioned (it's outside at a beautiful YMCA camp). And Sunday I have nothing!! Yay! Please continue to keep Dylan, Jaxon, Tara, Aly, Sarah, Kara, and Kaitlyn in your thoughts as well as everyone else having a rough time. Thanks so much for coming by to see me and I hope you're having a great week so far!
Wednesday, July 19, 2006 10:45 PM EDT
--Hazrat Inayat Khan
Hi Everyone,
Today was an okay day for me - I felt a bit "off" but it wasn't too bad. It was another morning of not wanting to get up when my alarm went off but I knew I needed to go in early so I forced myself out of bed after only hitting the snooze button once. With coffee in hand I got myself out of the house a little bit later and got everything done at work that I needed to get done plus some extra stuff (got a jump start on the play for this session of art camp and adapted the book it's based on - "The Baby Beebee Bird" - to go with the "zoo" theme of this session). Camp was quite a bit different today than usual because we had an electrician coming to do some work so we can finally run the theater air conditioner and the studio air conditioner at the same time without the fuse box overheating and causing the power to go out. So he had to turn off the electricity to the whole building which of course meant that we couldn't very well do our normal activities so we went over to the park for the first 45 minutes to do some art things and collect some leaves and sticks for another project. Then we went over to the Natural History Museum (on the top floor of the library which is right around the corner from the Art Center) for another 45 minutes which was actually pretty fun. I mean, 40 kids in a smallish room (it's just one room) with 7 adults looking after them is a little bit challenging but the kids had a good time and I enjoyed looking at some of the things with them and helping them understand things so it was fun. From then on the rest of the morning went as usual - snack time in the park (my break time) and then each group got to go to their last activity so I only had one group for theater for the whole day which was okay by me - less thinking and planning (I knew ahead of time we were going to be having this weird day today).
When camp was over I decided I needed a slurpee (it's becoming a fairly regular thing for me, especially on days when my stomach is feeling funkier) so I went and got that and then came home to rest for a bit, finish preparing the script for my theater class, and then went off to teach that (I forgot about that when I said yesterday that I didn't have anything to do this afternoon - so easy to forget things). The class went well and the kids seem to be doing well with the play so far. I'm really impressed with one of the girls who is only 7 and, when reading through the script the first time, she stumbled over some words that I helped her with but then when we started staging it, she remembered how to pronounce all the words! I made a quick trip to the grocery store for a few things (yes, more popsicles - I'm not out of them yet but I figured if I didn't get them while at the store anyway today, I'd need to go back by the end of the week to get more) and then came home and I've been resting, watching TV, and basically taking it easy. Tomorrow is art camp in the morning and then I'm supposed to babysit but, looking at the weather report, it doesn't look like a good beach day so I'm not de-accessing Winnie (my port) until I know more certainly that I'll be going to the beach (I'm more than half hoping I don't have to go to the beach after spending the last few days recovering from going there on Monday). But I'll only be babysitting until 3:30pm anyway when I have to drop Morgan off at her theater class (she's taking a singing, acting, movement, etc. theater class at the Art Center that's taught by someone else). The rest of the day will be spent starting work on the mid-term for my online summer class. Ahhh! Can't believe it's already time for the mid-term! I have until midnight PDT (which would be 3am EDT) on Friday to finish it so I'm not worried about being able to finish, but I'm concerned about pacing myself so I better chip away at it as much as I can tomorrow. I'm glad the week is almost over and my summer of work is almost half-over (good and bad that it's going by so fast)!
Well, I better get myself to bed (I took a lunesta a little while ago so by the time I was ready for bed it would have kicked in and it's starting to kick in already). Oh, and my dad is feeling much better already. He was able to get back to work (in his office the basement - he works from home) for a good part of the day today and is just generally feeling better so that's really good. Now we just have to worry about whether the two weeks of antibiotics are going to be enough for him - I'd feel much better if he had another two to four weeks on top of that so I better remember to call and make an appointment for him with Dr. H (one of my old Lyme doctors and my current PCP)! Please continue to keep Dylan, Jaxon, Tara, Aly, Sarah, Kara, and Kaitlyn in your thoughts as well as everyone else having a rough time. Thanks so much for coming by to see me and I hope you're having a great week so far!
Tuesday, July 18, 2006 10:08 PM EDT
--Carl W. Buechner
Hi Everyone,
I'm really tired and feeling kind of cruddy tonight - probably partially an after effect from being at the beach yesterday (I wish the sun and hot weather didn't cause so many problems) and also from the meds I started last week. This morning it was difficult getting myself out of bed but my pump beeping and alarm clock going off both eventually forced me out of bed. But, since I didn't make any iced coffee yesterday for this morning, my sister and I stopped for coffee on the way to work which helped wake me up a little bit. The first morning of session two of Art Camp went pretty well today. It's interesting, though, to see that the middle-aged group is actually the hardest group to handle this session whereas last session it was (more predictibly) the youngest group. And then this afternoon I had nothing I had to do! So, after coming home and taking a nap, I took myself out to the movies and saw Pirates of the Carribean. I liked it but it dragged on a bit longer than I thought it should. It's always nice to take myself out to the movies, though, and I actually enjoy going alone. I stopped at 7-11 on the way home and got a slurpee (yummy!) and then came home and crashed for the evening. I've been watching some DVDs, just watched an episode and a half of House on TV, and I've just been taking it easy. Tomorrow I'm pretty sure I'm not babysitting because it's supposed to rain and Thursday is supposed to be nice so we're tentatively planning on going to the beach then. I'll be very happy to have another afternoon free to work on school work and rest a lot. Now I just need to finish up my saline infusion and then get to bed. I did make some coffee tonight so I'll have iced coffee in the morning which will be much appreciated when I'm stumbling around and trying to get out the door early to get the administrative stuff done for tomorrow and Thursday.
Please continue to keep my dad in your thoughts that he can get proper antibiotic treatment and not have any further complications as well as Dylan, Jaxon, Tara, Aly, Sarah, Kara, Kaitlyn, and all the other kids (and adults) having a rough time. Thanks so much for stopping by to see me.
Monday, July 17, 2006 11:00 PM EDT
Go instead where there is no path and leave a trail.
Only those who will risk going too far
can possibly find out how far one can go."
--T.S. Eliot
Hi Everyone,
Not a whole lot to say tonight (or maybe I'm just too tired and foggy to really be able to think of much to say). Today was a long day. I babysat from about 10am to 2:30pm and we spent most of that time at the beach. Morgan and I went to the beach right after I picked her up (after some moodiness on her part threatened the whole day's plans) and spent a while there with just the two of us going for a swim (tiring!). Then we went and picked up her friend, Skye, and got some lunch at the general store and headed back to the beach for a while longer. There were some bumps in the road having to do with Skye not liking to swim in the ocean and Morgan not really wanting to do anything else (that's what the moodiness in the morning was about, too) but they got along well after a little coaxing and when I went to drop Skye off, Morgan asked to stay there to play for a while longer so I just left her there and dropped off the beach stuff at her house. Then I ran home to jump in the shower to wash the beach off me, got dressed, and rushed back out to go teach my theater class. The class went well but I can't do the play I was planning to do with the class because two more kids joined the class as of today. This evening with some searching and tweaking I found another play, though, so we'll start that on Wednesday.
After the class I headed over to the grocery store to re-stock my popsicle supply (I go through those things so fast!) and very randomly and wonderfully ran into my very old friend (and my theater teacher from when I was younger), Jess. It was very strange because I had been thinking about her earlier today and it was so random to run into her. We hadn't seen each other in about a year and a half and we had plans to get together for coffee a few times in the last few months but something always came up to prevent it. So we stood in front of the coffee for a while talking and we're going to get together for coffee on Saturday which I'm really looking forward to. She's just someone who has always supported me and really understands me and I've really missed not seeing her regularly since she stopped teaching theater quite a few years ago. So, after that I was feeling pretty happy and came home to spend the rest of the day doing stuff online, finishing up some school work, watching some TV, infusing extra fluids to help me bounce back from the hot day at the beach (I got sunburned, by the way - ouch!), and typing up the new play for my theater class. Tomorrow morning begins session two of art camp so I better get to bed soon so I'm pretty well rested for that. Thankfully I'm not babysitting so I have the afternoon to rest, sleep, rest, recover, rest, do school work, rest...you get the picture.
My dad's Lyme rash has gotten worse and is even more obviously a Lyme rash now. He went to the doctor today (not his PCP but the PA in the same office) and was given a measely two weeks of low-dose Doxycycline but I'm going to get him an appointment with my old Lyme doctor who is now my PCP and hopefully I'll be able to get him in to see her soon. I hope he starts to get better soon because it's hard to see him so sick and just feeling awful. And ironically now I'll get to go with him to his Lyme doctor appointment for a change instead of the other way around.
Please continue to keep my dad in your thoughts that he can get proper antibiotic treatment and not have any further complications as well as Dylan, Jaxon & Robin, Tara, Aly, Sarah, Kara, Kaitlyn, and all the other kids (and adults) having a rough time. Thanks so much for stopping by to see me.
Sunday, July 16, 2006 11:22 PM EDT
-Maya Angelou
Hi Everyone,
Another very low-key day for me. Stayed in my pjs all day watching TV, DVDs, doing stuff on the computer, and generally resting a lot. I also got a shower this evening which was very nice and helped to cool me down some from a hot, sticky day. My temp has been funky again today but there's good and bad news about that. The good news is that we're pretty sure I can't catch what my dad has. The bad news is that's because we think he contracted Lyme disease while at the country fair when he was visiting my sister in Oregon last weekend. He remembered having felt something on his leg while he was out there so he checked it last night and saw that there's a rash there now that looks very much like a Lyme rash. The good thing is that he caught it early and thought to look for a rash so hopefully he'll get proper treatment right away and won't have any further complications with it. I know what's really "proper" treatment so as long as we find a doctor that agrees to treating long enough with high enough dosage of antibiotics he should be fine. So, that then leads to the question of what exactly is going on with my temperature. I think it might have something to do with having slightly hotter weather lately but probably more likely is that it's a response to the treatment I began for Babesiosis on Monday. The first time I went on this treatment (back in...2002, I think) I had a reaction like this where I felt like I had the flu about 4 days into the treatment so that's most likely what this is. Anyway, so my day wasn't exciting at all so I won't really go on about it. Now I need to get to bed so I'm rested enough to handle babysitting (finally going to the beach tomorrow if the weather report is right) and my theater class tomorrow. Then on to session two of Art Camp starting on Tuesday and my week stays pretty busy, but I don't have to babysit on Tuesday so at least I'll have that afternoon free.
Okay, off to bed with me. Please continue to keep my dad in your thoughts that he can get proper antibiotic treatment and not have any further complications as well as Dylan, Tara, Aly, Sarah, and all the other kids (and adults) having a rough time. Thanks so much for stopping by to see me. I hope you all had a great weekend!
Saturday, July 15, 2006 10:21 PM EDT
The trick is, knowing how to tip ourselves over
and let the beautiful stuff out."
--Ray Bradbury
Hi Everyone,
I'm really not feeling well right now so this is going to be really short. I did a mid-afternoon post (below this one) about how I totally forgot yesterday was Winnie the Port's 2nd birthday! No celebration, but I'm very grateful to have made it two years with no line problems. Today was very low-key. I stayed in my pajamas and in bed for the most part. Watched TV, quite a few Friends DVDs while doing stuff on the computer, working a bit on school work, taking a nap this evening, getting my dad drinks (he's more or less been in bed all day - the flu), etc. This evening when I woke up from a nap (Phenergan-induced) I was feeling really hot and just not good so I took my temp and it was 99.5* which for me is pretty much a fever (I'm usually around 97.4*-97.6* or so) but hopefully it was just because I was hot from just waking up. I'll keep an eye on it, though, and take it very easy again tomorrow. And I'll probably give myself some extra IV fluids tomorrow, too. That's pretty much it for me tonight. Make sure to read the update below about Winnie! And please keep my dad in your thoughts for a quick recovery from the flu as well as Tara, Aly, Sarah, and all the other kids (and adults) having a rough time. Thanks so much for stopping by to see me. I hope you all had a good week!
Saturday, July 15, 2006 3:42 PM EDT
I can't believe I totally forgot that yesterday was Winnie the Port's 2nd birthday! I had the counter up and everything, but things are bound to slip my mind with everything I've been trying to remember/do/etc. So, I have now officially had Winnie for TWO YEARS and the most trouble I've ever had with it was, early on after getting it, sometimes it wouldn't work to draw labs. But that only happened once or twice in the first month or two after getting it put in. I count myself VERY lucky to not have had any more serious problems with it! So help me wish Winnie the Port a very happy 2nd birthday!
And, in honor of it, here's a little slide show of me and Winnie. (If anyone thinks this is weird, just keep in mind that two years with no infection or anything in a central line is a pretty big deal...at least as far as I'm concerned. And Winnie really has been wonderful!)
Friday, July 14, 2006 11:59 PM EDT
ignore the small saily difference we can make which, over time,
add up to big differences that we often cannot foresee."
--Marian Wright Edelman
Hi Everyone,
Another late night for me, but I just finished this week's school assignments (usually they're not due until Monday but the mid-term is next week (oh my goodness!) so we had one unit due tonight and another one is due on Tuesday. I know what I'll be spending my weekend doing. Anyway, today was an okay day although not the greatest stomach-wise. I slept in (yay!), not really late but late enough for me to feel a little more energetic than I have the other mornings this week (when I've had to wake up early) and did some things online, ate some breakfast, and got dressed and off to work. Work was okay but I had a lot to do - got things printed out and organized for the second session of Art Camp that starts on Tuesday (I like to be really organized because things are chaotic enough even with really good organization), updated the guest list for the big fundraiser party that took place tonight, added up four pages of checks to get things ready for a deposit (I'm sure glad I don't totally hate adding things up...and I'm so grateful for calculators), and had some time to get all the scripts ready for my theater class on Monday. After work I decided I needed to get a slurpee (can you believe I don't think I've ever had one before?) so I went out of my way to 7-11 to get one (an interesting passionfruit crystal light flavor - not necessarily my favorite flavor but definitely tasty) and then got a call from my sister that she needed a ride home from work so I went back over to near the art center to pick her up and come home. If we'd planned on me picking her up to start with I could have easily stopped in to get her on my way home from work, but no big deal, it was a nice day so I didn't mind the extra driving.
When I got home I tried doing some school work but my brain was on strike so after a short time of not getting very far, I decided to take a break to rest and watch Prozac Nation which I have from Netflix. It's based on the autobiographical novel by Elizabeth Wurtzel and I really liked it. At the end of the movie, there's a very interesting statement by Elizabeth (played by Christina Ricci) about what it feels like to be on prozac. I don't think I've really mentioned this before on here, but before my Lyme diagnosis I was put on prozac, mainly to help migraines that my (now ex) neurologist thought were from a serotonin imbalance but also to help some with depression kind of as an added bonus. I hated the way I felt on it and this statement kind of sums it up: "I see myself becoming this person who does the right thing, you know, says the right thing, but that's not me...But I can't be this person without taking pills...This feels like everything's just being covered up." It's that last sentence that strikes home the most for me. When I was on it, I just felt like everything was being masked and I couldn't really feel anything. Bad things would happen and I wouldn't really feel anything about them. And this wasn't in a good way. It was like I was being denied that human right to be ourselves, own our feelings, cry when we're sad, laugh when we're happy, and have a wide spectrum of feelings. But, enough about all that, I could write a lot about it I think but I'll save that for another time since it's late and I'm tired and need to get to bed. I did finish my school work and e-mailed it off around the time my mom got home with my dad after picking him up at the airport (or actually at the shuttle from the airport). My dad is quite sick - cough, fever, the whole nine yards - and my dad very rarely gets sick so when he's so sick and in bed it's a little startling. I know he'll get a lot of rest this weekend and hopefully recover quickly. It's probably just a bad flu, but with it being respiratory, too, my mom is/was a bit concerned it might turn into pneumonia so if you could keep my dad in your thoughts that he feel better that would be great.
Okay, I'm off to bed, maybe I'll watch some Friends until I fall asleep since there's nothing really on TV right now. Although the Lunesta I took is starting to kick in so maybe I won't need much to watch before I conk out. But first, one picture from the DYNA Summer Chill (yes, there are still pictures I haven't shown you yet - this one was taken by Heather):
This is me, Erin, Heather, and Kate spelling out DYNA in sign language
Please keep Tara, Aly, Sarah, and all the other kids (and adults) having a rough time. Thanks so much for stopping by to see me. I hope you all had a good week!
Thursday, July 13, 2006 11:29 PM EDT
Just because they're not on your road doesn't mean they've gotten lost."
--H Jackson Brown, Jr.
Hi Everyone,
Today was a very long and tiring day, and I didn't even babysit this afternoon! Art camp this morning went well, although the kids were more out of control than usual. They pulled it together for the actual performance, though, and the parents were raving about how well it went so I'm really proud of them and happy it went smoothly. I came home with a sore throat and less voice than I had when I woke up, but that happens more or less everyday at art camp (you'd think that since I'm used to projecting for theater, I'd be able to project over the kids and not ruin my throat...you'd think). It was a very rainy day and Morgan and I were both tired so we opted to not doing anything (Morgan is the girl I babysit for in the summers, if you haven't been reading my updates regularly). So me and my sister (who also works at art camp, not sure if I've mentioned that before - she's in the art studio as the arts and crafts assistant) headed home with a stop at the bank to deposit our checks for the first session of camp (it ended today - on to session two next week!). I had something to eat and rested for a little while and then headed back out to bring my sister to work and then run a bunch of errands. Not actually that many errands, but it took a long time. I went to Wal-Mart and picked up a few things including a sno-cone/slush maker that was pretty inexpensive. I haven't been able to try it yet because you have to make ice in these special containers for it to work so I'll try that out tomorrow. I've been trying to make my own slushes with gatorade and it works okay but I'm sure the real machine will work better. I got home and pretty much crashed. I've been watching some TV, took a nap, talked to a few friends online briefly, did a little school work, had some dinner, and now I'm ready to head for bed. Tomorrow I get to SLEEP IN!! Yay! I just have to be at work (to do stuff in the office) tomorrow at 1:00pm so I'll have a little more of a laid back morning. I'm really looking forward to that and then the rest of the weekend with nothing to do!
Please keep Tara, Aly, Sarah, and all the other kids (and adults) having a rough time. Thanks so much for stopping by to see me. I hope you're all having a good week so far!
Wednesday, July 12, 2006 11:59 PM EDT
--Rabindranath Tagore
Hi Everyone,
It's late. I'm tired. Blah blah blah. (Seems like it's the same thing I say every night when I updated - maybe I should start updating earlier in the evening.) Today was okay - fairly uneventful. I did NOT want to get up again this morning but managed just two hits of my snooze button (I think it was 3 or 4 yesterday morning). I also brought coffee with me which probably helped me make it through the morning. Art camp went fine - the kids were a little more under control today so it made things go a bit smoother. Then I drove Morgan (the girl I babysit for) home, swung by my house quickly to change my clothes (out of my "work" shirt, if you can call it that - it's just an Art Center t-shirt) and grab some lunch, and then went back to work to do stuff in the office for a few hours and then teach my theater class. That all went fine, too, and the class is very low-key and quiet which I'm not complaining about at all. After that I stopped to get popsicles and then came home and spent the rest of the day more or less resting.
Now it's bed time so that's it for me tonight. Tomorrow is the last day of the first session of art camp (wow!) which means the kids perform their play for their parents and everyone else who comes to see it. Then I might be babysitting but, since it's supposed to be another rainy day, Morgan might just go back to her house and occupy herself for the afternoon (her mom works at home). I can't believe I've been babysitting for two weeks and have yet to go to the beach. Usually I'm at the beach at least twice a week with Morgan! Hopefully next week will be nicer! Please keep Tara, Aly, Sarah, and all the other kids (and adults) having a rough time. Thanks so much for stopping by to see me. I hope you're all having a good week so far!
Tuesday, July 11, 2006 11:59 PM EDT
Open the fist clenched in wanting and see what you already hold in your hand."
--Oriah Mountain Dreamer
Hi Everyone,
Another late night so no long update today. I didn't want to wake up at all this morning and hit the snooze button on my alarm quite a few more times than I usually do. But I dragged myself up and had an okay but really really tiring morning at Art Camp. For some reason the kids all just seemed less able to pay attention and do what they were asked and all that important stuff that just makes things more difficult. It seems like my throat is always really sore and my voice is starting to go by the end of the morning. I guess I need to find a different way of talking loud other than shouting. After camp I babysat just for a little over an hour. It wasn't a good beach day so we came back to my house and played with my sister's chameleon and then I took her (Morgan, the girl I babysit for, not my sister) home and ran some errands. I spent the rest of the afternoon/evening resting, finishing up the school work from this past week (I have more assignments due on Friday - ugh, I hate feeling like I'm falling behind already, but this week's assignments aren't as bad as last week's), watching TV, talking to some of my wonderful friends online, and generally trying to take it easy. I got a shower this afternoon and then re-accessed Winnie (my port) who is almost 2 years old! It may sound stupid or silly to be paying attention to my port's birthday but, really, Winnie has been so great and I'm so thankful to have it and to not have had any problems with it since it was put in almost two years ago. It'll be two years on Friday and I'm thinking of having a little celebration of some sort in honor of it.
Okay, before I call it a night here are a few pictures from this afternoon.
Morgan and Margaret (my sister) with her chameleon, Caesar
Caesar up close
That's it for me tonight. Please keep Tara, Aly, Sarah, and all the other kids (and adults) having a rough time. Thanks so much for stopping by to see me. I hope you're all having a good week so far!
Monday, July 10, 2006 11:59 PM EDT
--Eugene Kennedy
Hi Everyone,
Not much of an update tonight because it's late, I'm really tired, and I have to get up early tomorrow to go to week two of Art Camp. Today was okay. I slept in quite a bit and really needed it (and probably could have slept for much longer if I had let myself). I mostly rested until I had to get dressed and ready to go to work to take care of a few computer things (my boss doesn't know how to do quite a few computer things) and then teach my theater class. It was supposed to be two classes but two of the three kids signed up for the older class didn't show up so we cancelled it for today and I'll see if they're still planning on doing the class when I see one of their sister's tomorrow (they're cousins). A quick trip to Brooks to pick up the rest of my Zithro and a few things at the grocery store and then I spent the rest of the day in bed resting, watching TV, doing stuff on the computer, and finally getting some school work done. Now I really need to get some sleep. But first, here are a few more pictures from the Chill (not taken by me but by others there).
Me and Diana
Me and Diana showing our super-cool matching infusion backpacks! (Tara has a matching one, too, but she wasn't there so we couldn't get a picture of her with it, too.)
Group picture after singing the song that was voted to sing (it was "Hero" by Mariah Carey).
GOOFY SLIPPERS! I never put up a picture of mine so you get to see them here (on the left) along with Diana's (on the bottom), Sarina's (on the right - the frogs), and Kate's (on the top). Diana and I ended up doing very similar things (spelling out DYNA on the slippers) without even knowing the other one was doing that!
Okay, that's it for me tonight. I hope you all had a good day! Please keep Tara in your thoughts as she hasn't been feeling well, Sarah who has just relapsed, Aly who has been having a rough time, and all the other people having a rough time. Thanks so much for stopping by to see me! Don't forget to sign my guestbook if you have a minute.
Sunday, July 9, 2006 10:56 PM EDT
For, indeed, that's all who ever have."
--Margaret Mead
Hi Everyone,
I made it home from the chill, safe and sound but very worn out. So intead of going through a long update I'll just do a mini-update and post some pictures. Yesterday (since I didn't do a real update last night) was a good but long day. In the morning we had an activity of "speed-dating with the doctors" which wasn't as creepy as it sounds (no actual dating involved). We just had an opportunity to spend 15 minutes with each dysautonomia doctor that was there and ask questions and just talk to them. It was okay. Then we had a short break before quite a few of us went on a bus tour of D.C. which was fun. We saw a lot of the monuments, historical buildings, and other sites around the city. And then in the evening we had a group dinner (I ate some stuff up in my room beforehand since I didn't really have lunch and was pretty sure I wouldn't be able to eat any of the food being served) and had the rest of the evening to hang out together. I ended up staying up until about 2am in Erin's room (she's from Scotland - so cool) with some people and we had a really good time just sitting around and talking, having a little bit of a "support group" time, and just being goofy a lot of the time. We got quite punchy and eventually left but not before Erin started feeling sick and we made sure she made it to bed safely. I stayed up for a while after that talking to Heather in our room but eventually did get to sleep. I ran an extra liter of fluids overnight to help me recover from the weekend and get me through the flight home today.
Today really wasn't very exciting. I ended up meeting up with Erin for breakfast (she was feeling much better) and then Sarina came down and sat with us for a little while. Then I went and packed, said goodbye to Diana, Heather, the other Heather, Erin, and everyone else I could find before I had to leave on the shuttle to the airport. It was really sad to say goodbye and I wish the chill could go on for a few more days to just get to hang out more since we only get to see each other once a year for the most part (although Heather and I have plans to try to get together more frequently). The flight home was uneventful (except for me feeling a little woozy on the take-off) and my mom picked me up from the airport and took me home with a quick stop-off at the grocery store for popsicles (I've been going through popsicle withdrawl over the weekend since I didn't have a good working freezer to keep any in). I'm really tired now so, now that I've typed much more than I planned, here are some pictures before I call it a night.
"The Awakening", a really cool statue that looks like a guy coming up from the ground (from the bus tour on Saturday)
The Washington Monument - from the bus tour on Saturday
The National Archives
Me and Diana with a few popsicles (she got a box when we went to the grocery store on Friday night - that was my only popsicle all weekend)
Erin, Me, Heather, Heather, and Ashton
Okay, that's it for me. I'm feeling pretty sick from the busy weekend and not nearly enough sleep so I better get to bed. Tomorrow I can't really take it easy very much because my theater classes start and I have to do major work on my school homework for my online class this summer (the assignments for this past week are technically due by 3am EDT tomorrow (midnight PDT) but my professor is letting me have some extra time, thankfully). I hope you all had a great weekend and to all of the great DYNA members that I met at the chill, I hope you got home safe and sound and it was so great to get to meet you! Thanks so much for stopping by to see me. Sweet dreams!
Saturday, July 8, 2006 11:59 PM EDT
Is the laughter keeps us coming back for more.
The space between the wicked lies
And hope to keep us safe from the pain..."
--Dave Matthews Band
Hi Everyone,
It's very late (it's about 2:30am but, as I said last night, I like to keep today's (yesterday by now) date on the update so it says 11:59pm instead of the actual time), I'm very tired, and I need to get to bed but I wanted to put up something. Today was a lot of fun and I'll put up pictures when I get home tomorrow but now I need to go to bed. Goodnight.
Friday, July 7, 2006 11:59 PM EDT
Letting go of everything that is not you,
All the expectations,
All the beliefs,
And becoming who you are.
Not a better you, but a realer you.
We need to let go
To throw away everything that isn't us
In order to be more whole."
--Rachel Naomi Remen
Hi Everyone,
It's late (even though the time of this update says it's just before midnight, it's actually almost 1:00am and I just want the update to still be for July 7th so I'm making the time read 11:59pm - not that any of you really cared about that) and I'm exhausted so this will be quick. Today was another good day at the DYNA Summer Chill. I got to spend more time talking and hanging out with Diana and some of my other great DYNA friends and I got to meet Sarina for the first time in person so that was great, too. Nothing too exciting other than that, though. A few trips to the grocery store (yes, that's multiple trips) and a nap in the afternoon while watching a DVD of Grey's Anatomy with Diana. Tonight I got to meet Adrienne who just came over for the evening lectures and to meet some of us so that was nice. And I got to talk briefly on the phone to my awesome friend, Tara who couldn't make it to the chill since she's still not doing that great health-wise (if you could go over and leave her some good wishes in her guestbook I'm sure she'd love it).
I promised to have pictures to post today and I didn't take that many (other people were taking pictures that I will (hopefully) get e-mailed to me or somehow get copies of) but here's one of Adrienne, Diana, Sarina, and me after the evening lectures:
It's way past my bedtime now so I need to go to bed. Thanks so much for stopping by to see me. I hope you have all had a great week!
Thursday, July 6, 2006 11:59 PM EDT
-Anon.
Hi Everyone,
Well, after a very long day of travelling preceeded by work (was that really still just today?) I've made it to the DYNA Summer Chill. I won't go into all the details of the whole day because that would make for quite a long update and it's late and I'm tired. Work was okay but tiring. I went in early to take care of administrative stuff so that stretched the day out longer. Then I rushed home, finished packing up the rest of my stuff, and my dad and I headed off for the shuttle to the airport. I made it on my flight fine and, after a long frustrating ordeal of dealing with the hotel shuttle getting me from the airport I made it to the hotel. And when I got here I got to meet the awesome Diana and see some of my other great DYNA friends. I got my packet of stuff for the chill and was given an amazing, soft blanket. Each of the DYNA kids was given a hand made blanket or quilt made by various people and organizations. It's so amazing and I love my blanket (just have to be sure I have room to pack it to take home with me but since I brought a ton of drinks in my suitcase that I won't be bringing home with me it should be fine). I spent a little time getting settled in my room and called my parents to let them know I got here safely before heading back downstairs to the lobby and hanging out with Diana and Katie and some other DYNA friends which was really nice. But now I'm worn out from the long day and need some good sleep tonight to be rested for the rest of the weekend. Tomorrow breakfast ends at 9am so I'm going to try to get up in time to go grab something (or at least survey what's available and see if there's something I can eat or take for later).
I'll keep doing my regular nightly updates while here at the Chill and post some pictures when I take some (haven't even taken my camera out of my backpack yet). Thanks so much for stopping by to see me. I hope you all have had a great week so far and have a wonderful Friday!
Wednesday, July 5, 2006 11:52 PM EDT
--Eleanor Roosevelt
Hi Everyone,
It's too late and I'm too tired to do a full, regular length update so I'll keep this short. Today was a long day. I woke up early (after hitting the snooze button twice - I actually factor that in to when I set my alarm now) and got to the first morning of Art Camp groggy but on time with coffee and a breakfast shake. I need to remember that, it seems like a good idea to bring drinks and a drinkable breakfast (or breakfast in general) with me to Art Camp but I rarely have enough time between (or during) games with the kids to drink very much of it. Anyway, camp went pretty well with some bumps in the road but nothing too horrible.
It was a rainy, yucky day so instead of going to the beach as we had planned, Morgan (the little girl I babysit for in the summers) and I went to the movies and saw Cars. It was pretty good for a kids' movie and much less tiring than going to the beach. Then we came to my house for a little while so she could see the animals and see what's changed since last summer. I took her home just after 4:00pm and then ran errands for a few hours which really tired me out but I still had to come home and pack for the DYNA Summer Chill which I leave for tomorrow afternoon! Yay! So now I'm as packed as I can be tonight, I took a shower, re-accessed Winnie (my port), and I'm all ready to go to bed. I have to be at work early tomorrow to get everything ready (administratively) for the rest of the week so I'm not going to get a whole lot of sleep but I guess I'll just have to live with what I get.
Thanks so much for stopping by to see me and for the continued happy birthday messages in my guestbook. I hope you're all having a great week so far!
Tuesday, July 4, 2006 11:07 PM EDT
The truest lengthening of life is to live while we live,
wasting no time but using every hour for the highest ends.
So be it this day.
--C.H. Spurgeon
Hi Everyone,
Well, I'm officially 24 now. Woo hoo! Yeah, that was a little sarcastic if you couldn't tell. Not that it's not good being a year older, but 24 isn't a very exciting age. Except for the fact that I'm now officially in my mid-twenties (scary!) there really isn't much that's different from being 23. But I guess they can't all be milestone birthdays. This past year has really been quite a roller coaster ride and I feel like I'm about where I started a year ago but that's not a bad thing. After the rough winter and spring I had, I could be in a much worse place than I am now health-wise. So, HAPPY BIRTHDAY TO ME!
The day today was pretty laid back. I slept in a bit and then got up and made some breakfast after being wished a happy birthday by each of my family members as I came across them. I found out when I got up that our internet router (what makes it so we can all be online at the same time and how I can use wireless internet) broke last night when my dad was in the midst of fighting with our color printer (he didn't break it himself, and he had nothing against the router it was just in the wrong place at the wrong time...err...yeah...) so I couldn't get online on my computer all day. Our computer downstairs (used to be the family computer, now it's more my mom's computer since each of the rest of us has our own) could still go online and I could have gone and plugged my computer into the modem directly if I really wanted to get online but I didn't have anything I really needed to do so I just didn't go online (and actually haven't been online yet as I'm writing this, I'm waiting for my mom to get off the other computer so I can plug mine into the modem).
My (older) sister called me to wish me a happy birthday and it was nice to talk for a little while. Her band (she plays keyboard) was performing at a big fourth of July thing so she couldn't talk long but I'm glad she called and we got to chat for a little bit. Then we had a cook-out this afternoon for a late lunch and that was good. Then I opened my presents (pictures coming in a minute) and we had cake and ice cream (angelfood cake and light ice cream so it would be easier on my stomach since higher fat foods are harder for me to handle). It was a very nice birthday. And it got finished off with a nice, refreshing shower since I'm de-accessed to babysit at the beach tomorrow (and even if I wasn't doing that, I needed a shower before my first day of this summer of Art Camp tomorrow). So now I'm all clean and tired and have a tiring day ahead of me tomorrow. I have to be at the Art Center at about 8:30am tomorrow, camp starts at 9:00am and goes until noon (I get a short break while they're having snack part-way through the morning). Then I'm taking Morgan (the little girl I babysit for) from Art Camp (she's in the first two session (each session is two weeks) so most of the summer) to the beach for the afternoon. If I didn't mention it before, I've been babysitting for Morgan in the summers since she was 2 1/2 and now she's 8 1/2 (so this would be my 7th summer...yeah, the math doesn't seem like it should work out that way but it does). Her mom works at home and, now that she's old enough to more or less occupy herself at home, my job is basically to get her out of the house so she's not just stuck there the whole summer and doesn't bother her mom. She's really a great kid and it's been cool for me to get to see her grow up and to have a pretty good relationship with her, especially since I don't see her a whole lot during the school year (she's taken my theater classes before but not on a regular basis). So, that'll be my afternoon which I'm sure will be tiring. And then I have to run some quick errands, come home, shower to get the sunscreen stickiness off and beach out of my hair (isn't it amazing how sand just manages to get into your scalp no matter how hard you try to keep it out?), and then I have to pack for the DYNA Summer Chill which I leave for on Thursday afternoon. I'm so excited for that! But, wow, I've got A LOT to do tomorrow so I better get to bed asap.
But first here are some pictures of my birthday presents (no one took pictures while I was opening them so they're just the opened presents).
Some finger puppets from my dad
(L-R: (top row) Rooster, Lion, Owl (bottom row) Llama, Tiger, Hen)
Non-stick skillet and new cookie sheets (may sound boring but I love them!)
Cool mirror from my mom (I saw it in Maine and said I liked it and she snuck back and got it for me)
Giant rubber ducky from my brother...and it squeaks, too!
Cat swinging on a star from my dad. He got it at Summerfest this weekend and it's weird because I saw it and thought it was cool but didn't say anything about that to him so he just knows me really well, I guess!
No, I wasn't given this card, but my brother gave me a Hallmark book of the best (and worst) cards and I happened to come across this one. Just thought it was really funny (my kind of humor).
A ceramic gecko my mom got me from the same place as the mirror (after I said I liked it, too). It hangs on the wall so it looks like it's climbing up the wall and I just think it's really cool (and cute).
And a picture frame with pictures of the family my dad gave me. In the top left it's me and my dad (the picture I have at the top of this page right now), the bottom left is my two sisters (Margaret and Sarah-Kate), the bottom right is my brother and my mom, and the top right is the whole family minus my dad who was taking the picture.
And I got some other presents, too. My younger sister gave me two giftcards, one to Barnes and Noble and one to AC Moore (craft store) so I'll get good use from those and she also gave me a rose she picked from my mom's rose bushes in the backyard and a homemade card (she makes cool collage cards from magazine clippings). And my brother gave me the book I mentioned and an "I (heart) M.E." cute bear keychain (M.E. as in Maine). And my older sister had given me my present when I was out visiting - a really cute picture of the sheep training school (as in sheep jumping over the fence to help you get to sleep). I'm not sure if I've posted a picture of it before but if not, I'll post one soon. I got all the pictures, the mirror, and the gecko up on my walls after a little re-arranging and just have to get a sturdier thing to hang the cat from my ceiling with (can't put nails in my ceiling because it's plaster). Okay, NOW I'm REALLY going to bed, I promise.
I hope you all had a wonderful fourth of July! Thanks so much for stopping by and especially for all the wonderful birthday wishes in my guestbook. I didn't get to check them until just now and I was so happy to see so many people took the time to wish me a happy birthday. It means a lot. Sweet dreams!
Monday, July 3, 2006 10:56 PM EDT
Standin' on the edge of something much too deep.
It's funny how we feel so much but we cannot say a word.
We are screaming inside, but we can't be heard.
--Sarah McLachlan
Hi Everyone,
Today was a "club bed" day as Tara would say. I originally had the intention of running some errands but it just didn't happen. I slept in this morning until almost noon and I got to sleep relatively easy last night (thanks to some Lunesta) so I know I was just totally worn out from the weekend. I had some breakfast, did some stuff online, and basically spent the day in bed on my computer and/or watching TV. Yeah, pretty boring. This evening my stomach was not being good and I was having quite a bit of pain so I didn't feel up to eating much but I had a cup-a-soup and a roll and that actually seemed to help my stomach. Unfortunately I managed to spill some of the cup-a-soup (I was eating in bed as I usually do) so I had to change my sheets and that wore me out more than I expected. Now I have a new stock of popsicles (I ran out a few days ago) so those will keep me going for a while and I just want to go to bed and sleep and sleep and sleep (guess all the sleep last night and the resting today hasn't been enough to recover but I didn't really expect to be able to recover that quickly). Tomorrow is the 4th and my birthday! Yay! We're having a cook-out and my birthday cake this year is going to be angelfood cake (storebought) with strawberries and light ice cream. I'd love to be able to have a regular birthday cake but I just know that would be too much for my stomach so I think the angelfood cake is a good compromise. And I need to spend at least a little time tomorrow on the work for my online class. I got the first week's assignments done but not the reading (which wasn't important for the assignments in the FIRST week but I'll need to have at least skimmed them for the assignments for this week). I don't want to fall behind this early in the course so I better really put some time into it this week.
I'm going to get ready for bed now, though, and hope I get to sleep pretty easily. Please keep some of my friends in your thoughts, especially Aly who is having a rough time. Thanks so much for stopping by to see me. I hope you all had a great Monday and I wish you an early Happy Fourth of July (if you're in/from the US).
Sunday, July 2, 2006 11:51 PM EDT
--Claude Debussy
Hi Everyone,
Just a quick update tonight because I'm exhausted from another long day and when you put that together with my busy day yesterday, well it makes for very little leftover energy. Today was good. It started out later than yesterday and after sleeping in a bit I took the time (and energy) to wash my hair (bent over the side of the tub with the hand sprayer) and then got dressed and headed over to the second and final day of Summerfest. I saw some good people play today but none that I like quite as much as the ones I saw yesterday. My dad and I stayed through the final performance - the Celtic Extravaganza which has a completely full stage of Celtic musicians from various places (some from Ireland, some from Nova Scotia, some from Quebec, some from the US. All in all it was a good day but I did WAY too much walking around so not only am I tired out but my legs are really hurting, especially my knees (not only from walking but from sitting with my legs crossed for long periods of time). I nodded off from time to time during performances throughout the afternoon (thanks again in part to having to take Phenergan in order to be able to eat lunch and make it through the day) but I made it through the day. Turns out the fireworks were tonight and we knew it this morning but my dad and I opted to leave after the music was done since we were both tired.
I just have one picture for you today, I meant to take some of just the streets and stuff but just didn't get around to it.
A pretty good workshop I went to - L to R: Liz Carlisle, Joe Crookston, Cliff Eberhardt, and Art Tebbetts (a family friend).
Now I'm off to bed. Thanks so much for stopping by to see me. I hope you've all had a great weekend and, if you're working tomorrow, I hope you don't have too much trouble managing it until you get another break on Tuesday (if you're in the US, that is). Good night!
Saturday, July 1, 2006 11:41 PM EDT
And dreamer's dreams like bedsheet sails
And I believe in Peter Pan
And miracles, anything I can to get by
And fireflies..."
--Lori McKenna
Hi Everyone,
It was another long and tiring day today but a good day overall (except for some stomach issues). Last night wasn't a good sleeping night for me - didn't get to sleep until around 3am when I broke down and took some Lunesta (I'm trying to only take it a few nights a week but it's so hard for me to get to sleep without it). This morning the whole family went out for breakfast to celebrate my brother's birthday (again - my sister couldn't come to lunch yesterday so that's why we had the breakfast today, too). We went to IHOP and my stomach seemed semi-okay so I had some pancakes and a scrambled egg substitute (easier for me to handle than real eggs mainly because of the fat, I think) but for pretty much the rest of the day it felt like it was just sitting in my stomach like lead - not the best stomach feeling but I managed with it. Unfortunately I had to take Phenergan in the early afternoon because of it so I was semi-asleep for some of the performances I saw but I still enjoyed the day at Summerfest. It was a long day, though. The original plan was for my dad and I to stay through all the music and then watch the fireworks over the harbor but by about 5:30 (or a little earlier, maybe) I was pretty much falling asleep and decided that, since there really wasn't any more music we really wanted to hear and we didn't care THAT much about the fireworks, it would be better to leave and get plenty of rest tonight to be ready for another full day tomorrow (not quite as early, though). So we left a little after 6:00, came home, and I've been resting in bed since then. I have to say that, while I'm so grateful to have the awesome nausea meds that I have, I seem to be spending many many (probably half or more) of my afternoons in a thick fog or asleep because of the side effects of Phenergan. I don't care that much when I'm just at home and it's even nice sometimes to be able to take a nap in the afternoon but when I'm out or have to go out, I really hate the way I end up feeling. Today it was difficult walking around through the artisan booths and from stage to stage because I was out of it (and it's also cobblestone which makes it a bit more challenging since it's uneven). But I'll deal with the side effects and hope that I won't need the Phenergan as often in the near future.
Anyway, that's my day in a nutshell. Here are the few pictures I took of two of my favorite performers:
Lori McKenna, possibly my favorite folk artist right now (and for a while).
Michael Troy, another one of my favorite folk artists and my favorite from my general area (he's from about a half hour away from me).
I'll try to take more pictures tomorrow of interesting things, not necessarily just the performers. I get to sleep in a bit in the morning since there isn't anyone I want to see play until around 1:00pm. Yay! Now I'm just hooked up to some extra fluids to keep me going through the weekend (today was fairly hot, tomorrow isn't supposed to be quite as hot and there's a chance of thunder storms but hopefully they'll miss us or hit at okay times). And since I bit the bullet and took a Lunesta already, I should be able to get to sleep fairly soon (*knock on wood*). Thanks so much for stopping by to see me. I hope you are all having a wonderful holiday weekend!
Friday, June 30, 2006 11:59 PM EDT
and I shall exist till the end of time, for my being has no end."
--Kahlil Gibran
Hi Everyone,
Today was a pretty good day overall for me. But before I get into my day, I think I've mentioned before (although not for a while) that there is an amazing documentary being made about Lyme disease by Open Eye Pictures. They just put up a new, longer preview clip which you can see here. If you have Lyme disease or know someone who has it, you really need to see it, but I think it's even more important for people who don't know much about Lyme to see it. Just the preview clip can give you a good glimpse into what Lyme disease can be like and is like for many, many people. I've been interviewed for the documentary twice (at the Hope to Heal Lyme conferences this year and last year) and I was in half-hour clip we were shown at the conference this year (just for a second, but I was there!) so I know I'll be in the finished documentary, too. If you are able to, they need more funding to be able to finish the film. The plan/hope is that it will be shown on HBO when it's finished (the company has made other documentaries that have been shown on HBO). It's going to be really good and I know it will be difficult for a lot of us Lymies to see but I hope it will open the eyes of a lot of people.
Okay, now on to my day. Of course now that I have my AC in my room the weather has cooled down but that's fine with me, it makes it easier to sleep at night and doesn't require electricity. This morning I did my usual morning stuff - had a little breakfast, did some things online - and then got dressed to head out for my brother's birthday lunch with him and my parents. I went separately because I had to go straight to work afterwards and my mom met us there since she was at work and we were having lunch on her break between clients. Lunch was good but I was feeling fairly sick afterwards and of course hadn't checked to make sure I had Phenergan with me when I left the house. I managed okay without it and made it through work, too. I had a quick talk with my boss about the play situation (see Sunday's update for more info on that) and she basically made excuses about why she hadn't called me before replacing me. She did apologize but in the midst of excuses. I'll just let it go and make a note not to get involved in situations like that again. After work I swung by the pharmacy to drop off my scripts from my appointment with Dr. Bock yesterday and then came home, made some oatmeal cookies, and generally have been taking it easy. Tomorrow morning I have to be up semi-early (early for me) to go out to breakfast with my family since we weren't all able to celebrate my brother's birthday together today (my sister was working when we went out for lunch). And then I have the whole day out at Summerfest which should be a lot of fun. I just hope I don't get too worn out! I better get to bed so I'm not stumbling around half-asleep in the morning (although chances are even with enough sleep I'll still be like that).
Thanks so much for stopping by to see me! I hope you've all had a great week and I hope you have a wonderful weekend.
Thursday, June 29, 2006 11:59 PM EDT
Give yourself some time to falter.
But don’t forgo knowing that you're loved no matter what
And everything will come around in time.
--Sarah McLachlan
Hi Everyone,
I'm really tired so this is going to be short-ish. Today was a long day going to New York to see Dr. Bock. We got there just about on time but of course had to wait for about a half hour so I made myself comfortable in one of the nice reclining chairs in his infusion/waiting room (which was completely empty - I gather the infusion nurse wasn't there today) and promptly fell asleep until I was taken back to the exam room. The visit went well and I'm happy with it. I'm going on treatment for Babesiosis with Zithromax (liquid so it will hopefully be easier on my stomach) and Mepron (also a liquid, but it only comes that way and looks like yellow finger or tempra paint - I'm not kidding). I'll be on that for three weeks and then see him again and decide if I'll stay on it for at least another three weeks based on how I tolerate it and if/how I respond. But the way it worked out for making a follow-up appointment, I can't get back in to see him for five weeks (he asked to see me in three weeks but somehow managed to forget that he's on vacation that week and the following week) so I'll either wait two weeks to start the treatment or wait a week and then take a week off after three weeks of it (it will probably take close to a week to get the Mepron anyway since it's a specially ordered med for my pharmacy). Then when I stop the Babesia treatment (in three, six, or however many weeks) the plan is for me to go back on Primaxin, the IV antibiotic I was on until all the GI problems got bad in January. The only other thing that happened at the appointment is that Dr. Bock is ordering for me to get extra 500mL bags of saline to use as needed on hot days when I feel dehydrated and need the extra fluid. I'm happy about how the appointment went and I'm glad to be getting back on treatment finally after a little over six months off it (and seeing worsening of some of my Lyme symptoms).
My dad and I stopped at my aunt and uncle's house on the way home for dinner as we usually do. It was nice to see them as always and we had a nice time there talking and just having a good visit. Then I slept for quite a bit of the ride home and now I just want to go to bed. Tomorrow is my brother's 21st birthday (I can't believe he's that old!) and I'm going out to lunch with him, my mom, and dad (my sister has to work) and then I have to work from 2 or 2:30 until 5pm and I need to talk to my boss at least about the situation with the play (see Sunday's update if you missed the details about that) and possibly about the work situation in general. I'm nervous about having a talk like that but I know it's necessary. But I won't worry about it tonight, just hope I get to sleep quickly! Thanks so much for stopping by. I hope you all have had a great week so far!
Wednesday, June 28, 2006 11:39 PM EDT
But only true friends will leave footprints in your heart.
--Eleanor Roosevelt
Hi Everyone,
Well today was a pretty good but long day. My stomach was a little more off than usual but I still ate breakfast - not the best decision but it was just bad nausea, no throwing up or anything like that. I managed with that okay but then I was just feeling really gross while trying to get dressed and ready to go to Rhode Island to meet up with some of my Lymie friends. I was just feeling dizzy and short of breath and hot and clammy - kind of my standard Dysautonomia stuff but much worse than it usually is. I've been drinking as much as I can and getting my liter of IV fluids everyday but I still feel dehydrated with the hot, humid weather starting up. Grrr! I'll see if Dr. Bock has anything to say about it tomorrow and hopefully he'll have some suggestions or ideas. Even with feeling yucky, I managed to get ready and head off for Providence for my get together. I'm so glad I made it - it's so nice getting together and just catching up and talking about Lyme stuff with people who really understand. You don't have to feel stupid about bringing up some random symptom or a story about being completely brainless because they've been there. So nice. Here's a picture of the four of us:
(L-R: Me, Barb, Leigh, and Janette - my little "support group")
I met them all through my Lyme Out Retreats and I feel so lucky to know them. Barb and her husband, Jack (who was actually the one taking the above picture) are moving to Connecticut soon - kind of a slow move throughout the summer but they'll be spending most of the summer in New York with family. It's sad to have them moving farther away but I know we'll all stay in touch through e-mail and we'll all get together when they come back for visits.
After the get together I headed home with a quick stop at the grocery store for popsicles (I swear, that should be a whole food group for me!). By the time I got home I was worn out but determined to put my AC in my window tonight while it was a little cooler so I got that done with the help of my mom. I'm not using it right now but I know I'll be using it a lot over the summer while I'm resting in my room. I've done a little work on my online summer class (it just started on Monday) and I've been watching some TV and just trying to rest. Tomorrow will be an early morning and a long day going to New York to see Dr. Bock and then stopping at my aunt and uncle's house for dinner. I'm making my list of things to talk to Dr. Bock about and I have a pretty sure idea of what he's going to want to do but I'll have to wait and see for sure. I hope to sleep in the car in the morning (we have to leave around 8am which is quite early for me). I better get myself to bed and hope I get to sleep pretty soon (stupid insomnia lately has been causing problems, even with my extra sleeping meds).
Thanks so much for stopping by to see me. I hope you're all having a good week so far!
Tuesday, June 27, 2006 11:50 PM EDT
you will escape a hundred days of sorrow.”
--Chinese Proverb
Hi Everyone,
Today was an okay day. I slept in a bit but not really any later than usual (I guess it isn't technically "sleeping in" if it's just my normal time), did some stuff online, had some breakfast, the usual morning routine. Then I took a quick shower, accessed Winnie (my port) (I had some problems with the accessing - the needle was damaged in transit to me but I was still able to use it with some creative use of sterile gauze - not really pretty but it will work for a while at least), hooked up to my fluids, and headed off to work. I was nervous about going to work and having to talk to my boss about the way she handled the situation of replacing me in the play (see Sunday's update for more info on that if you missed it) but it turned out that she didn't make it in today. She called a few times but I didn't say anything about it over the phone and ended up leaving her a note telling her I can't do the lighting for the play (that's what she was going to have me do (which I often do for the plays) instead of being IN the play) because I was comitted to being IN the play and because of the bad situation of how I was replaced, I just feel it's better for me to step back from the play altogether. After work I ran a few errands and then came home and I've been resting, wrapped my brother's birthday presents, had dinner, etc. Not a very exciting day overall.
Health-wise things were okay but I've been finding that lately I've been having to use Phenergan on a more regular basis than I had been for a while. It seems like I more or less have to pre-medicate myself with either Zofran or Phenergan before I eat or else I end up getting really nauseous so I take Zofran before breakfast and dinner and Phenergan before lunch (if you can even call my "meals" by those names - I eat at weird times and often they're not real meals) and sometimes before bed. It's annoying because Phenergan makes me really tired and fuzzy and it's just generally hard for me to function after taking it so when I'm out doing stuff in the afternoon, I wind up walking around in a really deep fog and feeling really out of it. Oh well, hopefully I'll be able to stop taking it so regularly soon. I had a really bad headache on Sunday that has persisted but it's been lessening each day so that's good. Right now the main thing I'm concerned about is getting dehydrated with the temperature going up and the humidity starting to get worse. I don't have my AC in my room yet (need to get that put in this week) but even if it was already back in my room, I'm out of the house enough (and don't have AC in my car) so that the heat would still be an issue. I'm trying to drink a lot and I know my IV fluids help a ton but I'm still worried I'm getting dehydrated. I will bring this up with Dr. Bock on Thursday and see if he has any suggestions or thoughts about it. I'm wondering if having some extra IV fluids on hand in case I really need them would be helpful, especially since I'll be babysitting at the beach being out in the sun and heat at least two afternoons a week. I'm sure I'll make it through the summer one way or another. I need to start making notes about what to talk to Dr. Bock about on Thursday.
Tomorrow I'm meeting up with a few of my great Lymie friends in Rhode Island which should be a lot of fun (we get together about once a month just to chat and have tea or coffee), then on Thursday I have my appointment with Dr. Bock (and stopping in to see my aunt and uncle on the way home, I think), and on Friday I'm working but hopefully I can go in late so I can go out to lunch with my dad and brother for my brother's 21st birthday. And this weekend is New Bedford Summerfest which I'm looking forward to but I'm sure the weekend will wear me out. Now I'm semi-watching The Incredibles and need to try to get to sleep soon. Please send good thoughts to all the CB kids (and adults) who are having a rough time, especially Madeleine and Brianna who are both battling multiple rough infections. Thanks so much for stopping by, please take a minute to sign my guestbook so I know you were here!
Monday, June 26, 2006 11:59 AM EDT
And the fear struck fearless be.
May the grieving shed all grief -
And the sick find health relief.
--Zen chant
Hi everyone,
Today was a little better day than yesterday. I slept in a bit (after being woken up by my compounding pharmacy calling about my Domperidone refill at 8:30am, but they were apologetic about waking me up), then had some breakfast and did stuff online until it was time to get ready to go to my neurologist appointment. The appointment wasn't a big deal - just to check in and see how the neurontin is working on my headaches (it's working alright). Cathy (the nurse practitioner who I see there) said she basically doesn't know if there's anything else she can do for me right now but not in a way like she was brushing me off, she just knows how hard it is to get relief from Lyme headaches and was being very honest with me (she feels it's important to be up front and honest with her patients, and I agree with that and appreciate it). So, at this point my other doctors can refill my neurontin prescription, and unless my headaches get worse, she doesn't need to see me regularly anymore. So I'll just call and make an appointment if things get worse but otherwise I won't go back to see her. It's really too bad because I like Cathy a lot, possibly more than any other doctor/health care provider I've ever been to (except maybe my homeopathic nurse practitioner who I also hardly ever see). She's known me for a very short time but she's honest about things which is very important to me (especially after the fiasco with Dr. Hood, my ex-PCP), she genuinely cares about how things are going for me, not just as far as my headaches go but about my whole medical picture and the rest of my life (she asked me today how I feel about all this medical stuff and what I'm doing for fun - I don't know that any other medical professional has taken the time to ask those kinds of questions). It's just nice to go in there and feel comfortable.
Anyway, after that appointment I ran some errands on the way home (craft store to get things to make my "goofy slippers" for the DYNA Chill next weekend, grocery store, the mall to finish getting my brother's birthday presents, swinging by work to check on something). When I got home I spent a while working on my "goofy slippers" (they look really good but I'm not going to post a picture until after the Chill because I want them to be a surprise for the Chill), had some dinner, and basically relaxed and rested. I'm still not feeling the greatest - recovering from the week in Maine and not resting/napping as much as I should have and also still struggling with the decision of what to do about the situation with my boss (see yesterday's update for more info on that). Nothing too exciting. Tomorrow I'm just working from 1-5pm, on Wednesday I'm getting together with three of my great Lymie friends in Rhode Island (yay!), on Thursday I go to New York to see Dr. Bock, and Friday is my brother's birthday but we're not doing anything huge (although I think I'm going out to lunch with him and my dad and maybe my mom since my brother's turning 21 and it would be nice to go out for a drink or something with him). We're having a joint birthday celebration for both of us on the 4th (my birthday) but even that won't be anything big. I'm sure I'll find time here and there this week to rest, nap, and do whatever I need to hopefully get back to my baseline before my summer jobs start next week.
That's it for me today. I hope you all had a good Monday! Thanks so much for stopping by to see me.
Sunday, June 25, 2006 11:23 PM EDT
Accept no one's definition of your life; define yourself."
--Harvey Fierstein
Hi Everyone,
I'm still not really up to (or feeling like) doing a big update tonight so you'll have to settle for a mini-update and some pictures. I'm pretty close to just falling asleep sitting up here and just generally not feeling well or having a good day. Yesterday was an okay day, just long with the drive back from Maine (I can't believe that was just YESTERDAY). Today I slept in until about 11am, got up and had some breakfast and did stuff online. I basically stayed in bed all day watching TV and trying to catch up with things online (it's amazing how much I do on a regular basis - I don't realize it until I try to catch up with a week's worth of it!). In the afternoon I got dressed and went off for a rehearsal for the play at the Art Center and...let's just say I wasn't in a very good mood when I left (I get cranky when I'm overtired and generally not feeling well) and I was in a much worse one when I got home.
Apparently the director (who also happens to be my boss) decided I had "missed too many rehearsals" even though she knew up front about me being away this past week and she was fine with that (or at least didn't make an issue of it - she's the one who asked ME if I wanted to be in the show afterall) so she cut me out of the chorus and one of the other chorus members brought a friend along who has replaced me. That makes me mad and upset on its own, but the fact that she didn't have the decency to call me so I didn't drag myself over to rehearsal today just tips things over the edge and makes it that much worse. In her defense for that she said, "I didn't know if you were going to be at rehearsal today." My vacation time was clearly marked on the calendar in the office and she has my cell number so she could have called at any time to let me know but she didn't even make any attempt to get in touch with me ahead of time. She said she wants me to do the lighting for the show but I think I just need to say that I can't be involved in the show at all.
And I'm in the midst of making decisions about my future at the Art Center. I don't feel it's a good environment for me to be working in since I don't feel respected or that I'm treated as an adult (my boss has seen me grow up since I was 4 so I'm sure it's hard for her to see me as being almost 24) so I think I at least need to remove myself from working in the office for a little while. Maybe I should do that over the summer since it's easier to get someone to work since the high schoolers are more available. I just need to do a lot of thinking and maybe meditate about it sometime. Sorry for going on about that, it's just a bad situation right now and I'm trying to figure out how to handle it.
Okay, I thought this was going to be a SHORT update, guess I just got on a roll venting there. But I'm done now. Here are a few pictures from Maine (mostly ones my dad took):
Sunset on the first night
A loon on the lake
Me reading on the rocks at Pemaquid Point
A sunrise (not sure what day this was from - my dad took it)
That's it for me tonight. Please keep Madeleine and Brianna in your thoughts while they're both battling some nasty infections and everyone else having a rough time right now. Thanks so much for stopping by and I hope you have had a wonderful weekend!
Saturday, June 24, 2006 11:05 PM EDT
--Minor White
Hi Everyone,
No big update tonight, I'll try to do a little bit longer one tomorrow when I'm rested (hopefully). Tonight I'm just exhausted from the trip home and just doing too much while I was in Maine. It was a really nice week and I wasn't ready to leave today but I guess all things have to come to an end. And at least I have two more weeks up there to look forward to at the end of August.
A big congratulations to my wonderful friend, Heather who just got married today! I wish I could have been there but I was there in spirit. Hope you're all having a good weekend! I hope to get around to CB pages and to sign some guestbooks soon.
Thursday, June 22, 2006 11:39 AM EDT Read from the bottom up (the one from Saturday is at the bottom of the page).
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time."
--T.S. Eliot
Thursday, June 22, 2006
Sorry for any confusion my last update caused. I said at the beginning that you should read from the bottom up to get things in the right order and then proceeded to (absent mindedly or maybe I can blame it on my Lyme brain) post them ordering from top to bottom. I'm sure you all figured it out alright or maybe you didn't even notice the discrepancy there. I didn't think I was going to bother to get online until I got home, but knowing I had messed things up on here made me want to get online sooner (I guess that's the perfectionist in me coming out).
Yesterday (Wednesday) was a pretty good day. In the morning I made pancakes for everyone for breakfast which were yummy and then after a little while I went to Pemaquid Point with my parents. We didn't stay too long but it was nice while we were there. I went down and sat on the rocks by myself for a little while and read (and attempted to do some Sudoku in a book I got from the bookstore the other day but the book I got is really bad and for some reason none of the puzzles (except for the very first one) are completely solvable - very frustrating) and listened to the waves and just enjoyed being there. My dad joined me after a while and we watched the waves. And of course we made a stop in the gift shop to see what new stuff they had. I got a few things there, including this really cute (and practical...sort of) cell phone cover that's a lobster! It's so cute (and to prove it, here are a few pictures).
And it clips on to my backpack for easy accessibility, too!
And one from Pemaquid:
When we got home we relaxed for a while and soon started dinner, ate, and my parents went off to a folk concert they read about in the paper. Me, my brother (Patrick), his girlfriend (Maria), and my sister (Margaret) had decided to play poker so we had to go out and get candy to use to bet with and while we were out we stopped for ice cream (apparently I can tolerate small amounts of frozen yogurt as well as low-fat ice cream - yay! and yummy!). Poker didn't last for too long because it got started late, after the three of them played with sparklers for a while and I made oatmeal bars. All in all, though, it was a fun night. This morning I got up early (with the help of the alarm on my cell phone) and went out for a kayak ride. I met up with my dad and brother in the canoe coming back from their boat ride and so we went along together for a little while (they turned around to go along with me). That was nice. Here are a few pictures from this morning:
My dad and brother in the canoe:
This one takes a little background to understand why it looks different (I think it looks cool). I had my camera in a ziploc bag to keep it from getting wet (I couldn't find my dry bag at home when we were packing up) and I decided to see what it would look like to take some pictures through the ziploc bag. So this is what it does to pictures - kind of gives them a frosted/painted look. I like it!
And, just for the fun of it, here's the cafe where I've been getting on the internet (this is the view from where I'm sitting as I update!):
Today the plan is pretty laid back. I'm in town to go online for a little while (and post this) and then pop into a few stores I haven't been to yet. And the rest of the day will be spent just relaxing, maybe napping on the dock, and (if I get my saline infusion started very soon) perhaps some swimming. We're planning a cook-out for dinner which should be fun and tomorrow is our last full day here :( but we have two weeks in August to look forward to so it hopefully won't be as sad leaving as having to leave for good for the summer. I hope you're all doing well and having a good week. Please continue to keep Lexie in your thoughts as she recovers from her chemo yesterday and also send good thoughts to all the other CB kids (and adults) having a rough time. I'll get back to checking on everyone and (hopefully) leaving messages when I get home this weekend!
Tuesday, June 20, 2006
Today overall was a pretty good day but I've definitely been dealing with some not so fun stuff. Mainly having a bad stomach day and dealing with a very painful wrist. The bad stomach day meant that I took a phenergan early this afternoon for bad nausea but I almost would rather just throw up to get some relief because the phenergan basically makes me useless for most of the rest of the day after taking it since it makes me really really tired and foggy. If I don't just go to sleep for a while to sleep off that side effect, I get really cranky because I'm just way too tired and not feeling well. And with the painful wrist, of course there's no reason for it hurting that I can think of so it's probably just one of those pains that comes and goes without rhyme or reason. Hopefully it will be feeling better in the morning. This evening has been really rainy - a big thunder storm is moving through and the thunder at times is so booming and loud that it makes the cottage shake. But I don't mind thunder storms, they're kind of cool during the night when you don't have to be out in it. All the same, I hope it's cleared up by the morning so we have another beautiful day. And hopefully I'll make it out in my kayak if it isn't too windy and my wrist is feeling better! But now it's bedtime and I could really use a good night's sleep.
Show me you can risk being completely at peace,
truly okay with the way things are right now in this moment,
and again in the next and the next and the next. . ."
--Oriah Mountain Dreamer
I'm at the bookstore cafe right now getting online for a little while so I'm posting my updates from this week so far. Things are going well here but I'm really tired today (a combo of doing too much and having to take phenergan this morning). My stomach is more off than usual but I'm managing okay. I went for a swim this afternoon which was very refreshing and I may go swimming again a little later if it's still hot out (or maybe I'll just lie on the dock and try to get rid of some of the paleness I have going on right now). I have to make this short because my sister and mom are waiting for me to finish up here so we can go back to the cottage. This will probably be my only update while I'm gone but I'll be sure to post again with a lot of pictures when I get home on Saturday. For the time being, here are a few pictures from today and one of me from a few days ago (my sister took it and it's obviously a fake smile).
Hope you're all doing well! I'm thinking of you even if I can't make it around to pages or sign guestbooks!
Monday, June 19 2006
Didn't get a chance to write any kind of recap of yesterday last night because of a late-night, very long Monopoly game with my brother (Patrick), his girlfriend (Maria), my sister (Margaret), and her boyfriend (Doug). The rest of the day was pretty laid back. I was de-accessed for the day so I went for a quick swim in the afternoon and took a shower in the evening, we went grocery shopping in the afternoon, and we had lobster for Father's Day dinner. I manage to eat a little lobster which was very tasty but my stomach wasn't completely happy with it - well worth the discomfort, though. And then around 10pm we started the Monopoly game that went on until just after 1am and only stopped because we were tired and it was apparent that Margaret was going to win if we kept going with it (she had an INSANE amount of money when we stopped). I was really exhausted by then, of course, and still had to access Winnie (my port) and hook up my fluids to run overnight but I managed fine with all that and got myself to bed.
Today was a pretty laid back day that originally had plans that didn't altogether pan out. We were planning to go to Pemaquid Point (a really nice place with a lighthouse and rocks that you can go sit or lie on and just listen to the waves crashing on them) but also planning on having a big turkey (or chicken) dinner with the basic fixings. So shopping had to be done and of course my mom, dad, and I (the ones doing the shopping) didn't leave until the early afternoon and took a long time in town doing things before actually getting to the grocery shopping. So Patrick, Maria, Margaret, and Doug decided to go on to Pemaquid Point without us (after my dad called them and said that was fine for them to do) and we just took a long time doing everything we needed to do. I got a paint-by-number and some other little things as well as a few books at the used book shop (one of them is "Eats, Shoots & Leaves" which is a really funny book about how punctuation is so rarely used correctly). And we had our big dinner, too. We bought a pre-made rotisserie chicken and a roasted turkey breast (didn't even realize they had that - it was sold like the rotisserie chickens) and then made mashed potatoes, package stuffing, and some veggies. I managed pretty well with a little of everything and enjoyed it. We (the kids) went out to Round Top for ice cream after dinner, too, and I did pretty well with some low-fat soft serve that was very tasty. When we got back I read for a while and then made some zucchini bread, which turned out much better than my last attempt at home (not sure if I mentioned that but it just ended up being kind of wet and dense). It's fairly late now and I'm heading to bed now, hoping to get a good night's sleep and be up to another full day tomorrow, even if it's just a full day of lounging around and doing nothing. I'm planning on doing a fair amount of baking tomorrow - cinnamon rolls and some muffins at least and maybe some oatmeal cookies, too - who knows what I may feel like making! It's nice to have time to do whatever I want but not be lying in bed watching TV (like at home). While I'm here, even if I'm not feeling well, it's still just so different - I'll lie around and read and I have to be feeling really awful for me to actually let myself take a nap. It's just a nice change.
Saturday, June 17 2006
Today has been a very long day but an overall good one. It started early (I woke up around 6:45am by my pump reminding me that it was almost done with my saline infusion) and I got up, finished packing, washed my hair in the tub since it's harder for me to do that up here at the cottage in Maine (no hand sprayer and a tiny shower), and we (my brother, sister, their significant others, and I) got off on the road around 8:30am to go to breakfast before starting the real drive up to Maine. We had a good breakfast at IHOP and soon were on the road again. I road with my brother and his girlfriend, Maria, which was nice. The drive seemed to go fairly quickly and soon we were up here at the cottage! My parents left a few hours after us so they didn't get here for a while but we settled in a little bit and then went out to do a little grocery shopping with a short stop at McDonald's for lunch (I managed to eat part of a grilled chicken sandwich but perhaps that wasn't a great idea). Other than that we've just been settling in, relaxing, and starting our vacation together. We had a nice dinner as a whole family and we all took naps before that (all except my brother and Maria). It was really a beautiful day and we should have more of those to come! Looking forward to a great week filled with resting, reading, swimming, kayaking, and just enjoying being up here in the peace and quiet.
Friday, June 16, 2006 11:59 PM EDT
the subtle difference between
holding a hand and chaining a soul
and you learn that love doesn't mean possession
and company doesn't mean security.
And you begin to learn that kisses aren't contracts
and presents aren't promises and you begin to accept
your defeats with your head up and your eyes ahead
with the grace of an adult not the grief of a child.
And you learn to build your roads today
because tomorrow's ground is too uncertain for plans
and futures have ways of falling down in mid-flight.
After awhile you learn that even sunshine
burns if you get too much so you plant your
own garden and decorate your own soul
instead of waiting for someone to bring you flowers.
And you learn that you really can endure
that you really are strong
and you really do have worth
and you learn
and you learn...
--Veronica A. Shoffstall
Hi Everyone,
I almost forgot to do an update tonight! I guess I can blame it on my mind being in a million different places right now. Today was a very busy day and it felt very uncoordinated. I figured I would wake up by the time I needed to leave for Boston to see Dr. R (GI) so I didn't set my alarm - my curtains were kind of open and usually when I do that I wake up by 10am or so. Well, I woke up this morning and groggily looked at the clock...11:30am! My appointment was at 1:30pm and it takes over an hour to get there. I also hadn't asked my dad if he was going with me or not and he hadn't set aside the time to go so we figured I needed to drive myself (it was too late to get the train up there). So I threw on some clothes, got my stuff together, grabbed something to eat in the car and took off for Boston. I only got a tiny bit turned around trying to get off the highway onto Storrow Drive but made it there pretty easily and with time to spare. And I ended up having to wait for a long time once there because Dr. R apparently got called over to the hospital to take care of a bad situation with a post-op patient. He thought it would only take a half hour but it took two hours! He was only about an hour late seeing me which isn't as bad as it could have been but of course I forgot to bring a book or something with me today so I was just sitting around staring at the wall or resting with my head in my hands. The appointment went fine. It was quick - just long enough for me to tell him that I was doing well with the Domperidone which he was really happy about and also for me to mention that I'm still having reflux even with the high dose Prilosec taken once a day. So he's having me continue with the Prilosec in the morning and then add extra strength Pepcid at night to see if that helps. The whole time spent with him was probably about 10 minutes. On the way out I filled out a form to get my records sent to Dr. Bock and Dr. Hubbuch (my PCP) and then headed home...through horrible traffic. I was in stop and go traffic getting out of Boston and onto the highway and then a good chunk of the way down the highway - it was pretty bad. It took me over 2 hours to do a drive that should only take about an hour. I ran a few errands (drug store for a few things and prescription and the grocery store for some popsicles and a few odds and ends for the trip tomorrow) and then come home and began crazily packing up my stuff for Maine. Thank goodness I'm organized and have a packing list and everything prepared ahead of time or I would have been such a mess. I'm pretty much all packed up now but have a few things left that I can't pack until the morning so I'll be up early to do that. My brother, sister, their significant others, and I are all leaving early and going out to breakfast before heading up to Maine. That should be fun so I'm not upset about having to get up early to do that (we're leaving around 7:30am so I'll be up before 7 to finish packing and everything).
While I'm away I'm going to have VERY limited internet access if I have any at all. So I won't be able to update on a regular basis or at all until I get home next Saturday. I'll try to find somewhere with inernet access (like the library or the coffee shop) to update at some point during the week and I'll try to keep a running log of what I'm up to each day along with some pictures of everything! I'm looking forward to a nice, quiet week vacation and I'm hoping nothing will happen to mess it up at all. I intend to spend a lot of time resting (on the dock or porch when possible), reading, and kayaking on nice days when I'm up to it. And I hope to get to go swimming quite a bit, too (I'm bringing a bunch of extra port needles and dressing changes so I can de-access more than usual) since it's supposed to be warm.
Please keep all the Caringbridge kids and adults in your thoughts, especially the ones having a rough time like Madeline who had another positive port culture, Hunter who just had big chemo and is feeling the side-effects of it, and Julianne. Also please continue to keep my little church friend, Lexie, in your thoughts now and through the week that I'm gone. I hope to be in touch with her and her mom while I'm away but I'm not sure how much I'll be able to do that so I'll just ask for general good thoughts for her! I hope you all have a wonderful weekend and week next week if I don't get to post then. Thanks so much for stopping by to see me!
Thursday, June 15, 2006 11:59 PM EDT
no point in the future to get to.
All you have ever longed for is here in this moment, right now."
--Oriah Mountain Dreamer
Hi Everyone,
Well, if yesterday's update was un-exciting, today's is going to bore you to death. Yeah, just a quiet day with nothing going on. I slept in a little bit but not that late because I was running my saline overnight with my pump so that woke me up (I really have learned that if I'm going to run the fluids overnight I should do it by gravity so I don't have a pump beeping at me early in the morning telling me that it's almost done...and then that it's a little more almost done...and just a little more almost done...and eventually that it's done). After that woke me up and I got up to empty my bladder I tried going back to sleep but of course couldn't so I just stayed up. My day was basically spent in bed resting, taking naps, updating my packing list for Maine, finishing up my laundry, and getting most of my medical supplies packed up. Yeah, not too exciting but still tiring. Tonight I made some baked corn chips with some corn tortillas I bought a few weeks ago and they turned out pretty well, although the first sheet of them weren't quite crisp enough. I'm really starting to get the hang of making baked versions of fried foods (chicken fingers, french fries, and now tortilla chips). So that was my day. Tomorrow I have to pack and I have an appointment in Boston with Dr. R (GI) - just a follow-up since starting the Domperidone (med to help my stomach motility). I think I've gained 5 or 6 more lbs. since seeing him a little less than a month ago so I'm slowly approaching my "normal" weight which is great. I'm glad that I'll be able to tell Dr. R that the Domperidone seems to be working and I'm able to eat better! And I'll be even happier to be able to tell Dr. Bock that when I see him in two weeks. Hopefully tomorrow won't be too tiring with packing, errands, and the trip to Boston and back but I think it should be okay and then I leave for Maine on Saturday!! Yay!!
That's it for me tonight. Thanks so much for stopping by to see me. I hope you all are having a great week so far and have a wonderful Friday!
Wednesday, June 14, 2006 11:59 PM EDT
You'll go thru anything.
And on your way to be free
You know, love is everything.
--Shawn Mullins
Hi Everyone,
Nothing too exciting to update about today. I worked from 1-5pm after another night with trouble getting to sleep so I didn't get as much sleep as I would have liked to but it wasn't too bad. Work wasn't too exciting. Mainly I just had to start inputting the fundraiser R.S.V.P.s into a spreadsheet, update Art Camp sign ups, and deal with a lot of checks - nothing too hard or interesting. After work I came home for a little while and then headed back over there for rehearsal for the summer (adult) play I'm in the ensemble of. Rehearsal was pretty good but we couldn't use the stage because the photographs for the next art show were all over the theater (the shows are being changed tomorrow) so we just sat in a circle and read through the act we were supposed to be rehearsing. It was good to meet everyone else who is in the show (some of them I know, some are new) and learn some of the parts I'll be in. Rehearsal was short, though, so I came home and took a bath (I was de-accessed today) and generally took it easy. Now I'm all re-accessed (with a new kind of needle - my infusion company ran out of the old kind, not sure if I like this new kind but I'm still not sure) and I'm going to hook up to my saline and try to get to sleep. Told you there wasn't anything interesting to update about!
Please keep Lexie (my little friend from church) in your thoughts as she recovers from her weekly chemo today as well as all the Caringbridge kids (and adults) having a rough time. Thanks so much for stopping by and I hope you're having a good week so far!
Tuesday, June 13, 2006 11:58 PM EDT
Give me the grace in that time and place to open up to one."
--Bob Franke
Hi Everyone,
I'm just going to do a quick(ish) update tonight since it's getting late and I really want to try to force myself to get over my jetlag. Last night I didn't get to sleep until 2:30 or 3:00am and then I slept until almost 2:00pm! I think it's a combination of my usual insomnia and remaining jetlag since usually even when I don't get to sleep until that late I don't usually sleep past noon. So needless to say today was a bit short for me. After I got up and had some breakfast I got dressed and went out to run my errands - stopped by work to see what was going on and talked to my boss for a little while (she asked me if I'd be in the summer play so I'm going to be in the chorus of the musical melodrama), went to K-Mart to get some drinks that I can only find there, and went over to the grocery store where I very coincidentally happened to meet up with my mom! I just happened to get there while she was in the car talking to my dad and I happened to go and park right across from her. So I went shopping with her (which worked out well for me since it meant she paid for my stuff) and then headed home. We had a nice dinner with the whole family and I had some veggie sushi which was okay (I tried a new kind with new stuff in it and it wasn't exactly what I was expecting) and boiled potato. This evening I got to my baking and made a loaf of zucchini and carrot bread (which I'm not sure about, it just baked a little funny and is more wet in the middle than I was expecting) and some adapted oatmeal bars which turned out very tasty. I really need to try to get some good sleep tonight so I'm going to end it here and sign off for the night (I'm not sure if I actually have any hope of getting to bed soon but I'm going to give it a good try). Tomorrow I'm working from 1-5pm (better be up by then, I guess) and then have rehearsal for the play at 7pm so it will be a longish day for me but I'm mostly looking forward to it.
Thanks so much for stopping by to see me! I hope you all had a good day today and continue to have a good week.
Monday, June 12, 2006 11:58 PM EDT
Easy to start over with the ones you hold so dear.
Or are you left to wonder, all alone, eternally...
This isn't how it's really meant to be,
No it isn't how it's really meant to be..."
--Sheryl Crow
Hi Everyone,
I think all the travelling and everything has left me a little "off". Not really in that bad shape health-wise (although I'm definitely worn out) but more just that I didn't feel quite like myself today. It's a little hard to ease back into life after being away and especially when coming home isn't really an entirely happy thing (not that I don't like being home, I just really didn't want to leave my sister). So, anyway, today was just a day to lay low, rest a lot, and try to recover from the trip back as well as trying to get my bearings again. I basically stayed in bed all day (slept 'til about noon) and really just rested, caught up with things online, and didn't do much else (it sounds so lazy but so necessary). I think tomorrow I need to get out of the house and just kind of get back into my life here a little bit. I'll probably go by work to check in (and see if/what day(s) I should work this week), go to the library and return a few things I've had out (and maybe get a few to take to Maine next week), and go to the grocery store to pick up a few things. I want to bake some stuff so I need to get some things for that. While I was at my sister's house, I used evaporated cane juice instead of white sugar and liked using that - it didn't make things taste different and is supposed to be much better at keeping your blood sugar more even than processed white sugar. So I may go over to the natural food store to get some of that if I'm up to it and if I do that, I'll probably end up running some extra errands picking things up between here and there. Not that any of this is interesting at all to all of you reading this, so sorry for rambling on about it all.
I realize I haven't really said much about how I've been doing health-wise over the last few weeks. I've held up okay but had some fairly bad headaches (not so bad when I'm lying down but when I sit or stand up they get a lot worse) and waves of nausea along with various other complaints but nothing horribly awful considering how much I've been doing. I can feel the seemingly small improvements adding up to me getting back up to what my baseline was before the huge GI crash starting in January. I can feel my strength coming back and it feels like I'm close to where I was in November when I went to Baltimore with my dad, which was a good place health-wise. I'm looking forward to getting back on treatment for Lyme and co-infections and when I see Dr. Bock in two weeks I'll be starting on treatment for Babesia (one of the co-infections that has been showing itself again recently) which is all oral and I'm hoping I'll be able to tolerate it (I will probably ask to be put on liquid instead of tablet form of Zithromax as part of the treatment) and then I would really like to get back on the IV Primaxin that I was doing well with before the GI crash.
Okay, that's enough for tonight. I need to go to bed and get some good sleep. Thanks so much for stopping by and especially for the great guestbook messages left! I hope you all had a good Monday and continue to have a good week.
Sunday, June 11, 2006 8:35 PM EDT
--Clara Ortega
Hi Everyone,
First of all, sorry for any of you who have dial-up or slow internet - I put up quite a few pictures at the end of this update! Hopefully it won't slow things down too much for you!
I'm home after a long night of travelling, although it didn't feel that long because I (thankfully) slept through most of the flight from San Francisco to Boston. The travelling itself went smoothly except for a short delay of my flight from Eugene to San Francisco due to bad weather in SF. I didn't realize how much I didn't want to leave and how upset I was about it until the plane was taking off from Eugene and I just started welling up. I was so glad to be able to have the time I did with my sister and brother-in-law but it had been so long since I'd had any real quality time with them (especially my sister) and I realize that I just need more sister time than I had. And it made it harder to leave since my dad was there, too, and it was so great (and rare) for that many of us to be able to be together. My dad will be going back to Seattle fairly often to go to his company's main office and he'll hop down to Oregon for a weekend (either before or after his time in Seattle) so hopefully my next visit can overlap with one of his trips. I've already started looking into when I could go out next and it seems that Columbus Day in October would pretty much be the only time in the fall that I could do it since I'll have a class at Wheelock on Mondays and I wouldn't have it on Columbus Day (Wheelock calls it the "Autumn Holiday", though, not Columbus Day). And plane ticket prices right now for that time are very managable so it seems possible (if it works for my sister and brother-in-law).
Anyway, so I managed the travelling okay and basically just knocked myself out for the long flight from San Francisco to Boston and managed to sleep for more or less the whole flight (although it was sleeping in a plane seat with very little leg room and everything so it wasn't exactly "restful"). We actually got in a little early and my mom picked me up from the airport. I slept for a lot of the drive home (and for the part I was awake, I wasn't very talkative at all since I was so tired). I got home, got my stuff inside, unpacked a tiny bit, changed my clothes, and rested for a little bit before going to church. I really should have just gone to bed and slept for the rest of the morning, but I was so determined to make it to church and, let's face it, I can just be unbelievably stubborn sometimes. I wanted to go to church since it's the last regular service of the year I'll be able to go to (next week is the actual last service of the regular year but I'll be in Maine) and I just wanted to see some people in particular. I gave Lexie and her sister Emily a few things I brought back for them from Oregon and they were both surprised and happy to get little gifts. By the time I got home from church (with a short detour to the store to pick up some essentials like popsicles) it was late enough so that I knew if I just went to bed then I would screw up my inner clock even more so the best thing to do would be to stay up through the day and go to bed early. And amazingly enough I've managed to stay up! I never let myself lie down and had some caffeine earlier in the day but I'm about at the point now that I know I need to go to bed and sleep for many many hours.
Oh, but before I go to bed, I didn't backtrack and talk about Friday at all. I did manage to get down to the river and go walking. I took the bus down there and ended up walking more than three miles in total (1.5 miles each way from the mall to the duck pond). It wore me out a lot and my feet, hips, and knee were quite painful by the end of the walk back to the mall but I enjoyed being outside and by the river and everything. So here are some pictures from that:
The bike/walking path with some sunshine! It was brief but got more frequent later in the day.
The Willamette River
Early on in the walk with the river behind me (you can also see my new angel necklace)
Ducks and geese at a park along the river
A Veterans' Memorial
This is what it says on the bottom right corner of the memorial. I found it surprising but so appropriate.
I went to the rose garden which is along the path, too, so here are some pictures from there:
(If you look closely, you can see there's a bee in the middle of this flower)
(And there's a bee on this one, too, but a smaller bee)
And on Saturday (just yesterday??), my dad, sister, and I went to the Saturday Market which is like a big open market in downtown Eugene - very cool. I've been there a few times before and it's always enjoyable. Here's a picture on the way back to the car after spending the morning and early afternoon there (just had to take some pictures):
And them (the turtle musicians) up close:
I'm ready to head to bed now (8:35pm? probably a record for me!). I hope you all have had a great weekend and thanks for stopping by as always!
Thursday, June 8, 2006 12:40 PM PDT (3:40 PM EDT)
--Margaret Mead
Hi Everyone,
The last few days (since my last update) have been pretty good but busy (well, compared to my "normal" life at home). On Monday after I updated I swung by the grocery store to get a few things and then came home to make cinnamon rolls which tunred out VERY yummy (and are almost gone now!). Monday evening Sarah-Kate (my sister) had a dinner she had to go to so Matt (my brother-in-law) and I just hung out and watched a movie which I slept on and off through. Tuesday wasn't too exciting. I mostly just hung out, watched TV, read some, took a walk in the afternoon, nothing too big. Yesterday (Wednesday) was quite a long adventurous day for me, though. I took the bus downtown and walked around there for a long time. I found some really cool shops - a lot of spiritual type stores with Tibetian and Buddhist stuff. I got some prayer flags, a nice angel necklace, a whole bunch of cards with various beautiful pictures and/or messages inside, and some other miscelanous things. I had a nice time walking around, too, and just having a leisurely afternoon. After being downtown for a long time, I hopped on the bus over to the Valley River Center (a mall) to go to a few specific stores. I got some souveniers for people at one store and got a nice Oregon sweatshirt and the University store in the mall. I wanted to go walking along the river (there's a bike/walking path along the river that goes by the mall) but by the time I was done at the mall it was about 5:00pm so I needed to head home. So a little bit of a wait at the bus stop there and I caught the bus back home. It was a long and busy and tiring day but it was a really good day and it was really nice to be out walking around and doing stuff. I really do like it here and while I was walking around downtown I was thinking that if only I could transplant my church (including all the people) here and still be able to go to Maine on vacation, I'd much more likely strongly consider moving here. So many "if's" though.
Today my plan is to get dressed, get over to the coffee shop to go online, check e-mail, and post this update, and then swing by the grocery store to get a few things so I can make more cinnamon rolls and some low-fat oatmeal cookies. (My plan got a little side tracked by some intense waves of nausea as I was getting ready to leave the apartment but I recovered.) I'm basically laying low today - no big outings and I plan to rest a lot to recover from yesterday and hopefully recover enough energy so that I can go out to the river tomorrow. If I'm up to it, I'm going to borrow my sister's bike and go biking along there a bit but if I'm not up to doing that, I can still take the bus down to the bike path and enjoy it that way. And my dad gets here tomorrow afternoon! Yay! He's been up in Washington state this week at the main office of the company he works for and he's flying down here tomorrow to spend the weekend. So we'll have tomorrow night and most of the day on Saturday with all four of us here before I leave on Saturday evening (and then my dad leaves on Sunday night). Tomorrow we're planning on going to the Saturday Market (a cool market downtown with lots of cool, Hippie-type things and a great selection of international food) so that should be a lot of fun.
And, I promised to post some pictures in this entry (I promised that in my last entry) so here are a few from the last few days:
Some pretty yellow flowers I went by while out for a walk on Tuesday
And some flowers I saw while walking downtown (they looked better in person)
A pretty stained glass square at the downtown Eugene bus station
Please keep Diana in your thoughts and prayers. She went in for a very important surgery this morning but found she didn't need to have it afterall! But she could still use some good thoughts and wishes for continued healing. And yesterday was Lexie's (my little friend from church) chemo day so I'm sure she could use some good thoughts, too. I hope you're all having a good week. And thanks so much for stopping by to see me! I'm not sure if I'll do an update before coming home but I might be able to do a quick one on Saturday morning and post some pictures from the river. No promises, though. (If not then, I'll certainly post them when I get home.)
Monday, June 5, 2006 1:21 PM PDT (4:21 PM EDT)
- Ryokan
Hi Everyone,
I'm about to head over to the coffee shop to go online for a while and then swing by the grocery store to pick up a few things so I can make cinnamon rolls this afternoon (there's a recipe for them in a magazine that looks good and low-fat and relatively easy to make). So, I want to give an update about how things are going here, what I've been up to, and how I'm doing.
On Saturday after I did the last BIG update, my sister (Sarah-Kate), brother-in-law (Matt), and I all went minature golfing which was a lot of fun. It's been a really long time since any of us have been mini golfing but we did fairly well considering. It was a nice day compared to all the weather we've been having here (cloudy and some sprinkles of rain with an occasional downpour, although usually that's not during the day) and it was HOT. After mini golfing (I lost, Matt won) we went out to dinner at this cool place called Cornicoupia where they have good veggie burgers (they call them vurgurs) and we got to sit outside which was nice even though it was cloudy. It started to sprinkle a little bit while we were still eating but there were some tables outside underneath a canopy thing so we just moved tables and finished eating (I of course brought half my meal home with me which I still haven't had a chance to finish eating). And that wasn't the end of the day...we came home, watched what was left of the basketball game (the west semi-finals - I definitely know more about basketball now than I did before this trip) and then watched Walk the Line which I have from Netflix and smartly thought to bring with me. It was really good, I highly recommend it, but it's pretty intense at times. It's amazing to think that Reese Witerspoon and Joaquin Phoenix did all their own singing, especially Joaquin Phoenix who really SOUNDED like Johnny Cash - amazing! So that was Saturday. It was quite a busy day and I was certainly worn out after that.
Sunday (yesterday) was more relaxed. I slept in while Sarah-Kate went out to band practice (she's in a band with her boss or boss's wife or something like that - she plays keyboard and varoius small percussion instruments - even though I haven't heard them play I think it's pretty cool that she's in a band in the first place!) and Matt ran errands and then went to his volunteer shift at the library (which I think is also cool - they have really settled in here more so than my previous visits). A quiet morning. I went over to the grocery store (there are two here - one called "Market of Choice" that's a combination health-food store and grocery store and another regular grocery store, I went to the regular grocery store) to get some things I couldn't get at the other store the other day. Of course I still couldn't find everything I was looking for but that's okay. Later on Sarah-Kate and I went to "Market of Choice" to do regular grocery shopping (not that exciting), we hung around and relaxed for a while at home before dinner (eggplant parmesan, my sister left some out of the sauce and cheese for me to eat and it was pretty tasty), and then got interested in looking at our Ayurvedic constitutions (I'm Kapha, my sister is Vata, and we think Matt is Pitta so we have one of each constitution here!) which was cool and I'm interested in looking up more info about that.
Okay, this update is shaping up to be pretty boring. Sorry, I guess I just haven't done a lot of exciting stuff and I haven't taken any pictures so I don't have those to liven things up. But it's getting a little late and I have plans for the afternoon (the cinnamon rolls and perhaps some cookies if I'm feeling really ambitious (I like to bake while I'm here, both to have something to occupy myself (at home I usually either don't have the time or am too tired to bake much) and to be able to make things for Sarah-Kate and Matt to kind of "give back" for me staying with them). I'll probably be back over to the coffee shop on Wednesday or Thursday so I'll do another update then and hopefully I'll have some pictures of SOMETHING then. Sorry I'm not able to get around and sign guestbooks, I'm sure you all understand that with limited internet access it's just hard to do much other than checking e-mail and updating here. I'll make up for it when I get home and have regular internet access (oh, that will be SO nice, I'm sure I'll appreciate it more than I usually do). I hope you're all having a good Monday and had a good weekend! Please keep Diana in your thoughts - she's been in rough shape and has a very important surgery coming up so she REALLY doesn't need any more complications or problems popping up and also Tara who has been having a rough time, too, and could use some good thoughts. Of course I haven't been able to check a lot of pages so I'm sure there are other people who could use good thoughts and I'm sending out positive energy to all of you! Thanks so much for stopping by to see me and I hope you all have a great week!
Saturday, June 3, 2006 1:44 PM PDT (4:44 PM EDT)
Okay, I'm finally able to get things up online. Yesterday I tried to come by the coffee shop across the street from my sister's apartment that advertises "free wireless internet" but they were finishing up renovations and wouldn't be open until today. So today I'm back over here and able to get online at last! Yay! So I won't add much to my other updates which I have below this entry in backwards order (read from the bottom up) so they'll be in the right order when they go into the journal history and I'll try to update again early next week (it will be a little easier to take time out to come over here and get online while my sister and brother-in-law are at work). I hope you're all doing well and having a good weekend so far!
Friday, June 2, 2006 12:17 PM PDT (3:17 PM EDT)
Okay, so I made it here to Eugene, OR FINALLY. The train got in last night at about 6:00 PM...it was SUPPOSED to get in at 12:45 PM. Yeah, kind of late. And apparently this train is ALWAYS late but apparently Amtrak doesn't feel it necessary to change their train schedule to reflect it. Maybe they're worried that if people KNOW the train is going to take 17 hours to go a route that would only take 8 hours to drive (or much less to fly) then they would lose business. It doesn't really matter. I enjoyed the train ride and scenery but after a while it just got old. There were next to no outlets to plug things in so people were always searching around for them and someone pretty much always had something plugged into the best one down in the snack car. I managed to charge up my computer to about 60% power in the afternoon (while I wrote the last update) and managed to get two episodes of ER out of it before it got back down to single digit power again. I'm just glad I made it here finally. My sister picked me up from the train station and brought be back to her apartment and had to leave soon after to go to a meeting (she was supposed to go to two but had to leave early from the first one to come pick me up). I didn't mind having a little time to myself to unwind, take a shower (decided to de-access to do that since it would be a big pain to try to take a shower with Winnie covered up because they don't have a hand-held shower sprayer) which felt SO good after 17 hours of train travelling and over 17 hours of other travelling, and just try to settle in. They had dinner and then we sat around and talked for a while and then went to bed. I slept for about 11 hours last night and I feel a nap coming on this afternoon but I'm hoping to make it out to the store and hopefully the coffee house with internet first. (This update has been prepared in advance, in case you didn't realize it).
Health-wise I held up pretty well considering the very long travelling time. Today I'm tired, feel groggy and sluggish, have a pretty bad headache, and am just feeling "off" but it could be a lot worse. I'm looking forward to a nice visit here. All my medical packages made it here safely which is good. My box of saline and other IV supplies were waiting for me on the doorstep when we got back from the train station, my package of supplement syringes came this morning, and a package of medications my parents had to send got here right before the supplements. (I forget if I mentioned this but my parents had to send me some of my medications because we couldn't get to the pharmacy before it closed on Tuesday night and I didn't have enough to get me through the time here. Thank goodness for fast mail service!) So, I think I will go get dressed and make my way to the store to pick up some food stuff. Then probably a nice bath will be in order! Nice relaxing day.
Thursday, June 1, 2006 10:30 AM PDT (1:30 PM EDT)
The train connection didn't seem to work out quite like I planned and wasn't as easy as it seemed. There was no walking involved like there was to get the first leg of the train ride but there was A LOT of waiting around. About five hours to be exact (actually slightly more than that). I got into Sacramento at about 7:30 PM (I'm using all pacific time zone times for now) and went to pick up my ticket at the office only to discover that I had accidentally somehow made the reservation for June 2nd, not May 31st. I have no idea how I made that screw up but it was easily rectified and the ticket guy was able to change it to the right day. And then the waiting began. Thank goodness for my computer and being able to play DVDs on it or I would have probably gone out of my mind early on. I just wish my battery lasted longer (I can't really complain - it DOES last over 6 hours when it's fully charged). I watched "Star Wars: Episode III" which I hadn't seen before and that killed a bit of time (that's the best way to kill time, I think, by watching a movie or just having something you get wrapped up in...or sleeping but that didn't seem like the best idea while in the train station). I was really tired so it was hard to be able to focus on much. Reading put me on the verge of falling asleep (and I'm reading a REALLY interesting and exciting book) and I tried playing my gameboy for a little while but I was having trouble focusing my eyes enough to really do much on it (and I was annoyed that somehow it erased my saved game...grrr). I was drinking caffeinated diet pepsi to try to help me stay awake but that wasn't helping a whole lot (or maybe it was and I just couldn't tell). (I seem to be using a lot of parenthesis today...interesting.) Anyway, somehow I made it through the waiting and was counting down until midnight when the train was supposed to come. A few minutes before midnight, they made an announcement to us (there was quite a crowd gathered to get that train, the last one of the night and the ONLY one that goes up to Oregon and Washington state each day) that the train was running late and would be there around 12:30am but we could give them our ticket and get our boarding passes then to save time once we got on the train. I did that, made a trip to the ladies' room to avoid having to use the train bathroom in the middle of the night, and went out to wait on the platform with everyone else. And we waited. And we waited. We would see train lights coming up and whistles blowing and get our hopes up that it was OUR train but it was a long train carrying cars, or a train with car after car of unknown things. So we waited some more. FINALLY a little before 1:00am (which felt like 4:00am to me since I was still on eastern time) the train came, we were told which car to go in based on our destination, assigned seat numbers (which not everyone stuck to), and got on the train. We were given pillows (a nice touch) but no blankets and the car was a bit chilly but I managed.
Unfortunately there really wasn't an easy way for me to hook up my saline to run overnight - I really should have done that at the train station in the bathroom - so I just decided to forget it. I was way too tired to try to figure that out. So I gulped down my nighttime meds with some of the diet pepsi I had left and tried to get some sleep. I managed to sleep some, waking up off and on but getting some decent sleep (probably big thanks to two Lunestas along with my regular nighttime sleeping meds) before waking up around 6:00 or 6:30am and deciding to get up for the day. Perhaps "get up" is not the right term since there wasn't much "getting up" involved - I had slept in my clothes (comfy clothes - I planned ahead) and was sleeping in a reclined seat. But I got my things together to go hook up my saline then and brush my teeth while I was at it. That was nice. I hate having fuzzy teeth. The day has actually been pretty good. Getting some sleep last night helped to rejuvinate me a bit, although I'm still totally exhausted and could (and probably will) sleep for the next few days. The train is running an hour late but I called my sister so she won't be just sitting around at the train station in Eugene waiting for me. And I'm enjoying the scenery a lot. It's really beautiful. We're in Oregon somewhere but I don't really know where (I'm still about 3 hours from Eugene so I'm somewhere in southern Oregon). There are beautiful mountains and open spaces. There's a nice lounge car with seats facing out to the windows so I've spent most of the morning in there looking at the scenery, taking pictures through the windows (which I hope will turn out good - I should go get my camera cable and download them onto my computer now to see how they're coming out), and reading. Now I'm down in the lower level of the lounge car where the snack bar is as well as some tables and the ONE outlet that can be found on the train (or at least that can be spotted) so I'm still enjoying the scenery, writing all about my travels so far, and charging my computer. Multitasking! Hopefully my travel stories aren't too boring. It's nice to be able to write about it all while it's happening rather than trying to remember everything once I get to my destination (and inevitibly crash for the rest of the day). I will add some pictures once I've downloaded them onto my computer and am back online with it (may take a few days since I'll have to make my way to a place that has wi-fi, there are two of them about a half mile walk from my sister's apartment so I will POSSIBLY be able to make the trek there tomorrow afternoon if I'm feeling energetic enough. For now, though, I'll just sit here with my tea and diet soda and enjoy the view. Travelling by train is really nice and calming and makes me happy - the actual travelling that is, not the waiting around and transferring trains and all that exhausting stuff. I hope you're all having a nice, restful Thursday! (I'm going to be SO turned around about the time and day and everything for a while - maybe that will help me adapt to the time zone change, or maybe it will just make me even more confused than I usually am.)
Oh, and here are those pictures from the train ride, I don't think they need explanations or captions, they speak for themselves:
Wednesday, May 31, 2006 6:30 PM PDT (9:30 PM EDT)
I'm on the train on the first ground transportation part of my trip (I'm done with the two air transportation legs). I find it a bit ironic (or maybe it's not irony, maybe it's something else altogether) that my air travel to get across the whole country (from Massachusetts to California) took a total of about seven hours and my ground travel to just get me up the west coast will take a total of somewhere around 14 hours. And of course those time estimations don't include layovers - only about 15 minutes between my two plane rides (well, 15 minutes from getting off the plane to boarding the next one) while my train travelling will include about 4 1/2 hours between the two legs when I'll get to hang out at the Sacramento train station and hopefully find something to occupy myself with (I always have my computer with me to write random things or watch movies and I may be up for some food at some point there if there's much in the way of restaurants).
I also had quite the adventure trying to get to a train from Oakland to Sacramento (the one I'm on now). I had figured it out that I could take a shuttle (BART - Bay Area Rapid Transit) from the airport to the airport train station and then wait around for a bit before my train up to Sacramento. So I did that (had to walk a bit to get to the train station from where the shuttle left me off) and discovered that there really isn't a "station" at the airport Amtrak station, it's basically just the platform and some benches. But I was okay with that - I could handle waiting on a bench until the train. But then someone told me (one of the other passengers waiting for a train to Sacramento) that there was a train accident right there by the station and there was no way of knowing how long it would take for a train to get to the station and we'd be better off making our way over to the other Oakland Amtrak station. Easier said than done. It took a BART subway ride (it was above ground but still a subway, I think) and then somewhere around a 14 block walk to get to the station. And I was having to do all this dragging my big suitcase and backpack and cooler (thank goodness my suitcase and backpack both have wheels). I finally made it to the station (which was a REAL station), went inside to get my ticket which I had reserved and paid for over the phone last night, and JUST missed the first train to Sacramento (seriously, I was running to the train and the doors closed like 2 seconds before I got to it) but that wasn't too bad, just meant a 45 minute wait which I could definitely handle, especially considering I thought I would have a much longer wait in Oakland (instead I'll have a really long wait in Sacramento so I hope they have a good station!).
So, I made it on the next train and I think the enormity of the whole day of travelling is hitting me - I'm so tired and just not feeling very well in general. At least once I get on the train in Sacramento at midnight (which will feel like 3am to me since I'm still on eastern time) I don't have to worry about changing trains or anything and just sit tight until I get to Eugene, OR just before 1:00pm tomorrow. It will be a LONG night to say the least but hopefully I'll sleep for most of it (I have lots of meds to help me sleep and try to make the night easier to handle).
It's really a gorgeous day and I was grateful for that as I was making that 14 block walk to the train station. And I've been enjoying the scenery on this train ride. I've never been to this part of California before. In fact the only part of CA I've ever been to was Anaheim and I was only seven so I don't remember a whole lot (except for some of the rides at Disneyland which is where we spent most of our time during that trip). I remember that my mom was pregnant with my younger sister (who is now 16 - wow! long time ago!) and she couldn't go on that many rides because of that so she and my brother (who must have only been 4) went on some of the easier rides (I mostly only remember the Dumbo ride). And I remember going on Mr. Toad's Wild Ride multiple times with my dad and older sister and brother and waiting forever to go on the Peter Pan ride and being really disappointed with it. And I remember being allowed to get Nestle ice cream bars which was a big thing in my family - not the ice cream part, the Nestle part. My mom was an active La Leche League leader for a long time (it's a group to help support nursing mothers) and that's actually why we were in Anaheim (for a LLL conference) and we boycotted Nestle for most of my younger childhood because they marketted their baby formula to poor countries that were unable to mix it with clean water and therefore babies were getting sick and being malnourished and the mothers weren't breastfeeding which is really the best thing for both mother and baby. So, anyway, being allowed to buy Nestle ice cream treats at Disneyland was a BIG DEAL. So that was my one and only trip to California and it's unfortunate that THIS trip to CA basically consists of train rides trying to get up to Oregon but it's still nice to see the scenery.
It will be really pretty to see the sun coming up tomorrow morning wherever I am in the journey. Perhaps I'll try to take some pictures but they probably won't come out that good since they would be taken while on a moving train. I do love that trains have huge windows so you can see everything. The tiny windows on planes are kind of annoying but still better than no windows! Hopefully I will hold up well enough during the rest of my journey north and make it to my sister's in one piece, but it may take a few days to recover and make sure I'll STAY in one piece for the rest of the trip. Travelling is so tiring but kind of a good tiring because you're heading somewhere special (usually) and when you get there you know you'll be able to rest and see people you love.
Friday, June 2, 2006 10:14 PM CDT
Annie has no internet access at the moment, so she asked me (her dad) to leave a message here to let her friends know that she made it safely to her sister's home in Eugene, Oregon. The trip was even longer than expected -- she will probably provide the details when she gets to a wireless hot spot -- but she weathered it quite well and after a decent night's sleep she seems to be in good shape and happy spirits.
Wednesday, May 31, 2006 12:24 AM EDT
--H Jackson Brown, Jr.
Hi Everyone,
I'm really tired and have to get to bed so I'll be somewhat rested for my LONG trip tomorrow so I'm not going to do a real update. Today was okay but very busy. I'll do an update when I get to my sister's on Thursday afternoon and get a little rest. Hopefully the trip won't wear me out too much but I'm not that optimistic - I expect to spend Thursday and Friday sleeping and hopefully I'll be recovered enough to do something over the weekend. Oh, and in a true "Lyme brain" moment (or bunch of moments) I mixed up when my flight is tomorrow morning. It's not at 7:30am (which would mean leaving the house at 4am to go up and get the shuttle to the airport), it's at 10:10am which is MUCH better and means I don't have to leave until 6:15am to get the shuttle. But it's still really early so I better get to bed NOW! I hope you all are having a great week. Thanks for stopping by!
Monday, May 29, 2006 11:48 PM EDT
Is the laughter keeps us coming back for more.
The space between the wicked lies
And hope to keep us safe from the pain..."
--Dave Matthews Band
Hi Everyone,
Well, so much for doing a real update this morning about yesterday as I said I would. Oh well, I'm sure none of you were pacing back and forth anxiously awaiting it! There really isn't a whole lot to say about yesterday - my dad and I were greeters at church so we had to get there early, the service was good (it was the annual senior youth Sunday so they ran the service and it was pretty good), and then I stayed to sing at a memorial service with the choir in the afternoon. It was a gorgeous day so while waiting for the choir to rehearse I sat out on the front porch/steps and read for a little while. It was nice. After that I made a quick stop at the grocery store to get a few things and then came home and rested for the afternoon. I managed to get to sleep at a fairly acceptable time (can't remember exactly when it was but definitely before 2am which seems to be a common bedtime for me).
Today was even less exciting than yesterday but that's fine by me. I slept in (can't remember when I woke up but it was nice not to have to be up for anything) and spent the day doing my laundry, getting things together to pack for my trip (can't believe I'm leaving the day after tomorrow!), and baking. I made a batch of low-fat blueberry muffins and a batch of adapted oatmeal cookies but I split up the batch and made some plain ones, some with raisins, some with chocolate chips, and some with cinnamon chips. I'm planning on taking a bunch with me for my trip and to have for snacks while I'm at my sister's (I'll have to do a bit of shopping when I get there to get all my staples and kind of weird foods like rice cheese and eggbeaters - luckily there's a grocery store and a health food store right across the street from their apartment). I left the house briefly to go pick up my sister at a friend's house but other than that I was just relaxing and trying to get things done at home. I also finished watching The Chronicles of Narnia which I have from Netflix (I started watching it on Saturday but was close to falling asleep so I had to put it on hold). It was good and I'm going to bring it with me to Oregon to hopefully watch again. Now I'm just ready to get some sleep since I'll have a busy day tomorrow getting everything packed and all ready to leave early on Wednesday morning (seriously, I'm going to have to leave my house just after 4am - I might as well just not go to sleep tomorrow night, although a better option is to go to bed really early and hope my sleeping meds knock me out). I'm hoping to take a trip to Old Navy tomorrow to get a new pair of jeans in between the two sizes I have now since I'm at an in-between weight right now, then I have a meeting for Art Camp at 4pm and have to run over to the pharmacy in the evening to pick up the rest of my Lunesta prescription that they didn't have enough of to fill on Friday. Hopefully everything will get done and hopefully I'll get in touch with my sister so I can make sure they know when I'll be getting there and everything.
Thanks so much for stopping by to see me! I hope you all had a good long weekend and Memorial Day!
Sunday, May 28, 2006 11:59 PM EDT
--H Jackson Brown, Jr.
Hi Everyone,
Just a quick update tonight because I'm really tired and my sleeping meds are starting to kick in so I should get to sleep (I honestly almost forgot to do an update tonight). I'm doing okay but had a very busy day at church and just need to go to bed now. I'll do a real update on today in the morning (or afternoon, whenever I wake up). Hope you all had a good weekend and enjoy having an extra day off tomorrow!
Saturday, May 27, 2006 11:27 PM EDT
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time."
--T.S. Eliot
Hi Everyone,
First of all, I forgot to mention it yesterday but my wonderful friend Diana graduated from high school yesterday!! I'm so happy for her and she certainly has been through a lot this year so it's a real accomplishment. Go over and offer her some words of congratulations if you have a few minutes!
I don't feel much like doing a full update tonight since it seems boring to just keep going through the mundane everyday things that just aren't very exciting. I worked this morning and that was okay - not too exciting but that was fine by me. Then a few errands and home to rest for the rest of the day as well as a nice long bath (so refreshing during this warm humid weather we're having). Health-wise things weren't terriffic but not too bad. I had a pretty bad night last night as far as sleeping goes - didn't get to sleep until after 4am and then kept waking up during the night and of course had to be up at 9am to get ready for work so all that made for a bit of a rough day but, again, nothing I can't deal with. This morning I decided to give a nutritional shake another shot since my stomach does seem somewhat better than it was when I last gave up on them a few months ago. I managed with it pretty well and over the course of the morning drank a whole slim-fast low-carb shake (I got slim-fast not because I'm trying to lose weight but because it's slightly lower fat and substantially lower in sugar than most other shakes) with a managable amount of nausea. I managed fairly well with eating through the rest of the day, too. That's plenty of rambling for tonight. I hope you're all having a great weekend! Thanks so much for stopping by!
Friday, May 26, 2006 11:59 PM EDT
Live purely. Be quiet.
Do your work with mastery.
Like the moon, come out
from behind the clouds!
Shine!"
--Buddha
Hi Everyone,
Not a very exciting day today. I got up early (ugh - have I said before how much I hate early mornings?) to go to my dental cleaning. That went smoothly but I wasn't talkative at all, even less talkative than I would normally be in that situation where you can't really talk because you have someone poking around in your mouth. I didn't have my normal hygenist - the woman who has been cleaning my teeth since I was little - and I didn't like the woman I had all that much (she's new) but it was only a half hour so it was okay. Then I ran some errands - stocked up on two of my favorite drinks (sugar free lemonade and sugar free cherry limeade) at K-Mart (I was seriously checking out with 10 1-liter bottles of each kind since it's the only place that carries them in my area and I can never be sure if they'll have them when I go), got a few things at the grocery store, dropped of prescriptions at the pharmacy. When I got home I got together my medical supplies to ship to my sister so I don't have to carry 30 lbs. of saline with me. I'm shipping (or I should say shipped since my dad took it off to be UPSed today) 7 liters of saline and a bunch of other supplies which is pretty handy, nice to not have to worry about packing as much. But the package ended up being heavy (22.2 lbs when I weighed it on our home scale) and was apparently pretty expensive to ship (more expensive than when I checked online to see how much it would be to FedEx it, UPS ended up working out better when my dad actually went to ship it). So it should arrive at my sister's on Thursday, the same day I'll arrive there. And my vitamin and mineral syringes are being shipped there, too, since my infusion company was going to ship them to me to arrive on Wednesday which will obviously not work for me since I'm leaving that morning. So that will arrive on Friday. And now I've just gone on and on about my medical supplies being shipped - how boring am I!?! The rest of the day was pretty boring - just got in PJs and spent most of the afternoon and evening in bed. I made some baked chicken fingers which turned out pretty good so I'm sure those will become another regular food for me - not the easiest thing on my stomach but if I only eat a little bit it seems to work okay. Other than that, really nothing to report.
Tomorrow I'm working (10-2 so another early morning, ugh!) and then need to get started doing some things to get ready for my trip. I'm really excited! In less than a week I'll be in Oregon! Okay, I've been working on this update for over an hour now (thanks partially be being distracted by IMs) so I should just end it and try to go to bed. Thanks so much for stopping by to see me! I hope you all had a good day today.
Thursday, May 25, 2006 10:51 PM EDT
Letting go of everything that is not you,
All the expectations,
All the beliefs,
And becoming who you are.
Not a better you, but a realer you.
We need to let go
To throw away everything that isn't us
In order to be more whole."
--Rachel Naomi Remen
Hi Everyone,
This is going to be short because it's late, I'm not feeling very well, and I have to be up early tomorrow for a dentist appointment (ugh - hate having more than one early morning in a row - at least it's just a cleaning tomorrow). My visit with Dr. Bock today went well. We're really on the same page right now which is really great. He was glad to see the results of the GES and see that it revealed a lot about what's going on with my stomach and also glad that I've started on the Domperidone. We both agree that we shouldn't really do anything right now in other areas because we want to be able to see if the Domperidone is helping or not so we'll give that time to work and when I see him again (in 5 weeks) we will start some kind of treatment again. When I talked about some of my symptoms that are worse over the past few months he agreed (and actually brought it up without me saying anything specific except my symptoms) that I probably have active Babesia (a co-infection of Lyme) and probably should be put back on treatment for that. He's running some tests for that to see if it will come up positive but since I've never tested positive in the past I'm not very optimistic that it will show up on the tests. He's also testing me for Bartonella, mostly at my request, since I think that I still have active Bartonella, too. So really nothing is being changed with my treatment - keeping on with the maintenance meds to deal with symptoms and now I have a better plan to help me get to sleep which is the only change. I'll take melatonin some nights and Lunesta some nights and kind of alternate between the two so I don't become used to either of them. I got a big script for Lunesta and one for Phenergan - great to have big scripts so I only have to pay one co-pay for a lot of pills.
I had a nice surprise after my appointment - my friend Stacey was seeing Dr. Bock today, too, and neither of us knew the other was going to be there. She and her mom were in the waiting room when I got out so we got to sit and talk for a few minutes until I got pulled back to the lab to fill out some paperwork. She got taken in not too long after that so we didn't really get to talk much but it was nice to see her. We haven't been very good at keeping in touch lately so I think we (or at least I) need to be better about that. After that I had blood drawn through Winnie (my port) for the labs but Winnie was being sluggish so it took a LONG time and we had to flush it in the middle of the draw because there was almost no blood coming out - a little scary when I thought it had clotted on me but we got it to flush and finished the draw. My dad and I went over to T.G.I. Friday's to grab something to eat (I managed to eat a chicken potsticker (dumpling) but my stomach didn't like it very much so I only had one and then spent a while in the car feeling sick) and then took a scenic route to my aunt and uncle's house since we had a while before they'd be home. The drive was really nice, it was a gorgeous day, and we got to go have dinner with my aunt and uncle which was really nice. It's always so nice to see them. And they're heading up to Maine for two weeks on Saturday so my dad and I are jealous of that but looking forward to OUR time in Maine which is coming up just three weeks from Saturday.
That's pretty much it for my day. I slept part of the way home and am really tired from a long day and not being able to sleep as much as I really need to the last few days. Tomorrow I have my dental cleaning in the morning and then I have to try to pack up some of my medical supplies (mainly my saline) to ship out to my sister so I don't have to lug 30 lbs. of saline with me on the plane and train (yeah, I just packed the 10 bags into my backpack and weighed them - 31 lbs.). The rest of the day should be quiet and laid back and I'm hoping to get a lot of rest and hopefully watch a movie or something. But I think it's time for bed now. I hope you all had a great day today! Thanks so much for stopping by to see me.
Wednesday, May 24, 2006 11:21 PM EDT
This could be
The difference between what you need
And what you wanna be."
--Matchbox Twenty
Hi Everyone,
Today was an okay day, better than yesterday but still not back to my current baseline after the rough night on Monday night (and following rough day yesterday). I'm still playing it safe with foods and having more nausea and abdominal pain than I have been recently but today I was able to slowly test the waters again and tonight I was able to eat some more "normal-ish" food. This morning I slept in a bit after having gone to bed earlier than I have been lately so I got a good deal of sleep which I really needed. I took only my really necessary meds this morning, including starting on the Domperidone. I still wound up feeling really nauseous even though I only took a few things so I had to take a Phenergan when I got to work which I really hated to do since I was already very groggy. But there wasn't much in the way of real work to get done and I didn't see how I'd make it through the afternoon without taking it. I made it through work (although there were many times when I just had to put my head down on the desk - I love that my job can be so laid back when I need it to be) and took a long nap when I got home. I spent the evening in bed, watched some TV, and tried eating some "real" foods. Not very exciting, I know, but I don't mind a pretty quiet day. Tomorrow I have to be up early to head off to New York with my dad to see Dr. Bock. That will be a long day but hopefully I'll be able to sleep for a while in the car in the morning. I better head to bed now, though.
Thanks so much for stopping by to see me! I hope you all had a wonderful day today.
Tuesday, May 23, 2006 10:48 PM EDT
--Author Unknown
Hi Everyone,
Today has definitely NOT been a very good day for me. Last night I managed to get to sleep at about 2 AM only to be woken up about an hour later with severe abdominal pain. I won't go into the whole awful night but basically once I woke up around 3 AM with the pain, it kept subsiding and then coming back full force so I didn't manage to get back to sleep until about 8 AM (the pain had more or less subsided by about 4 AM but I was still in pain and afraid it was going to get worse again) and slept on and off until almost 2 PM. The pain was awful and if I had been able to get out of bed I probably would have gone and woken up my parents, but I couldn't get out of bed and I didn't know what they could do for me - I figured if I could just wait it out and deal with the pain it would eventually subside. If the pain hadn't gone away or if I'd started throwing up I was prepared to have to make a trip to the ER but thankfully that wasn't necessary. It did subside but the whole day today I was still having pain (mostly cramping, kind of a sharp cramping) and much more nauseous than usual so I didn't manage to eat or drink very much at all. I spent most of the day in bed with my heating pack, mostly watching TV because it hurt too much to lie on my back or sit up to use my computer. I also took a bath which was nice but not as comfortable as usual. Tonight I went to choir rehearsal and went early to get to see Lexie and Alice (Lexie's mom) and have dinner with them at church which was very nice. I just brought a cup-a-soup and did okay with that but I was mostly there for the socializing so that was really nice.
Nothing much else to say about today. I've been really exhausted all day from not much sleep and dealing with the pain so I'm heading to bed now. The pain seems better tonight and hopefully tonight will be uneventful and tomorrow I'll be feeling better. I got the Domperidone in the mail today but didn't start it because the thought of having to take pills just turned my stomach. I'll start it tomorrow morning. I'm working tomorrow afternoon and then on Thursday I go to New York to see Dr. Bock and Friday is a "club bed" day to crash. I better get to bed now. This morning while I was up but after the pain had subsided enough for me to get on my computer, I wrote an entry in my blog about the whole ordeal last night - take a minute to go over and read it if you have time! Thanks so much for stopping by to see me. I hope you all had a great day today!
Monday, May 22, 2006 11:20 PM EDT
but it is the journey that matters in the end."
-Ursula K. LeGuin
Hi Everyone,
Today really was a great day as far as my days go. I'm so happy about how my appointment with Dr. R went this morning. I was upbeat going up there (or maybe it was nerves masked as upbeatness) and definitely a bit anxious about how my tests turned out but, and this is perhaps the most important thing about Dr. R, I wasn't worried that I was just going to be left where I am. Whether the tests showed something or not, I felt confident that Dr. R would not just say, "Oh well, I don't know what I can do for you" (as Dr. Berman said to me multiple times). Anyway, on to the actual appointment - I guess I'll just dive right in. We mainly went over the test results. The EGG was borderline with some abnormalities during the second half of the test (after I ate) but not really abnormal so not a huge help or a huge concern. But the GES was very abnormal. Yes, that's right, finally a test that gives me answers and a diagnosis! It's written there in black and white under the "Impression" part of the test result print-out, "Severely delay gastric emptying requiring almost 3 hours for total emptying." Dr. R said that at least 50 hould be emptied at 1 hour (mine was 34 mptied) and completely empty at 2 hours (mine was 74 mptied) and at the end of the test (3 hours) I still had some left in my stomach. If I were to look at these results and based on the information Dr. R gave me (and other info I've read online), I probably wouldn't have assumed it meant it was very abnormal, but the radiologist who wrote the report and Dr. R both see this as very slow emptying and I certainly believe their impressions. I can't convey just how happy I am about these results. For those of you who haven't been in this kind of position before, maybe that sounds weird, but those of you who have been in this kind of position, I'm sure you know exactly what that feeling is like. So now I have an official diagnosis of Gastroparesis - one more thing to add to my list of diagnosis, but I'm just glad to have a diagnosis.
So, the plan of action is for me to start Domperidone, a medication that isn't FDA approved in the US but available through some compounding pharmacies in the US (as well as through international pharmacies). While I was in the office Dr. R called the compounding pharmacy that he uses (which happens to be just outside Boston) and put in the prescription for it. He gave my cell number as the number to reach me at (which is what I told him to do) so about 5 minutes after he put the call in, while I was still sitting in his office, my cell phone rang and it was the pharmacy. Man, they work fast! I said I'd call them back in a little while (which I did on the drive home) and now it's all set up, was shipped today and I should receive it either tomorrow or Wednesday! I'll be on 5mg four times a day for two weeks and then go up to 10mg four times a day - my choice to ramp up instead of just jumping in with the 10mg. So hopefully this will make a difference! He's also having me change my Prilosec slightly to hopefully help with the reflux - from 20mg twice a day to 40mg once a day (at night). We'll see if that helps!
Now that I've written a novel on just the appointment I'll try to keep the rest of my day short and sweet. We made good time coming home from Boston and from the time we left the house to head up there to the time we got home was under four hours! Really amazing! I was pretty pumped from the good appointment and just didn't want to let myself crash and spend the rest of the day in bed (that's what tomorrow is for, lol) so I just kept going. I went out to the library (I'm being a bit ambitious about what I want to read...we'll see if I end up reading ANY of the books I have out of the library now) and then to the grocery store where I somehow ended up buying a lot more than I had planned, but oh well. I wanted to make some blueberry muffins (low-fat and low-sugar, of course) and was thinking about making rolls but by the time I got home I was really tired. I spent a while cleaning up my room so I could put away all the drinks and the few food things I got at the store that I keep in my room (by my mini-fridge) which took a lot out of me but I'm so glad that I took the time and energy to clean it up (I also cleaned off my comfy chair which I'm sitting in right now). Then I made the muffins and spent the rest of the evening relaxing, playing a new game I got for my gameboy advance, watching some TV, and generally just recovering from the long busy day. My stomach has been a big erratic today but it's not too awful. I've been dealing with this conflict over the past month or so where I want to eat and my body (not stomach, but whole body) wants food but I'm really nauseous and usually my body wins out so I end up feeling even more nauseous. This has resulted in my weight gain which isn't a bad thing, but I end up feeling sicker because of it. I just really wish my body didn't seem so persistant or that I could ignore that and listen more to my stomach shouting at me that it can't handle any more food. I'm just hoping that after a while my body and stomach will balance out.
Okay, I've written plenty tonight! Sorry if I rambled and wasn't interesting, I have a tendency to do that sometimes. Tomorrow I will spend the day in bed, resting, take a nice bath (planning on de-accessing for the day), and just have to go out for choir rehearsal in the evening. I'm going over a little early to have a little social time with Lexie and Alice (her mom) which will be nice. I know I posted some pictures of the view of Boston from Dr. R's building and floor at Mass General after my last appointment with him, but I took a few more today so I wanted to post one. The focus (center) of the picture is the capital building but you can also see the Boston skyline - a great view.
I'll sign off for tonight now and try to get some sleep. I hope you all had a great Monday! Thanks so much for stopping by to see me.
Sunday, May 21, 2006 11:01 PM EDT
--Joe Paterno
Hi Everyone,
Today was a pretty quiet day for me but not the best of days stomach-wise. But I've still managed to eat a fair amount so it's okay. I made it to church this morning but wasn't feeling that great (a muffin I ate didn't seem to be agreeing with me) so I didn't stay for coffee hour after the service. When I got home it was really nice out so I jumped into some comfy clothes and set myself up on the deck with my laptop and mp3 player (playing it through my computer). I spent a good couple of hours there and it was really nice to be out in the sunshine and fresh air but it was pretty tiring so when I started getting really cloudy and looked like it was going to rain, I packed it up and came inside and spent the rest of the day in bed resting, watching TV, and doing things on my computer from time to time. Today it has seemed like anything I've eaten has made me nauseous, but what's possibly harder to deal with is that I don't seem to be able to stop myself from eating even when I know I'm going to feel sick afterwards. So I eat, feel sick, spend a while dealing with feeling sick, I start feeling better, I eat something else, and it all starts over again. Tonight I decided to try to make some Pizza-like stuff for dinner so I used a dinner roll, cut it in half and put some tomato sauce, mozzarella rice cheese, onion, and garlic on it and stuck it in the toaster oven for a little while 'til the cheese semi-melted. It was tasty but it made me feel really sick so I don't know if it was worth it. I also tried some cooked carrots which were tasty, too, and I have a feeling that they would have been okay on my stomach if it weren't for the pizza. Oh well, it could all be much worse.
Tomorrow morning I have an appointment with Dr. R (GI) in Boston so my dad and I will be leaving around 8am to head up for my 10am appointment. I'm nervous about the appointment because a) I'm so afraid the tests I had done didn't show anything and b) although it's great I'm doing better, I'm worried that this will put things on the back burner and not seem as necessary to figure everything out. I'm a bit surprised by how much weight I've gained back even with not being able to eat very much still, but my metabolism must just be really low. I'm happy to be gaining the weight back, but I just kind of wish it wasn't piling on so fast (or at least it FEELS fast to me) so I'd have more time to figure out what clothes fit and everything. But, oh well, I'm not complaining, I'll take the weight gain in whatever form it comes!
Okay, I'm just going to rest for a while with my heating pad on my belly (how I've spent most of the afternoon and evening) and head to bed pretty soon. I hate having to get up early tomorrow morning but at least my dad's driving me up instead of me taking the train so the trip up there won't be quite as tiring. I heard a bit from Lexie's mom today that Lexie is doing okay and played in her first soccer game yesterday since her port surgery (3 or 4 weeks ago). Like me, she's happy to have her Zofran! Please keep her and her mom (and whole family) in your thoughts - her mom just lost a close friend in a car accident, too, so she could use some extra positive energy. Also please send some good thoughts to Tara. That's it for me tonight. Thanks so much for stopping by to see me! I hope you all had a great weekend with some nice spring weather!
Saturday, May 20, 2006 11:59 PM EDT
-Flora Whittemore
Hi Everyone,
Today wasn't ver exciting. Got up early to go to work (ugh, hate early mornings) and was pretty foggy and tired the whole time I was at work. I tried eating some yogurt for breakfast (when I got to work - I'd left a little thing of yogurt in the fridge there last night) and it didn't seem to agree with me so on top of my usual morning meds which make me tired and groggy I had to take a Phenergan so basically the whole time I was at work I felt like I could just fall asleep (and wished I could). My boss left me with another wonderful project to work on today (note the sarcasm) to update our list of summer residents who aren't members (and therefore don't get our mailings) by comparing the current summer non-members list, members list, and summer phone directory that is put out every year for Marion (the town where the gallery is). Let me just say it was a tedious 4 hours at work and I was taking frequent breaks to keep myself from falling asleep or entirely messing things up. Here's a picture of the set-up for this project so you get a better idea of what it was like:
On the left (the pink pages) is the summer phone directory, on the right (the white pages) is the current list of summer non-members, and you can see the complete members directory on the computer screen. It might not look as tedious as it was so you'll just have to take my word for it. And, since I was bored, I took some pictures of myself (good procrastination):
After work I went over to the library for a little bit to look for a few specific books. Of course I couldn't find them (which is partially because apparently I got confused and thought one of them was written by the wrong author - oh well) but I got a few other things and I'll go back next week and get what I was really looking for. The rest of the day was pretty relaxing - jumped into my PJs and rested in bed. And now I'm ready to call it a night. Tomorrow I just have church in the morning so it should be a fairly restful day. I hope you're all having a good weekend! Thanks so much for stopping by to see me.
Friday, May 19, 2006 11:57 PM EDT
But still I am one.
I cannot do everything,
But still I can do something;
And because I cannot do everything
I will not refuse to do the something that I can do."
--Edward Everett Hale
Hi Everyone,
Today was a pretty good day for me overall. A long day, but a good one. I slept in a bit ('til about 11:00) and after waking up I stayed in bed for a while before getting up and making some breakfast (well, it was breakfast food but I ate it around lunch time). I spent the afternoon mostly resting and taking a long bath. For some reason I wasn't looking forward to the bath as much as I usually do. Maybe because it was nice out (and therefore a warm bath didn't seem quite as relaxing) or maybe because I was anxious about this evening or maybe because I just took a shower last night or maybe because it's been less than a week since my last de-accessed day so subconsciously I wasn't really thinking of it as my bath day. Anyway, whatever the reason, it took a little while for me to really sink into the bath the way I usually do as soon as I step into it. But by the time the episode of ER that I was watching on my computer was over, I was relaxed enough to not want to get out. But I did, got dressed, and did everything else I needed to do before heading over to the art center to get things ready for my theater kids' performance this evening. The kids did a wonderful job. They were kind of all over the place beforehand (nervous energy, I think) but once they got started, they focused and everything went really well with only one or two line promptings from me offstage. My sister was doing the lights (she brought a friend along that she was hanging out with this afternoon/evening) and my parents came to see it and thought it was really good. I'm really proud of the kids and sad that the class is over but also relieved that I can relax a bit and not worry about that anymore. Here's a picture of the kids before the show:
After the show, I had to stay and clean things up and put away a lot of the chairs because there's an artist critique thing going on in the theater tomorrow morning (which I will of course be there for since I work on Saturdays and my boss is actually out of town this weekend). I got it all cleaned up and everything and packed up all my stuff and made it home. I took a quick shower (yeah, my third shower or bath in the last 24 hours - a bit crazy but I guess I've just been taking full advantage of being de-accessed and able to shower), numbed up Winnie (my port), and now I'm re-accessed and hooked up to my fluids and ready to get some sleep. This weekend shouldn't be too bad - I'm working tomorrow from 10-2 as usual and the rest of the day free and then church on Sunday morning (no choir or anything). Next week is a different story (a bit busy with two big doctor's appointments) but I'll just take the free time this weekend and worry about next week later.
Time for me to get to sleep. I hope you all have had a good week! Thanks so much for stopping by to see me. Please sign my guestbook if you have a minute - I'd love to know you stopped by!
Thursday, May 18, 2006 11:59 PM EDT
Life is beauty, admire it.
Life is bliss, taste it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it.
--Mother Teresa
Hi Everyone,
Just a quick update before I head to bed. I had a really wonderful afternoon visiting with three of my great Lyme friends - Barb, Leigh, and Janette. I met them all through my Lyme retreats and they all live in Rhode Island so we met up in Providence (after I picked Barb up at her house) at Pastiche, a wonderful coffee/tea/pastry place on federal hill. I just got a drink (this really cool sparkling juice and tea thing - kind of like a light soda and really good) and the rest of them got drinks and a pastry (I knew that if I got something to eat I'd regret it later). It was a gorgeous day out - sunny (finally) and somewhere around 70*. I was happy to get to wear a t-shirt and a short-ish skirt I haven't been able to wear without tights before (or just haven't tried) and flip flops, of course, complete with toenail polish. It was just a great all around afternoon and I thoroughly enjoyed getting to see these three amazing women who I just feel so comfortable around. I was very foggy and out of it for a lot of the time we were sitting around talking, but I still had a great time. On the way home (after dropping Barb back off at home) I stopped at the natural foods store to pick up some rice cheese (we were out of the mozarella flavor and the grocery store didn't have it yesterday) and then came home and had a little Chinese food with my family. The rest of the evening has been relaxed, watched some TV (the ER season finale was really good but I hate that now I have to wait until the fall to see what happens next!), and just took a quick shower. I've been having a really hard time feeling the right temperature so I'm either too hot (and sweaty or clammy) or too cold. Tonight I was too hot and figured since I decided to de-access tonight so I could shower tomorrow, I might as well take a shower tonight before going to bed in hopes that it would help cool me off and help me sleep. I'm feeling better now, but of course my wet hair is going to bother me (and make my pillow all wet so I'll end up feeling that gross feeling when it's humid out) but that's okay.
Tomorrow I have the day free and I plan to take a nice long bath. Then I'll get all ready to spend a few hours at the art center getting things ready for my theater kids' performance in the evening. I'm a bit nervous about it but I know the kids will pull it together and do a great job so I should just relax. I need to think a little about some kind of opening words to say to the parents before the show, but the standard "it's been great working with your kids, I've had a lot of fun, they worked really hard, so here's the show I hope you enjoy it" will work just fine. I do want to include that the kids have really had a part in putting the show together - like helping to decide what monologues and scenes they wanted to do and thinking up the name (Lights, Curtain, Action!) - but it's really the least of my worries right now. After the show, I'm sure it will take me a little while to clean things up but I won't stress about it too much because I have to work on Saturday so I can finish cleaning up then. So, I better get to bed now and get some good sleep! Thanks so much for stopping by to see me. I hope you all have had a good week so far!
Wednesday, May 17, 2006 11:53 PM EDT
And then go and do that.
Because what the world needs is people who have come alive."
--Harold Whitman
Hi Everyone,
Well, today was certainly a busy day for me. Or at least it feels like it was, it wasn't one of my busiest days at all but it was definitely draining. Last night I decided to bite the bullet with my sleeping problems and take a lunesta to help me get to sleep, and it did help but I try to only take it when I really need it. And it didn't help me stay asleep longer than usual, but then again this morning I might have slept longer if my brother (and mom) hadn't been talking kind of loud in the hallway outside my room. Oh well. I didn't do a whole lot this morning - tried to rest and take it easy mostly. I had some things to type up for the last dress rehearsal of my theater class before the show on Friday night. I got everything together and had rehearsal from 4-6pm. It went...okay but I came home again with a bit of a hoarse voice and I hope the kids are all going home and studying their lines A LOT between now and Friday. But, it is what it is and I'm not going to stress out about it too much because I've done everything I can do at this point. After rehearsal I made a quick trip to the grocery store to get no-sugar-added sorbet that I couldn't find at the store yesterday and a few other things. I ended up getting a heating pad that was pretty inexpensive and I've spent the evening with it on my belly and it seems to be helping (I wasn't feeling very well this evening, or most of the day actually). Nothing much going on this evening so I won't ramble on about nothingness. I forgot to mention yesterday that when I went to go to my theater class yesterday afternoon, my car wouldn't start. I suspected it was because of all the torrential rain we'd been having for a week or so (even though I hadn't been driving the car so it wasn't going through the huge puddles0. But, whatever it was from, it wasn't a good thing and I was worried it was going to have to be towed away and have to have some work done on it. But, this morning my dad went and tried to start it, it still wouldn't start, so he jumped it with my mom's car and it started! Yay! He took it for a drive (and had the windshield wiper replaced that was pretty much falling off) to make sure it was okay and it's been fine since then. Whew! A bit of a relief not to have to have work done on it.
So, that's my day. Health-wise things were pretty okay. This evening I was feeling sicker than I had been the rest of the day, but after expending all my energy on the rehearsal I think that's not much of a surprise. Tomorrow I'm meeting up with some of my Lymie friends in Providence for tea/coffee/pastries (I'll probably only be partaking in the tea, unless I'm feeling really well) so that will be fun. Other than that, nothing else is going on and on Friday I just (yeah right, just) have the performance of my theater class in the evening and probably a few hours of getting ready for that beforehand (printing out programs, making sure everything's ready, getting the kids all ready when they get there, etc.). I need to get to bed now so I'll leave it there. Thanks so much for stopping by to see me! Please continue to keep my little buddy Lexie in your thoughts as well as Diana who still isn't feeling very well and Tara who could use some good thoughts. Sweet dreams!
Tuesday, May 16, 2006 11:45 PM EDT
what is essential is invisible to the eye."
-Antoine De Saint-Exupery
Hi Everyone,
Just a quick update tonight because it's getting late and I'd really like to just go to bed right now. Today was a bit of a roller coaster day for me. I had a bit of a rough night last night - couldn't get to sleep but then I put in a DVD and I honestly don't remember hearing or seeing any of it so I guess I got to sleep pretty quickly then! But unfortunately I woke up early this morning (well, around 8:30am - early for me) and couldn't go back to sleep so I was up for the day. My sleep has been rough lately and it's getting on my nerves because it's certainly not helping me have any more energy! Anyway, I watched some TV, did stuff on my computer, and then got busy getting all the stuff together for my theater class's first dress rehearsal this afternoon. My sister is doing the lighting for the show so we had to go over early for me to get some things done and figure out the lighting (it's really basic). The class was supposed to start at 4 instead of the usual 4:30 time but some of the kids forgot and got there at 4:30 so the rehearsal started a bit later than I had planned, but that was okay. We got through everything with things being only slightly disasterous at times (the kids have GOT to spend time working on their lines this week or some of the scenes and monologues are going to be PAINFUL to sit through!). After the run through, we had enough time to play a short game and the kids just went crazy! I mean, seriously - they were running around on the stage, wouldn't stand still to listen to me setting up the game, it was rough for a few minutes there and my voice got really worn out very fast. But, I made it through the rest of the class and cleaned things up (how is it that no matter how much I tell them to make sure everything's cleaned up, there's still so much for me to clean up when they leave??) and headed off to choir rehearsal.
When I got to church, I looked up on the choir Sundays to see when we're singing next and realized that the next two choir Sundays (which are the last two choir Sundays of this regular church year) will be when I'm gone in Oregon and then gone in Maine so I really don't have to go to rehearsals anymore. So I didn't go tonight, I just turned around, stopped at the grocery store for a few things, and came home. Since then, I've been watching some TV, sat and talked to my family for a little while, and now I'm heading to bed. I got to talk to my wonderful friends Tara and Sarina tonight which was great. Unfortunately it looks like the plans for my trip out west are going to be changing slightly but the trip is still happening (I won't go into details right now).
So much for a short update tonight! Please keep Tara, Diana, and my little buddy Lexie in your thoughts (Lexie will have her third week of chemo tomorrow and I'm sure could use some good thoughts for the rest of the week). Thanks so much for stopping by to see me! I hope you're all having a good week so far!
Monday, May 15, 2006 11:58 PM EDT
much more than what we accomplish...
far more than what we possess."
--William Arthur Ward
Hi Everyone,
Nothing much to update about today. I had a quiet "club bed" day which was nice and very much needed. I didn't sleep in all that late but mostly because my bladder woke me up and my mom was taking a shower in the downstairs bathroom so I had to stumble upstairs to use the bathroom up there and by the time I got back to my bedroom I was a bit too awake to see much chance of falling back asleep so I didn't try (wow - runon sentence!). My day was spent resting in bed, watching some TV, doing stuff online, and taking a really long bath which was very nice. And of course the two-hour season finale of Grey's Anatomy which was really good. But I hate it when shows I'm attached to end for the season! Oh well, I have my season 1 DVDs to get me through the summer. (I'm really not that horribly attached to the few TV shows I watch regularly, although I have been known to become a little obsessed from time to time. When I was in junior high and high school, I was entirely too attached to General Hospital so that I taped every episode and saved the tapes. It got out of hand.) I didn't take into account the two-hours of GA tonight when I put the EMLA on my port around 8pm planning to access Winnie (my port) around 10pm so I was a bit worried it wouldn't be entirely numb when I finally managed to do it at 11pm (the EMLA wears off after a few hours even with it still on) but it was fine. So now I'm just hooked up to my saline to run overnight and all ready to go to bed and hopefully get a good night's sleep. I have two days of dress rehearsals with my theater class ahead of me so I need to have some energy!
Health-wise today wasn't too bad. I've had a headache coming and going throughout the day but at least it's not getting worse and hopefully it will be gone in the morning. My stomach has had some ups and downs but I ate relatively well so that's good. Nothing much else to say so I won't go rambling on. Oh, I did get my final paper back from my teacher and I got an A+ on the paper (I knew that already, she told me in an e-mail, but I kept forgetting to mention it) and an A in the class (I don't think I could technically have gotten an A+ on the paper since college grades (at least at my school) only go up to A). So I'm really happy about that, especially since I wasn't completely sure that my paper was written clearly. I guess it was!
Okay, that's it for me tonight. I hope you all had a great Monday and continue to have a good week! Thanks so much for stopping by to see me!
Sunday, May 14, 2006 10:19 PM EDT
"This is the beginning of a new day. You have been given this day to use as you will. You can waste it or use it for good. What you do today is important because you are exchanging a day of your life for it. When tomorrow comes, this day will be gone forever; in its place is something that you have left behind...let it be something good."
--Author Unknown
Hi Everyone,
Okay, a real update tonight, I promise. Today was a really good day overall (not the greatest day health-wise but good in a lot of other ways). I didn't want to drag myself out of bed this morning when my alarm went off at 8am (yeah, doesn't sound that early to some of you, but believe me it's not my best time of day). I had a pretty bad night trying to get to sleep and didn't manage to fall asleep until 2:30 or 3am so that didn't help at all. But, I made it to church on time (actually I got there a few minutes before 9am when the choir was supposed to be there and there were no cars there so I thought I was early (maybe the time had been changed or not everyone knew when we were supposed to be there) and went around the block to the Dunkin' Donuts to get some tea. Of course when I got back to church (around 9:10am) everyone was there. Anyway, the service was really nice. It was our music Sunday so most of the service was music. The choir sung a really nice peace and I sang Imagine with my brother accompanying me on guitar. Both of those went really well and I got a lot of compliments after the service (always a bit of a spirit-booster and I love singing and sharing it with others). And after the service, my big day out with my little buddy, Lexie, began!
We went out to lunch at Friendly's and I managed to eat part of a grilled chicken sandwich, a few fries, and a little softserve ice cream. Unfortunately something in there (or maybe all of it) wasn't very agreeable to my stomach so I had to take a Phenergan and was having some cramping and stuff for a while afterwards, but I managed. Then we went off to see 101 Dalmations at the Marion Art Center (where I work) which was very cute and a lot of fun. Lexie really liked it, too, and it was just a really nice way to spend the afternoon. When I took her home, I ended up staying and talking to her moms for a while which was nice. I think Lexie and I are going to try to make this kind of a regular thing and I'm so happy to get to spend time with her outside of church. She's such a great kid, both she and her sister Emily, and I just feel so at home with her whole family.
When I got home I gave my mom her little mother's day gift, I've been resting, and watching some TV (Grey's Anatomy is on right now but I'm taping it and watching it so that if I fall asleep or otherwise miss some of it I won't really miss it). I'm really tired after not much sleep last night and a busy day today so I may very well fall asleep soon (I hope so at least). Tomorrow is going to be a wonderful "Club Bed" day as Tara would say. I plan to de-access and take a nice, long, hot bath and just otherwise pretty much stay in bed. Hopefully I'll get some good rest and recover from too many nights of not enough sleep (seriously, it's getting old that I can't fall asleep until 2 or 3am even with all my sleeping meds on board).
Health-wise things aren't great but I'm managing. Today I started to feel like I'm having some trouble swallowing. Like it's not automatic and I have to think about it and even then it's just not quite right. Hopefully it's nothing. And I'm having a lot of air hunger from what I believe is the Babesia (Lyme co-infection) getting worse. Grr! Other than all that, there isn't much more to say. Oh, and today was another really really rainy day (I thought April was supposed to be the rainy month - aren't we supposed to be on to the May flowers now??). There has been flooding in parts of Massachusetts, New Hampshire, and Vermont and Mass is in a state of emergency right now (thankfully there aren't any floods in my area - it seems we missed part of the storm). We're supposed to have rain (or at least cloud and scattered showers) for the whole upcoming week. Ugh! Thankfully I don't have any big doctor's appointments this week (well, I actually don't have any doctor's appointments this week - WOO HOO!). So I'll be able to stay snuggled up in bed more than most other weeks.
Okay, I think I've rambled a bit. Whoops! I'll stop there and turn my full attention either to GA on TV or falling asleep (can't say which is more likely at this point). Thanks so much for stopping by to see me! I hope you all had a good day today and Happy Mother's Day to all you mothers out there! Please continue to keep Diana in your thoughts and go leave her a nice message to cheer her up since she's still in the hospital.
Saturday, May 13, 2006 11:43 PM EDT
--Ambrose Redmoon
Hi Everyone,
I don't know what it is, but I'm not feeling much like writing a lot tonight either. But I'll do a semi-normal update anyway. Today wasn't all that exciting. I had to get up, dressed, and off to work by 10am in the pouring rain. It was really coming down. And unfortunately the road that I have to take to work (and in the other direction to church) has horrible drainage so whenever there's a big rain parts of it partially flood - more like huge puddles covering half the road, but I call it partial flooding. I used my dad's car, though, so that made things easier (I'm not sure how well my car would have done in the huge puddles). Work wasn't very exciting. I was there by myself the whole time (my boss opted to stay home and catch up on things there) and pretty much just played games online the whole time (I took care of the few things I needed to do before I started on the games) and answered the phone. There's a show this weekend - a kids' production of 101 Dalmation - so there were a lot of calls of people wanting to make reservations for the shows tonight and tomorrow afternoon. Unfortunately, the shows were sold out so I just had to say I could put them on the waiting list. I wish I could have made room for all of them. After coming home from work I've just been resting, watching TV, doing stuff online, eating a bit here and there, the usual stuff. And now I'm going to head to bed because I have to be at church at 9:00am tomorrow for choir rehearsal, then the service, and then out with my little buddy Lexie. I'm taking her to see the final performance of 101 Dalmations and I think we're getting lunch between church and the show so I'm looking forward to that. But it's time for bed.
Since I haven't written much lately, I'll leave you today with a great poem/quote I came across the other day.
Love them anyway.
If you do good, people will accuse you of selfish, ulterior motives.
Do good anyway.
If you are successful, you will win false friends and true enemies.
Succeed anyway.
The good you do today will be forgotten tomorrow.
Do good anyway.
Honesty and frankness make you vulnerable.
Be honest and frank anyway.
The biggest person with the biggest ideas can be shot down by the smallest person with the smallest mind.
Think big anyway.
What you spend years building may be destroyed overnight.
Build anyway.
People really need help but may attack if you help them.
Help people anyway.
Give the world the best you have and you might get kicked in the teeth.
Give the world the best you've got anyway.
--Dr. Kent M. Keith
Thanks so much for stopping by to see me. I hope you all are having a great weekend so far! Please continue to keep my friends Diana and Tara in your thoughts since they're having kind of rough times right now.
Friday, May 12, 2006 11:42 PM EDT
But still I am one.
I cannot do everything,
But still I can do something;
And because I cannot do everything
I will not refuse to do the something that I can do."
--Edward Everett Hale
Hi Everyone,
I don't feel much like writing a full update tonight. I'll just say that today was okay but the medical exam this morning was not the most fun thing in the world (the exam itself wasn't anything especially bad but I think if anything it will only hurt my case for disability since the doctor didn't find anything abnormal in his 2-minute exam and the random EKG social security ordered was normal). I'll do a real update tomorrow but for now I just want to go to bed and sleep for a long time. I hope you all have had a good week! Thanks for stopping by.
Thursday, May 11, 2005 11:32 PM EDT
and to look up at the stars."
--Henry Van Dyke
Hi Everyone,
Nothing too exciting to say today. I had a nice "club bed" day today - slept in a bit, watched my taped shows from Tuesday night, watched The Laramie Project that I have out from Netflix (really good), and just generally stayed in bed in my PJs and rested. I took a two hour nap this afternoon and wasn't feeling very well at all since then (I ate too much and just was generally feeling not so great). This evening I managed to drag myself into the shower since I was de-accessed today and couldn't very well pass up the opportunity for a real shower. Really, that's about it today. Tomorrow morning I have the appointment with the doctor for my social security disability application (at this point it's actually the first appeal) which I'm quite anxious and nervous about. It's so nervewracking seeing a new doctor in general but having to see one who will have a say in whether or not I'm approved for disability just makes it that much more nervewracking. I know it sounds bad, but I just hope I look awful tomorrow so he can see some reflection of how I feel on the inside. At least if he's awful I never have to see him again.
As you can hear (I hope) I changed the song on here. You're now listening to "May I Suggest" sung by Vance Gilbert and Ellis Paul. Scroll up towards the top of the page to see the lyrics. And I also changed the picture at the top of the page to one of me and my dad hiking on Monhegan Island in Maine in 2003. It's not the greatest picture of me but I like it and it reminds me of a good day when I was much healthier. I fully intend to be well enough to go hiking on Monehegan again this summer so I have until the end of August to get back enough strength to do that. Slow and steady...
I'm exhausted now but doubt I'll get to sleep for a few hours. But I should at least try. Thanks so much for stopping by to see me! I hope you all have had a great week so far. Please continue to keep Diana and Tara in your thoughts. And please continue to send good thoughts to my little buddy, Lexie, as she recovers from her second week of chemo (she had it yesterday). Sweet dreams!
Wednesday, May 10, 2006 11:40 PM EDT
was more painful than the risk it took to blossom."
--Anais Nin
Hi Everyone,
Today overall was a pretty good day. I slept in until about noon which I was pretty surprised about. I'm glad I left my alarm set to go off at noon (I had to be at work at 1:00pm) because I literally only woke up a minute before it went off. I didn't have a very good night last night - had trouble falling asleep because of bad abdominal pain which I'm happy to say hadn't happened for a while - so it's not surprising that I slept late. I did some stuff online before getting up, dressed, and packed up my stuff to go to work. Work wasn't too exciting. Spent about an hour on that awful project my boss is having me doing (see my update from Saturday for more details on that) and then had the other three hours to basically do what I wanted to do at the front desk. I typed up the program for my theater class performance a week from Friday, answered some e-mails and did other stuff online, and got to talk to my wonderful friend Tara who I hadn't talked to in a VERY long time. She could use some good thoughts if you have a few minutes to go over and visit her site and leave a message to let her know you're thinking about her. After work, I made a quick(ish) trip to the pharmacy to pick up a refill and to the grocery store to pick up a few things (mainly saltines and popsicles). This evening I made a new batch of adapted oatmeal cookies and I'm sure those will keep me going for a while. Other than that, I've just been resting, watching TV, doing stuff online, nothing too exciting.
Health-wise today wasn't too bad. I managed through the day without having to take a phenergan which is good since it really knocks me out. The abdominal pain has been coming off and on through the day but nothing too awful. I managed to eat okay today - mainly chicken soup, adapted oatmeal cookies, and I made some of my baked oven fries tonight for dinner. I still feel like I need to take it easy with food but hopefully things won't get any worse than they are right now. I can handle things the way they are right now - I'm able to eat enough to hopefully maintain my weight so that's what I'm mainly concerned about right now. That's it for today, I think.
Please keep my friend Diana in your thoughts. She is in the hospital after spiking a fever earlier today. I know she could use all the good thoughts you can send her way - she was already stressed about finishing up her schoolwork and this setback definitely isn't helping anything. And also keep my little buddy, Lexie, in your thoughts. She had her second week of chemo today and I'm sure she could use some good thoughts (although she's a real trooper and most of the time you wouldn't be able to tell she's going through so much!). Thanks so much for stopping by to see me. I hope you all have had a good week!
Tuesday, May 9, 2006 11:46 PM EDT
Expect your prayers to be answered in wondrous ways.
The dry seasons in life do not last.
The spring rains will come again."
--Sarah Ban Breathnach
Hi Everyone,
Today was an okay day overall but it's ending as it seems often happens - with me curled up in bed feeling sick to my stomach and just wanting to sleep for the next week. Oh well, I'll be asleep soon (I hope) and wake up feeling better in the morning. I didn't sleep in that late this morning and got done what I needed to get done before teaching my theater class this afternoon. The class went okay but I constantly feel like I have to yell to get the kids' attention or get them to do what I ask them to do (not to mention having to ask them over and over). I've enjoyed this session of the class and some of the new kids are really great, but I'll be happy when I don't have to stress about it anymore. Then I had choir rehearsal which was pretty good but so often it reminds me a lot of my theater class - often enough attention isn't being paid to our choir director and what we're supposed to be doing. But it's still nice to be there and sing and see everyone. Since getting home from that I ate some dinner (chicken soup, of course) and have just been relaxing and watching some TV.
Health-wise today wasn't too bad. My stomach seemed a little better today than it was yesterday but I need to try to be better about sticking with easy foods for a while. This afternoon/evening I've also had a moderately bad headache but hopefully that will go away through the night (it seems to have let up a bit since I took some medicine for it). Other than that, not a whole lot to report. Today I have been really clumsy - dropping things a lot or bumping into things on my bedside table with my elbow. I managed to spill a cup of water this afternoon and then part of a bottle of soda this evening - not fun to clean all that up from my rug and everything else they spilled on. Hopefully this wasn't caused by anything I should be worrying about, most likely just Lyme stuff getting worse which of course isn't NOTHING but it's not anything I wouldn't expect to be happening after more than three months off of Lyme treatment. I'm also having more symptoms of one of Babesia (one of the co-infections of Lyme) which is frustrating since I'm pretty sure Dr. Bock won't be putting me back on treatment for a little while longer. Maybe he'll be willing to try me on SOMETHING when I see him in a few weeks so I don't get a lot worse.
Okay, time for bed. Tomorrow I'm working in the afternoon but nothing big going on there that I know of. It's amazing how being done with my one college class this semester has lifted a weight off my shoulders. No more worrying about getting assignments done or having to keep an eye on my energy reserves for the trip up to Boston on Mondays. It's just nice not to feel as stressed out! Now if I can just get through the next week and a half while my theater class is finishing up! I hope you all had a great day today. Thanks so much for stopping by to see me!
Monday, May 8, 2006 11:18 PM EDT
Is the laughter keeps us coming back for more.
The space between the wicked lies
And hope to keep us safe from the pain..."
--Dave Matthews Band
Hi Everyone,
I feel like I'm going to throw up right now so this will be very short. I made it up to school today after sleeping in until almost noon. I got my paper turned in but of course forgot to give the book and video back to my professor that I had borrowed to help with my paper. Class was short today - only just over an hour - which meant getting out early but also got me stuck in horrible rush hour traffic that I usually avoid. I had to take a phenergan (nausea med) right before class so I was pretty zoned out and the drive home was pretty fuzzy but I managed fine. I stopped to pick up a perscription and then came home and got right into bed where I still am. My stomach is definitely not doing well today which sucks but I'm dealing. It feels like I'm pretty much back to where I was about a month ago with my ability to eat things but hopefully this is just a short setback. It's nice to be done with school for the semester - one less thing to worry about - and I'm so happy I made it through with minimal problems! I only missed two classes and one of those I missed because I was coming home from a Lyme disease conference so only one absence because of feeling bad. An accomplishment!
I'm going to bed now and hope the nausea subsides and I feel better tomorrow. Hope you all had a good Monday! Thanks for stopping by to see me!
Sunday, May 7, 2006 11:40 PM EDT
--Anatole France
Hi Everyone,
Today was an okay day overall. I made it to church this morning but I was pretty out of it during the service. After the service I stuck around and got to talk to a few people, including Lexie's mom. Lexie has apparently been doing pretty well so far - she's only had her first chemo treatment on this new protocol and will be having it every Wednesday but it's encouraging that she handled this first treatment pretty well. Please do continue to keep her in your thoughts. Lexie and I have a little get together date planned for next Sunday which I'm really looking forward to. I'm taking her to see 101 Dalmations at the Marion Art Center (where I work). The cast is almost all kids and I'm sure they're very cute so I think we'll have a great time seeing that together! The rest of my day wasn't too exciting. I stopped at the grocery store on the way home from church and got some easier to handle foods since my stomach seems to be causing me more problems again. And then I dove into my final paper and I'm happy to say that I'm done with it now!! I was worried for a little while that I was going to have to get up early tomorrow to finish it up but it looks like I can sleep in. I'll need to read it over and make sure there aren't any mistakes and that it makes sense (although oddly enough it seems that the papers I feel don't make as much sense get better grades than the ones that I feel make a lot of sense, go figure). And of course it's always hit or miss as to whether the printer will work but I'll get it printed out one way or another. And of course I watched Grey's Anatomy, although I think I should have taped it because I was trying to finish writing up my references during the beginning of it and wasn't paying very close attention to the first 15 minutes or so, but what I was paying close attention to was a good episode. I'm looking forward to next week's season finale, but it will be sad not to have that to look forward to every week. I guess I'll just have to watch the DVDs of the first season over and over!
Health-wise today wasn't one of my best days but I managed okay. I've definitely been having more nausea than I was for the past few weeks which sucks but I'm handling it okay. I had to take a Phenergan after church this morning which made it a bit difficult to get into writing my paper (all I wanted to do was take a nap) but I managed okay. I took it easy on the eating front and stuck to easier foods, including some natural blueberry applesauce I got at the store and of course my homemade chicken soup that I made yesterday. I'm just trying to drink a lot and keep things as stable as possible. Not much else to say about the medical front.
So, tomorrow is my last class of the semester! Yahoo! I made it through the semester in one piece (at least I think I'm still in one piece). I do have to go up to class to turn in my paper, return a book and video I borrowed from my professor, and fill out the course evaluation form. But it should be a short trip and I'm looking forward to having my Monday's free from now on (or at least open for medical stuff if necessary). The rest of my week is shaping up to be fairly busy - theater class and choir on Tuesday, working on Wednesday, free on Thursday, medical exam for my disability application on Friday, working on Saturday, and church and my outing with Lexie on Sunday (Sunday is music Sunday at church so I know I'll have to be there extra early for choir rehearsal and I'll also be singing a solo so I need to brush that up with my brother who will accompany me). It's not one of my busiest weeks but it will be plenty busy for my taste, thank you very much. And with that, I should head to bed and try to get some sleep so I hold up well through the week! Thanks so much for stopping by to see me. I hope you all had a wonderful weekend!
Saturday, May 6, 2006 10:26 PM EDT
And you start to think you won't smile again.
And those coals turn to cinder,
Think of me, and I'll warm you from within."
--Michael Troy
Hi Everyone,
I'm feeling pretty sick tonight so this will be short. My day wasn't all that exciting. I made it up and to work on time. I didn't really get to work on my paper at work, partly because my laptop was causing problems, but also because my boss had me working on this awful project of putting together a database of all the artists who have exhibited their work in the gallery for the past 50 years. It involves going through boxes of folders - a folder for each show - and it's just not much fun at all to do this and makes my back and shoulders hurt. But, oh well. After work I decided to go down to the beach for a while since it was such a beautiful, warm day. So I walked around a bit and then set myself up in my car to work on my paper and got a bit done there. Then I came home and had to take a nap - a combination of the early morning at work and having to take Phenergan this afternoon (I don't know what it is but I've been much more nauseous these last few days - perhaps I need to be strong and try to eat safer foods for a while, it's just hard to not want to eat the things that I can semi-tolerate and taste so good!). So I lost about two hours on napping and resting. Then I got things ready to finish up the soup I started yesterday which was not much fun because after about 20 minutes of cutting things up I started feeling really really sick. I knew I couldn't stand up anymore or I would pass out or throw up (and I was infusing my saline then so it was a bit odd) so I got a folding chair out but I couldn't really chop from the chair so I had to sit for a few minutes, then stand up and do a little chopping until I felt too sick to continue. I managed to get everything together and on the stove and the soup is done now. I did manage to get a bit more done on my paper tonight but I still have a ways to go so that will be my main project tomorrow (hopefully I'll be feeling a bit better). Other than that, just church in the morning and a short phone interview with one of my retreat participants who is writing a freelance article about Lyme disease and how it affects the lives of those who have it.
Before I finish, here are a few pictures from the beach today:
I need to sign off now and go to bed. I really hope my stomach settles down soon but I think I'm going to have to stick to easier foods for the next few days or a week and see if it helps. Oh well, at least I can eat SOME foods. Thanks so much for stopping by to see me! I hope you all had a good Saturday and have a good rest of the weekend!
Friday, May 5, 2006 11:41 PM EDT
Time after time
If you fall I will catch you - I'll be waiting
Time after time"
--Cyndi Lauper
Hi Everyone,
HAPPY CINCO DE MAYO!
Well, today didn't end up being a "club bed" day but it was by choice (well, sort of). I ended up running errands for a few hours this afternoon but the up side of that is that I got out in the beautiful weather. It was in the 70s and the weather report this morning was saying it could get up to 80! Crazy! I don't think it got quite that warm but it was at least in the mid-70s while I was out. My errands were pretty productive but a bit too much and really wore me out. But of course I didn't come home and rest as I should have. I had lost most of the day to sleep, online stuff, and errands and I really needed to get something done on my final paper today so I got cracking on that. I didn't get as much done as I would have liked, but I have a good start (okay, it's only a page and a half so far, but it is a start and the whole paper only has to be 8-10 pages). I'll bring my computer to work with me tomorrow and hope I can get some more done on it there and then continue as much as I can through the rest of the day. I don't mind writing papers at all, I would prefer a paper over a final exam anyday, but I just wish I could think more clearly and concentrate better so I could write it more easily. Oh well, I'm not complaining at all, I know there are many who are in far worse shape than I am. This evening I also started on a new batch of chicken soup (made the stock) and I'll finish that up tomorrow.
Overall my day today was pretty good. I wasn't feeling too badly overall but while I was out running errands I was feeling pretty sick, especially while standing in line when I felt like I could either pass out or throw up. Thankfully that seemed to pass once I was able to get into the car and sit down and drink some water. This evening while picking through the chicken meat to get the bones and skin out I started feeling really sick again. So now I'm just trying to sip away at some peppermint tea and I just ate some sorbet (oddly enough, that sometimes help settle my stomach) and I plan to get to bed soon. Not much else to say so I guess it's time to sign off and get ready for bed. I hope you all had a great day today! Thanks so much for stopping by to see me!
Thursday, May 4, 2006 11:58 PM EDT
Show me you can risk being completely at peace,
truly okay with the way things are right now in this moment,
and again in the next and the next and the next. . ."
--Oriah Mountain Dreamer
Hi Everyone,
Today was a pretty good "club bed" day (as Tara would say). I slept in until almost noon which was very nice, then had some breakfast (yummy eggbeaters omlette which is becoming one of my normal breakfasts), and basically spent most of the afternoon resting in bed. The highlight of my day was a very long bath. I had my usual set-up with my laptop on a folding chair and my Grey's Anatomy DVD to watch and after watching one episode of it, I was so comfy that I decided to watch another episode. Needless to say, by the time I got out my fingers were more pruney than I can ever remember them being, but it was a wonderful bath. This evening has been more of the same - resting, had some dinner, re-accessed Winnie (my port) and hooked up to my fluids. Unfortunately lately I've been wasting a lot of time playing games online, but as long as there isn't anything really important I should be doing, I don't really care about wasting time. Sometimes it's a good thing to waste/kill time (I'm sure I'll regret this when I'm stressed about any of a number of things I could stress out about in the next few weeks). So, not a very exciting day but a much needed quiet, resting day.
I heard from Lexie's mom that she did well with the chemo yesterday and made it to school today without many problems. I don't have much else to say tonight. I'm going to get ready for bed and crawl into my nice clean sheets (I guess I didn't include that in the rundown of my day - the rare occurrance of me changing my sheets, it takes so much effort but it's so nice to have clean sheets!) and get some sleep. I hope you all have had a great week so far and have a wonderful Friday! Thanks so much for stopping by to see me. Don't forget to sign the guestbook!
Wednesday, May 3, 2006 11:28 PM EDT
This could be
The difference between what you need
And what you wanna be."
--Matchbox Twenty
Hi Everyone,
Another long day today but thankfully now I have two whole days to spend resting and working on my final paper. Today's testing in Boston went okay - nothing too exciting. I had to get up at 6am to leave at 6:30 and catch the train up to Boston (I'm not an early morning person at all) but I managed to sleep for most of the ride up to Boston. I got over to Mass General and there was some confusion about the floor and building I was told to go to - it was mainly just a regular pediatric patient floor and the nurses didn't know anything about there being anything else going on on the floor. So they paged Dr. R and he called back - he was stuck in traffic but told me to wait there and he'd be there as soon as he could. So I went down to the family lounge and worked on some stuff for my theater class I had brought with me. He finally got there about a half hour or 45 minutes later and we got started. The actual EGG wasn't bad at all, the worst part was getting my skin cleaned really well which made it sting but it was so much easier than so many other tests I've had done. Then the electrodes got hooked up and Dr. R brought me a list of DVDs available to watch since I was going to be lying there unable to move for quite a while. About halfway through the test I had to eat and drink something (I had brought a muffin with me, not even knowing I was supposed to bring food to eat during the test) and then go back to lying still. My stomach held up okay but I jumped right at taking a Zofran when it was all over and I think the long morning without really being able to drink much made me a tad dehydrated but I hooked up to my fluids when I got home and I've been drinking a lot since then. Dr. R said it would take him about a week to sift through all the information from the test so I'll go back to see him either late next week or early the week after (I can't go to my original follow-up appointment next Friday because I got a letter from Social Security saying they've scheduled an exam with one of their doctors for next Friday, of course - that's for my disability application).
Other than that, nothing much happened today. I rested when I got home, watched the TV shows I taped last night, and watched "Lilo and Stitch" with my brother and his girlfriend. I'm really looking forward to sleeping in tomorrow and having the chance to just rest. I'm not too worried about attacking my paper too much tomorrow because I already have things figured out pretty well in my outline so as long as I at least start on it tomorrow and work on it more on Friday and through the weekend I should be fine. I also get to take a nice long bath tomorrow because I de-accessed after my saline was done tonight. Yay! So all in all I think tomorrow will be a good day.
I got word that my little friend, Lexie, did very well with her first chemo treatment on her new protocol today. I really hope she sails through this will as few complications as possible! I'm going to head to bed now and maybe watch some Grey's Anatomy or Friends until I fall sleep. I hope you all had a great day today and a good rest of the week. Thanks so much for stopping by to see me!
Tuesday, May 2, 2006 11:28 PM EDT
We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude ...I am convinced that life is 10% what happens to me and 90% how I react to it. And so it is with you ...we are in charge of our attitudes."
--Charles Swindoll
Hi Everyone,
This will be short because I'm really tired, have an early morning tomorrow, and still have to clear off my bed so I can actually get into it to go to sleep! Today was a long day. You know what I said yesterday about looking forward to my class at school being over? Well the same goes for the theater class I teach - not because I don't like the class and the kids, but it takes a lot of energy and makes for a long day. I went out running errands before my theater class (I felt like I was running all over the place - and I was but I managed to find pretty much everything I was looking for, although somehow the box of Crispix I swear I put in my cart didn't make it home with me and didn't show on my receipt, very weird). The class went pretty well but I feel like the kids are a little too comfortable at the art center and with me because they aren't very good at listening or doing what I ask or anything like that. They're good kids, don't get me wrong, but today we'd run through a scene and when it was done they would jump off the stage, grab the jumpropes that are props for some of the scenes, and not think for a second that they should be paying attention to me or getting ready to move on to something else. Kind of frustrating for me but I'm definitely getting better about being more firm and strict when I need to be. After the class I swung by home to pick up a drink and a sweater and headed off to choir rehearsal which went fine but I was pretty zoned out for most of it (there was a lot of time when the sopranos weren't doing anything so it was a bit boring). So, that's my day. Tomorrow I have an early and long day - up to Boston for my EGG (finally). I have to leave at 6:30am to catch the 6:55am train so I can be up at Mass General by 8:30. I'm not looking forward to the early morning but I'll manage.
Please keep my little friend, Lexie, in your thoughts tomorrow when she'll be getting her first treatment on her new chemo protocol. I hope you all had a great day today. Thanks so much for stopping by to see me!
Monday, May 1, 2006 10:36 PM EDT
--Claudius
Hi Everyone,
Whew! I made it through the day. I have to say, I'll be glad when I'm done with this semester and don't have to make the weekly trip up to Boston for class. The drive itself isn't bad. The homework isn't bad (although some weeks are easier than others). Being in class for the 2 to 2.5 hours isn't bad. But when you put all that together and add in the rest of my life, it really wears me out. But even with all that, I love the class and I love school in general - I think maybe I have my homeschooling background to thank for that at least partially. I have had some great opportunities when it comes to education. I was homeschooled until 6th grade when I chose to go into public school (my older sister had made that decision the year before when she was in 8th grade). I spent four years in public school (6th grade through my freshman year of high school) and for the most part I enjoyed it but after four years, I'd had enough of it (my freshman year wasn't all that great, mainly because of two pretty bad teachers) and I went back to homeschooling completely for my sophomore year (I had tutors and my parents did some subjects with me) and then was able to take some classes at the high school for my last two years of high school. I was basically the first homeschooler to try taking some classes at the school and my principal was really amazing about all of it. I was able to graduate and walk with my class, getting a diploma from my high school which is pretty much unheard of for homeschoolers, and it allowed me to pick and choose what I wanted to study a bit more than if I had been in public school full time. And of course I got sick in my sophomore year (it's really good that I was being homeschooled that year because otherwise I would have missed a ton of school) and being able to make my own schedule that year and for the next two years made a huge difference. Anyway, I didn't mean to go off on this tangent but for some reason it just came pouring out as I started writing. But back to my day...
I made myself get up at 10am so I could finish up what I needed to do to prepare for class today - basically get everything in order for my informal presentation on my final paper. I managed to get things done, get dressed, pack everything up to take to school, and off to school about when I had planned to leave. I made sure to leave early so a) I could stop and get gas ($2.89/gallon - these prices have GOT to go down sometime soon), b) I could have plenty of time to find an okay parking space, and c) I could meet with Maya (my professor) to run my paper outline by her. I managed to do all three and had about a half hour before class to write a few more notes for my presentation. My presentation went okay but my brain wasn't working all that well so I felt like I was jumping around a lot and then having to jump back when I realized I hadn't covered something. And I also felt that some people in the class (there are only 6 students in the class and one wasn't there today) were a little distracted by the tubing coming out from the bottom of my shirt. I've always had my backpack with me during class but no one has ever asked about it (it was never that noticible while I was just sitting at my desk) and I guess I could have mentioned something about it at the beginning of my presentation but I didn't. I saw a few of the students looking pretty hard at the filter part of the tubing (a rectangular piece of plastic that's blue on one side and white on the other and takes any air bubbles out of the tubing that might have formed in the bag of saline) and I'm not sure if they could figure out what the tubing was for.
Oh well, maybe I'll make more of a point of letting people know what it's for instead of letting it become a kind of elephant in the room as I did this semester (it's weird how people will look at something like that and wonder what it's for but they won't be forward enough to ask about it and since I don't feel a need to bring it up, all of us end up being a little uncomfortable). Anyway, I'm glad the presentation is over and now I just have to write the actual paper for next Monday. The drive back home was easier than I was afraid it might be - I was worried about bad traffic right around my school because there was a Red Sox home game tonight and my school is literally a half mile down the street from Fenway Park. But there wasn't much traffic and I was going away from the area so I'm sure that made things easier.
I've already written way more tonight than I was planning. Tonight I've just been resting, eating some dinner (my yummy oven fries), and watching some TV. Health-wise, today things weren't too bad. I was kind of nauseous all day with some worse waves coming on but I resisted taking Phenergan because I knew my presentation would be a lot harder to do through the Phenergan-induced fatigue and fog (basically I can't keep my eyes open with it which is great if I need it at night but a huge pain if it's during the day and I have things to do). I've been having some reflux issues lately which I need to talk to my GI about when I see him (either during my EGG on Wednesday or at my follow-up appointment next week). I don't have heartburn but I will frequently burp and have stuff come up into my throat or mouth (gross, I know). I've wondered if I might have silent reflux because I have some issues that fit with it but I haven't talked to any of my doctors about it yet. You'd think the twice-a-day Prilosec would take care of any reflux but I guess not!
Okay, I'm done. I could probably go on about things but I don't want this to turn into even more of a novel. If you made it through it all, you're either really bored or actually find my ramblings interesting! Either way, thanks for making it through all of that! I hope you all had a great Monday. And thanks for stopping by! And thanks to those of you who have signed my guestbook recently - I love seeing all the messages in there (to answer a question in my guestbook, I get the quotes at the top of each journal entry mainly from Quoteland).
Sunday, April 30, 2006 10:02 PM EDT
--Jane Addams
Hi Everyone,
I'm doing a bit of an earlier update than usual since Grey's Anatomy is on soon and I need a break from working on my final paper. I'm feeling okay about where I am with the paper (or more accurately with the preperation for the paper) but I'm quite nervous about the informal presentation I have to give tomorrow. But I'm getting ahead of myself there. This morning I didn't want to get up to go to choir rehearsal before church, but I did. Church was good and I got to talk to Lexie (the girl I've been asking you to keep in your thoughts) about her port surgery and some other exciting things that happened while she was up in Boston on Friday for testing. After the service I stuck around for the choir luncheon to raise money for our new piano. I was going to stay whether I could eat much of anything or not (it's a good cause, afterall) but the lasagna smelled and looked so good that I just decided I'd accept whatever stomach consequences came and had a bit of a few kinds of lasagna, a little bit of salad, and a roll. It was a great meal and I got to talk to some people I haven't really talk to much recently so that was good. But of course my stomach wasn't going to let me get away with eating all that "normal" food without showing me that it's still in charge and by the time I left the church I was pretty nauseous. Of course I didn't have a drink with me so I couldn't take a Phenergan right away but after a quick stop at the grocery store for some odds and ends and a drink I was able to get the Phenergan down. Of course that caused some problems in the afternoon with my plans to seriously work on my paper (or my paper and presentation preperation) since Phenergan knocks me out. After a very necessary nap I finally managed to get working and things have been going okay since then. It's amazing how something as simple as eating the wrong thing can ruin your plans for the rest of the day, but I guess there's always a price to pay for doing something you know you really shouldn't.
So, all in all today was an okay day. Not one of my best but definitely not one of my worst. I've been trying to eat a little something every few hours and that seems to be going okay. It's certainly better than eating too much at once and then feeling awful for the rest of the day (which unfortunately is happening right now - ate too much for dinner). Grey's Anatomy is just about to start so I better wrap this up. I hope you all had a wonderful weekend. Thanks so much for stopping by to see me! Don't forget to sign the guestbook so I know you were here! And please keep my friend Diana in your thoughts - she had to go to the ER yesterday and was kept at least for one night of observation so I'm sure she could use some extra good thoughts!
Saturday, April 29, 2006 11:17 PM EDT
--Rabindranath Tagore
Hi Everyone,
Another pretty boring day here. I had to get up to go to work this morning and I definitely did not want to get out of bed but I managed alright. At work, my boss had quite the project for me to get started on - making a database of all the past artists over the past 50 years! Yeah, and it of course requires going through boxes of folders (one for each show) and finding the artists' name, address, what kind of art they do, and how much they sold. Very tedious. I worked on it for just over 2 hours and got through one box which means about 2-3 years (part of 1992-1994). I'm sure this will be a long project but I'm sure if I keep chipping away at it, it will get finished. The rest of work was pretty quiet (my boss left at noon). I managed to get some reading done for my final paper (slow and steady) and didn't do much else. I had a nice, short visit from the little girl I babysit for in the summers, Morgan, and her mom. They were coming to buy tickets for 101 Dalmations, the kids show this spring, and it was nice to chat with them for a bit. The last time I saw them was the Friday I was prepared to (and thought I was going to) get admitted to the hospital so they were very happy to hear I'm doing better and said I look a lot better than I did then. Anyway, after work I came home and remembered I had to make cookies for the choir luncheon at church tomorrow (we're raising money for our new piano) so I whipped up a batch of peanut butter cookies (out of default I made peanut butter cookies since that was what we had the ingredients to make) while having a debate with my brother about healthy eating, fast food, and school lunches. We're both stubborn and pig-headed when we debate/argue so I think we both ended up a bit frustrated that the other wasn't conceeding, but it's still nice to have debates. I spent the rest of the afternoon slowly working on school stuff (like I said, slow and steady), watching some TV, and trying to rest. Tomorrow will be another early morning since I have to be at church at 9:30 for choir rehearsal before the service. So I better get myself to bed (or else go back to working on my paper...tough choice
).I don't think I've done much of a specific health update lately - there hasn't been much to report - but things do seem to be slowly improving. I'm eating an okay amount and spending most of my day feeling sick from pushing the food too much. But it doesn't seem to be getting worse and it seems I'm able to tolerate most things I get up the courage to try. There are some days when I just wish I wasn't trying to eat so much (and some days it feels like I never stop eating) because I just feel so sick from it but at least I'm gaining a bit of weight back. Hopefully things will continue to go well. Slow and steady! (That seems to be my mantra for the day...week...month.)
That's it for me tonight. I hope you all had a great day today and continue to have a good weekend! Thanks so much for stopping by and don't forget to sign the guestbook.
Friday, April 28, 2006 11:55 PM EDT
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time."
--T.S. Eliot
Hi Everyone,
Nothing too exciting to report about today and it's pretty late so this will be short. I slept in this morning (although not as late as I would have liked - my bladder woke me up which seems to be a common occurrance lately). I decided to try adding some more things to my eggbeaters omlette this morning and had one with onions, garlic, and pepper jack rice cheese. It was really yummy and seemed to sit okay on my stomach. The pepper jack rice cheese is a nice change from the mozarella that I usually use. Then I made a batch of adapted oatmeal cookies and added some of the nutritional powder to the batch to get in some more good stuff. The powder has too much of a flavor for me to handle it mixed with most things but you can't taste it in the cookies (could be because I didn't put very much in, but I didn't want to go overboard and then ruin the whole batch of cookies). My boss called me this afternoon and asked if I could go into work for an hour and a half so I said I could and went in from 3:30-5. When I got home I took a nice long relaxing bath that was way overdue (I was going to take one last night and another one today, but last night I was feeling too sick to feel like moving). The rest of the evening wasn't exciting at all - watched some TV, tried to do some online research for my final paper (yeah, I really have to put my nose to the grindstone tomorrow and Sunday to get some kind of rough draft together for Monday or at least get my thoughts in order for the informal presentation I have to give to the class), had some dinner (part three of four of my dinner from Friendly's on Wednesday), and accessed Winnie (my port). Now I'm hooked up to my hydration to run overnight and I'm going to head to bed. Tomorrow I'm working from 10-2 and spending the rest of the day doing school work (I hope). And Sunday is choir rehearsal before the service at church and a chior lasagne luncheon after the service to raise money for our new piano. So I have a few early mornings ahead of me! I better get some sleep!
Please continue to keep my little buddy, Lexie, and her family in your thoughts as she prepares to re-start chemo next week to stabalize her brain tumor. Thanks so much for stopping by to see me! I hope you all had a great week. Sweet dreams!
Thursday, April 27, 2006 11:36 PM EDT
spiraling down into the ache within the ache,
and I will show you how I reach inward and open outward
to feel the kiss of the Mystery, sweet lips on my own, every day."
--Oriah Mountain Dreamer
Hi Everyone,
I'm not feeling well at all tonight (ate too much, seems to be a growing trend for me in the evening) so this will be shortish. My appointment with Dr. Hubbuch (PCP) went well today. I've gained back some weight since I saw her last but she's still trying to figure out ways for me to get in extra calories and seems especially fixed on me getting in more fat. I know it's important to have fat in your diet, but that's the hardest thing for me to digest so it's not as easy as it would seem to get more in. Other than that, there wasn't anything big that happened at the appointment. My BP was really low for me (90-something/60-something - "normal" for me is about 120/80 or even a bit above that). Dr. Hubbuch wasn't too concerned about it but I think she suspected it was from mild dehydration, which is odd because I've been drinking more than usual lately. But I think that's because I've had a sore throat and dry mouth which is a sign of dehydration so who knows. Anyway, after the appointment I stopped in at Whole Foods Market and got some things including another kind of rice cheese - pepper jack. I'm so glad to have something that I can consistently tolerate that is more portable than some of my other staple foods. I think tomorrow I'll have an omlette with the pepper jack cheese to try it out. I also got some vegetarian coldcuts (ham) to try and odds and ends, nothing too exciting but I'm definitely trying some new things and hoping I'll be able to tolerate most of them. After making my way home, I went out again to go to the post office (it takes me so long to do such a simple errand - whenever I'm out I always seem to run out of time before I make it there) and I also took some pictures around town since it was such a gorgeous day. I want to make an online photo album to be kind of a tour of Rochester but I need to go out again to some other areas to take some more pictures before I'll set that up. When I got home, I was really exhausted (a combination of the long day and a Phenergan which knocks me out) and ended up taking a 2 hour nap - not really like me but I definitely needed it. Now I'm just trying to lie pretty still so I don't feel sicker than I already am (I ate some of my leftovers from last night for dinner tonight and I'm thinking it was either too much or not as well tolerated tonight as last night).
Please keep my little buddy, Lexie, in your thoughts tomorrow as she'll be having a long day of testing in Boston before beginning chemo again next week to stabalize her brain tumor. I hope you all had a relaxing, peaceful day today. Thanks so much for stopping by to see me. Don't forget to sign the guestbook!
Wednesday, April 26, 2006 11:43 PM EDT
--Anonymous
Hi Everyone,
Today was a good resting day for me. I stayed in my PJs most of the day, slept, rested, watched TV (got caught up on my Tuesday night shows - had two week's worth to catch up on), and did some reading for my final paper. I managed to write out an outline for my paper which is really helpful to me so I'll have an easier time sitting down to write it - I know where to start and roughly what each section will include. Makes me feel a little more at ease about it all. This evening my brother, sister, and I went out to dinner for a sibling night (it had been a few weeks since we'd had one). We went to Friendly's and I've been doing pretty well with eating lately so I...ordered a real meal! Okay, sure, I only ate a tiny bit of it (a quarter of a grilled chicken sandwich and a few fries) but it was real food and it was really tasty. My stomach didn't reject it so I think the other three-quarters of the meal will get picked at over the next few days. It's hard trying to figure out my stomach right now - it seems to be doing better and it's very possible it slowly was improving over the last month or so and it was hard for me to see it while it was happening (slow improvements are hard to see when you're in the midst of them). I'm definitely eating more "real food" and the baby food jars are sitting untouched which is great! And I seem to be gaining back weight, but it doesn't feel like it's in proportion to the amount I'm eating (I seem to be gaining back MORE than I'd expect) but I think part of that is that my metabolism is so slow that ANY additional food is enough to make a difference. I do think part of the weight gain is from water retention since it can fluctuate as much as 5 lbs. throughout the day, but whatever. I'll just be happy not losing anymore and slowly gain some of it back. So my day was good overall, but I'm having some pretty big abdominal pressure right now (I snacked a bit throughout the evening and I think I ate too many Ritz crackers). Nothing big so I'm not complaining. I had an awful headache all day that my migraine medicine didn't seem to touch, and motrin didn't help, but I guess throughout the day it slowly got better because it's really not noticible anymore (*knock on wood*).
Tomorrow I just have an appointment with Dr. Hubbuch (my PCP) in the morning and then nothing for the rest of the day - nice. I need to run a few errands (still trying to get out to the post office - why is it so hard to do such a simple errand?) and take a good chunk of the day to rest and work on my paper. And I plan to de-access tomorrow evening and have a nice shower/bath either tomorrow night or Friday (or probably both, actually, since I'll spend as much time soaking and relaxing that I can). Nothing planned for Friday. Then work on Saturday and church on Sunday followed by a lasagne luncheon put on by the choir to raise money for our new piano. Not a bad rest of the week and I can definitely use the free time. With that, I'm going to get myself to bed. I don't seem to be able to fall asleep until about 2am lately but it doesn't stop me from trying to go to bed at my "normal" bedtime of around midnight.
Please keep my little buddy, Lexie, in your thoughts tomorrow as she goes in to have a port put in so she can be re-started on chemo to stabalize her brain tumor. She and her whole family (especially her older sister, Emily) could use lots of good thoughts over the next week and weeks to come. Thanks so much for stopping by to see me! I hope you all had a great day today. Sweet dreams!
Tuesday, April 25, 2006 11:53 PM EDT
--Ansel Adams
Hi Everyone,
Today was, as I was expecting, a very long, tiring day but I made it through it in one piece. My day started out by being woken up by my cell phone ringing. I recognized the number as my infusion company (where I get my IV hydration supplies from) and I knew what it was probably about and that I probably had an e-mail from them waiting for me so I opted to not answer the phone. Sure enough, when I checked a little while later there was an e-mail from them asking what supplies I need with my next shipment (being shipped tomorrow). I hate getting woken up by my phone ringing and I know I could avoid that by turning it on silent or vibrate but I hate to do that since it's possible someone would really need to get in touch with me. Plus there's a high chance I'd forget to turn it back to the normal ring so I'd end up missing calls for the rest of the day or longer (it's happened quite a few times before). Anyway, enough about my phone. This morning I decided to give a new breakfast a try - eggbeater omlette with rice cheese. It was really good and it seemed to sit okay. Rice cheese has become a new pretty well tolerable food for me. I've been able to make little sandwiches with it on a dinner roll. It's so nice to have some more "regular" food that I can tolerate, even if it's not really my "normal" food, I can deal with adjusting things as long as I can have some real food again! The eggbeaters omlette is definitely going to become another regular food for me, especially since I can use all the protein I can get.
I managed to get out and run most of the errands I had planned. I got my records from Dr. Berman's office and there wasn't really anything surprising in them but it's interesting to look through what he's written. A quick stop at the toy store to try to get origami paper (they were out of it), then the bank to deposit my tax returns (yay!), and over to K-Mart to try to get origami paper there (another disappointment, but I did find some thin paper that worked okay). Then my theater class. I gave the kids the opportunity to come early and learn how to fold origami paper cranes and two of the kids came and that was fun. Then the real class went well. I really am impressed with some of these kids. I'm trying to think of what play I'd like to do with them in the fall and I have a few ideas so far (mainly The Secret Garden, Peter Pan, or The Wind in the Willows (I already have a script for that one) but I'm not sure which I'm leaning towards). And after class I managed to have enough energy to make it to choir rehearsal which was good - it's always nice to have a chance to see people and have a little socializing during the week. I found out (at rehearsal) that my little buddy, Lexie, (her mom's in the choir) is going to be having her port put in on Thursday and then has a long day of testing on Friday and will start chemo next Wednesday so she and her whole family could use some extra good thoughts her way (especially her older sister, Emily, who needs to be remembered as much as Lexie).
The plans for tomorrow have changed. I thought I was going to be having the EGG done tomorrow in Boston but I called to confirm this (I'd never gotten the final confirmation call after they said they needed to check with Dr. R before finalizing it) and, after checking with Dr. R (apparently they hadn't heard from him about scheduling the test), they told me he's speaking at a conference tomorrow morning so he obviously can't do the test. So now it's scheduled for next Wednesday. I'm a bit annoyed that things are being delayed but I'm honestly a bit relieved to have tomorrow off to rest because I could really use it. I plan to do some work on my final paper for my class at Wheelock and just rest a lot. Maybe I'll de-access tomorrow evening and take a nice bath, that sounds really appealing. Thursday is still a medical day, so I'm not free from medical stuff this week (next week was going to be medical-free until the EGG got rescheduled).
Okay, I've written far too much for not having much going on. I'll call it a night now and get some much needed sleep (I can feel the bags forming under my eyes). I hope you all had a good day today! Thanks so much for stopping by. Don't forget to sign the guestbook so I know you were here!
Monday, April 24, 2006 11:59 PM EDT
For, indeed, that's all who ever have."
--Margaret Mead
Hi Everyone,
Today didn't end up being quite as full as I thought it was going to be, but that's because I opted to put some things off until tomorrow when I have a bit more time to go running around (although whether I have the energy remains to be seen). I was feeling pretty tired when I woke up and spent a while doing things online and trying to decide what to do today and what to put off or skip altogether. I was really close to e-mailing my professor and saying I wasn't feeling up to making it to class, but I didn't send the e-mail and decided it would be a better choice to go to class but not go to Dr. Berman's office to get my records today. So I just went straight up to school and I'm glad I did. My professor (Maya) went over how our final papers should be put together and it was helpful to see two people present their final paper topics to the class (which I'll be doing next Monday). And I got to talk to Maya after class a bit about my paper which helped me figure out which direction to go in (I still have reading to do and some more thinking to work through but I'm in a better place overall now). Then before coming home I made a quick trip over to the pharmacy to pick up my Phenergan refill (don't want to accidentally run out of that!) and a quick zip into the grocery store to get some juice boxes and snacks for my theater kids for tomorrow (I've gotten into the habit of having juice and some kind of snack for the kids and it seems to work out pretty well, although I need to talk to them about cleaning up after themselves instead of leaving things for me to clean up after class). For some reason when I got home I just started cleaning up my room - my bed was a mess and the rest of my room was in disarray so things are a bit more orderly now.
So, tomorrow's agenda includes a trip over to Dr. Berman's office (finally), a stop at the toy store to pick up origami paper, then my theater class (some kids are coming early to learn how to make origami cranes because one of the scenes they're doing (well, two of them are doing) is about Sadako and the Tousand Paper Cranes), and choir rehearsal. Whew! And unfortunately Wednesday isn't a recovery/resting day for me since I think the EGG has been scheduled for that day (have to call Dr. R's office tomorrow to check on that since I thought they were going to call me to finalize it) and on Thursday I have an appointment with Dr. Hubbuch (my PCP). But Friday should be a completely free day so I'll just have to keep pushing through until then when I can crash.
I'm tired just thinking about my week so I think it's high time for me to get some sleep (or at least try to). Thanks so much for stopping by to see me! I hope you all had a great Monday. Please keep my little buddy, Lexie, and her whole family (especially her older sister, Emily) in your thoughts and prayers as she has to go back on chemo for 18 months to stabalize her brain tumor. Sweet dreams!
Sunday, April 23, 2006 10:35 PM EDT
The tasks are done and the tears are shed.
Yesterday's errors let yesterday cover;
Yesterday's wounds, which smarted and bled,
Are healed with the healing which night has shed."
--Sarah Chauncey Woolsey
Hi Everyone,
Happy Sunday! I can definitely say that today was a great day, maybe not any better health-wise but definitely memorable in other areas (and health-wise it wasn't one of my worst days, so that's good, too). This morning was the healing service at church. Our student intern minister, Elizabeth organized this service and (as I think I mentioned before) I was asked to speak about my healing journey. The service as a whole was wonderful. My little buddy Lexie read the opening words and did a great job (and was really cute doing it). (She is about to begin 18 more months of chemo to stabalize her brain tumor so she and her whole family (especially older sister Emily) could use some extra good thoughts.) And then I did my part in the middle of the service. I used part of one of my creative writings posted on my blog (the last paragraph of Post-Doctor Thoughts: Learning How to Fly) as a kind of opening (along with a short paragraph as a bit of an intro). And then I read my poem, the one that I've had up on this site for quite a long time (scroll up a bit to read it or wait until the end of this post where I'll include it). The rest of the service was wonderful - Elizabeth's homily (a short sermon) was very touching and then there was a "Ritual of Healing" where members of the congregation (whoever felt moved or comfortable) went up to the altar, lit a candle, and wrote a prayer or hope of healing (anonymously) on a piece of paper which will all be included into a book of healing that Elizabeth is putting together. And of course there was music (drumming while we lit the candles) and the whole service was just very touching. After the service a lot of people spoke to me about my reading and my poem - lots of positive feedback and people telling me that it needs to be shared with more of the world (most of the members of my congregation don't know about this site) and stuff like that. Very flattering and I was so glad to be able to be a part of this service and share a part of myself with the people who have become like an extended family to me.
After that wonderful service, my dad and I came home, I finished up the chicken soup I started making yesterday (I opted not to make rolls from scratch and picked some up at the grocery store yesterday), and I've spent the rest of the day resting, eating (I feel like I've been constantly eating for the past week or so and, while that's good in some ways, it makes it so I'm more or less nauseous 24/7), and doing some stuff online. The soup turned out pretty tasty and the rest of the day was pretty good. Oh, and I also made my plane reservations to go to the DYNA Summer Chill in July and I got an awesome deal! I'm so glad I waited it out and happened to check the prices today.
Now I'm tired and just watching Grey's Anatomy now (a little annoyed that it's not a real episode this week - what's with these episodes just recapping what's already happened?) and I plan to go to bed as soon as it's over. Oh, and I officially have my third pump for my IV hydration. Yeah, after I got the second one that was so noisy I knew I wouldn't be comfortable actually using outside of the house (especially in quiet places like to class or church), I got in touch with my infusion company and first asked if I could just keep using my old pump, but apparently the tubing for that pump isn't made anymore (odd since my old pump doesn't look nearly as old and clunky as the loud one). So they sent me another pump and I'm using it for the first time today and I'm happy to report that it's nice and quiet and other than the annoying way it alerts you that the infusion is almost done it seems really good. (I'll post a picture of all three pumps tomorrow.) Tomorrow I have a bit of a busy day - running over to Dr. Berman's office to pick up my records (I'll be glad to officially be done with his office), stopping at the post office, and then up to school for class. I hope it isn't raining. To be quite honest, if it's raining, I may opt to not go up to school and take the day as another resting day. The class tomorrow is just two people presenting their final paper topics. It would be good to be there (and possibly ask my teacher to help me break through this block I've had about my final paper) but if I'm not feeling up to it tomorrow, I'm not going to push it.
And before I sign off for the night, here's my poem as I promised I'd include in this post:
I’m trying to tell you something about my life.
About how I struggle from day to day
To simply live.
About how I wish, hope, pray.
About how I yearn to rid myself of the pain.
About how this body is not mine,
Not me.
I am not this body.
I am simply contained within it.
I’m trying to tell you something about my essence.
About my true being.
About how I long to break free from this body,
From this vessel that has endured so much,
And be free.
Fly with the wind,
Laugh with the trees,
Dance with the eagle as it soars through the sky,
And be free.
Be free to be me.
I’m trying to tell you something about my soul.
About who I really am.
About the way I search for belonging,
For acceptance,
For where I belong,
For my place in this world.
About how I long to feel warm,
And safe,
And know who I am,
And know there is someone who knows me,
And loves me,
And will always love me.
Someone who will hold me in their arms when I cry,
And calm my fears,
And complete my soul,
My longing,
My belonging.
I’m trying to tell you something about love.
About how I long to look into someone’s eyes
And see myself reflected back.
To see myself through the eyes of love,
Someone else’s love for me,
Unconditional,
Unwavering.
About how I sometimes wonder if this exists,
If there is really someone out there
Who will look into my eyes
And see all the way to my soul.
And bring out of me all that is beautiful
And hidden
Deep within me.
About how I want to know that I’m complete,
Loved,
Happy,
And that I make someone else feel the same way.
I’m trying to tell you something about who I really am,
About my true being,
My core,
My center.
About how I am just energy,
Just light,
Pure and white and simple.
About how I radiate and shine.
About how few can really see me.
Few really know me.
Few have seen my light.
About how it is protected,
Deep within me.
About how I’m afraid that if I let it shine free,
It will be lost forever.
About how I long to let it shine free,
To let everyone see how beautiful it can be,
How beautiful I can be,
How free,
How real,
How pure and good.
I’m trying to tell you something about my life.
About how this body is not mine,
Not me.
I am not this body.
I am simply contained within it.
Thanks so much for stopping by to see me! I hope you all had a great, relaxing, restful weekend.
Saturday, April 22, 2006 10:45 AM EDT
Tell me how you crumble when you hit the wall,
the place you cannot go beyond by the strength of your own will.
What carries you to the other side of that wall, to the fragile beauty of your own humanness?"
--Oriah Mountain Dreamer, "The Dance"
Hi Everyone,
I'm sorry for no update last night. I was doing okay until the late afternoon when I ate some things and didn't listen to my brain telling me to stop eating so I ended up feeling really sick. I spent the rest of the evening lying on my bed (or curled up in the fetal position on my bed) not wanting to move because that made me feel sicker and just wishing I'd throw up and feel better. But I kept everything down and eventually got to sleep so that's good on both counts. Now that I'm able to eat a bit more and have a bunch of things I can tolerate, I need to pay a lot more attention to how much I'm eating because, as last night shows, when I try to eat too much I wind up feeling so sick. Anyway, the rest of the day was very quiet and laid back. I slept in a bit which was very nice after a few early mornings and then spent most of the day doing stuff online, watching TV, and generally resting. I haven't been doing work on my final paper for school because I'm having a huge mind block (or really bad brain fog) in deciding exactly what the paper is going to focus on. I'm writing it about babbling in hearing and deaf babies but I have to decide if I want it to just be a general paper about it (comparing the babbling of the two groups of babies) or to set it up as a "if I was going to do research on this particular group of babies, this is what I'd do." The "particular group of babies" I'm referring to there is a very unique group of hearing babies brought up in a home with two deaf parents and the babies learn two signed languages but no spoken language. My question about that (which is what my hypothetical research would focus on) is whether these babies who have essentially had no exposure to spoken language would be able to pick up a spoken language and master it like a first language while still maintaining the two signed languages. The problem with doing my paper on that is that then I have to go looking into the critical period for language development and other things like that, but I think I just need to do a bit more research to see if there's enough info for me to go that way. If there isn't, my decision is easier and I'll just go ahead with a more general paper.
Enough about my final paper. So, up until the awful nausea last night I had a pretty good day. Today I'm at work until 2:00 and then I'm going to run to the grocery store to pick up some things to make another batch of my chicken soup since we're almost out of the last batch and I've been doing it as a two-day process. Then I guess I'll make the soup stock and finish up the soup tomorrow. I'm also toying with the idea of making rolls because we're out of the store bought rolls that I can tolerate and I want to see if I could handle my homemade rolls which are really good. But that might be too ambitious. Oh well, I think I have everything at home to make them if I decide I'm up to it. I may not do an update tonight since I basically just laid my day out for all of you. :-p Thanks for stopping by to see me! I hope you all are having a great weekend so far! (Enjoy the spring weather if you have it - it's beautiful here today!)
Thursday, April 20, 2006 11:08 PM EDT
--Martin Luther King, Jr.
Hi Everyone,
I'm feeling pretty sick tonight (tried eating too much this evening) so this is going to be short but I wanted to at least post something about my appointment with Dr. Bock today. The appointment went well - Dr. Bock was thrilled (his own choice of words) with the way things seem to be moving along in the GI realm with the new GI (Dr. R) and also with the fact that I'm able to eat a bit more and my weight has more or less stabalized (I had lost 2 lbs. since my last appointment with him but during that time my weight dipped down more than that so I've gained back a few pounds since then). So he's not changing anything at this point, keeping my meds the way they are and he's looking forward to hearing what Dr. R finds and decides to do. Apparently the labs I had done at my last appointment weren't great but basically were what Dr. Bock would expect to see in someone who is malnourished and unable to eat enough. It also showed that I was obviously not getting in enough protein but hopefully that's a bit better since I'm eating chicken soup (my dad kept saying I was doing a bit better now because of the chicken soup - must be magic or something!). I didn't have any labs drawn today (but I did have labs drawn last week at Dr. R's office) and I got in and out of the office in just under an hour. Then my dad and I headed to my aunt and uncle's house to visit and have dinner. That was really nice and my aunt especially was very relieved that I was doing better (and apparently looked better) than the last time I saw them. Unfortunately their neighbor and good friend (especially to my aunt) just passed away last night so things were a little more blue than usual (if you could keep my aunt (and uncle) in your thoughts through the weekend to help them through the funeral I'm sure they could use it).
I need to just go to bed now so I'll leave things there. Oh, and I got a call this morning from Dr. R's office saying they can't do the EGG tomorrow so it's being rescheduled for next Wednesday (not 100 efinite yet but most likely that's when it will happen). This means that I will thankfully have tomorrow to rest and recover from the long days yesterday and today. With that I'll sign off and head to bed. Thanks so much for stopping by to see me! I hope you all had a good Thursday and have a great Friday tomorrow!
Wednesday, April 19, 2006 10:11 PM EDT
Open the fist clenched in wanting and see what you already hold in your hand."
--Oriah Mountain Dreamer
Hi Everyone,
Well, today was a long day (as I expected) getting the gastric emptying scan done at Mass General in Boston. My mom and I took the train up to Boston which meant we had to take a train that got us there early for my appointment (the down side of taking the train, having to go with the train schedule instead of your own). We found our way down to a cafe in the basement of the main building and my mom got something to eat and we just waited there for a while 'til it was about time to head up for my test (I was NPO for the test so I couldn't have eaten or drank anything even if I'd wanted to). After some issues of trying to figure out exactly how they were supposed to do the test (Dr. R ordered it to be done differently than they usually do it) and a room change (because of the different way the test was being done on me) I was given my wonderful cup of radioactive scrambled eggs to eat. The test wasn't bad all in all but there was a lot of waiting involved - scans at 20 minutes, 40 minutes, 60 minutes, 90 minutes, 120 minutes, and 3 hours. I brought my school work and other things with me to keep me occupied. After the test was over my mom and I headed back to the train station and then back home on the train. I'm just really worn out from the long day and my stomach isn't liking that I've been putting too much food into it this evening (trying to make up for not being able to snack on food the rest of the day maybe?) so I'm just going to take some Phenergan and go to bed. Oh, but before I do that, I made a call to Dr. Berman's office from the waiting room at the hospital to cancel my appointment on Friday and find out what happened to getting my medical records. They have no record of me coming in and filing out a medical release form! Grrr! Eventually I found out how much it will cost to get copies of my records and they're there for me whenever I can get over there. I'm annoyed about this since I made a special trip over to their office to fill out the release form in the first place, but oh well, I'm now officially severing ties with that office - wish I'd done it sooner!
Tomorrow will be an all-day trip to Albany to see Dr. Bock, but my appointment isn't until 2:00 instead of my usual noon slot so my dad and I can leave a little later than usual (10am instead of 8am). And of course we'll be stopping in to see my aunt and uncle for dinner on the way home so that will be nice. I hope you all had a good day today and have a good rest of the week! Thanks so much for stopping by to see me. Please take a minute and sign my guestbook so I know you were here!
Tuesday, April 18, 2006 10:18 PM EDT
--American Indian Proverb
Hi Everyone,
I'm calling it an early night tonight in preperation for a long day in Boston tomorrow. Today was a pretty good laid back resting day for me. I basically just rested in bed for most of the day - really not very exciting. I did get dressed and go out to choir rehearsal this evening which was good but I was feeling pretty sick to my stomach from eating earlier in the day. I was feeling a little better by the time I came home so I managed some chicken soup and a roll but I'm starting to feel sick again so I kind of want to get to bed before I gets too bad. Tomorrow I'll catch the 9:38am train up to Boston (I'll get there earlier than I need to for my test but there isn't a later train that would get me there in time) and head over to Mass General for my gastric emptying scan. It'll be a long day all in all but I'll be bringing stuff with me to do between scans. I better get to bed and try to get to sleep so I won't be totally exhausted in the morning.
Thanks so much for stopping by to see me! I hope you all had a great day today!
Monday, April 17, 2006 11:55 PM EDT
Show me you can risk being completely at peace,
truly okay with the way things are right now in this moment,
and again in the next and the next and the next. . ."
--Oriah Mountain Dreamer
Hi Everyone,
I have now officially had more than 50,000 visitors to my page! Okay, so not really 50,000 different people, more like 50,000 "hits", but anyway you put it it's pretty cool! I have had this page for...680 days (just over 97 weeks - wow!) so that works out to an average of 73.5 visitors a day. Not too shabby! And the 50,000th visitor actually signed the guestbook and left a wonderful message for me. It means a lot to me to read all the wonderful messages in my guestbook so if you have a free moment while visiting, please do let me know you stopped by even if it's just a message to say hi. Now, on to the regular update...
Today was a quiet, laid back day which I really needed, especially with the way this week is shaping up (more on that in a minute). I slept in a bit but a full bladder eventually forced me to roll out of bed and I didn't go back to sleep. Instead I watched the rest of the shows I taped last Tuesday (one of the few nights I have regular shows I watch and it figures it's one of the only evenings I'm not home for because of choir rehearsal). And after a while I got up and dressed and off to meet up with Elizabeth, the student intern minister at my church. We had a nice time talking while sipping coffee and tea (she had the coffee, it's been a long time since I've made an attempt at drinking it myself) and it was just a nice relaxed time. I'm also going to be participating in her service this Sunday which is on healing. I don't know for sure what exactly I'll be doing yet, but a reading of some sort (I've been trying to figure out what I'd do for a reading and I think I'll probably write a short reflection on my own healing process). There's a chance I'd also do a musical offering, too, but if it looks like that will fit into the service, it will kind of depend on whether or not my brother is available to come accompany me (there's some question about his current work schedule and he's been off at work since I got home so I haven't been able to ask him). Anyway, the rest of the day was spent resting, watching some TV (yeah, I seem to be doing quite a bit of that lately), doing stuff on my computer, and just generally taking advantage of having a quiet day at home. Tomorrow will be another quiet day (I don't teach my theater class this week because it's school vacation so there isn't a class) with just choir rehearsal in the evening.
While I was out having tea with Elizabeth I got a call from the scheduler at Dr. R's (GI) office about scheduling the EGG and it's been scheduled for this Friday so it looks like this week is very medical-intensive. I have the gastric emptying scan in Boston on Wednesday afternoon (that'll be a 3-4 hour test), then an appointment with Dr. Bock in Albany on Thursday (an all day affair), and the EGG in Boston on Friday morning (that will be at least 4 hours long). But I'm fine with getting all these tests done sooner rather than later so that I can get back in to see Dr. R soon and get things figured out. With the tests done this week, I'm guessing I'll get back in to see Dr. R sometime next week. Health-wise today things weren't very eventful, just more of the usual stuff. I tried eating some of my Easter candy earlier today (I didn't get any chocolate in my basket, just some skittles and starburst and hard candies) and I tolerated a little bit, but I think it's better to keep it away from me as the temptation is just really hard to ignore. I'm feeling pretty nauseous now and my bedtime meds are kicking in so I think it's about time to go to sleep (or try to at least).
Thanks so much for stopping by to see me! I hope you all had a great Monday. If you have a free minute, go over and check out my blog (I posted a few things yesterday). Sweet dreams!
Sunday, April 16, 2006 11:29 PM EDT
"And for all you know
This could be
The difference between what you need
And what you wanna be."
--Matchbox Twenty
Hi Everyone,
First of all...
I hope you all enjoyed a nice Easter doing whatever was on your agenda - a big dinner with family, a quiet day at home not doing anything special, etc. My Easter was pretty good but really long and tiring. It was an early morning for me - up at 8:15am and out the door about a half hour later so I could get to church for choir rehearsal at 9:15am. Church was nice, the choir sung pretty well (we could have done better but I'm happy with the way it went), and I got a chance to talk to some people before and after the service. Among those that I talked to was my little buddy Lexie's mom, Alice (she's in the choir, a fellow soprano) and it turns out that Lexie has a big test in Boston on Wednesday, the same day as my gastric emptying scan also in Boston. We won't be at the same hospital, but we won't be too far away and since we both know about the others test, we'll be thinking about each other and hoping things go well. If you could send some extra thoughts Lexie's way, I know she could use them this week. I've talked before about how awesome my church family is so I won't go into that again, but suffice it to say that going to church is always comforting and I really feel supported there. Anyway, after church I came home, did some stuff online and was settled in for a nap when my mom knocked on my door to tell me we were leaving in 5 minutes to go over to my brother's girlfriend Maria's house for Easter dinner (I knew we were going but thought I had time for a nap - guess I miscalculated the time!). I had taken some Phenergan for break through nausea (and in preperation for trying to eat something at dinner) and without a nap to sleep off the drowsy side effect I was about ready to fall asleep all afternoon, but I managed. Dinner was nice (although I just had a little mashed potatoes and a roll) and it was good to see Maria and her mom's new house and spend time with them and my family. Since then I've just been resting, watching the latest episodes of The Next Food Network Star (I've been swept up in that show), and munching on some food. Earlier today I also posted a few things to my blog so take a minute to head over there if you have the time.
Tomorrow's agenda isn't bad at all - just a meeting/chat with the student intern minister at my church (Elizabeth). We've been trying to find a time to meet and just talk and get to know one another a bit better and she's also doing her service this month (this coming Sunday) on healing and wants to talk about ways I could contribute to the service. So I'm really looking forward to that meeting. And other than that, I have no plans for the day! Yay! So that means sleeping as late as I need/want to (the meeting is at 2pm so I just have to be up and over to church by then which shouldn't be an issue at all), time to rest and catch up on the few TV shows I taped last week and haven't had a chance to watch yet, perhaps watch a movie, hopefully get a little school reading done, but none of this absolutely HAS to happen. It's always nice to have a day like that.
I hope you all had a great Easter/Sunday today and I hope you have a great upcoming week. Thanks so much for stopping by to see me!
Sunday, April 16, 2006 1:21 PM EDT
Saturday, April 15, 2006 11:12 PM EDT
"I cannot say whether things will get better if we change; what I can say is they must change if they are to get better."
--G. C. Lichtenberg
Hi Everyone,
Today was an okay day for me. In some ways it felt long and in some ways it felt short - you know the way some days can feel like that. It started pretty early with work at 10am. I spent the first two hours at work cleaning up and reorganizing the art studio with a few of the other art camp teachers and then took over the desk until 2pm. Cleaning up the studio required a bit more moving around than I was really up to but I managed alright. Then I came home and took a really nice, long bath while watching part of a movie on my computer and then finished the movie later this afternoon. Overall it was a pretty laid back afternoon. This evening for dinner I made more of the oven baked french fries that I tried out yesterday and they were really yummy but I need to work on not pushing myself to eat a lot because I wind up feeling sick afterwards. I've been snacking on stuff more or less all day so I've eaten a pretty fair amount today but also spent most of the day with stomach pressure and pain and nausea so there's always a trade off. Now I've just re-accessed Winnie (my port) and I'm hooked up to my hydration to run overnight again. Tomorrow will be an early morning - have to be at church tomorrow at 9:15am for choir rehearsal before the service. And then my family is going to my brother's girlfriend's (and her mom's) house for Easter dinner in the afternoon. Hopefully I'll get a chance to nap sometime in there so I'll last through the day! Oh, and I have to get the Easter baskets all put together tonight so I better do that now and then get myself to bed!
I hope you all had a great day today. Thanks so much for stopping by to see me. And Happy Easter!!
Friday, April 14, 2006 10:37 PM EDT
"Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all."
---Dale Carnegie
Hi Everyone,
Today was a pretty good day for me but I really didn't do anything (I'm still in my PJs as I type this). I really needed a day like this with no plans, no real responsibilities, just a day to spend in bed resting, catching up on some e-mails and visiting some Caringbridge friends. This evening I tried making some oven-baked french fries and they turned out really yummy and really were just potatoes cut up with salt and pepper and a little cooking spray on them! I ate more than I should have, though, so I've been in a bit of pain this evening but I think it was worth it. Those will definitely become one of my regular foods when I feel like making a little something or if I'm craving french fries. It's pretty sad that that was the highlight of my day, but that just goes to show how uneventful and quiet my day was. Health-wise things were okay, not great but nothing really awful so I won't complain. Tonight will be an early night I hope (although as I write this it's getting later and later) since I have to go to work at 10am tomorrow. So I'm off to hook up my saline to run overnight and watch TV (maybe I'll put in a movie) until I fall asleep. I hope you all had a great day today! Thanks so much for stopping by to see me! Don't forget to sign the guestbook and if you missed my update yesterday about how my GI appointment in Boston went, look in the journal history. Sweet dreams!
Thursday, April 13, 2006 10:35 PM EDT
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Just because they're not on your road doesn't mean they've gotten lost."
--H Jackson Brown, Jr.
Hi Everyone,
Before I get on to today's doctor's appointment (which went well, by the way), I have to back up to last night a bit. When I went to bed, I felt pretty sick (I'd eaten a bit too much dry cereal too late at night) and had trouble falling asleep because of it, but I drifted off eventually. I tossed and turned and around 4:00am I woke up with intense nausea and felt so much like I was going to throw up that I decided to make my way to the bathroom. A few minutes later the dry cereal made a reappearance. So much for avoiding throwing up through all these GI problems! I hope this was just a one time occurrance but I'm definitely being much more careful about pushing food (today I didn't eat much during the day as my stomach was still pretty queasy). Now, on to the doctor's appointment!
After the last few rough months I'm so glad to be able to report some POSITIVE news! My dad and I left for Mass General around noon and made good time, although there was some traffic right around the hospital. Dr. R's office is really great - lots of big windows in the hallway and the waiting room looking out at the Boston skyline. I was taken back pretty quickly, filled out some paperwork, and then Dr. R came in. I had already been in contact with Dr. R via e-mail and given him a pretty extensive history of my GI problems and that ended up being great because he didn't need to sit there and take my history and get a handle on my situation, he already knew about me and knew what he'd like to do. One of the first things he said was that he wanted to look at my GES (gastric emptying scan) results (I brought some records with me and Dr. Berman's office was supposed to send my records up there but of course they didn't - GRR - but I had copies of most of the test results from the records from my ex-PCP). He had looked over my records (what I'd brought him) before he came into the room to see me and saw that my GES was not completely normal, it was borderline. It was reported that I emptied 50 n 90 minutes and that's apparently a tiny bit slow and also he'd like to know how long that SECOND half of food stays in my stomach because it's possible the first half is emptied normally but then it's the second half that has problems. So I have a 3-4 hour GES scheduled at Mass General for next Wednesday (the 19th). He also wants me to have an EGG which will probably be scheduled for the week after the GES.
He talked to me about the possible problems that are going on - he thinks it's my stomach that's the problem and the question is whether it's the first part of my stomach not relaxing (staying contracted as it is when it's empty) to allow food in or the second (bottom) part of my stomach not sending the right signals or contracting in a coordinated way. He's also testing for metabolic disorders to see if there's something else going on. For now it's just blood tests but he may want to do a muscle biopsy at some point. It will be interesting to see if something shows up because I COULD be contributing too much to Lyme disease when some symptoms are really from something else. So, I'm back up there on the 19th for the GES. And probably the Wednesday after that for the EGG. And then I have a follow up scheduled for four weeks from tomorrow but he wants to see me sooner if the tests are done sooner (basically, he wants to see me back as soon as the tests have been done and the results are in). I feel really good about all this and that he's really going to figure things out! Yay for good news!
So that was most of my day there. I had to wait around for a little while to have the labs drawn and then we got stuck in rush hour traffic on the way home and made a quick stop at the grocery store for a few veggies I needed to finish the chicken soup I started yesterday. I was tired from the long day but really wanted to finish my soup so I got all the veggies cut up and bubbling away in the broth I made yesterday and enjoyed a nice bowl of soup for dinner. And I even managed to eat a roll with it, too! I think my stomach is trying to figure out how to deal with the food but I think it's deciding to accept it. I got to talk to my wonderful friend, Diana and do some e-mailing and researching and various things online while watching TV with my dad in the living room (gotta love that wireless internet!). Tomorrow will be a nice resting day for me - nothing planned for a change! I plan to sleep in, get some reading done for my final paper, and possibly watch a movie if I feel up to it (gotta get those Netflix movies watched or it's just wasted money!). I hope you all had a great day today and continue to have a great rest of the week! Thanks so much for stopping by to see me. I'll leave you with two pictures I took of Boston from the hallway outside Dr. R's office:
(If you look closely at the upper right part of this picture you can see the gold-topped capital building)
Wednesday, April 12, 2006 10:57 PM EDT
Letting go of everything that is not you,
All the expectations,
All the beliefs,
And becoming who you are.
Not a better you, but a realer you.
We need to let go
To throw away everything that isn't us
In order to be more whole."
--Rachel Naomi Remen
Hi Everyone,
Today was another tiring day for me and I'm ready to just go to bed and hopefully get some sleep. I had another fairly late night last night of just not feeling like I could fall asleep. So this morning when my alarm went off at 11:30 so I could get up and ready for work I didn't want to get up. But, after hitting the snooze button a few times I did wake up and eventually get up and dressed and all that. Work was pretty boring but I had to do a mailing so that kept me busy. I had to take a Phenergan part way through the afternoon, though, which made it hard to concentrate very well. After work I made a quickish trip over to the grocery store to get stuff to make another batch of chicken soup. So after I got home I got that started (I'm doing it a little differently this time to make it easier to skim the fat off of it - I made stock first and then tomorrow I'll skim the fat off that and combine everything else together to make the soup), had some saltines while my family ate stuff my dad made on the grill outside (it was a beautiful day today), and now I'm just watching some TV and making sure I have everything together for my important GI appointment in Boston tomorrow.
Health-wise today things were kind of up and down. I wasn't able to eat much earlier in the day but now this evening my stomach must be a bit better because I've been snacking on things for much of the evening. I woke up with a bad headache but thankfully it went away through the afternoon after taking some migraine medicine. Tomorrow will probably be a bit of a long day. I have my big GI appointment at Mass General in Boston at 2:00pm so my dad and I are going to leave around noon to hopefully allow enough time if there's traffic or if we get lost. I hope to be back in the late afternoon but I really don't know how long things will take and we may get stuck in rush hour traffic coming home so I really don't know what to expect. I'll be sure to update about the appointment tomorrow evening, though.
Oh, while I was at work I wrote a long post in my blog so if you have a few minutes, go over there and read it. And with that, I'm going to call it a night and get ready for bed. I hope you all had a great day today! Thanks so much for stopping by to see me. Sweet dreams!
Tuesday, April 11, 2006 11:31 PM EDT
--Norton Juster, The Phantom Tollbooth
Hi Everyone,
Today was another long day for me so I'm worn out. But overall it wasn't a bad day. It was gorgeous outside and even though I didn't spend much time actually outside, I did open my curtains and window in my room and loved the fresh air and sunlight. I slept in a bit and loved it since it was my first opportunity to do this since...last Wednesday I think. I also got a chance to take a nice, long, hot shower and I really enjoyed it. And, in honor of the wonderful weather today, I wore my new pants that can roll up into capris and rolled them up so at least the bottom of my legs could enjoy the warmer weather. After accessing my port and getting some things together I went off to teach my theater class. The class went well, although I have to say I'm a bit disappointed in the one boy in the class. He's a great kid and a great actor and I really was looking forward to challenging him and having him work on a bunch of stuff this spring but he's overwhelmed with school stuff (he's in 6th grade - middle school - and the MCAS are really stressful for him). He had a monologue and a scene with the other 6th grader (not at the same school as him, she's in the school system that has a junior high with grades 7 and 8 rather than a middle school so she's still in elementary school) but today he told me that he can't handle the scene. So now he only has a monologue, and it's not the one I originally gave to him (which was a dramatic, challenging one) but a comedic monologue that I gave him the option of switching to a few weeks ago. I'm just disappointed that I don't get the chance to really work with him and that he won't be able to be challenged the way I was hoping he would be. And he keeps leaving class early to go home and do homework or study for tests. I want him to put school first, but I feel he's not getting very much out of the class. Oh well, I'll do what I can and not worry about the rest. If he's happy with what he's doing in the class, that's what's most important right now. And I don't want anyone to be overwhelemed or stressed out about the class. On the other hand, I'm very impressed with some of the other kids in the class and I'm really happy to be able to work with all of them. After class I went off to choir rehearsal which was good but I was really worn out already so it seemed really long and my voice was really weak so I wasn't able to sing that well, but I was there!
Earlier in the day I got a package delivered by Fed Ex (I think, it might have been UPS, but that doesn't really matter). It was a big box and as I was opening it I was trying to think if I'd ordered anything or what it could possibly be. Inside the box was a lot of packing popcorn and a wonderful Easter basket. I didn't know who it was from and of course the note was inside the cellophane so I couldn't find out who it was from without opening it up. I did (after snapping a few pictures) and was touched to find that it's from a wonderful Lyme friend of mine in Rhode Island. We've never met but a while ago she embroidered a beautiful pillowcase for me. We've been e-mailing for a while and I was excited to get to meet her at the conference a few weeks ago but she and her husband were getting over the flu so she didn't end up making it. I was so touched that she put together such a wonderful basket for me. And in with the card and note was an amazing gift card to a restaurant in Newport, RI. It was a card that apparently her brother had given her and she doesn't think she'll use it so she wanted to make sure it didn't go to waste so she didn't buy it specially for me, but it's a very generous card and I'm sure it will go to good use, hopefully for a sibling night sometime (preferably when I'm able to eat a little bit more since the menu at the restaurant looks really great). Here are a few pictures of the basket:
That pig in there is not only a really cute pig, but when you press his hand he dances and sings (and when I say sing, I mean his mouth moves and everything) "My Girl". It's so cute and I love it so much! And of course there's candy in the basket which I will save until I can eat it. It's funny that the basket had a chocolate bunny in it since I (the Easter bunny for my house) decided I wasn't going to give myself a chocolate bunny this year since it would take me forever to be able to eat it (whereas I might be able to handle a Hershey's kiss eaten very slowly). So now I have a chocolate bunny anyway! And since I'm posting pictures, here are a few of my wonderful bath set-up with my computer and space heater for a really enjoyable bathtime:
With that, I'll say goodnight and get ready for bed. I hope you all had a great day today! Thanks so much for stopping by to see me!
Monday, April 10, 2006 10:30 PM EDT
and I shall exist till the end of time, for my being has no end."
-Kahlil Gibran
Hi Everyone,
I'm about to head to bed but wanted to do a quick update. Today was a very long and draining day for me. I didn't get to sleep until around 2am and then this morning I got up at 10:30 (well, my alarm went off there and I woke up for good after a few snoozes). Before going to school I ran over to the post office and to Dr. Berman's (GI) office to sign the release form to get my records sent to Dr. R (GI in Boston) for my appointment on Thursday. Ironically, while I was probably on my way over there the nurse from Dr. Berman's office called my house and left a message wondering if the TPN had been set up! Last I knew, they were supposed to be finding a dietician for me to see to pacify the insurance company but obviously they didn't realize that's what they were supposed to be doing. I won't be going back to Dr. Berman anymore if I can help it. I'm hoping Dr. R will be able to handle everything without another GI closer to me coordinating things. I tried calling Dr. Berman's office when I got home from school (the office was closed but I was going to leave a message) but their voicemailbox was full and has been for the last few weeks so I couldn't even leave a message. Oh well, I'll call tomorrow I guess. So, anyway, after going to Dr. Berman's office I headed up to school. All afternoon I was completely and utterly exhausted because I was really nauseous earlier and took a phenergan which knocks me out pretty well. I got up to school early and slowly made my way across campus (a small campus) to the library and didn't even have the energy to type on the computer or anything - it was pretty bad. I didn't participate in class as much as I usually do because I was so out of it but I did retain some of the stuff we talked about. At this point the class is pretty much over - no class next Monday and then the next two classes are going to be people presenting their final paper subjects to the class and then one final class to hand in our papers and the semester is done! Yikes! I need to get going on my final paper! So I obviously made it home safely but I've just been totally exhausted all evening. I de-accessed tonight and took a bath but it wasn't very warm because my sister took a shower at the same time - grr! I'll have to take a warm shower tomorrow before I re-access. And now I'm ready for bed.
I hope you all had a great day today. Thanks so much for stopping by to see me!
Monday, April 10, 2006 12:46 AM EDT
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time."
--T.S. Eliot
Hi Everyone,
I was just going to not do an update tonight since I'm exhausted and just want to go to bed, but I realized there were some things I wanted to say so I just hope this is coherent! I knew that this morning was going to be an early morning, needing to be at church at 9:30 for choir rehearsal. When my alarm went off at 8:30am all I wanted to do was hit the snooze button or turn the alarm off altogether and roll over and go back to sleep. It didn't help that it was a chilly morning and it was nice and cozy under my covers. But, I didn't hit the snooze or turn the alarm off because I was comitted to going to church (and just too stubborn to decide I needed sleep more). I made it up, got dressed, and got myself off to church on time. And while I was there I remembered why it is that I push myself to make it there, even if it isn't every week. So many people came over to me before the service and asked how I was doing, gave me hugs and support, and just showed me that they're there for me. I am constantly amazed at how my church family has become just that - an extended family. They notice when I'm not in church, even if it's just one Sunday that I don't make it there, and so many people make a point of saying they missed me and ask how I'm doing. When someone asks how I am, usually I answer with the standard, "I'm doing okay" or something like that. But more often than not the person asking me will see through that answer and probe further, asking, "Are you really okay?" So on the Sunday mornings when that alarm goes off way too early and it's just too cozy under the covers to want to venture out into the cold, I push through and get to spend a little time with an extended family who I come to cherish more and more as time goes on.
Now that I've gotten that written (probably not as well written as it would have been a few hours ago but the sentiment is there), just a quick more specific update on my day today. Church was good but after the choir sung and I sat back down I realized that I was just exhausted and could have curled up and fallen asleep right there. I guess I used up all my energy reserve to get up there and sing, but it was worth it, we (the choir) sang really well. After church I came home and spent the afternoon doing this and that, cleaning up my room a bit, watching some TV, and eventually got around to finishing up my homework for class tomorrow. It took me all evening to write the two measly pages of response to one of the readings. But it's done. Probably not as good as my usual writings but good enough. Tomorrow will be a very busy day for me - a few errands, a quick stop at Dr. Berman's (GI) office to sign a release to get my records for my appointment with Dr. R on Thursday, and then up to school for my class. So I better get to bed now so I'll make it through the day! I hope you had a great day today and thanks as always for stopping by to check on me.
Saturday, April 8, 2006 10:13 PM EDT
--Anonymous
Hi Everyone,
As you can hear (I hope) I changed the song on here. I thought it was about time and while I was at work today I heard this great song on the radio - "Better Days" by The Goo Goo Dolls. Here are the lyrics in case you missed them from up towards the top of this page.
And I'll try to make this kind and clear
Just a chance that maybe
We'll find better days
'Cause I don't need boxes wrapped in strings
And designer love and empty things
Just a chance that maybe
We'll find better days
So take these words
And sing out loud
'Cause everyone is forgiven now
'Cause tonight's the night
The world begins again
I need someplace simple where we could live
And something only you can give
And that's faith and trust and peace
While we're alive
And the one poor child who saved this world
And there's ten million more who probably could
If we all just stopped and said a prayer for them
So take these words
And sing out loud
'Cause everyone is forgiven now
'Cause tonight's the night
The world begins again
I wish everyone was loved tonight
And somehow stop this endless fight
Just a chance that maybe
We'll find better days
So take these words
And sing out loud
'Cause everyone is forgiven now
'Cause tonight's the night
The world begins again
'Cause tonight's the night
The world begins again
Today was another fairly good day for me. I had to get up early (well, early for me) to go to work at 10am. Work was very quiet and I spent a while returning e-mails that have been sitting in my inbox for a while and then did some school reading. I still have a lot of reading to do for my final paper but at least I got the reading for class on Monday done, just have to do a quick (2 page) response to one of the readings. After work I made a few quick stops and then came home to rest for the rest of the afternoon. I think I mentioned this before but I have a new pump for my hydration that I hadn't used yet since I hadn't had time to be home for the first infusion in case I had some difficulties with it. So when I got home from work I went ahead and hooked things up with only minor difficulties. Well, I turned the pump on and got it running and was very surprised to discover that this pump makes a lot of noise! My old pump made no noise at all unless it was having problems and then it would beep at me. But this new pump makes loud noises consistently with each pump it makes, if that makes sense. Anyway, I'm not sure if I'm going to be able to stick with this pump because the reason for me having a pump is so I can be hooked up to my saline while out and about, which includes being hooked up while at my college class and while teaching my theater class and the amount of noise that this pump makes would probably be distracting in either of those places not to mention being annoying while out running errands and those kinds of things. So I've sent an e-mail off to my infusion company to ask if the pump can be made to be quiet and, if not, if I can stick with my old pump. But, here's a picture of the new pump and one of the new and old pumps:
Health-wise today things haven't been too bad. My stomach was doing okay and then this evening I started eating saltines. I think I needed more salt or else they just tasted so good that before I knew it I had eaten way more than my stomach can usually handle so I'm dealing with some pain and uncomfortableness now. But I'm sure the extra salt and calories are only a good thing so I'll try to remember that as I sit here wishing I hadn't eaten so much. Tomorrow will be another early morning with choir rehearsal at 9:30am before church since we're singing. The rest of the day after church is free so I'll be able to come home and rest, do some school work, and take it easy in my PJs. I'm going to leave you tonight with one more picture - from the hotel I stayed at last weekend while at the conference (in the lobby there was a pool of water with two swans in it - pretty cool but I felt really bad for the swans).
I hope you all had a great day today! Thanks so much for stopping by to see how I'm doing. Please continue to keep Diana in your thoughts, she's home now but still very worn out and has a ways to go before she'll have recovered.
Friday, April 7, 2006 11:17 PM EDT
Strength needs it far more."
-Madame Swetchine
Hi Everyone,
Today was a pretty good day for me. I slept in as late as I could (until noon) and then had to wake up and get ready for work. I couldn't remember if my boss and I had decided I would work today since I couldn't yesterday (because of my doctor's appointment) but I figured I'd go in anyway and at least catch up on what I've missed since I last worked (before I went away to the conference). Work was fine, nothing too exciting but it was good to catch up on everything. I spent a while cutting out dog ears from felt for the costumes for 101 Dalmations (the bigger young people's theater show this spring that I'm not really involved in for a change). After work I took a detour to Wal-Mart to do some Easter Bunny shopping (I'm the Easter Bunny at my house). It's a big frustrating that this Easter I won't really be able to eat what I normally do, but my Easter basket will still have some candy in it that I can either eat very slowly over the next month or two if I can tolerate it, or else save for a day when I can tolerate it (and I do expect to get to that point again). It's still fun for me to put together the Easter baskets for my brother and sister and to put together a care package for my older sister and brother-in-law in Oregon. After that shopping trip I was really worn out (I did too much) so I took it easy, had some chicken soup (yummy homemade soup!) after skimming the fat off the top. It was easier for me to tolerate without the extra fat and grease so I'm hoping this soup will become another staple food for me and a great way for me to get in some more protein!
Health-wise today things haven't been awful but my stomach has been a bit up and down. I've also been pretty worn out, still not recovered from last weekend and doing too much on top of that. My back has been hurting me quite a bit lately - mostly my left upper back/shoulder area. I think it's all muscular since it gets worse the longer I'm sitting up, especially sitting up in bed and not leaning my back on anything. Other than that, nothing much to report as far as my health goes.
Tomorrow I'll be working (10-2 since it's Saturday - I really hate having to get up early) and hopefully spend most of the time at work doing school stuff. I need to do some major reading for my final paper since the end of the semester is only about a month away! Ahhh! The rest of the day after work is free and I'm looking forward to taking it easy, napping, generally resting and relaxing. That's it for me tonight. I just need to hook up my saline for the night (I have a new pump now that I have to start using but didn't have time before going to work to get it all set up so I'm just infusing via gravity overnight tonight and I'll figure out the pump tomorrow) and then head to bed. Please continue to keep Diana in your thoughts and go leave her some get well wishes as she's still in the hospital. And also head over to Julianna Banana's page and congratulate her on being a cancer survivor!! I hope you all had a great day today and have a great weekend! Thanks so much for stopping by to see me!
Thursday, April 6, 2006 11:18 PM EDT
-Flora Whittemore
Hi Everyone,
Today overall was a pretty good day for me but it was very busy so I'm sure I'll be paying for it tomorrow or this weekend. I had to get up at 8:00am to get ready and leave for my doctor's appointment by 8:30am. I'm definitely not in great shape at that time of the day - I kind of stumble around and have trouble waking up very much. But I managed okay and my dad and I left pretty much on time. My appointment with Dr. Hubbuch went well. I filled her in on my Lyme treatment and other basics of what's been going on with me since I saw her last a year and a half ago. She agreed to be my new PCP which is great so now I don't have to say I don't have a PCP when doctors ask me. She's very worried about my GI problems and inability to eat very much but has some unrealistic expectations about how easy it will be to turn things around. She made some suggestions of things to try eating to get some more good fat into my diet but I'm hesitant to run out and buy a bunch of new things since more often than not I end up not being able to tolerate new things. She also seemed to think I needed to turn things around in the next week! If it were that easy, I certainly would have been better a long time ago! But, it was a good visit overall and I'm happy she's my PCP now. She also did some muscle testing (applied kinesiology) and it showed some big problems in my intestines (if you've never had applied kinesology done on you, it's when you have to push your arm (or leg) against the pressure of the doctor pusing on it as he/she touches different areas or while you hold different things to see if you're sensitive to things or figure out what area of your body is having trouble - I hope I explained that well enough). She put her hand on different parts of my abdomin and pushed on my arm (while I was lying down) and I was okay for other areas but when she moved to my inestinal area I just couldn't push against her arm - it's really weird, it's like there's no muscle strength, but then when she moved to another area it was fine.
Anyway, after the appointment my dad and I swung by Wheelock (my college) so I could pick up some things that came in for me at the library (for my final paper for my class). Then we headed home and after relaxing for a little bit I went out to the pharmacy to fill two scripts - Prilosec (Dr. Hubbuch gave me this one as she thinks the Zantac I'm on isn't enough to help my GI problems) and Neurontin (from the NP at my neurologist's). And while I was waiting for the scripts to be filled I went to the grocery store to get things to make some chicken soup. So I spent the afternoon making soup and then making oatmeal cookies. The soup turned out really good but it still made me feel sick so I'm hoping skimming the fat off the top tomorrow after it's been refridgerated overnight will make it more tolerable for me. It's yummy and I know if I can't tolerate it, other people in my family will enjoy it! And the cookies of course turned out yummy, too, and are fairly tolerable for me. Of course all that time in the kitchen was nice but really wore me out. At one point while my mom and dad were both in the kitchen area my mom said I looked really pale and had really dark circles under my eyes and wanted me to sit down. I wasn't feeling too bad at that point but it kind of surprised me that I was noticibly pale. Apparently I'm pale a lot lately but I don't realize it (it's hard to tell those things when looking in the mirror). *Sigh* Oh well, hopefully I'll start feeling better soon and I'm sure the GI appointment next Thursday will be the start of some big improvements, or at least some answers.
Well, that's about it for me tonight. I'm just talking to my great friend, Tara right now and I'll be heading to bed soon. Please keep my other awesome friend, Diana in your thoughts as she's in the hospital and dealing with a serious infection. I hope you all had a great day today! Thanks so much for stopping by to see me!
Wednesday, April 5, 2006 10:37 PM EDT
--Rabindranath Tagore
Hi Everyone,
Today was a pretty good, although not very productive, day for me. I slept in a lot and was woken up a little after 1:00pm by a call on my cell phone from my boss. Since it was pretty late, I opted to stay awake rather than curling back up in bed and sleeping until who knows when. I spent a while doing stuff online and watching some TV and generally taking it easy. In the later afternoon I took a very nice, very long bath (yay for my de-accessed day!) and fully enjoyed soaking in the tub and watching an episode of Grey's Anatomy while doing so. I did get a tiny bit of school reading done after that but not anywhere near what I was hoping to do today. I just re-accessed Winnie (my port) and I'm hooked up to my fluids overnight tonight. I have an appointment with Dr. H (hopefully my new PCP) at 10:00am tomorrow which means leaving at 8:30am so I'm going to bed soon. My dad will be driving me up to the appointment (I hate feeling guilty about needing someone to drive me but it really will be better than me driving myself). Today was a pretty good eating day for me but I'm feeling sick now from overdoing it in that department. Sometimes I just start eating something and it tastes so good so I eat more than I should and wind up feeling sicker than if I'd been smarter and stopped eating earlier. But, oh well, nothing I can do about it now.
I wanted to share some kind of poetry or something like that to break up the monotony of just writing about my day to day life. So, I would like to share with you a poem by Oriah Mountain Dreamer.
I have heard it all my life,
A voice calling a name I recognized as my own.
Sometimes it comes as a soft-bellied whisper.
Sometimes it holds an edge of urgency.
But always it says: Wake up my love. You are walking asleep.
There's no safety in that!
Remember what you are and let this knowing
take you home to the Beloved with every breath.
Hold tenderly who you are and let a deeper knowing
colour the shape of your humanness.
There is no where to go. What you are looking for is right here.
Open the fist clenched in wanting and see what you already hold in your hand.
There is no waiting for something to happen,
no point in the future to get to.
All you have ever longed for is here in this moment, right now.
You are wearing yourself out with all this searching.
Come home and rest.
How much longer can you live like this?
Your hungry spirit is gaunt, your heart stumbles. All this trying.
Give it up!
Let yourself be one of the God-mad,
faithful only to the Beauty you are.
Let the Lover pull you to your feet and hold you close,
dancing even when fear urges you to sit this one out.
Remember- there is one word you are here to say with your whole being.
When it finds you, give your life to it. Don't be tight-lipped and stingy.
Spend yourself completely on the saying.
Be one word in this great love poem we are writing together.
Thanks so much for stopping by to see me. I hope you're all having a great week so far!
Tuesday, April 4, 2006 10:41 PM EDT
it is not a thing to be waited for, it is a thing to be achieved."
--William Jennings Bryan
Hi Everyone,
I'm so exhausted and just want to go to bed but wanted to put up a quick update while I'm waiting for my saline to finish infusing. This morning I definitely slept in ('til about 12:30pm). I did stuff online and got my theater class stuff ready before getting dressed and ready to go teach the class. The kids were pretty good today and they're doing work on their monologues and scenes so that makes me happy. After the class I went to choir rehearsal, which I probably shouldn't have since I was so exhausted but we're singing this Sunday so I figured I should go. That went okay except that I was pretty out of it and just wanted to go to sleep. I did get a chance to see House when I got home which was pretty good this week. Now I'm just ready to go to bed. Health-wise today was rocky but not horrible. My stomach held up pretty well with Zofran and Phenergan to help. I ate semi-okay - pretty average for me.
I'm going to stop there since my pump is beeping at me that it's done. Tomorrow is a resting/bath day for me - yay for baths! I'm planning on concentrating on school work for the day. I hope you all had a good day today! Thanks for stopping by to see how I'm doing. Please continue to keep Diana in your thoughts - she's feeling a little better but still pretty sick in the hospital.
Monday, April 3, 2006 11:15 PM EDT
comes home and rests his head on his old, familiar pillow."
--Lin Yutang
Hi Everyone,
Just wanted to let you all know that I'm home safe and sound but a little worse for the wear. I missed breakfast this morning because I didn't wake up until 10:30am but I didn't care about breakfast, I just nibbled on dry cereal and that was even a bit much for me (I'm dealing with that "feel like I'm going to throw up" feeling right now after trying to eat too much when I got home). My flight was on time and easy - I even got some school work done during the flight. My mom and younger sister (who drove) picked me up at the airport and when I got home I unpacked and took a much needed nap. And now I'm going to get ready for bed and try to get some sleep. This week will be spent resting and doing school work since I don't have very long before the end of the semester when my final paper is due (AHHH!). I also have an appointment with Dr. Hubbuch, my last Lyme doctor who I'm hoping will be my new PCP, on Thursday morning (why on earth did I decide to take a morning appointment?) and I may very well be working here and there in addition to my theater class tomorrow.
Okay, feeling sick, going to go take some Zofran and hope it passes soon and doesn't decide to actually progress to a night of throwing up (*knock on wood*). I hope you all had a great Monday! Thanks for coming by to see me. Please keep my friend Diana in your thoughts - she's in the hospital with what looks like an infection in her new port and she could use some good energy sent her way.
Sunday, April 2, 2006 9:40 PM EDT
Unreasonable people attempt to adapt the world to themselves.
All progress, therefore, depends on unreasonable people."
-George Bernard Shaw
Hi Everyone,
I'm exhausted yet again but I've made it through the weekend without any major problems coming up so that's a relief. This morning started really early, and it felt even earlier because of turing the clocks ahead (my cell phone didn't reset itself like it was supposed to do last night or early this morning, instead it decided to do it in the middle of the afternoon - weird). Mary (my roommate here at the hotel) and I headed off to the conference hotel early because she wanted to go to a book discussion at 8am. So while she did that I stayed in the lobby and went online (gotta love a laptop with wireless internet and being able to get wireless internet so many places!) until the main talks started at 9am. The first talk was about the co-infections of Lyme disease by Dr. Jemsek from North Carolina. It was interesting and he's someone I'd never heard speak before so that was cool. Then the next session was probably the highlight of the day (for me anyway) - we were shown a 30-minute work in progress section of Under Our Skin (to see a shorter clip of it available online, go here). It really was awesome and I'm looking forward to seeing the finished project which should be in about a year. And I was in the part we were shown today! Granted, I think I only said 4 words (I was listing off some of my symptoms) but it was cool to see me up there for those 2 seconds. The finished product will be 90-minutes long so it's very possible I'm in some other parts of it, too, especially since they were so interested in interviewing me with a follow-up this year. (If you can, I strongly urge you to contribute to the film.) After that, another doctor I haven't seen speak before talked about immunology which was interesting but very technical (I felt like I was back in biology class for part of it). Then a break for lunch (I managed to eat some tofu from the buffet and took the opportunity to load it up with salt as I'm sure I haven't been getting enough in since the start of all the GI problems) followed by another talk by the "other" Dr. Bock (my Dr. Bock's brother). His talk today was a little easier to follow than the one he gave yesterday, but still pretty technical. Then there was another Q & A session and the end of the conference. After saying goodbye to a few people I knew and swinging by Whole Foods so Mary could get something for her dinner, we came back to our hotel.
I'm really exhausted but I've held up pretty well this weekend. Still, I think I will have a crash coming on when I get home and I'll have to take it very easy this week and try to recover the best I can. And of course I have to make sure I have enough energy for the trip back home, but that shouldn't be too bad (I just hope my flight isn't delayed at all). Tomorrow I can also sleep in more than I've been able to this weekend. I just have to get downstairs by 9:30 to grab whatever I might want for breakfast, although even missing that wouldn't be bad since I have so much food up here in the room. I'd probably just grab some juice and perhaps decide to try something else down there like toast or scrambled eggbeaters (I'm not sure that tomorrow is really a day to try out new foods, though, since I don't want to be sick on the flight home).
Thanks so much for stopping by to see how I'm doing. I hope you had a great weekend! Please send some good thoughts to my friend, Diana who is in the hospital with an infection in her new port. She could use some good wishes so if you have a minute, go visit her site and let her know you're thinking about her. Sweet dreams!
Saturday, April 1, 2006 8:31 PM EST
Now is the time to understand more, so that we may fear less."
--Marie Curie
Hi Everyone,
First of all, HAPPY APRIL! I can't believe it's already April - where in the world did March go?
Today was another exhausting day so this will be short. Today's sessions at the Hope to Heal Lyme Conference were interesting but towards the end of the day (well, more like after the lunch break) I started drooping and wasn't absorbing much of what was being said. This morning the first session was Dr. Burrascano giving an overview of Lyme disease, including some information on Lyme disease and pregnancy - how Lyme can be passed from mother to baby in utero but if the mother is on treatment all through the pregnancy, there's generally a good outcome. Later in the morning (I'm skipping around a bit here) was Dr. Corson (my first time hearing her speak) talking about Lyme disease and children, which was very interesting, but unfortunately I missed the first half of that. Open Eye Pictures is here again this year interviewing people for their documentary, Under Our Skin. I was interviewed for it at this conference last year and the producer, Andy, came over to me during a morning break and asked how I'm doing and said he'd like to interview me again with an update of how the last year has been for me. So, during the first half of Dr. Corson's talk I was being interviewed which was cool. That must mean that my interview from last year is in the documentary already. They're going to be showing part of the documentary (what they have finished) tomorrow morning and I'm looking forward to that. (If you'd like to see a short clip of it available online, go here.) Then after Dr. Corson's talk was Dr. Jones, the pediatric Lyme doctor (the best, and possibly only one in the country). He didn't talk but showed a video of a three-part story done on the news in Westchester county New York about one of his Lyme kids. Then it was lunch and after that I was pretty out of it. But there was a talk by Dr. Steve Bock (my Dr. Bock's brother) which was very technical and I didn't absorb much at all of what he was saying (I really should have gone and lay down during his talk when I realized it was all zooming right by me). And the last thing of the day was a Q & A panel with four of the doctors who spoke today which was good but didn't really cover anything new and of interest to me.
Througout the day I did see and talk a little bit to some people I know who are at this conference, too. It's nice to see familiar faces among the crowd. After everything was over I was supposed to meet up with a group of people from Lymenet (well, the flash discussion board on Lymenet) but I think most of them forgot or didn't know I was the one they were looking for. It's tricky only knowing people online and not knowing what they look like. I could only hope that some people would recognize me from reading this page. So after all that I only stuck around for a little bit before heading back to my hotel (with a quick stop at Whole Foods so Mary (my roommate) could get a few things). And now I'm just ready to go to bed, which I should probably do soon since tomorrow will be another very early morning and made even earlier by the daylight savings time change. I hope tomorrow is another interesting day and that I pace myself and take a break to lie down if I need to (which I wish I had done today). I managed to eat some vegetable soup they had available for lunch so I didn't have to try to manage with what I had with me (although I could have managed fine). And tonight I had a yummy miso soup bowl that I'm hoping will be easy on my stomach (it seems to be so far). Health-wise today wasn't that bad, not as bad as it could have been. My nausea was kept under control pretty well with my usual morning Zofran and then a Phenergan a little later on and I didn't have too much belly pain. I do have some of those sticky heat-wraps so I'm going to use one on my belly tomorrow and see if that helps. The biggest issue for me today (aside from the exhaustion in the afternoon) was my left shoulder/back hurting a lot. I think it's muscular since it hurts more when I'm sitting up for too long and considering the amount of sitting I did today, I'm surprised it wasn't worse.
Well, that's it for me tonight. I wrote a bit more than I was expecting but I guess I had more to say than I realized! I hope you all had a great day today and continue to have a good weekend. Thanks so much for stopping by to see me! I'll update tomorrow night with the goings on from the day of talks.
Friday, March 31, 2006 8:30 PM EST
it is not a thing to be waited for, it is a thing to be achieved."
--William Jennings Bryan
Hi Everyone,
I'm exhausted but wanted to put up a quick update tonight. I made it down to Virginia for the Hope to Heal Lyme Conference - I'm typing this from the pull out couch in my hotel room. I had a rough night of sleep last night so I'm definitely feeling worse because of that. I didn't get to sleep until late (or early morning) and then woke up in the middle of the night with horrible abdominal pain. It felt like a gallbladder attack but not exactly like it. It was really bad and I was so worried that it wasn't going to let up and I'd have to miss the conference this weekend because of it, but it went away after about 15 minutes (or that's how long it felt like at least) and I was able to go back to sleep. I hope it doesn't happen. I made it up and dressed and out of the house on time this morning. Things at the airport went smoothly until the flight was delayed. We ended up leaving about an hour and a half late which wasn't awful but I definitely didn't need complications of any kind. My roommate met me at the airport on the other end, we stopped at the conference hotel to get our registration packets, and then to Whole Foods to pick up some things before checking into our hotel. And that's where I am now - completely exhausted and just wanting to go to bed. But I'm trying to get some soup into me since I ate next to nothing all day (my stomach was off all day and I was having cramping pain, but it's better now). So I'm going to get in my PJs, pull out my bed (I'm sleeping on the pull out couch in the suite), and rest while I get some food in. And I may fall asleep soon, too, but that's okay. My roommate is out meeting up with someone but she'll be back in a bit.
That's it. I'll try to update through the weekend. (Obviously I have internet access in my room.) I hope you all had a great week and have a great weekend! Thanks for stopping by to see me!
Thursday, March 30, 2006 10:56 PM EST
--Dr. Seuss
Hi everyone,
Today has been one of those days that seems so long and so short at the same time - just kind of makes me feel a bit off balance. But it wasn't a bad day, so that's not why it seemed long and short at least. I had to wake up this morning to unhook my hydration (I ran it overnight last night to give my back a break from carrying my backpack - I've been having back pain lately) and then went back to sleep. I hadn't gotten to sleep until late last night (or early this morning, depending on how you look at it) - stupid insomnia rearing it's head.
But eventually I woke up and knew I had to be up for good since I had a neurologist appointment at 1:30 (I know, it seems crazy that an appointment that late in the day would cut into my sleep but considering the time it takes to get there and get ready and check my e-mail and all that, it does take a bit of extra time). The neurologist appointment went well. It wasn't with the neuro himself but with the NP at the office who I really like. She jokes around with me and it's just nice to have a her sit there and talk to me and realize that I know a lot and have dealt with a lot and respect me for that. I have the okay to go off the topamax (which I had actually already weaned myself off of, but I just told her I'd had to back off of it since I wasn't sure if she'd be okay with me stopping it completely without talking to her first). Instead of the topamax I'll be upping my dose of neurontin which I usually only take to help me sleep but will hopefully help with my migraines, too. I'll be going up slowly and trying to minimize the negative affects of it with the slow increases and really pinpoint the best dosage for me. It will be trial and error but it's basically in my hands to figure out what works best. Then I stopped at the natural foods store on the way home and picked up a few things, hopefully some foods that will prove to be tolerable as well as some peppermint tea and some more 5-HTP (to help me get to sleep) which I'm hoping will help my insomnia (I've been out of it for a while). And I finished up my packing (well, all I can finish today) and I've been relaxing and took a shower so I'll be nice and clean for the weekend (and hopefully avoid having to shower while I'm away since showering with Winnie (my port) accessed in showers without hand-held showerheads is challenging at best).
Today was a beautiful day - in the 60's and gorgeous blue sky. My feet have officially broken out and made it into flip-flops today! So, in honor of that, I painted my toenails tonight (of course that was after wearing the flip flops for the day, but they'll just be ready for spring now) and I'm bringing my birkenstock sandals to Virginia this weekend. It's supposed to be in the 70's down there and I'm looking forward to not wearing a lot of layers, but I'll be inside so much that I'm sure a sweatshirt will be necessary a lot of the time. Health-wise today wasn't too bad but I'm feeling nauseous tonight (I think I overdid it with solid foods this evening, even though I really didn't eat that much) and feel a headache coming on. I hope that I can get to bed before the headache gets worse and just sleep it off. Nothing else really to report. Tomorrow won't be a really early day considering I'm travelling - my flight is out of Boston at 1:30pm so I'll be leaving around 10:30am to head up there (my dad's driving me up). I'm bringing my computer with me and I'll have internet access so I'll try to put up at least short updates while I'm gone. I'm hoping this weekend will be a lot of fun, very informative, and that I'll hold up well. I have my food all packed up so I'll have my staples at least if I can't eat anything else while I'm down there.
Thanks so much for stopping by to see me! I hope you all had a great day today and have a great Friday tomorrow!
Wednesday, March 29, 2006 10:29 PM EST
you must find things to believe in yourself,
for a life without faith in something is too narrow a space to live."
--George E. Woodberry
Hi Everyone,
Today wasn't a particularly exciting day but that made it an okay day for me - very low key. I slept in a bit, then did some stuff online before getting up and starting on my tasks for the day. I was pretty productive - got my laundry done and got packed most of the way for this weekend. I still have some more packing to do tomorrow and a few more errands to run but for the most part I'm ready. And tonight I went out for a "sibling night" with my brother and sister. We went to Uno's and I managed pretty well with their veggie soup (more of a minestrone soup than just a plain veggie soup) but I ate too much of it and now I'm dealing with some nausea from it. But it's not too bad.
Now, for some really good news for a change. I got an e-mail back from the GI dr. (Dr. R) in Boston and he said to call his office and make an appointment. So I called and got an appointment for April 13th!! That's two weeks from tomorrow!! It's just amazing that the wait is so short! Dr. R said in his e-mail that he'll probably want to do an EGG on me and that I just need to get as many of my records together as possible before I see him. So that's great news and I'm just so relieved about the appointment being so soon. It makes me much less stressed about getting the TPN set up since the TPN was mainly to help me make it to the specialist appointment so now I think I'd rather wait and not start TPN before I see Dr. R and see what he thinks would be best for me to do. It's interesting that my appointment with him just happens to fall on a Thursday because that means I have doctor's appointments every Thursday for the next four weeks! I have a neurologist appointment tomorrow, then Dr. H (hopefully my new PCP) next Thursday, then Dr. R the next Thursday and Dr. Bock the next Thursday (and Dr. Berman that Friday). It's going to become my "Doctor Day", lol.
Other than that, health-wise today was an okay day. Nothing awful, although I had what I think was a low blood sugar issue this afternoon/evening. I got some gatorade in, though, and it got better. Now I'm just worn out. Tomorrow I have an appointment with the nurse practitioner at my neurologist's and then just need to run a few errands on the way home - mainly a quick stop at the natural food store to pick up a few things. And then I have to finish packing and make sure everything is in order for me to leave on Friday. Hopefully I'll hold up well tomorrow and get a chance to rest up for the trip!
That's it for me for tonight. I hope you all had a great day today and thanks so much for stopping in to see me!
Tuesday, March 28, 2006 11:26 PM EST
And to make an end is to make a beginning.
The end is where we start from."
-T. S. Eliot
Hi Everyone,
I'm really tired and want to go to bed so this will probably be brief. This morning I kept getting woken up by phone calls - first from the library at school about me trying to get some articles and books from other libraries (apparently I'm not in the library system which is surprising, so they were trying to figure things out for me) and then a call from my neurologist's office confirming my appointment on Thursday. After each call I was able to get back to sleep and I slept way in - almost to 1:00pm. This would be kind of surprising except for the fact that I haven't gotten to sleep until about 2am for the past few nights. I did some stuff online for a little while before getting up and ready to go off and teach my theater class (I had one of the kids coming in early to work on her monologue since she had to miss class for soccer practice - those busy kids!). The class went well, although we were missing two of the kids so we didn't do as much as I was hoping to (but that left more opportunity for playing games which I know the kids like). After class I decided not to go to choir rehearsal but to run a few quick errands instead - I think the errands were a bit much for me and I came home totally exhausted. But tomorrow is a completely free day for me so I'll be resting up (and doing my laundry and maybe baking some muffins if I'm up to it). Health-wise today wasn't one of my best days but it wasn't that horrible considering it started with me waking up with a bad headache. My stomach wasn't very good so I took it easy with eating. Hopefully tomorrow will be a nice, relaxing day. And that's it for me for tonight, sorry it's not very interesting!
Thanks so much for stopping by to see how I'm doing. I hope you all had a great day today and continue to have a good week.
Monday, March 27, 2006 11:41 PM EST
--Mahatma Gandhi
Hi Everyone,
Since today was a school day for me, I thought the above quote was appropriate. I really do enjoy school, being there in the classroom expanding my mind. I felt a little out of it today at school, though, and didn't talk much at all in class (which I hope wasn't too obvious, although with only six of us in the class I'm sure my teacher noticed). My dad drove me up to school this afternoon and I'm sure that helped me manage better through the afternoon - I'm so worn out just by the trip up to school and back that I'm really glad I didn't try to drive myself. Before a meeting I had scheduled with my teacher (to discuss my final paper - can it already be that close to the end of the semester?), I had to run all over campus trying to track down my course selection packet. I looked where they used to be - in a box in the student center and you could just go find your envelope with your name on it and take it. But they weren't there. So I poked my head into the student development office and was told it was put in my mailbox, but I wasn't sure if I have a mailbox (I don't have a key so even if I do have a mailbox, I wouldn't be able to get it) so I went over to the Registrar. They told me to go down to the mail room. The mail room guy checked his list and I apparently don't have a mailbox on campus so it was back to the Registrar I went and they (the girl working there) went across the room and found my course selection packet. Now how hard would that have been to check before sending me over to the mail room?? It would have saved ME a bit of walking. But I got the packet, I went up to the disability services office but the coordinator wasn't there so I went over to my meeting with my teacher. And then class. It was okay in the end but a lot of walking for me (so much for conserving my energy today).
Health-wise today was another not-so-good tummy day. I had some pretty bad pain before leaving for school that continued on the ride up to school, but it went away after a while (and I wasn't eating anything to make it worse). So after all day not eating, I ate some things this evening and now the pain is back but not as bad as earlier. *Sigh* I guess some days are just harder and I need to force myself to stick with easier to eat things so I don't wind up feeling sicker. My food intake needs to get a little better but it's so hard during days like these where I'm afraid to put much of anything in my stomach. Hopefully this weekend I won't have very much trouble. I'm hoping to try out some muffin recipes to have something else portable to take with me to the conference (although I have enough other things that I'd probably be okay without muffins). I just don't know how well I'll tolerate them so it's hard to feel like expending the energy on baking, but I think it's time to try out a new recipe anyway so I'll just plan well for baking. I already do have most of my week planned out strategically for when will be best to run some errands (tomorrow before theater class and on the way back from a neurologist appointment on Thursday) and do laundry (Wednesday) and pack (mostly Thursday but probably starting on Wednesday). Tomorrow's agenda is a few quick errands (pick up some perscriptions and a few other things) and then teaching my theater class and possibly choir rehearsal if I don't think it will wear me out too much more (I hate to miss rehearsal and seeing everyone). I plan on backing off of the food tomorrow and trying to stick to mostly liquids and mushy food (i.e. broth, soup, and baby food).
I'm going to head to bed now. Thanks so much for stopping by to see how I'm doing! I hope you all had a great day today!
Sunday, March 26, 2006 11:23 PM EST
--City of Angels
Hi Everyone,
Today overall was an okay day. I opted not to go to church this morning when my alarm went off and ended up sleeping until almost noon so I'm glad I didn't push myself to get up. I spent a while resting in bed and checking my e-mail, etc. and after a while got working on some school work. Nothing too exciting. I got a nice long, relaxing bath (with my wonderful DVD set up so I watched an episode from the first season of Grey's Anatomy) and it's just so nice to feel nice and clean. I finished my homework and re-accessed Winnie (my port) and now I'm ready to hook up my saline to run overnight and head to bed. Really today wasn't exciting at all but that's okay by me.
Health-wise today things weren't great - I've been having a lot of back pain lately which isn't fun (but I'm 99% sure it's muscular and nothing serious) but I'm handling it okay, I just have to try to find a comfortable way to sit in bed (I know my posture while sitting up in bed is probably part of the reason for the pain). I've also had some more abdominal pain today but I'm handling that, too. I was on the cautious side with food today and I think I'll try a few more days of that to see if it helps the pain subside. Nothing very interesting to report, though.
Tomorrow is my school day and since I'm getting to the point where I don't necessarily trust myself driving long distances (like up to school) my dad is going to drive me up and find someplace to hang out and do work or something. I feel bad making him take me but I need to get over that and realize that I just need help right now. And the up side of it is that I'll get to spend a little time with my dad on the ride up and back. I hope to sleep in tomorrow, too (I have the intention of enforcing a good sleep pattern this week to try to gather as much energy as possible for the conference next weekend). So I better get myself ready for bed and try to get to sleep soon! Thanks so much for stopping by to see me and thanks to everyone who has been signing my guestbook - I love reading the messages in there. I hope you all had a great weekend!
Saturday, March 25, 2006 11:59 PM EST
--Martin Luther King Jr.
Hi Everyone,
Just a quick update tonight. Today was a pretty good day overall - I had a get together with three of my great Lymie friends Barb, Leigh, and Janette. We met up at a little restaurant just outside Providence and had a great time chatting and catching up and just understanding what everyone else is going through. It's so nice to have friends like that. The drive there and back was a bit much for me, especially with the addition of a bad traffic jam on the highway going there (there was a bad car accident from the looks of things). After getting home I got into my PJs and crawled into bed with my computer and have just been resting and doing stuff online. I'm trying to make sure I have everything in order for next weekend's retreat in Virginia so I've been working on my packing list, lists of my meds and doctors, making sure my medicalert information is up to date, etc. And I e-mailed with Mary, the woman I'll be rooming with, and finalized things and alerted her to how things are going for me so she's aware that I'll need her to kind of look out for me (which I'm sure she would have done anyway, being the good mom that she is). Tomorrow the only thing on my agenda is church if I'm up to it, but I'm on the fence about whether to push to go. I'll wait until my alarm goes off in the morning and decide based on whether I want to get up or not. And then I have to do major school work, too, since this week I've gotten nothing done in that area because I've been working and not felt up to doing much in the area of school. Hopefully tomorrow I'll be productive.
Well, I'm feeling sick and need to get to bed so I'll end there. Thanks so much for stopping by to see how I'm doing. I hope you're all having a good weekend so far!
Friday, March 24, 2006 11:59 PM EST
Angry hearts can't remember why they even try..."
--Lori McKenna
Hi Everyone,
Well, today was not a very good day for me. At work I got a call from the nurse at Dr. Berman's office basically saying what I already knew from last night - my insurance is requiring that I see a dietician and be evaluated by then for the TPN reconsideration. Then I got a call back from Dr. Berman (I had left a message for him) and had a very quick conversation with him - told him I stopped the Reglan (he didn't have anything else to give me, but I will call on Monday and ask about another specific medicine I know about), filled him in on some of the insurance stuff, and told him that if the TPN doesn't get set up soon I'm afraid I'm going to need to be admitted to the hospital. He said he could help me with that. Somehow the conversation upset me because he didn't have anything to offer me and was so rushed and didn't say he'd admit me now or seem as concerned as I think he ought to be at this point.
So after the conversation (keep in mind I was at work) I went into the bathroom and just started crying because I'm so exhausted and can't handle all this anymore. It's just too much. But I got it together a bit after a while and talked to my mom on the phone later and we decided I should probably be admitted now to hopefully start TPN in the hospital. So we tried getting in touch with Dr. Berman but he was gone and the office closed before we could do anything about it! So when I got home I called the clinic to see if there was an emergency number for him, they told me to call the hospital but Dr. Berman is signed out until Monday so he must be away for the weekend, and I ended up talking to the on call GI doctor who is from the same practice as Dr. Berman. But the conversation was pretty upsetting for me because he didn't have anything to offer me and wasn't very nice about it. Since I'm already getting IV hydration at home and I'm not throwing up he didn't see why I'd need to be admitted! He said they NEVER admit for TPN and it was just an upsetting conversation because he obviously doesn't know anything about me or my case except what I was able to tell him over the phone and he wasn't concerned at all. So my choices were to go to the ER and hope to be admitted or just wait until Monday and talk to Dr. Berman. So I went with the latter and I'm still home and I've come to terms with the fact that I'm not getting any help this weekend.
I'm going to call Dr. Berman on Monday and talk to him about all this, see what he thinks about admitting me (hopefully make a plan for when to admit me and stuff like that), and also bring up the possibility of putting in a temporary NJ tube to try giving me some feeds that way since the TPN isn't happening right now and may not ever happen. At least if I can tolerate the NJ feeds it would help me get some energy back and stabalize me a bit, but I don't know if he'd be willing to do that for me. We shall see...I just need something to get me through for a month or so until I see the GI dr. in Boston. While at work I also had some issues with some pretty bad nausea and having a few dry heave type things, feeling like I was going to throw up, which sucked and I spent a little while in the bathroom just wishing I WOULD throw up and get some relief. Eventually it got better but I need to try to limit how much I eat at once, I guess (I had just eaten too many Kix).
I'm really exhausted and liable to fall asleep before I post this so I'm going to stop there and maybe add more in the morning. My plan for the weekend is to rest, eat and drink what I can, and hope that Monday and next week is better for me. Tomorrow I'm meeting some Lymie friends for lunch and a little semi-support group thing (we're trying to get together every month just to talk and catch up). We're meeting at a place that has miso soup so I should be okay having that for lunch as long as it's not full of all kinds of stuff (and even so, it's my best bet!). I hope you all have had a good week. Thanks for stopping by to see me!
Thursday, March 23, 2006 11:37 PM EST
--Martin Luther King, Jr.
Hi Everyone,
I am very frustrated so be warned, this might be a bit of a vent tonight. My insurance company denied coverage of the TPN. I found out right after I had talked to the nutritionist at Coram (infusion company) and gotten all my questions about starting it at home versus in the hospital answered. I was at work and I got a call from my dad relaying a message from Dr. Berman's office (GI) saying they had heard from Coram about the denial. I called to try to talk to the nurse at Dr. Berman's office to get more detail, but just had to leave a message and didn't hear back from her. So when I got home my mom called my insurance company and got some more answers. Apparently the insurance company's doctor looked at my labs and my x-ray report (which I'm guessing means my GI series) and determined that I don't need TPN. I don't understand how they can do that! The person my mom was talking to told her that I'd only lost 14 lbs. (which is what I lost between my two visits with Dr. Berman and he hadn't seen me before then so he didn't have my starting, "normal" weight recorded) but my mom said that I've lost 25 lbs. and that I'm bordering on being hospitalized. They said that they are going to require me to see a registered dietician and have them write a report saying I need TPN! Apparently a GI doctor ordering it isn't good enough!!
I'm just upset and scared about what will happen while we try to get this overturned. Dr. Berman's nurse was starting on getting things together to send to the insurance company but she's not in the office tomorrow so it's going to be a while. I am going to call to talk to Dr. Berman tomorrow about all this (and about having to stop Reglan). I am prepared to be hospitalized to be started on TPN and I think if the denial isn't overturned within a week, I will be in the hospital and won't have a choice about it. My hope is that I'll make it through next week and to the Lyme conference I'm planning to go to next weekend (leaving the 31st and coming home April 3rd) and then I'll go into the hospital and do whatever needs to be done, but if I have any say in the matter I will make it to the conference. I just don't understand how insurance companies can do things like this - I'm just too expensive for them and they want to make everything as difficult as possible so I'll hopefully give up! But we're not giving up and we're not going anywhere, so if they don't approve the TPN at home, I'll be in the hospital for it and they'll end up paying a whole heck of a lot more.
Other than all that happening today, I worked, made an appointment with my old Lyme doctor who is just outside Boston and I'm hoping she'll be my new PCP, and came home and rested. Now I'm talking to some friends and planning on going to bed soon. Health-wise today things haven't been great. I tried a new protein drink thing I got yesterday (it's an organic soy chai protein drink thing) and it actually tastes good but within a minute or two of taking a sip of it to try it, I felt like I was going to throw up (much worse than it is for me usually). I'm going to stop writing now 'cause I'm just tired and need to finish this novel. Thanks for listening! And thanks for all the support and guestbook entries. I'd appreciate it if you could keep me in your thoughts (I don't like asking for thoughts for myself but in this case, I can use all the good thoughts I can get!). I hope you all had a great day today and have a great Friday tomorrow.
Wednesday, March 22, 2006 11:59 PM EST
Rising to a very new somewhere.
Coming up for air,
On the last breath around..."
--Patty Larkin
Hi Everyone,
Another quick update. TPN didn't happen again today. I hadn't heard from the nurse yesterday as I was told I should and when it got to be late-ish morning (around 10:30) with still no word I called the nutritionist at Coram (she's my only contact about the TPN right now). She was surprised I hadn't heard from the nurse, she checked with admissions and said they are apparently awaiting insurance approval! We were both under the impression that had already happened, but I guess not. So now there's a hold-up of indeterminite length and there's no way of knowing that they will approve it in the end without a fight which I don't have the time or energy to do. If the TPN is denied by my insurance company, I will be in the hospital soon, I have no doubt about it and I'm ready for it. The TPN is partially to keep me OUT of the hospital. I'm frustrated but taking this opportunity to look into starting TPN at home versus in the hospital and making sure everything is being done correctly and I'm being monitored well. So I'll call Coram tomorrow and talk to a nurse and ask a bunch of questions to see how they handle people starting TPN at home.
This afternoon I worked just for an hour and then ran a few errands (bank, picked up a prescription, went to the grocery store). While at the grocery store I looked all throughout it for new things I might be able to tolerate that could add more calories while waiting for the TPN because right now I can't afford to lose anymore weight. I found a few things but nothing that will make that much of a difference but I'll do everything I can to get in the extra calories. I'm scared and frustrated and just so tired. Tonight I went out to dinner with my brother and sister for a sibling night - I'm in it for the socializing, not the food obviously. I managed to eat part of a plain baked potato but felt sick for a while afterwards. And since then I've been resting, talked to Diana for a little while, and answered some e-mails. Now I'm off to bed. Hopefully tomorrow will bring some progress.
Thanks for stopping by to see how I'm doing. I wish you all sweet dreams and a peaceful, easy day tomorrow.
Wednesday, March 22, 2006 11:59 AM EST
Listen to the DON'TS.
Listen to the SHOULDN'TS
The IMPOSSIBLES, the WON'TS.
Listen to the NEVER HAVES,
Then listen close to me -
Anything can happen, child,
ANYTHING can be."
--Shel Silverstein
Hi Everyone,
Quick update. The TPN didn't happen today because by the time Coram (infusion company) got the lab results they still had to get everything okayed a final time by Dr. Berman and it would have been too late to get it all made up and started by then. Sooooo it should happen tomorrow. I have a lot of questions for the nurse because it's very possible I'm not going to be monitored well enough while on the TPN. I'll do what I have to do to make sure I'm getting what I need and being monitored appropriately and seeing Dr. Berman often enough and doing what needs to be done. I worked today - nothing exciting there. My theater class went well and choir rehearsal was good. Health-wise, nothing much to report except that today wasn't a good stomach or eating day for me. I'm also having back pain which is annoying but I'm going to call and try to get in with my mom's chiropractor for an appointment and a massage to hopefully help with that. Tomorrow's agenda is (hopefully) a nursing visit to start the TPN, into work for an hour, resting, and sibling night with my brother and sister.
Please keep Hunter and her family in your thoughts and prayers as they just found out that she has relapsed. I hope you all had a good day today and continue to have a good week. Sweet dreams!
Monday, March 20, 2006 11:01 PM EST
"The first day of spring is one thing, and the first spring day is another.
The difference between them is sometimes as great as a month."
- Henry Van Dyke, Fisherman's Luck
Hi Everyone,
First thing's first - HAPPY SPRING!!! The quote up above pretty much sums up how the first day of spring was here: certainly didn't feel nearly as springish as some of the days in the middle of January felt! It was
But enough about the weather. I'm sure you didn't come here to hear about what the weather in New England is like, and I'm certainly glad I'm not a New England weather reporter! I swear, by the time they've said what they think the weather will be like, they have to go back and retract it because the weather has changed! Such is the weather here, but I wouldn't have it any other way. I'm a New Englander through and through. But on to my day. It was a pretty typical Monday for me, and that's not really a good thing since it was supposed to be a bit out of the ordinary in that I was supposed to start TPN. I did all my normal things and went about my day thinking I'd get a call sometime this morning or afternoon letting me know that my supplies were on the way and a nurse would be here this evening to start me on it. I headed up to school with my cell phone in easy reach and my parents had instructions to give my infusion company my cell number if they called. I got up to school and hadn't heard so I called the nutritionist at Coram (I might as well use the actual name of the infusion company to make things easier). Apparently the lab messed up my labwork and forgot to run two tests (magnesium and phosphorus) and Coram needs those two tests before starting the TPN so it was a no go for today. I was frustrated and just hoping that I wouldn't have to make yet another trip over to the clinic to have more blood drawn but since I didn't hear from Dr. Berman's office I assume they'll be able to do the tests with the blood they have (Dr. Berman's office called my house this afternoon and left the message with my parents about the tests not having been done, which I'd already let my dad know about, but said they'd call my cell if they needed me to do anything). The nutritionist also told me that apparently the first day of TPN has to be done during the day and can't be done at night even though I'll be doing it at night usually. That's because I have to be up and around and alert in case I have any kind of reaction to it. So hopefully it will be a go for tomorrow (if you could send some good thoughts my way that would be appreciated!). I just hope I don't end up having to make another trip to the clinic (30-40 minutes each way) to have more blood drawn, not only for the time and energy it takes but also because my poor vein needs to hold out as long as it can and they can't draw from my port there so I really want to try to conserve that one vein that's so reliable.
So, I'm actually hoping to be woken up early tomorrow morning by someone at Coram letting me know the supplies are on their way and that the nurse will follow soon after because if it doesn't happen in the morning, it won't happen tomorrow (since it's a 12 hour infusion and also I have to work at 1:00pm). And then it'll be off to work for a few hours of regular office work, teaching my theater class (have to have a conversation with the kids about the seriousness of their monologues and whether or not they're comfortable with that or if they'd rather do humorous ones - not really my choice but my boss doesn't think some of the topics are appropriate even though the monologues are meant for children and are meant to challenge them, but I have to at least talk to the kids to see how they feel), and then hopefully I'll have enough steam left to make it to choir but I'm not going to push it since this week is busier for me than usual with more work than usual (my boss is on vacation). But for now I'm going to say goodnight and curl up in bed with my hotpack (today hasn't been a good stomach day - I think the Reglan is out of my system so the good affects as well as the bad ones have worn off) and a Friends DVD to entertain me until I fall asleep (the last few nights I've been taking Lunesta to help me sleep and it's helped but I've had enough of it, I don't like taking it more than a few nights in a row). Thanks so much for stopping by to see how I'm doing! I hope you all had a great first day of Spring!
Sunday, March 19, 2006 11:20 PM EST
And you start to think you won't smile again.
And those coals turn to cinder,
Think of me, and I'll warm you from within."
--Michael Troy
Hi Everyone,
This is going to be a quickish update tonight because I'm tired and bleary-eyed. After spending the better part of the day procrastinating on doing the little bit of school work I had left to do (seriously, a one-page final paper proposal with a list of at least three references - how hard is that?) I finally stopped putting it off about an hour and a half ago and just finished it. It wasn't the actual writing that took me that long, it was putting the references in the APA format! I didn't have to type the whole reference in because I copied and pasted it from the journal article search I was using but would it be too much to ask for the search to have the article references in APA format? Anyway, it took me a while to just move all the info around and make sure it's right (didn't double check it - I'll save that for the morning). Today overall was a pretty good day, but nothing like yesterday. It was so nice to be able to get dressed this morning for church and put on pants that didn't need a belt and wouldn't fall down without one! It's amazing how much difference that little change can make. Anyway, church was good and I paid closer attention to the sermon than I think I sometimes do - it was about faith and whether we're each comfortable calling ourselves a person of faith. I thought about it and at first I thought, "no", but then I thought about it and couldn't see how I could think anything but "YES!" I finally realized it was the wording that bothered me (and Tricia, my minister, went into a bit about stuff like that).
Anyway, it was a good service and I shared the (hopefully) good news about starting TPN (hopefully) tomorrow (I'm knocking on wood quite a bit here just hoping things work out well). After church I procrastinated, did quite a bit of work putting up a new page on theLyme Out website (a page with info about me and how the retreats came to be - check it out) and spent quite a while taking pictures of myself trying to see what I really look like now, especially in comparison to how I looked before all the weight loss (it's hard for me to get perspective by looking in the mirror everyday). I posted a "over the past few years" collage in the photo section and I'll post a few pictures at the end of this update. Other than that, nothing big to say today.
Since the sermon topic today was on faith, I did a bit of searching (while procrastinating) for quotes on faith - if you come here very often you know how I love quotes that strike a chord with me. So I wanted to share just a few of these faith quotes with all of you, the ones that were most meaningful to me.
--Rabindranath Tagore
"Treat the other man's faith gently; it is all he has to believe with.
His mind was created for his own thoughts, not yours or mine."
--Henry S. Haskins
"Faith is taking the first step even when you don't see the whole staircase."
--Martin Luther King Jr.
And now, I'll leave you with just a few pictures I took today. (The picture up at the top is one of the ones I took today, too.)
One of the pairs of pants and new shirt I got yesterday.
And this serves to not only show you the cool hairdo I put some extra effort into doing this morning, but also just how incredibly long my hair is! (And it's not even straightened!) I'm going to donate it to Locks of Love when I'm ready to part with enough of it.
Thanks so much for stopping by to see me! I hope you all had a great weekend! Tomorrow is school day for me possibly (hopefully) to be complicated by starting TPN in the evening but I'll leave school early if I have to or do whatever needs to be done to start it whenever I need to start it! Sweet dreams.
P.S. I just (as I was settling in to go to bed just after midnight) realized that I completely missed Grey's Anatomy tonight! Grrr! I wish my family had Tivo or something so I wouldn't miss one of the few shows I love so much when I'm having a braindead day. If anyone happened to tape it and could possibly make a copy of the tape to send to me, could you e-mail me (penguini1982@yahoo.com)? Thanks so much! Stupid, stupid, stupid! Gotta mark my calendar from now on or something (that's what I get for listening to music instead of watching TV all day).
Saturday, March 18, 2006 10:58 PM EST
Well they forgot this world keeps spinning
And with each new day
I can feel a change in everything..."
--Jack Johnson
Hi Everyone,
Well, I'm happy to say that today was really a great day overall for me, and lately that's hard to come by with me! The day had the possibility to be a grumpy, woke up too early kind of day but something was just different this morning. I woke up a while before my alarm went off (set so I'd get up and off to have labs drawn before the lab closes) so I put on some music and just layed in bed and eventually checked e-mail, checked in on some CB friends, etc. Then around 10am I got up and dressed and packed up some saltines and gatorade for the car ride over to the clinic where Dr. Berman's office is. I was worried the lab there might not actually be open on Saturdays but they were so I got my labs drawn without any problem, and the phlebotomist there was about my age and very perky so I just perked along with her, lol. It was interesting to look at the lab order and see there written at the top - Malnutrition. I mean, I knew that's what the labs were for and that's why I'm going on TPN and everything, but it was still a little weird to see it written so clearly there as a diagnosis. So, anyway, after the labs (gotta love my one good vein in my right arm for still being so reliable!) I decided to stop at the mall (it's a smallish mall) to go to Old Navy mostly because I have no idea what size I wear now and that stops me from ordering things online.
It had been a long time since I had been clothes shopping since I very rarely go buy clothes for myself (maybe once for a new pair of shorts or a bathing suit when the warmer weather hits, but not much beyond that) and it was just nice to be out. I had a good idea what size I am now so I tried on some things and found I was right about it - it's not as scary a size as it could be but it's definitely smaller than I've ever been before, especially considering I could have gone down smaller on some things. So I got 2 t-shirts, a pair of jeans, and a pair of other pants that can roll up and be buttoned up as capris (kind of hard to explain). It was hard to decide whether to buy the pants or not since I don't know if/how fast I'll be gaining weight back when I start the TPN and I hate to spend $30 on pants that will only fit me for a month or two, but I figured I could always return the jeans and the other pants do have a bit of room and when I got home my mom said I should spend money on myself now so I'll have clothes that fit so she's going to pay for the jeans (and I had a gift card from my aunt and uncle from Christmas that helped with everything else). I'm so happy to have clothes that fit - I didn't realize how much it bothered me to have to put on those pants everyday that are so huge on me but now I realize it really was depressing for me. Amazing how much difference a quick stop at the mall can make!
The rest of the day wasn't spent doing anything much. I took a really long bath and watched an episode of Grey's Anatomy during it (I set up my laptop on a folding chair in the bathroom - a great set up for taking a nice long bath!) which together is just a great "pick-me-up" combination, so that continued my good mood. I've been resting, watching TV, and things like that for the rest of the day. And I got to talk to Diana this evening which was great (she just got out of the hospital and could use some good wishes if you have a minute). The plan for tomorrow is just church (early for choir rehearsal since the choir is singing) and then I have to get some school work done for Monday but nothing too huge, thankfully. Health-wise today things haven't been much different than normal, except that I've been trying out graham crackers and may have to put them on my "marginally tolerable" list because I think they do make me kind of nauseous. But my no sugar added sorbet is awesome! I'm so glad I found it! And cup-a-soup is becoming my staple dinner - nothing really nutritious but I can tolerate it regularly and water it down as much as I need to. Now it's about time for me to get to sleep so I can make it up in the morning (I just accessed Winnie and got hooked up to my fluids for overnight).
Thanks so much for stopping by to see how I'm doing! I hope you all had a good day. Please do continue to keep my little buddy Lexie in your thoughts as well as everyone having a rough time right now.
Friday, March 17, 2006 9:59 PM EST
"Do not follow where the path may lead. Go instead where there is no path and leave a trail. Only those who will risk going too far can possibly find out how far one can go."
--T.S. Eliot
Hi Everyone,
First of all, Happy St. Patrick's Day! Today in honor of the day, I obviously didn't go out and go drinking or anything but I wore my wonderful St. Patty's Day tank top and socks that Diana sent to me earlier this week. Of course, this is not Texas so I wore the tank top underneath a hoodie (and jacket when venturing outside) but I still felt festive and I love the shirt and socks. The socks say "Lucky" all over them so I think they'll now become my Lucky socks! And while I'm at it talking about Diana, she could use some good thoughts, she's back in the hospital with some kind of infection. She could use some luck of her own!
Now, as for my day today. I slept in a bit and when I woke up I actually felt a bit awake for a change. I stayed in bed for a bit doing some stuff on my computer, then heated up some yummy rice cereal baby food for breakfast/lunch, and got ready for work. It didn't take long after taking my first dose of Reglan for the day for that tired feeling to start to set in and on top of that I'm not jittery - a weird and very frustrating combination. I've decided to take the weekend off of it and assess on Monday whether I want to give it another go, either at the lower dose or at the double dose Dr. Berman told me to go up to, or if it's just too much and I want to try something else. Work was tedious. I only now am realizing that I didn't do any real work but I have all next week to get things done since my boss is gone on vacation. I had to make a few calls to Dr. Berman's office and my local infusion company to get things figured out for the TPN - I need labs drawn first (which I figured when I was in the office on Wednesday but stupidly didn't say anything) so now I have to go over in the morning (yes, Saturday morning) to the office where they've left the lab slip for me to pick up at the clinic reception desk and then I'll go to the lab in the basement to get them drawn. I'm a bit annoyed at having to make the extra trip over there on a Saturday, but if I wasn't working today I could have done it this afternoon and it would have been easier overall. And then I talked to the nutritionist briefly from my infusion company and it looks like things will get started on Monday - basically just waiting on the labs. Glad things are getting set up so easily!
After work I've been resting, took a little nap (I think), and then watched Wallace and Gromit: The Curse of the Were Rabbit with my parents (I have it from Netflix) - I love Wallace and Gromit and the movie was really great. I'm hoping to get to bed early (soon) so I can get up earlyish for a quick shower (yep - Saturday is de-accessed day!) and then over to the lab before noon.
Health-wise, I think I've covered a few things. Eating-wise I've done fairly well today - mostly saltines and cup-a-soup and I did have a graham cracker this evening, too, so I'm hoping that will sit well. Please do keep Diana in your thoughts as well as my little buddy Lexie and everyone else having a rough time out there. I hope you all had a good week and have a great weekend! Thanks for stopping by to see me!
Thursday, March 16, 2006 10:24 PM EST
They will bind you with love that is graceful and green as a stem."
--Leonard Cohen
Hi Everyone,
Today wasn't that interesting overall but had some interesting and exciting happenings I could have lived without. This morning I slept in a little bit (until around 11:30), then woke up and did some various things online. I moved myself out to the living room for a while because it was a nice sunny day and I felt like a zombie in my room. It was really nice being in the living room so I set up a little bed with my blanket (the one I knitted) and my computer and the TV. Then I finished fillilng out some disability paperwork and my DYNA summer chill registration forms and got dressed and out to the post office. I was expecting a call from the nurse at my GI's office about setting up the TPN and I meant to bring along my infusion company information (the local company, not the one I get my hydration through, complicated I know). But I forgot. No biggie. So I got the call as I was pulling into CVS to pick up a few things and just ended up needing to take down the office number and call back when I got home with the infusion company info since they hadn't heard of my company. But talking on the phone while sitting in my car is just waiting for trouble and of course I locked my keys in my car. Luckily I was only about 10 minutes from home and had my cell with me so I just called my dad and he came with a spare key so it was fine. So anyway I got the things at CVS and made a quick run to the grocery store for saltines, popsicles, cup-a-soup, and I decided to get some graham crackers to try (we'll see how that goes). And the most exciting thing was I found no sugar added sorbet! Yay! I had some tonight when my stomach wasn't feeling good and it even seemed to settle my stomach so I'm happy about it all around.
Health-wise today, I feel like a zombie, probably from the Reglan, but I'm going to push through and hope the zombie-feeling goes away with time. I have been eating a tiny bit better but I don't want to say much about that since it could just be my normal ups and downs. I'm just watching ER now and then I'll go to bed (I'm exhausted...probably from the Reglan again). So that's it for me for tonight. I hope you all have been having a good week so far!
Wednesday, March 15, 2006 9:44 PM EST
The precious moments are all lost in the tide.
They're swept away and nothing is what it seems,
The feeling of belonging to your dreams..."
--Roxette
Hi Everyone,
Today the main event was my appointment with Dr. Berman (GI) so I'll bypass all the boring info about when I slept until and all that stuff. The appointment went well and after not being sure whether I'd be staying with him or firing him, I'm glad I at least decided to stay with him through this appointment as I think he will be able to help me and really does want to help me. We briefly discussed the phone conversation he had with the motility dr. in Boston at Beth Israel - apparently that dr. wasn't sure what he'd be able to do for me but would be willing to do more motility tests and whatever else he could do. But, the wait is a few months to see him which was discouraging. He (the motility specialist) also suggested trying Zelnorm but I suspect that's because my GI dr. is still so hung up on me being constipated, which I'm not so much anymore. He is having me double the dose of Reglan (motility med.) three times a day. He'll have me give that another few weeks and then if it's not helping he'll have me try Zelnorm.
So after that discussion, my GI said he wasn't sure what else he could do for me and mentioned TPN but said the risk of infection from putting a line in isn't something he'd really want to jump to. But when I pointed out that I do already have a port-a-cath that is accessed all the time and that right now I feel I need something to help get me to a specialist appointment, he said TPN would be fine at least for the short term to help stabalize me and help tide me over until I can get in to see one of the specialists in Boston (more on that in a second). So I'll be talking to his nurse tomorrow (the nurse who sets up the TPN wasn't there today) and getting that all set up soon. He wants me to run it for twelve hours overnight. And then I'll be running my saline for 8 hours during the day so I'll be hooked up to things for most of the day and night but that's okay, I can handle that if it means I'll be feeling better. Thankfully I also won't have to be admitted or anything to start the TPN which I was worried about since I have to work all next week since my boss will be away.
And I talked to him about the motility clinic at Children's Hospital and he apparently knows one of the doctors there much better than the one at Beth Israel that he talked to before, so if I have trouble getting in to Children's, he'd have more swing there to get me in sooner (I sure wish he'd thought of that sooner). So, that's the gist of my appointment today. I go back to see him in about six weeks (supposed to be a month but it's always hard to get in to see him). I really do feel good about things and I'm optimistic that things will improve from here on out and I'll get some much needed energy from the TPN and stop losing weight. I weighed in at 126½lbs., depressingly down a few more since my appointment with Dr. Bock on Thursday. I thought I wasn't losing so much so fast anymore but I guess I was wrong (now I'm down about 25 lbs. since this started, and 30 lbs. below what I weighed in the fall).
After the appointment I've just been resting, talking to my wonderful friends online a little, trying to learn what I can about TPN so I'll know what to expect (although I'm not going gung ho with the learning since I just want to do it and not waste my energy so much on the education - not so much like me, I know). I'm watching some TV and I'm going to make a cup-a-soup as a late "dinner-ish" meal in a little bit (I'm dealing with some tummy pressure tonight but hoping it will get better as the evening goes on). Tomorrow there's nothing on my schedule so I plan to take it easy and hope to get a bit of school work done. That's it for me for tonight. Please continue to keep my little buddy Lexie in your thoughts as well as all the Caringbridge kids and adults having a rough time right now. Thanks for stopping by to see me! I hope you all had a great day today!
Tuesday, March 14, 2006 9:47 PM CST
Now I wonder.
Cause' I've seen much more dark skies, than blue.
Now I wonder..."
--Chris Isaak
Hi Everyone,
I'm really worn out after a pretty long day so this is going to be fairly short (I think). This morning I slept in a bit (11:30 or so) before waking up, taking meds, and doing some stuff on my computer. I got stuff ready for my theater class and got packed up and left for theater class early so I could talk to Wendy (my boss) a bit before and type up a letter for the theater parents before class. The class went well and I passed out scenes for everyone so I think things are moving along well! I'm excited to really get working on things. Then after class I headed over to church for choir rehearsal but I spent the first part of the drive (I kind of go by home on my way from work to church) trying to decide if I was really up to going to rehearsal. I decided to go but I was really tired so I left halfway through as I usually do. I got to talk to my little buddy Lexie tonight and she's really excited about us hanging out sometime soon. We're going to go out to a movie sometime in the next month or so, probably, and I'm looking forward to it, too! Now I'm just watching some TV and doing some stuff online until I'm ready for bed.
Health-wise today hasn't been a great day. I've had more abdominal pain than I'm used to but I've managed it with my hot packs and a few motrin from time to time. My eating has taken a nosedive today but not too horribly and it was bound to happen at some point after some days of higher caloric intake. Other than that, the normal stuff, up at the top of it being the awful fatigue and weakness. Every afternoon now I feel like I need a long nap, or even to just go to bed for the night. On another health note, I did hear back from Dr. Berman (GI) today and he just told me the same things that he had left in a message with my mom - that I can't get in to see the motility specialist for a couple of months. But he also said that I'd have to call and make my own appointment with him (the motility dr.). He also, for the first time since I saw him two months ago, brought up some medications to try me on, not including Reglan (the one I just started on) but he was bringing up meds used for IBS which I don't feel he can diagnose me with unless he's done a lot more testing to really rule other things out. But, anyway, I see him in person tomorrow and I'm going to bring some info about other motility clinics for him to hopefully look into and I have a feeling he really won't have much to offer me so he won't be my doctor for much longer. I will have to fax or call Dr. Bock this week and let him know about all this and get him to talk to the GI dr. he refers to in Boston.
Okay, so that's it for me for tonight. I hope you all had a good day today and continue to have a good week! Thanks for stopping by to see me! Please keep my friend Diana in your thoughts as she's still in the hospital.
Monday, March 13, 2006 9:41 PM EST
Is the laughter keeps us coming back for more.
The space between the wicked lies
And hope to keep us safe from the pain..."
--Dave Matthews Band
Hi Everyone,
Well, today wasn't a "normal" Monday for me because I knew I wasn't going to be able to handle going up to school for my class. I knew this yesterday so last night I e-mailed my teacher and told her I wasn't sure I'd make it to class and this morning and early afternoon I kept trying to decide whether to push myself and go or play it safe and stay home to rest. The decision was basically made when I had kind of decided to push myself and go and no sooner had I decided that than I got a horrible wave of exhaustion and felt like I needed a nap so I knew going up to Boston would just be stupid. So I spent most of the day in bed resting, watching TV, doing stuff online, I watched most of Sophie's Choice which I have from Netflix (it's a bit boring but I do like it, just knew I'd fall asleep if I tried to finish it today), and this afternoon I made a batch of my adapatation on Diana's adapted oatmeal cookies (so they're adapted adapted oatmeal cookies, lol). And now I'm just watching some TV and talking to that very same Diana who could use some thoughts as she's in the hospital right now. Tomorrow I just have to teach my theater class and then go to choir rehearsal if I'm up to it (I have every intention of making it there). Oh, and today I got a wonderful package in the mail from that same awesome Diana with St. Patty's Day stuff - a pair of socks, a shirt, and a cute little ty bear with a clasp. It was a great package and Diana is just so thoughtful to do things like that so much. She's just an awesome friend!
Health-wise today I've had a lot more abdominal pain than usual but I'm dealing with it. No changes so far since starting the Reglan but I'm still hopeful. Over the past week or so I've consistently made it up over 300 calories but not up to 400 everyday (only made it up to 400 a few times). I did manage to eat part of a noodle bowl and some other things today so I'm continuing to try new things. And I'm hoping to feel up to having one of those cookies I made tonight sometime! Still no call from Dr. Berman but I have an appointment on Wednesday with him so I'm not worrying about talking to him before then, although it would have been nice for him to have returned my call. My temperature is still all over the place and I'm really confused by it - it seems like I'm just really really susceptible to having my temp. go high if the room is warm which isn't usual for me. I'll be keeping an eye on it still and hope it settles down soon!
That's it for me for tonight. Please continue to keep my little buddy Lexie in your thoughts and prayers as well as Diana who is in the hospital and Tara who is still in MN at the Mayo Clinic. I hope you all had a great Monday and have a great rest of the week. Thanks so much for stopping by to see me!
Sunday, March 12, 2006 9:01 PM EST
to the silent prayer for the healing of pain, and the soft, gentle coming of love."
--Meditation From "Singing the Living Tradition" (UU Hymnal)
Hi Everyone,
Something weird is going on with me, my body is all out of whack (I mean even more than I thought it was). My temp is fluctuating all over the place, I'm sleeping all the time, and things are just weird. But first a little bit about my day. I was afraid that my long nap yesterday was going to make it difficult for me to get to sleep last night but it didn't seem to - I got to sleep not too long after midnight. This morning I dragged myself up and got dressed and my dad and I left for church so I could get there early to do some singing with the choir and our special musical guest, Matt Meyer. I was so exhausted and out of it for the morning but it was nice to get to see a lot of people, talk to people after the service, and just be there with everyone who cares so much about me. And I got to say hi to my little buddy, Lexie, and talk a bit about getting together with her (we'll go see a movie, I think, and chance has it that my next two Saturdays are free - no work!). And after church we came home and I did a few things online and stuff before falling asleep for a 3 hour nap, again (I did this yesterday, too). And now I'm just resting, watching TV, waiting for Grey's Anatomy, and talking to Sarina online.
Health-wise, as I said things are haywire. My temp was high again today at times but then it was my normal at times too. So over the course of the day it's ranged from 97.6* to 99.1*. I just don't understand this! It could be my dysautonomia going crazy which is very possible but it's still just weird. The temp fluctuations could be responsible for me being so exhausted to some extent but I'm just not sure about any of these hypothesis. My eating today was semi-okay - had a cup-a-soup for dinner, some oyster crackers and soymilk earlier in the day, and also some saltines with apple butter (yummy! not really butter, just an apple spread). I'm happy I've found I can tolerate some things on my saltines to make them more interesting and also add some extra calories.
Okay, that's about it for me tonight. Please continue to keep Lexie in your thoughts as well as Diana who is in the hospital and Tara who is still in MN at the Mayo Clinic and has found that some of her diagnosis may have been wrong so she has to stay there much longer than she was expecting and could use some good wishes. Thanks so much for stopping by to see how I'm doing! I hope you all had a great weekend!
Saturday, March 11, 2006 7:44 PM EST
--City of Angels
Hi Everyone,
I'm doing an early update today because I just didn't feel like waiting 'til right before I go to bed when I just want to go to sleep. My Saturday has been pretty good. I had to wake up early (which I hate doing) at 9:00 to get up and ready and off to work at 10:00. Work was pretty quiet but I had quite a bit to catch up on since I hadn't been in for a week (I usually work on Thursdays but I was in New York this Thursday). We also had an art camp (summer camp) meeting with the other activity heads (I'm the theater activity head) and counselors which was good but we spent most of the meeting trying to help the new arts and crafts activity head become familiar with the kinds of project we do and stuff like that. We'll have a few more meetings before camp actually starts on July 5th. After work I came home, ate some saltines with blueberry jam (yummy! I'm glad I thought of trying jam to see if I could handle it) and then decided to take a nap...and woke up about three hours later (not really like me). Now I'm just watching some TV, doing my laundry, and I'm going to go take a bath when I'm done with this and watch an episode of Grey's Anatomy while I soak in the tub (I love my set-up in the bathroom with my computer playing a DVD set up on a folding chair). And then I'll access Winnie and hook up my fluids for the night.
Health-wise today things haven't been too bad. My temperature is back down to a normal, not quite my normal, but down to around 98.6* so I'll take that over a degree above that. I'll continue to monitor that over the next week or so and make sure it doesn't go back up again. The nausea and pain hasn't been horrible (although as I write this my abdomin is starting to hurt more) and things in general have been the way they've been for a while, nothing new which I think is a good thing (means nothing has gotten worse).
Tomorrow I have every intention of making it to church in the morning since there's a special guest doing music stuff (and I also just like being there with everyone who cares so much about me). And the rest of the day will be devoted (I hope) to school reading. If I don't finish the reading tomorrow, I will go up to school early on Monday and finish it then, but I hate leaving it 'til the last minute. Please continue to think of my little buddy, Lexie, as well as Diana who is in the hospital now and Tara who is still in MN and not done with all the fun stuff at the Mayo Clinic. Thanks so much for stopping by! I hope you're having a great weekend!
Friday, March 10, 2006 11:22 PM EST
--Grey's Anatomy
Hi Everyone,
Okay, so today proved to be a slightly better day than yesterday and perhaps things (as far as doctors go) will settle down soon. At least I'm hoping! This morning started out with my alarm waking me up at 11:30am. I'm so glad I thought to set my alarm or I would have possibly slept through my appointment with Leslie, the NP at the walk-in clinic. But I didn't, made it out of the house and there in time for my 1:00pm appointment time, but had to wait for about a half hour (not a big deal).
I was there mainly to see if she'd be willing to be my temporary PCP until I find a permenant one and I think she will at least see me through this crisis until I can find another PCP. The main issue is that she doesn't believe in Chronic Lyme Disease and doesn't agree with pretty much all the treatment I've been doing for it. And it also extends to my IV hydration which has been so helpful but she said very clearly that she's not comfortable at all with it so we both know that she's not a good match for me long-term but she realizes I need someone for the short-term. We had a long visit, she is really concerned about me (she said that when she saw me walking back to the exam room, she was shocked at how horrible I looked and she compared me to a wasting AIDS patient - that was scary) and she's the first doctor who brought up putting me in the hospital. But she realizes, as I do, that putting me inpatient around here wouldn't do me much good at all - I need to go inpatient in Boston to get anywhere. But the fact that she realizes the need and if things get worse I believe she will find a way to get me into a hospital in Boston or admit me to a local hospital just for whatever they can do for me.
The best news is that she did give me a prescription for Reglan (for GI motility) and one for Bentyl (for colon spasms). I'm so glad to finally have the Reglan so I can see if it will help. She also mentioned (perhaps it was meant to scare me - but it didn't work) a g-tube as a possibility. I tried to figure out a way to say that I'd be relieved to have one if I could tolerate it, hopefully just for the short-term until I can get things sorted out and manage to work up to eating a little more myself. She also said she wants me to have psychiatric testing done which I will do to prove to everyone that it's not a psychiatric problem.
I will go back in or call her to keep her updated and also bring her information on Dysautonomia and motility disorders (she doesn't know much of anything about these things) and possibly some things about chronic Lyme but I'm not sure if that would help things at all. She is very honest that she is up front about what she thinks, even if I don't want to hear it. I told her I appreciate that, especially after the ordeal with finding out what Dr. Hood (ex-PCP) had written behind my back. She also said that I should say what I want to say, whether she wants to hear it or not. She believe communication is key, and I respect that so I think we can at least work together for a little while but I hope to find a PCP who believes my diseases soon.
So, after the appointment I ran some errands, had to go to two grocery stores to get my basics (the one right next to the walk-in clinic didn't have my brand of oyster crackers so I went to the one by my pharmacy and got two boxes) and also got some of those dehydrated soup bowl things that are healthy/natural and some lowfat chocolate soymilk that doesn't taste bad so I'm hoping to be able to get in a cup of that a day to help up my protein (and calories), and of course I went to the pharmacy to pick up a refill of Phenergan and fill the other two scripts I got this morning. I left a message for Dr. Berman (GI)this afternoon (after the appointment) but didn't hear back from him today so I'll have to wait through the weekend to hear anything from him and continue with any kind of answers or plans.
When I got home I decided to try one of the dehydrated soup cups - vegetable miso ramen noodle - low fat and easy to make. I managed to eat about half the cup and it's a big cup so I was glad I was able to get that much in, but that was about 7 hours ago and I'm still full and having abdominal pain (I suspect the abdominal pain might not be from the soup so much as an adapted oatmeal cookie I ate a little while ago). Oh, and for most of the day today I've had a bit of a temperature. Well, more than a bit of a temperature for me, bordering very closely on a fever - it was 99.6* (I think) at the doctor's and then this evening it was hovering around there. It has since come down a bit, though (now it's hovering right around 99*), thank goodness, since at this point I'm afraid that a real fever would send me to the ER and sepsis would be on my mind. I'll be taking my temp regularly over the weekend and hope that it goes back down to my normal (around 97.5* or a bit lower).
And the highlight of my day was when I got home and saw a little package waiting on my bed. I opened it, forgetting I had ordered anything, and it was...Grey's Anatomy: Season One!! YAY! So I spent a little while watching the first episode which was before I started watching the show so it was new to me! I'm sure it will be good company for me in the near (and possibly not so near) future.
So, that's it for me for today. Hoping for a non-exciting weekend since excitement would possibly mean bad stuff going on. I'm working tomorrow (have an art camp meeting while I'm there, too) and then church on Sunday if I'm up to it. I need to spend time doing my school reading, too, so I'm hoping for a quiet day at work tomorrow. Please continue to keep my little buddy, Lexie, in your thoughts and prayers. Thanks so much for stopping by to see me! I hope you all had a great week and have an even better weekend!
Thursday, March 9, 2006 10:51 PM EST
or we can take charge and rule our lives from within.
--Earl Nightingale
Hi Everyone,
I'm trying, I'm really trying with all my might to stay positive, to keep smiling and laughing and not let all these sucky days and circumstances get to me but I am wearing so thin and I just can't handle it so well anymore. I can't handle all of this so well. I'm so tired, exhausted from this all and I keep having problems, disappointments, doctors who seem unable or unwilling to help or who simply do not understand how bad things have gotten. Of course everything seems so much worse when I'm overtired as I am tonight so perhaps I should leave the dramatic analysis for tomorrow when I've had a chance to recover from the day today (and the rest of the week).
So, today was a long day - trip to New York to see Dr. Bock. And the visit was not very productive. They were running behind - not really badly behind for a doctor's office in general but further behind than his office has been running for the past few times I've been there. So I set up camp in the waiting/infusion room in one of the big reclining armchairs with some school reading (read that for a bit until my brain got too mushy) and then put on my headphones and listened to Harry Potter on my mp3 player 'til they brought me back. My weight is getting scary - another 10 lbs. down since my last visit 6 weeks ago and I'm now at 129 lbs. which for my height isn't underweight but is in serious danger of getting there if I can't stop the loss. Dr. Bock was very concerned about all of this, especially the weight loss. It was nice having a doctor who realizes things are bad and knows something needs to happen asap. But he didn't feel he could do anything since my GI was going to try to get me in to see the motility specialist in Boston (more about that in a second). So Dr. Bock didn't give me any meds, and aside from drawing some labs (chem panel, I believe) he didn't do anything. BUT, he said if I can't get in to see the motility specialist within the next few weeks that he will do something since I can't wait. He knows some pediatric GI doctors in Boston who he feels would see me if I can't get anywhere with Dr. Berman and I may be going there soon (again, more on that in a minute). Dr. Bock also did bring up the possibility that, if my weight keeps dropping, I will be put on IV nutrition. I told him I was ready for whatever needed to be done, but he said he wants me to see the motility specialist. So I had a quick stop to get the labs drawn (from my port - I love that his office has an IV nurse who can draw from my port) and then we headed out.
We (my dad and I) had a nice visit with my aunt and uncle, who are both very worried about me. I brought a packet of cup-a-soup and oyster crackers to eat for dinner but unfortunately opted to also have a box of fruit punch which wasn't a good choice (I think it's the pineapple juice in it, even though it's just a tiny amount in it). It was really nice to see my aunt and uncle and I wish I could see them more often. My aunt (Deborah) could use a few good thoughts as she's been dealing with an awful tooth/bone infection for about two and a half months and is still having fevers. The hope is that it hasn't gotten into her heart - she has an EKG next week - and she sees a specialist next week also.
So, about that Dr. Berman stuff I said I'd get to in a minute. While at my aunt and uncle's my cell phone rang but I didn't recognize the number so I didn't answer it. It was Dr. Berman, he left a quick message that he had gotten in touch with the motility specialist (Dr. L) and I could call him tomorrow to talk about it. When I got home there was a message left for me on the counter from my mom that she had talked to Dr. Berman (GRR!! I really need to give him a copy of the HIPAA guidelines! I will talk to him about how he is not supposed to talk to anyone but me when I talk to him tomorrow). The message was that I wouldn't be able to get in to see Dr. L for a couple of months!! I obviously don't have a couple of months to wait so I will be calling Dr. Berman tomorrow to figure out if there is anything he can do for me, if he could maybe look into the motility clinic at Children's Hospital (they take young adults, too), and if the answer to both those things is no I can say fairly surely that Dr. Berman will no longer be one of my doctors. I will try to get in touch with Dr. Bock, too, no matter what Dr. Berman tells me and I will ask Dr. Berman to send Dr. Bock copies of his notes and the test results.
I am very frustrated that things don't seem to be getting any easier right now. I'm so drained and everything is just getting to be so much to handle. I can deal with a lot, I've been dealing with a lot for a long time, but when things don't seem to be getting any better and I can't see that I really have doctors doing things to actively help me right now, it's really just too much. Tomorrow is a new day and hopefully it will be better than today or most of the rest of my week. Tomorrow I can rest for most of the day - just have an appointment with Leslie (the NP at the walk-in clinic) at 1:00. I'm planning on spending the rest of the day in bed in my PJs resting, watching some TV/movies/DVDs, trying to drink some tea and broth and maybe a little soup and saltines if I'm up to it since after a few days of pushing food I'm definitely feeling worse (today there was a lot more pain which wasn't fun in the car with my heated rice packs not available). I will also be able to de-access after my saline infusion and take a bath tomorrow evening (or at least a shower) and hopefully that will help me feel better. Please continue to keep my little buddy, Lexie, in your thoughts and prayers as well as Tara who is finishing up her week of testing and fun stuff at the Mayo Clinic but has to stay until at least Monday for more tests and appointments (not fun!). Thanks for stopping by to see how I'm doing. I'm hoping to have some better news to report tomorrow after my appointment with Leslie and on the Dr. Berman and Dr. Bock fronts (hoping for good news to bring me through the weekend!). I hope you all had a good day today and I wish you sweet dreams!
Wednesday, March 8, 2006 4:14 PM EST
--Martin Luther King, Jr.
Hi Everyone,
Okay, I'm ready to do a better update than what I put up last night. Yesterday started out really good - I got a visit (a planned one) from my minister, Tricia. I've talked about my church family and about how great and supportive they've been and this visit from Tricia was just another part of that. We talked for a long time, I explained some of these new medical challenges that have made everyone so concerned, and we just had a nice chat. It was really great to get to talk to her and to have her come see where I live and everything.
After that great visit, I rested for a bit, did some stuff online, made a call to the Dartmouth Walk-In Clinic and made an appointment with the nurse practitioner, Leslie, for Friday afternoon (she will hopefully be my temporary PCP until I find a permenant one). Then I plucked up my courage and energy and headed over to my ex-PCP's office to pick up my records. After I got them I spent a little while in the car reading through some of them and got fired up at some of the stuff in there. I won't go into details about it all but lets just say that she basically didn't believe in my chronic illness diagnosis, thought I was anorexic and bulimic, and she had some letters from my physiatrist (now ex-physiatrist) saying that I was basically preventing myself from getting better. All of these things in my records, being discussed or written behind my back without being mentioned or talked about behind my back without giving me the opportunity to explain or educate them about my illnesses, and I now feel really uneasy and distrustful of doctors (even more so than I might have before). Above all, you should feel like you can trust your doctor, like he or she is working with you and for you to offer you the best possible care, and not keeping things from you. But if they are hiding what they really think or feel, they are breaking that trust and in my opinion they are acting unethically. I know doctors write things in people's charts that they are unaware of all the time, and I feel very strongly that this should never happen. It's happened to me before but never to this extent or with a doctor who I thought I could trust. But enough about that. I will find a new PCP, one who understands chronic illness better and above all else listens to me and respects me, and when I do that I will pick and choose which of these records (if any of them) they see.
After that, I went on over to teach my theater class which went well. I split the class in half and had half work on their monologues with me and the other half do an exercise where they take a landscape painting and create a character based on it. Both groups did an awesome job and I'm so pleased with the class! Next week the two halves of the class will switch and I'm going to be hopefully handing out scenes to everyone so I'm really getting excited about the class. I also brought cookies and juice boxes to celebrate a bunch of birthdays the kids had around the same time and that was fun (of course I didn't partake - I had my iced tea to sip at while they ate and drank) and we have more to maybe snack at next week. Then I stuck around for a bit afterwards to write some notes to myself and then headed over to choir rehearsal and got there just on time but our choir director is still on vacation (she's been on vacation for almost a month) so a lot of people didn't come so it was a short and somewhat chaotic rehearsal but fun. I spent a while semi-lying down in my pew (since there were so few people I could take up a whole pew) while other parts were rehearsing so it made things easier to handle.
When I got home my mom gave me a message that my GI had called and left a message for me with her. Unfortunately he had talked to her about me which he is not at all allowed to do - he does not in any way have permission to discuss my health with anyone but me and I need to remind him of that and perhaps show him a copy of his HIPAA. But the message was that he has called the motility specialist in Boston (Dr. L) on Monday and Tuesday and left messages and not heard back from him yet. If he had stopped there it wouldn't have been bad because it really would have just been a message, but then he asked my mom how I'm doing and went into definitely off limits territory. But anyway...
After that, things went downhill because my mom and I got in a fight. My dad is away on a business trip until tonight and while he's away things are more stressful between my mom and I. I know my mom reads this page so if you're reading this, mom, I just want you to know that I use this page to express myself, vent, and it's my space on the internet to write what I need to write. I don't want to feel that I have to watch what I write because I know you read this so don't get upset about what I write. Anyway, so the fight was basically about how my mom doesn't understand any of these GI problems. She wonders whether I'm causing them myself, whether basically it's all in my head (not her words but what she was saying), whether I decided I was going to have a motility disorder and that now I'm making myself sick by not eating. I was so exhausted from my long day and I've tried so hard to give her information about motility disorders and educate her and help her understand and I just can't do it anymore so I just started shouting. It's too stressful to have to fight to have someone as close to me as a parent understand what's happening. So for right now, I'm not going to fight anymore. I'm not going to try to make her understand. I'm not going to try to educate her. I'm not going to defend myself to her. I'm not going to do any of that, I'm just going to avoid talking about my health with her for a while. It comes down to that issue of trust that I feel so violated about when it comes to my ex-PCP. Right now I don't feel that I can completely trust my mom. I know this is hard for her and she just wants me to get better, but I don't have the energy to deal with her anymore and I need to focus my energy on me so that's what I'm going to do. It's not out of spite, it's out of necessity.
Last night I got to talk to my wonderful, awesome friend Diana about all this and it helped to get some of this off my chest to someone who understands it all. At choir rehearsal (before the whole fight with my mom) I also got to talk briefly with Alice, the mother of my little buddy Lexie who is having a bit of a rough time now as they aren't sure what is going on with her brain tumor. Lexie had an icky cough so she wasn't at rehearsal (normally her kids come and play with some of the other choir members' kids) but I told Alice to let Lexie know I said hi and I'm thinking of her. And Alice told me something that just broke my heart and made it soar at the same time - Lexie has a prayer list and prayer beads that she uses everyday and I'm on her prayer list...twice! She has me at the top of her list and at the bottom so she prays for me twice whenever she prays. To know that this little girl (I think she's 7) is praying for me renews my spirit and hope but at the same time it's hard to think of little Lexie sitting there (or kneeling, or however she prays) clinging to her prayer beads praying so hard for me and so many other people. And Alice told me that Lexie says, "Annie just has to get better, she just has to!" If I didn't have enough reasons to get better, to know that little Lexie needs me to get better is yet another reason. I told Alice that I would really love to hang out with Lexie sometime and just spend some time with her so I think we'll do that sometime soon (probably just have me come over to her house for a little while and do art stuff or something very low key).
So that's yesterday. Today I'm staying in bed, resting, watching some TV, talking to some friends online, and taking it very easy. Tomorrow is a long day to New York to see Dr. Bock and stopping in to see my aunt and uncle for dinner (I better bring some baby food or jello and saltines). And Friday is a resting day with an appointment with Leslie, the NP, in the afternoon. And work on Saturday and church on Sunday and then I will have made it through the week and weekend. Last weekend I wasn't sure I'd make it through the week without ending up in the hospital. I'm ready to go there if a doctor wants to put me there, but I guess if they aren't I'll just try to make it through each week, each day, each minute, each second and continue existing in limbo.
Thanks for stopping by to see me! I think I'll skip an update tonight since this was so long and nothing is happening today and I'll update tomorrow when I get home from New York. I hope you all are having a great week! Please continue to keep Lexie in your thoughts and prayers and also my great friend Tara.
Tuesday, March 7, 2006 11:59 PM EST
--Grey's Anatomy
Hi Everyone,
I don't really have the energy to write much of anything tonight so I will add more in the morning. Just wanted to say that today was a very long day and overall not a very good one. But I'm still standing (well, sitting right now and about to be lying down and asleep) and tomorrow I'll be spending the day in my PJs in bed so hopefully that will help. It mostly wasn't a good day because of health-related but not specifically health reasons (picked up my ex-PCP's records, got in a fight with my mom, etc.) but I'll go into a bit more tomorrow. I hope you all had a better day than I did! Sending out good thoughts to all of you!
Monday, March 6, 2006 10:30 PM EST
And I've been trying to keep believing that I might ever understand..."
--Kris Delmhorst
Hi Everyone,
Just a quick update tonight, I'm really tired and thinking of heading to bed now (or at least getting ready for bed and watching TV until I do fall asleep). Today wasn't exciting at all for me - just spent the day in bed in my PJs (this week is spring break so I didn't have class today). I talked to some people online, including Sarina which was nice since it felt like it had been a while since I'd talked to her. I also spent a while puttering around on Myspace (I signed up the other day and it certainly is a good way to waste time!). And tonight I watched Charlie and the Chocolate Factory which I really liked, although it's annoying that since it's from Netflix and the special features are on a second DVD I didn't get to see any of the extra stuff. Oh well. And now I just want to go to bed (I was hoping to take a nap today but that didn't happen - I woke up earlier than I had hoped or planned today).
Health-wise today I did really well as far as getting calories in (I'm up to 400 calories and I haven't had my bedtime popsicle so I'll end up just over 400) but it meant that I spent the whole day feeling sick and really uncomfortably full. Right now I just feel really sick and just want to sleep and wake up feeling better. This morning I woke up with a headache that I hoped would go away after a little while but it didn't, thankfully my migraine med took care of it pretty well. I didn't make an appointment with my hopefully "in the mean time" PCP (the NP at the walk-in clinic I go to sometimes) mainly because the time just got away from me but also because I'm not sure if I should push to see her before I see Dr. Bock or wait and see what he has to say and how much he can do for me. I'll think about it more tomorrow and see what I decide, chances are at this point I wouldn't be able to get an appointment until Friday or next week, though I don't know for sure.
Okay, I need to get ready for bed because I'm seriously about to fall asleep (or at least while I'm sitting up that's how I feel, when I lie down I wake up more which isn't what I need to happen but, oh well). Please continue to keep Tara in your thoughts as she starts her testing at the Mayo Clinic. Also keep my little church buddy, Lexie, in your thoughts as well as Alyson and Heather - they're sisters and are both in the hospital right now (and Alyson just happens to be a fellow Wheelock student, although she's a grad student so we're a bit different there). Thanks so much for stopping by to see how I'm doing! I hope you all had a really good Monday!
Sunday, March 5, 2006 9:28 PM EST
-Dalai Lama
Hi Everyone,
I'm exhausted today. I overdid it yesterday and I overdid it today and now who knows how long I'll be paying for it. I just know I'm feeling pretty awful tonight. Today I did manage to get myself to church at 9:30am for choir rehearsal before the service. It was interesting how so many people were telling me they were glad to see me there and a lot of people said, "So good to see you back!" I just kept saying, "Well, I only missed one Sunday to sleep in but thanks!" I think they were mainly concerned because last week during Joys and Sorrows someone lit a candle for me and it's been getting around that I'm not doing well so they're glad to see me when I can manage to make it. So I got to talk to quite a few people, have semi-long conversations with a few of my better church friends, and then stopped at the store on the way home to pick up a few things (I decided to give vegetable baby food a shot since I was kind of wanting carrots). I got some baby food and some other things to try - cup-a-soup, Campbell's soup at hand (kinds with very little fat), rice cakes (popcorn flavored), juice, and a few other things I think. Oh and I found canned partially evaporated goat milk there, too. We'll see if I can tolerate it if/when I try it.
Then I had a quick rest at home while I ate some cup-a-soup (seems I can tolerate it okay but I felt fairly sick afterwards) and then my mom and I went out and saw Steel Magnolias at the art center (where I work). It was really good and half the cast was people I was in a play with and done other things with so it was just nice to be there. I was really tired, though, and thankfully our seats were in the corner and I took the end seat so I could lean on the wall. Now I'm resting, semi-participating in a gastroparesis chat, and semi-watching The Academy Awards. I'm exhausted and need to go to bed early tonight. I'll leave it there and sign off. Nothing to say health-wise, just hoping to make some headway this week. I'm not ruling out a possible ER visit in the near future if my doctors aren't able to do something really soon.
Please keep my friend Tara in your thoughts as she just flew up to the Mayo Clinic today and will be there for a little while getting tests and things done. Also please continue to keep my little buddy, Lexie (from my church), in your thoughts. Hope you all had a good weekend! Thanks for stopping by to see how I'm doing!
Saturday, March 4, 2006 8:15 PM EST
Now I wonder.
Cause' I've seen much more dark skies, than blue.
Now I wonder...
--Chris Isaak
Hi Everyone,
Early update tonight. I'm just so exhausted after a very long day and I have some things to get done before I completely collapse and fall asleep (or turn into my normal insomniac self). Every week when I have to wake up early (or at least early for me) on Saturday to go to work at 10:00am I'm reminded of how hard it is for me to deal with mornings, or I should say with waking up more so than the morning part. I love mornings, they're wonderful and I would really love to be able to enjoy them more often, but my body doesn't seem to be able to handle them well at all. So this morning my alarm went off and I hit snooze once...twice...and then snuck out of bed long enough to turn on my space heater (my room has no heat without it). The room was still freezing when I got out of bed a few minutes later but it helped take the edge off of it. I made it to work on time but I was groggy and half-asleep all day because of having to wake up early. I hate feeling like that. (And tomorrow will be another day like that because I have choir rehearsal at 9:30 before church.) But I got quite a bit of my own stuff done at work - e-mails, etc. - so it wasn't a bad 4 hours spent half-asleep at work.
Then I came home and my mom and I went off to see Lauren, my homeopathic nurse practitioner. After seeing all these doctors who don't know me well at all and just brush me off, it's so nice and refreshing and comforting to see Lauren who has known me since I was little and it's so easy to talk to her. I don't have to worry about not being taken seriously or about not being believed, she just listens and knows me and of course is a medical professional, too, so she's able to offer medical advice and give me homeopathic remedies (I don't totally believe they work, but I don't mind trying them - they can't hurt). When she came out to the waiting room to get me, the first words out of her mouth were, "Wow, you really are skinny!" or something to that effect. And as weird as it sounds, those words were comforting to me because I felt like finally I was there with someone who knows what I usually look like and knows that I'm so far from my norm that something serious is happening and something has to be done soon. So we talked, I caught her up on this latest crash, what I'm able to eat, my symptoms, etc. She absolutely believes it's a motility disorder and she believes that it was exacerbated by the antibiotics I've been on for so long (very possible since antibiotics are rough on the whole body). She says it's time to fire Dr. Berman (which I agree with, he hasn't helped me and it's high time I showed him the door) and she gave me the name of another GI dr. down on Cape Cod. She told me I might want to try goat's milk since I can't handle cow's milk and she told me she wants me to try to get in more calories but she also understands that my stomach needs a break and can't handle much so she's kind of at a loss of a way to really fix this right now. She gave me a remedy to hopefully help the motility and she wants me to get a prescription for Reglan from Dr. Bock on Thursday, if the remedy hasn't helped in a few weeks I'll go ahead and take the Reglan. She also doesn't think I need more testing done, just treatment to help the motility so I can start eating more.
So, that's the gist of the visit. When I got home I took a nice long bath (with my computer set up with a Friends DVD next to the tub - I'm so glad I thought to set things up that way) and now I'm numbing up Winnie (my port) to access and head to bed soon since I'm just completely exhausted. I've been thinking a lot about my appointment with Dr. Bock coming up on Thursday and I've decided that he may very well be able to help with my nutritional issues by putting me on at least partial IV nutrition. He already has me on the IV hydration with vitamins and minerals added so he may be willing and able to go further and do more with that. I don't know. He's my best shot at this point and I need to at least talk to him about it since no one else can do anything for me (or isn't willing to do anything for me). Health-wise today things haven't been great but not awful. The fat free saltines seem a bit easier for me to handle than the oyster crackers but I don't like them as much - but easier wins out over likeability. I was going to try some ramen-type fat free noodles tonight but after my bath I was feeling too sick so I settled for saltines and I'll try for some baby food or jello before I go to bed. *sigh* I'm so sick of all this. Oh well, I have some great things to look forward to (see the counters above the journal)! That helps with things!
Thanks so much for stopping by to see me. I hope you're having a good weekend so far!
Friday, March 3, 2006 11:59 PM EST
--David Russell
Hi Everyone,
Today wasn't anything exciting. Slept in until about 12:30pm, did some stuff online, manage to eat some cream of wheat, nothing very exciting. I did get dressed and went out the grocery store because I was out of jello and oyster crackers and the broth I had in my fridge was a few weeks old (I haven't been drinking that a lot lately). So I got quite a bit of stuff, a lot of drinks (yay! selection!) and some fat free saltines to see if they're any easier for me to tolerate than the oyster crackers (although the oyster crackers aren't that hard to tolerate). This evening I got to talk to my sister (yay!) and filled her in on my GI saga for the last...however long it's been since I talked to her last and also told her about my travel dates to visit her (yay! only 3 months! oooh, I have to put up a counter for that!). I also took a shower which was nice and I feel better after that.
Health-wise I have a bit of an update but I'll try to keep it short. First the simple (and good) news - I've gotten the whole dressing change kit thing straightened out and I'm getting the old kits. I'm glad I have a good infusion company who listens to what I say and really works hard to make sure I have what I need. Now, for the other health news. I finally talked to Dr. Berman (GI dr.) after I called his office and left a message for him to call me (who knows how long it would have taken him to call me on his own). He told me GI series was normal (not a surprise) and then seemed to have completely forgotten our conversation a few weeks ago and what the plan was at that point (to do the GI series and then, assuming that was normal, to send me to Boston to see a motility specialist). Instead of doing that, all he said was that he thinks I just have IBS or dyspepsia! But I didn't just accept that since I KNOW those are kind of "throw away" diagnosis that are given when the doctor doesn't really know what's going on and I KNOW he hasn't looked into this enough to be able to say it isn't anything else. So, I brought up our last conversation and after a little reminding he remembered it. He didn't seem as open to the possibility of me having a motility disorder now as he did a few weeks ago but he said he'll call the motility specialist in Boston on Monday. I don't know how long it will take to get in there, I don't know much of anything but hopefully SOMETHING will come of this. Before getting off the phone with him, I asked if there's anything in the mean time that I can do. We talked for a minute about what I'm able to tolerate eating (he wasn't concerned AT ALL, or at least didn't seem concerned, at the severity of my symptoms and how low my caloric intake is) and he went through suggestions of all the things I've already tried and found to cause too much pain and nausea to tolerate (things with dairy, boost, ensure, soy, etc.). So he said he doesn't have anything he can do for me now but send me to the motility doctor. I'm so frustrated because I feel like he should be more concerned and want to see me (I haven't seen him for 6 weeks at this point). He has this way of apologizing and trying to reassure me that just makes me more frustrated because it's like he doesn't have any CLUE what's going on! So I'm frustrated and just...well I think frustrated sums it up pretty well. I don't know what's going to come of this but I guess I'll keep pushing, call his office again on Monday to see if he's gotten anywhere with the motility specialist, and maybe pluck up my courage to ask about other ways of giving me nutrition for the time being.
Okay, end of semi-vent. As far as health stuff goes for today, I've done semi-okay in the eating department. I stuck to mostly mushy food and handled it okay. I'm tired and just feeling worn out in general but managing with things alright considering. And the shower today helped a lot! I'm staying de-accessed (if I can manage it) through the day tomorrow so I can take a bath tomorrow afternoon but if I'm feeling too sick I may have to access Winnie (my port) when I get home from work. Tomorrow's agenda includes work from 10-2 and then an appointment with my homeopathic nurse practitioner mainly since she's known me since I was little and hopefully can offer some suggestions, maybe have some ideas of new PCPs for me to look into, and just generally listen to me. And I'm hoping to get a chance to watch Charlie and the Chocolate Factory which I have from Netflix right now so I guess I'll plan that for tomorrow night (although it may not happen). And a bath in there if I have the energy and don't feel too sick after work.
This has become a very long update and I didn't intend it to be so I'll stop there. Thanks so much for stopping by to see me! I hope you all have had a great week and have a great weekend!
Thursday, March 2, 2006 11:11 PM EST
--Martin Luther King, Jr.
Hi Everyone,
Nothing much to report about today. I slept as late as I could (noon) before getting up, dressed, and out the door to work in the snow. Yep, it's been snowing here all day and building up but I'm not sure how much we got (and don't have any pictures for all of you). Anyway, work wasn't bad and I only stayed until 3:30, stopped at the bank, and then came home and spent the rest of the day in bed with my computer and TV. I got to talk to Diana and Tara (who by the way did pretty well at the ER last night, go to her page for more info on that and to leave her some good thoughts!). I'm really tired and my stomach doesn't like me for pushing oyster crackers into it all day long (better on the calories today, though). Right now I'm having issues with reflux but it's not horrible so not worth going on about.
On a slightly more exciting note, my dad got my frequent flyer tickets for my west coast trip in May/June! Yay! I'll be going to visit the wonderful Tara first at the tail end of May for a few days and then take the train up to visit my sister in Oregon for a week. I'm really excited for the trip in general and especially to be able to meet Tara! And it's so awesome that my dad was able to get frequent flyer tickets for me because there's no way I'd be able to afford the tickets with my income the way it is right now. And, on another semi (but slightly less) exciting note, I've also decided to go to the Hope to Heal Lyme Conference the first weekend in April. I was going back and forth on whether or not to push through and make it but I finally decided I need something to look forward to and I really want to go (and my parents said they could help pay for it) so I decided to go for it! I registered yesterday and my roommate booked the hotel room (I roomed with her in-laws last year during the conference but she opted to stay at a hotel near the conference this year). So now I just need to commit to a flight and I'll be all set for that, too! Lots going on and I'm looking forward to it all.
That's it for me tonight. I hope you all had a good week (I can't believe it's almost the weekend!) and have a good Friday tomorrow! Please continue to keep Lexie (girl from my church) in your thoughts as well as all the other Caringbridgers going through rough times. Wishing you sweet dreams!
Wednesday, March 1, 2006 10:34 PM EST
but the bumble bee doesn't know it so it goes on flying anyway."
--Mary Kay Ash
Hi Everyone,
Today has been a very low-key day for me and I'm not complaining at all about that, I really needed a "club bed" day (as Tara calls them) after a few busy days. I slept in late (until 2:00pm) which I'm really glad I had the opportunity to do but it's kind of annoying that my body feels the need to get so much sleep and sleeping so late throws off my sense of time (like 4:00 feels like it should be noon!) but...oh well! I basically spent the day resting in bed in my PJs, watched some TV, spent quite a while online doing this and that, and got to talk to Diana, Tara, and Sarina this evening. Tara could really use some good thoughts as she's not doing well right now.
Health-wise today things haven't been great but not horrible. I've had trouble with food (nothing new, I know, but it seems it's been a bit worse today) and more abdominal pain this evening but my rice packs helped with that. This morning...err...afternoon when I got up I decided to give cream of wheat a try and made up a packet of it with a little honey. I was able to tolerate it okay but only managed to eat about half of it or a little less which isn't great but at least I'm figuring out what other foods I can tolerate (or semi-tolerate). I've been keeping a record of everything I eat so I can keep track of the claories I'm able to get in and it's been a bit discouraging lately to go and add up my calories at the end of the day and be so far below where I thought I was. The whole situation is just exhausting for me and I'm so tired of dealing with it and having food be so stressful! I just need to feel like I'm getting somewhere and right now, although I do feel like things are going in the right direction, I feel like it's going at a snail's pace. I will do what I can do and try to be okay with the rest of it but I'm just frustrated right now. Thanks for listening!
Well, that's it for me. I'm hoping to get to sleep at a somewhat normal time tonight since I can't sleep in tomorrow (I'm working at 1:00pm) but I'm not sure if that's going to happen. Thanks so much for stopping by to see how I'm doing! Please continue to keep Lexie (girl from my church) in your thoughts (see the journal history for more info about what she's dealing with) as well as Tara as I mentioned earlier and all the other Caringbrige kids and adults going through rough times. I hope you're all having a really good week and continue to have a good week! Sweet dreams!
Tuesday, February 28, 2006 10:59 PM EST
Accept no one's definition of your life; define yourself."
--Harvey Fierstein
Hi Everyone,
A shortish update tonight as I really want to go to bed. Today wasn't the best day for me but it went by fast (days tend to do that when you sleep 'til 1:00pm). I had my theater class this afternoon and it went well. The kids really are great but it's a little slow going right now trying to have them get to know each other and get working on their monologues and have me figure out how much they can handle and how to cast the scenes I've chosen so far. Anyway, after theater class I went straight over to church and rested until choir (not very long) and stuck it out until the break but then came home. I talked to a few people at choir and they're all concerned about me and thinking about me and it was nice to see them after missing church on Sunday. I also got to talk to Lexie's mother. You might remember I've been asking for your thoughts about Lexie. Lexie is a great little girl who has a brain tumor (she's had it for her whole life) and it's been stable but when she had her last scans done they compared them to scans done in 2004 and there was some change which is not good. The concern is that it is very close to her optic nerve and if it grows it can affect her vision. It's scary and I'm worried about her so if you could continue to keep her in your thoughts I would really appreciate it. Alice said she's been thinking about me a lot and really hoping we get my health stuff sorted out. She and Lexie have been a great support for me (Lexie and I were port buddies for a while while Lexie was on chemo - she got her port in about 6 months before I got Winnie put in and she got hers removed last summer) and I feel blessed to have them. Today I also got a call from the minister at my church which was nice. She wanted to check in to see how I'm doing and she's going to come by and visit next Tuesday which will be nice, we'll get to talk a little more in depth about what's been going on and how I've been doing. And I also got a nice card in the mail from some other people at church today. It continues to amaze me what an outpouring of support my church family provides for me.
Health-wise today things have been so-so. My stomach is being its usual difficult self but I was able to eat some oyster crackers and one of Diana's adapted oatmeal cookies as well as some popsicles (I've unfortunately come to the conclusion that some of the tropical ones are just too rough on my stomach, especially the pineapple ones which I really like but just make me feel so sick). Other than that, nothing much going on. I've been sleeping a lot when I'm able to sleep but mainly at night since I have problems sleeping during the day (I've always had that problem). I'm sleeping close to 12 hours a night but I'm fine with that when I don't have anything I have to be doing. Unfortunately some nights I have trouble falling asleep (last night I was up until about 2am) but that comes and goes.
Okay, so I guess this didn't turn out being such a short update! Thanks so much for coming by to see how I'm doing. I hope you're all having a good week so far and continue to have a good one! Sweet dreams!
Monday, February 27, 2006 10:30 PM EST
You turn around before the lightening strikes
And does it ever make you stop and wonder
If all your good times pass you by..."
--Sheryl Crow
Hi Everyone,
Well, Mondays are definitely rough for me. The drive up to Boston and back along with the actual time spent in class wears me out a lot and by the time I get home from that I'm definitely ready to just curl up and spend the rest of the week in bed! Since I didn't finish up my homework yesterday I had to set my alarm for 11:00am (I know, it doesn't sound early to most of you, but for me it's difficult to wake up then). I spent a while trying to wake up, checking e-mail, checking in with some Caringbridge friends, etc. before waking up enough to finish my homework, which I did finish. Then I made a quick call to Dr. Berman's (GI) office to see if the results of my GI series were in yet but the receptionist (I guess that's who I talked to) said that Dr. Berman will call me when the results are in. I felt a little brushed off but if I don't hear from Dr. Berman in the next few days I'll call again and just leave a message for him to call me. Anyway, then I got dressed and all ready for school and made it out when I had planned. I made it up there and found a (handicapped) parking space without any trouble and had about an hour and a half before class so I spent it in the computer lab at the library researching some stuff for my possible final paper topics. It was freezing here today (the "feels like" temp was down in the single digits) and walking across campus was pretty frigid but I managed. Class was fine and the drive home afterwards was uneventful (but really cold during the beginning part until I managed to get the heat going). When I got home I got right into my PJs, heated up my rice packs for my abdomin, and tucked myself into bed. I still have a little while left of my saline so I won't get to bed for a bit (I had to stop the infusion for the drive home because my pump batteries were low and I didn't have any new ones with me - stupid me for not putting new ones in my little supplies bag in my backpack after using up the last set on Saturday).
Health-wise, nothing much to say today. My eating on Mondays is always pretty bad because I'm out and about and not concentrating as much on it and also I think the activity makes me feel sicker in general. But I'm trying to get in a mini muffin now and I snacked on some oyster crackers on the drive home so at least I've gotten something in. I'm mostly just exhausted and need to get a good night's sleep. Tomorrow I get to sleep in as late as I need to! Yay! I have my theater class from 4:30-6 and then choir rehearsal (as much of it as I can manage).
Before I sign off for the night, I have to mention something I really should have talked about yesterday. As I did mention, I didn't make it to church yesterday. My dad did go and when he got back he told me that tons of people were asking him how I was doing and telling him that they were thinking about me. Someone also lit a candle and asked for healing thoughts for me during Joys and Sorrows which means a lot to me. In the afternoon my mom went to a party with people from my church and again people were asking how I was doing and sending good thoughts my way. And then again in the evening my parents both went to a concert where there were some people from my church and there were people again asking about me. I feel so blessed to have such a caring, supportive church family that notices when I'm not at church and thinks about me so much. I didn't realize until this latest crash that is so visible to everyone (with the weight loss) just how much my church family means to me.
Okay, that's it for me tonight. I'm slowly working my way through my mini-muffin but feeling sick so I'm a bit frustrated. (This is just a plain applesauce muffin! Nothing weird in it!) But, oh well. Thanks so much for stopping by to see how I'm doing! I hope you all had a good Monday and continue to have a good week!
Sunday, February 26, 2006 11:27 PM EST
--Grey's Anatomy
Hi Everyone,
Today wasn't a very exciting day for me, but that was pretty much by choice (or more like by necessity). I didn't make it to church which I suspected would happen. My alarm went off at 9:30am, I opened my eyes, decided to give it one snooze cycle to think it over, but when the alarm went off again I decided it just wasn't in my best interest to drag myself out of bed, especially with tomorrow being my school day. So I slept until after noon (I can't remember if it was right around noon or 1:00 when I woke up for good), did some stuff online, watched some TV, and mostly just rested. I did end up trying out adapting some muffin recipes and made a batch of gingerbread mini muffins and plain (well, applesauce) mini muffins, both fat free and low sugar. I tried one of the gingerbread ones and it was tasty but I was feeling so sick by the time I finished making them that it was hard to tell if it made me sick or not. I'll try it out again tomorrow. I did a little homework today, too, but still have a little to get done before I go to school tomorrow (I hate that it's not done already but that's how things have been for me lately, I'm just glad it's getting done at all!). And I watched Grey's Anatomy tonight, of course - great as always. I've decided that when I get this month's paycheck I'm going to order the first season on DVD because it's really not that expensive and I really need to have it for days when I'm not feeling great. (Plus I missed the first few episodes when I wasn't watching it yet.)
Health-wise, my headache from last night didn't follow me into today which I'm happy about. My stomach has been so-so but my eating has been a bit better than yesterday so that's good. I think I've decided that I can handle one of Diana's adapted oatmeal cookies a day if I eat it very slowly and carefully plan when I eat it (make sure I don't eat anything else close to it) but it's nice to have something else to eat. I think that's how some of these adapted things I'm trying are going to be - tolerable if eating in small quantities, very slowly, and far away from other food. But at least I have a little more variety on my good eating days! It still doesn't really up my calorie intake which isn't good so I'm still in a bad situation there. Anyway, I'm tired and need to get to sleep so I can actually make it up to school tomorrow. If it weren't for the fact that I didn't have class last week (President's Day) and I don't have class next week (Spring Break), I would strongly consider not going to class tomorrow but I really feel like I have to go if at all possible. So, off to bed I go! (Well, actually, I'm already in bed, I guess it's more like off to sleep I go...I hope.)
Thanks so much for stopping by to see me. I hope you had a great weekend! I'm sending lots of good vibes out to you!
Saturday, February 25, 2006 11:03 PM EST
--Robert Heinlein
Hi Everyone,
This is going to be short because I'm ready to head to bed and not up to typing a long update. Today wasn't very exciting - woken up by my alarm at 11, checked my e-mail, got up and dressed, worked from 12-2, did a quick errand and came home and basically spent the rest of the day in bed. I told you it wasn't exciting! I had plans to try out some adapted muffin recipes but was so tired when I got home from work that I decided that would have to wait and opted to just spend some time looking through some more recipes online to get some more ideas. Tomorrow I'm hoping to make it to church but I'm not completely sure if I'll make it (I have a sneaking suspicion that my alarm will go off and I'll just turn it off and roll over and go back to sleep until the early afternoon, but I'll at least try). I also have homework I need to get done tomorrow (I got some done at work today but not as much as I would have liked).
Health-wise today things have been so-so. Not one of my best eating days but not one of my worst so I'll take it. Right now, though, I'm feeling pretty queasy and my head is really starting to hurt (I just took a Frova (migraine med) so hopefully that will stop the headache from getting too bad) so I'm going to stop there. Thanks so much for stopping by to see me. I hope you all are having a great weekend so far! Sweet dreams!
Friday, February 24, 2006 10:41 PM EST
Even after all the promises you've broken to yourself
All will be well
You can ask me how but only time will tell
--The Gabe Dixon Band
Hi Everyone,
Well, as you can hear (I hope), I've changed the music on here. Now you're listening to "All Will Be Well" by The Gabe Dixon Band. You may recognize this song from the previews for the show "Conviction". That's where I kept hearing it and every time the preview would come on, I kept thinking, "I love that song, I need to find out what it is." But of course with a swiss cheese/jello brain like mine, as soon as the commercial ends some other thought such as, "My foot is asleep" pops into my head and edges out the thought previously occupying that space. But tonight I finally searched and found the song and I must say I really do love it and I thought it was fitting so I wanted to share it with all of you! I hope you enjoy it! (You can download it if you go to The Gabe Dixon Band website but it's a slightly different version than the one I have on here.)
Okay, now as for my day today. I got woken up at 7:30am for the second day in a row by one of the nurses at Dr. Hood's (PCP) office calling my cell phone. I'm not comfortable with the office and in the process of leaving them so I don't answer when I see it's them calling, but I was quite ticked off at them calling me that early in the morning. I mean, I understand they have to call when they have a chance and the office is quiet, but come on! Seven thirty in the morning??!!?? Anyway, so I woke up long enough to quiet my phone, wait for them to leave a message, check the message (nothing important), and then I went back to sleep until about noon. After doing some stuff online and eating some baby food rice cereal (yummy!) I got myself all set up to take a bath (yep, Winnie was de-accessed today). My bath set up is interesting - I set up a folding chair in the bathroom next to the tub and bring my laptop in and set it up on the chair with a DVD in it so I can watch something while I'm soaking in the bubbles and relaxing. Today I watched an episode of Friends from the 6th season that I just got in the mail this week. It's a great way to take a bath and then I finish up with a shower to wash my hair and I'm all clean and good to go! I scrambled to re-access Winnie before heading to work at 3:00 for just a few hours and I had some problems with the dressing change kit my infusion company sent me. I think they sent me the wrong thing but I'm not 100% sure (I e-mailed them but haven't heard back yet). Anyway, work was quiet and I didn't get anything done really (hoping I can get more done while I'm there for a few hours tomorrow). When I got home I baked a batch of my signature "Inside Out Cookies" (chocolate with white chocolate chips) for a fundraiser at my church tomorrow (I'm not planning on going but I said I'd bake something and my parents are going so they'll bring the cookies with them). Now I'm just resting, I got to talk to Diana and Sarina, and my saline is almost done infusing so I think it'll be an early night for me (I hope at least).
Health-wise, today wasn't awful but it wasn't great. I'm still trying to decide if the adapted oatmeal cookies are things I can tolerate. They do definitely cause nausea and some pain but it's hard to figure out how bad it is, especially with the complications of the GI series this week. I'm planning to try out a few adapted recipes for muffins tomorrow if I'm up to it. I'm getting to the point where I'm not sure if it's worth the amount of energy I'm expending trying to find things I can eat if nothing seems to be tolerable. But the cookies seem to be at least semi-tolerable right now and maybe I'll hit on something else soon.
That's it for me tonight. My saline is about to finish so I better wrap this up! Thanks so much for stopping by to see how I'm doing. I hope you all have had a great week and have an equally great weekend!
Thursday, February 23, 2006 11:59 PM EST
--Unknown
Hi Everyone,
Well, today was quite the long day for me but it was long for good reasons so I'll take it. I got up semi-early for me (haha, kind of sad that 11:15am is considered early to me but my body is just screaming at me lately that it needs a ton of sleep at night and I can't really ignore it when it screams so loud). I lay in bed for a little while, checked e-mail and did the usual quick rounds online before getting up and dressed and hooked up to my saline. My mom and I went to Providence and met up with two of our Lyme friends and past Lyme Out Retreat participants, Barb and Janette (pronounced Yanette), for tea. We had a really nice time catching up, chatting, venting a bit about each of our doctor and treatment problems, and just generally being around people who understand. We don't live that far away from each other so we really ought to get together more often and hopefully we will from now on. It's great therapy and I'm so glad we were able to do it. On the way home afterwards my mom and I stopped at the natural foods store and I got a few new things to try - almond milk (still have to try rice milk, too), Amazake drinks (I didn't realize until I got home that these are really pretty full of sugar so we'll see how that works for me), and some low fat ramen-type noodles. Then a quick trip to the grocery store to get a few more things (including some things to make Diana's adapted oatmeal cookies) and home. (At the grocery store they had the sugar free Tropical flavored popsicles! It was quite exciting because now I have six flavors of popsicles to choose from instead of the boring regular three. Yeah, I'm easily amused.)
It was quite a long day out and about and I was really exhausted by the time I got home (and hadn't managed to really eat anything all day, but I did have my gatorade bottle that I was working on). But even though I was really worn out I decided to make Diana's oatmeal cookies because I was really itching to try them out and see if I can tolerate them. I made a few adaptations of my own so I guess now they're not technically completely Diana's recipe but they're pretty close (I just made them lower fat - almost fat free). So I made them and tried one out and they're pretty good (they get my family's approval, too) but I did still end up feeling pretty nauseous from it. It wasn't as bad nausea as with some food and I'm not going to give up on the cookies, I'm going to give them another try and maybe I won't be as nauseous when I'm a little further out from the GI series (I can tell that's still messing me up a bit). Oh well. I also have a few recipes for muffins I'm going to try. I'm trying new things but it's hard to keep trying new things when everything just makes me feel sick! Not going to vent about that, just a little frustrated. So I've spent the evening watching the rest of the ladies figure skating on the Olympics and it's about time I headed to bed so I'll wrap this up. Tomorrow I get to sleep in but I do have to go in to work for a few hours (I wasn't going to be working tomorrow but my boss called me today and asked if I could work for 2 hours tomorrow and 2 on Saturday instead of 4 on Saturday). I also have to bake cookies for a fundraiser at my church on Saturday and hopefully try out some muffin recipes that I can maybe tolerate! I'm glad I'm getting a chance to bake again, but if everything I try baking ends up making me feel sick I'm not sure how long the baking will last (I'll just have to keep telling myself, "The next recipe will be the one!").
Thanks so much for coming by to see how I'm doing. Please continue to keep Lexie (a little girl from my church) in your thoughts and hope that her tumor does not impact her eyesight. I hope you all had a good day today!
Wednesday, February 22, 2006 9:48 PM EST
And the fear struck fearless be.
May the grieving shed all grief -
And the sick find health relief.
--Zen chant
Hi Everyone,
Overall I have to say today wasn't one of my better days. I think a lot of it has to do with just dealing with the residual effects of the GI series and barium yesterday, but I've been dealing with worse nausea than usual and it's made it rough to try eating. It's always something! Anyway, I slept 'til about noon, quickly did some things online, got dressed and ready for work, and made it out the door and to work for 1:00. Work wasn't bad but I had to do more actual work than usual (mostly a small mailing for our summer art camp). I got to leave work around 4:30 but had to swing by the post office to get stamps and send off the mailing I had put together. Since getting home I've just been resting, watching some TV, and doing some stuff online. I finally got a package in the mail of a few DVDs I won on Ebay including season 6 of Friends which I'm really excited about! I'm slowly collecting all the seasons. I also got an e-mail from my great friend Diana with the recipe for the adapted oatmeal cookies that she lives off of (lol) and I'm going to try making some later this week to see if maybe I can tolerate them. I need to find something I can handle and cookies would be great! (I'll need to swing by the store before I can make them to pick up a few things so I'll have to plan my energy well.) I also have a few other recipes for muffins (I'll make them mini-muffins) to try (I'll adapt them to make them low-fat and low-sugar) but I'm still on the look out for more that might be easy to tolerate and are 1) low- or non-fat, 2) low- or sugar-free, and 3) dairy free (or dairy optional). If you have one to suggest, send me an e-mail (penguini1982@yahoo.com) or leave it in the guestbook!
Health-wise, as I said before, I'm not feeling great. I've been really nauseous, especially whenever I try to eat or drink anything. Usually I can handle a little bit of food without feeling too awful but today it's just been ten times worse than usual. I decided to try the Slim Fast shake today and it really doesn't taste bad (it's chocolate flavored - the low carb one) but it was making me so nauseous that even sipping it periodically throughout the day at work was getting to be too much so I had to stop. But at least I did get in some of the shake, I guess that's a positive. I thought maybe it was just the shake that was making me nauseous so this evening I decided to try some baby food and now I'm feeling really sick again (usually baby food is one of the safest things I can eat) so I think I just need to call it a day and hope tomorrow is better. I opted to get in some Miralax today and yesterday to hopefully get the barium out of my system and hopefully it'll help.
Tomorrow is going to be a fun day - I get to go have tea with a few of my Lymie friends in Providence and I'm really looking forward to that. I hope I hold up well (my mom is going, too, so she'll be driving) but I'm sure I'll have a good time regardless. But I need to get some sleep and really rest up. Please continue to keep Lexie (a little girl from my church) in your thoughts and hope that her tumor does not impact her eyesight. Also please keep Tara in your thoughts as she'll be travelling tomorrow and doesn't need any complications! Thanks for stopping by to see me and I hope you all had a great day today. Sweet dreams!
Tuesday, February 21, 2006 9:14 PM EST
Now is the time to understand more, so that we may fear less."
--Marie Curie
Hi Everyone,
Well, I had an early morning today. I guess after sleeping in until 2:00pm yesterday I needed to even things out somehow so having to wake up at 6:45am was one way to do that (not the way I'd choose). I managed to get up, threw on the clothes I so smartly laid out last night (yes, I do have my more intelligent moments), and my mom and I left the house more or less on time. I got checked in, changed into the johnny (why don't they let you leave your own t-shirt on but take your bra off?), and shortly thereafter got taken in to start the tests. The first part of the test (the actual upper GI series) went easily enough. Can I just say I don't understand why they try to flavor barium at all, it almost makes it worse. I gather the disgusting stuff I had to drink today was supposed to be berry flavored (which I assume just because that's what it most likely was meant to taste like but it didn't taste like it at all).
Okay, anyway, back to the test. After the first cup of barium for the upper GI they gave me another cup of it and sent me back into the hall to my "home base" for the morning. After drinking that down they took x-rays every half hour until the barium had made its way through my intestines which took just over 2 1/2 hours, I believe - a lot of waiting. I brought lots of stuff to do so I read a chapter for my class and read some monologues and scenes for my theater class. All in all I felt quite productive for being stuck in the hallway in a johnny with barium running through my intestines and getting x-rays every half hour! So, once the barium made its way through my intestines they took some more specific x-rays and I was outta there! The radiologist doctor guy (I'm not sure exactly what he was) told me that everything looked normal so at least I know nothing was really bad but I'm going to wait for the final word from my GI. I'll be sure to update you all as I find out the final report and what the next step will be. So I spent about 4 hours total at the clinic for the test and the rest of the day in bed resting. Now I'm watching the Olympics (women's figure skating short program is on tonight! yay!) and planning on an early bedtime tonight to try to compensate for the early wake-up this morning.
Health-wise today I've been more nauseous than normal but I blame that on the barium (it's a convenient thing to blame, isn't it?). Because of that and the long time spent at the clinic not being able to eat or drink I didn't get that much food in today but tomorrow is another day! Tomorrow I have the intention to try one of the Slim Fast shakes I bought to see if I can possibly tolerate them. I figure I'll dump the can into a travel cup and take it with me throughout the day (I'm working tomorrow so that'll be convenient...sort of). Other than the nausea, just more abdominal pain (also blaming the barium for that) and generall worn out. Nothing new.
I just have a few requests of people to keep in your thoughts. There's a little girl from my church, Lexie, who has had a brain tumor since she was born. The tumor isn't a fast growing, really dangerous one but when it grows it presses on her optic nerve and has the danger of damaging her eyesight. Her latest scans showed some growth so she could use a lot of good thoughts and positive energy. Also please send Tara some good thoughts as she prepares for her trip to Mayo (and to Florida before that) and to Sarina who isn't feeling very well. Thanks so much for stopping by to see me! I hope you're all having a good week so far. Sweet dreams!
P.S. I would really like to try baking something I could possibly actually handle eating so if anyone has any recipes for really low-fat or non-fat, low-sugar or sugar-free muffins or cookies, especially something that you know is easily digestible, I'd really love it if you'd share them with me! Thanks!
Monday, February 20, 2006 10:26 PM EST
--Mark Twain
Hi Everyone,
Today overall wasn't a bad day. Not a productive day, but not really a bad day so I'll take it. I slept in, and this time when I say slept in I mean slept in - I woke up for good at 2:00pm. Yeah, I guess I needed some sleep after 2 mornings in a row of getting up early plus not getting to bed until almost 2am (I was up talking to Sarina until late). Then I got up, heated up some Rice Cereal with Apples and Cinnamon (one of my favorite babyfoods), checked my e-mail and stuff, and then got dressed and made it out to watch the rehearsal for 101 Dalmations at the art center. It was nice to be able to watch the rehearsal (although it's really early in the rehearsals and since it's school vacation it was a very small rehearsal) but I'm glad I've decided to step back and not be involved fully in this show because I definitely think my energy would be way too thinly spread (plus it just wouldn't be possible since I usually have class on Mondays). Since coming home from the rehearsal I've been resting, had some Jello which didn't sit all that well on my stomach (had a few tense moments there wondering if I should go wait in the bathroom for the Phenergan to kick in), and watched some TV. I had the intention of trying to do some reading for school but that didn't happen. (I'll bring my book with me tomorrow in case I have some waiting to do for the GI series.) Now I'm just watching some of the Olympics (ice dancing) and chatting with Diana.
Health-wise, not a lot going on today, just the usual stuff. I haven't been ambitious with food so other than that tense near-puking incident while waiting for the Phenergan to kick in I haven't been too nauseous or in too much pain. Nothing else has really been too bad, either, and certainly not bad enough to mention. So I guess I'll leave it at that and sign off for the night. It's weird how short the day seems when you sleep away most of it! I feel like it should be at least a few hours earlier than it really is, but oh well. Hopefully I won't have too much trouble falling asleep at a reasonable hour tonight seeing as I have to be at the clinic at 8:00am tomorrow for the GI series (I'm not good with mornings so that will be a fun day). I'll be sure to update tomorrow with news of how the test went (I won't have results yet though, I'm sure). Thanks so much for stopping by to see me and thanks especially to everyone who signs my guestbook! I love reading the messages everyone leaves! I hope you all had a good Monday and continue to have a good week!
Sunday, February 19, 2006 11:29 PM EST
--Grey's Anatomy
Hi Everyone,
Well, I'm happy to be able to say that today was overall a little bit of a better day for me. Not really a better day health-wise because I was still feeling pretty blah, but just overall. I started the day out by hitting the snooze button (I hate getting up to my alarm clock which means I have to get up before I'm (or I should say my body is) ready). But I made it up, got dressed (it was soooo cold so I made sure to dress for that), and got out of the house and to church in time for choir rehearsal before church. Today at church I just had a really good time. I talked to people, got a chance to catch up with some people I haven't had a chance to talk to in a while, and quite a few people came up to me during coffee hour and told me they were thinking of me and/or gave me hugs. I just feel so at home and accepted there. During the "Joys and Sorrows" during the service I took the opportunity to get up and let everyone know how thankful I am and blessed I feel to have such awesome friends in my life. I told everyone just a tiny bit about Diana, Sarina, and Tara and how great it was to have a 4-way phone call with them last night and to have them there for me through all this rough stuff. So, anyway, after church I stopped at the grocery store to pick up a few things (this morning I tried the Atkins shakes that I bought yesterday - they taste awful and I don't see myself forcing them down at all). I got the low carb slim fast shakes to try since they have very little sugar (they're essentially like the other nutritional drinks, just marketted towards people who want to lose weight) and also a bunch of sugar free pudding mix and some rice milk and non fat soymilk. When I got home I mixed up some chocolate pudding with half non fat soymilk and half water which worked okay but it ended up being not quite pudding consistency - somewhere between chocolate milk and pudding but it definitely tastes like pudding so it was still good and the thinner consistency isn't a bad thing since it's easier for me to handle that way. Since then I've just been resting, talked to my dad for a while, and now I'm chatting with Tara and watching some of the Olympics. Oh, and I watched Grey's Anatomy, first I caught up on last week's episode and then watched this week's when it was actually on so I got a double dose - both great episodes! (I need to save up to get the first season on DVD!)
Health-wise today, nothing particularly new to report today. I've been keeping my barf bucket close today as I've spent a bit of time this afternoon feeling very nauseous despite having Zofran and Phenergan on board. (I'm not sure if the pudding didn't sit well or if it was because I was trying to push the fluids, or maybe it was something else.) Not too much abdominal pain but I didn't push really hard with food. I've definitely spent the evening curled up with my heated up rice packs on my abdomin, though.
Okay, that's it for me tonight! Thanks so much for stopping by! I hope you all had a great weekend!
Saturday, February 18, 2006 8:31 PM EST
I sit and rest, and think of you.
Give my weary body peace.
Let my legs and arms stop aching.
Let my nose stop sneezing.
Let my head stop thinking.
Let me sleep in your arms.
--Dinka
Hi Everyone,
Early update tonight. I'm really foggy and exhausted so it might be a little incoherent - sorry about that.
Today has been long but pretty productive and it's ending pretty well! (You'll have to stick around until the end of the update to find out about the good stuff 
). This morning I woke up bright and early. Okay, so "woke up" is pretty strong. More like got out of bed while half asleep, got dressed, and made it out to work. Work was pretty boring but I did a lot of stuff online, spent a while on e-mails, printed out some info on Gastroparesis for my mom to read, oh yeah, and I did some actual work (there wasn't a lot to be done today). After work I made it over to the grocery store to get my "safe" foods and my brand of baby food was on sale! Yay! (It's really sad that I have a brand of baby food that I consider to be mine. 
Oh well!) So I stocked up on the kinds I like - yummy rice cereal with cinnamon and apples! I also got some new liquid nutrition drinks to try that have less sugar and/or are non-dairy so maybe I'll be able to tolerate them better than the ones I've tried before. I need to try to get in more calories but I need to figure out how much pain and nausea I'm willing to take. I'll experiment and see what I can do. When I got home I changed the sheets on my bed! All in all a very productive day! I also had a talk with my mom which was good - we really needed to talk because yesterday we had some major issues but hopefully things are okay now.And then the best part of my day! I had a 4-way phone call with my awesome friends Sarina, Diana, and Tara!
Okay, so technically I guess it would only be considered a 3-way call because Tara was asleep on her end. It was so cool to finally get to talk to Sarina and Diana and hear their voices! And hopefully I'll get to talk to Tara soon, too! I can't say enough how much these three awesome people have meant to me over the last few months (or even less than that - how long exactly has it been since all these GI problems started?). They have been amazingly supportive, been there for me whenever I've needed a friend to talk to, listened to my rants and vents more than once, and just basically been there for me whenever I've needed them. They're all younger than me, but somehow age doesn't matter because we have something in common that just levels our experiences - chronic illness. They are awesome friends and I couldn't ask for three better ones! 
Now I'm just exhausted and really foggy and blurry from Phenergan and my long day. Just trying to rest and infusing my fluids. Hopefully I'll have an early bedtime tonight (perhaps I won't wait for my fluids to finish - maybe I'll just go to bed now - that sounds like a good idea actually). Thanks so much for stopping by to see me! I hope you all had a great day today and continue to have a great weekend!
Friday, February 17, 2006 11:29 PM EST
and see who I am in the stories I live.
And together we will remember that each of us always has a choice.
--Oriah Mountain Dreamer, "The Dance"
Hi Everyone,
Nothing much to say today. I slept until about noon or a little before when my mom woke me up...twice to try to make me eat some mashed potatoes before she had to leave for an appointment. I'm not up for eating when I first wake up even on my good days so you can guess how that went. I realize she doesn't really know how to handle this whole situation, but right now she's really not handling things in a way that are best for me. The more she pushes me, the harder things are for me because I just get more and more stressed out. I don't think she understands that and she's just doing what she thinks is best and grasping at straws and doesn't realize what it does to me. Pushing me to eat seems like a good thing to do from her point of view but she's not the one that then has to spend the next few hours curled up in bed with a barf bucket worried that she'll throw up and in pain! She's scared for me and I can understand that. Today for the first time in a while I really looked at myself in the mirror and realized just how scary the weight loss is. But I really am doing the best I can with getting calories in and trying to balance that with the stress it brings. It's just been rough and I really don't need my mom (or anyone else) stressing me out even more by trying to force food on me that will end up making me feel so much sicker. Anyway, back to my day. So after I woke up I did some stuff online and then took a nice long bath. I did my whole set-up with a folding chair with my laptop on it and watched the beginning of The Incredibles while I soaked and it was really nice. Then I numbed up, re-accessed Winnie, hooked up to my fluids, and took a nap. The rest of the day was just spent in bed resting, watching TV, etc. I'm just finishing my fluids and chatting with Diana, Sarina, and Tara - they are some awesome friends.
Oh, and speaking of awesome friends, I got a great package today from Tara with a really cute little bunny rabbit and some tea and a few books about GI stuff. Tara is just such an awesome friend and the package came at a really good time because I was upset about stuff this morning (stuff I'm not going to get into right now, maybe some other time). Okay, that's it for me for tonight. Thanks for stopping by and thanks so much for everyone who has signed my guestbook. I really love checking and seeing all the great messages in there. I hope you all have had a great week!
Thursday, February 16, 2006 10:19 PM EST
I want to know if you have touched the center of your own sorrow
if you have been opened by life's betrayals
or have become shrivelled and closed
from fear of further pain.
--Oriah Mountain Dreamer, "The Invitation"
Hi Everyone,
The trend lately seems that I'm on a downward slope within my downward spiral - not what I want to be seeing. I'm just having so much trouble eating and it's all just catching up to me. I'm so weak and worn down by all of this. My muscles are giving out on me and it's getting harder and harder to be out and about in the world doing things. While I was at work today I had to go upstairs to turn the lights on and I pretty much had to crawl up the stairs because my legs just wouldn't work right. A part of me just wanted to sit down on the stairs and start crying but I kept going and made it through the day. I don't want to get all whiney tonight, though, so let me stop there. My day today wasn't all that exciting. I slept in until I had to get up at noon to get ready for work. Work was pretty quiet but I was feeling pretty nauseous and trying to get in food while there (snacking on oyster crackers - the best I could manage) so I took Phenergan which makes me tired. I was already really tired so I was even more tired then and having trouble focusing my eyes on things - it was just a little strange and I wasn't having the best time being there but I made it until just before 5:00 when my boss got back from running errands. Then I made it home, into bed, and fell asleep for an hour. And since then I've been watching some TV, doing stuff online, and chatting with people. I'm feeling pretty sick to my stomach (just took some Zofran so hopefully that will help) but my mom is really worried about my eating so she's making me eat some instant mashed potatoes. I know I need the calories and the food and the nutrition but I really don't want to feel sick from them. I'll just try to think happy thoughts and hope for the best and hopefully manage a few bites.
I'm just having a rough time right now and I don't really want to complain or write a depressing update or anything right now so I'll stop there. Maybe tomorrow I'll feel more like writing more. Thanks for stopping by to see me and I hope you all had a good day today!
Wednesday, February 15, 2006 11:31 PM EST
The trick is, knowing how to tip ourselves over and let the beautiful stuff out."
--Ray Bradbury
Hi Everyone,
Today wasn't a very good day. I'm just having a rough time of things lately but I'm trying to deal with it the best I can and just ride the waves until I can get things sorted out. I slept in again (I guess it stops being considered sleeping in when you do it consistently), did some stuff online, made a few phone calls (one to my GI to find out what the prep is for my GI series on Tuesday and one to my neurologist to update the NP on my headaches and see what she wants to do with my meds - just had to leave a message for her). I made my mind up that I needed to get out to run some errands - bank, post office, and Wal-Mart (I've been needing to make a return for a long time). I did manage to run the errands but it was a struggle and while I was at Wal-Mart (my last stop) I was feeling pretty awful but I walked around there for a while (with a shopping cart to lean on) and got some things to cheer me up: two cute little food containers to keep oyster crackers in (one has a smiley face on the top), a watermelon lip balm, a new (smaller) belt, and the best thing of all - The Incredibles on DVD. It was pretty cheap and I wanted something to cheer myself up so I know I'll enjoy that for a long time. I'll have to break it out and watch it soon. Anyway, after the errands I was really worn out and just feeling sick so I ate a few oyster crackers, took some Phenergan, and took a nap. This evening I manage to get in a jar of pear baby food but it's making me feel sick now. Ick. I've been trying to get in fluids today and I think I've done okay but not anywhere near to my "normal" fluid intake.
That's it for me tonight. I'm just having a little chat with my awesome friends Sarina, Diana, and Tara, who could all use some extra good thoughts, and I'll most likely turn in before too long. Thanks so much for stopping by to see me! I hope you had a good Wednesday and have a good rest of the week.
I was just looking through some things online and found this and felt I needed to share it. I have a feeling it will be popping up a lot in the near future.
Night Tears
There is a crying
that happens at night
that does not come
while the light is with us.
There are things that cannot
be evaded
once the sun goes down.
Small nocturnal creatures
with sharp white teeth
silently gnaw at the edges of
belly and heart
when the darkness descends
and the void inside
grows larger.
It can split you open.
And the bone
in the centre of your chest
aches
like the cracked wishing bone
from the turkey breast.
And if we are strong enough
to be weak enough
we are given a wound
that never heals.
It is the gift
that keeps the heart open.
--Oriah Mountain Dreamer
Tuesday, February 14, 2006 10:37 PM EST
"Maybe we're not supposed to be happy. Maybe gratitude has nothing to do with joy. Maybe being grateful means recognizing what you have for what it is. Appreciating small victories. Admiring the struggle it takes simply to be human. Maybe we're thankful for the familiar things we know. And maybe we're thankful for the things we'll never know. At the end of the day, the fact that we have the courage to still be standing is reason enough to celebrate."
--Grey's Anatomy
Hi Everyone,
Sometimes I just don't know how I'm still pushing through the days. I don't like to be negative and I don't like to complain but it gets to a point where it's just too much and it breaks through. I could push it down and pretend everything is all roses and sunshine and I'm handling things okay but I don't think that's fair to either of us, me or you. You're coming here to see how I'm doing, get a glimpse into my life (or maybe you have some other reason that I don't know of), and hiding things is just stupid. I don't know how I'm managing to push through the days and still do some of my regular things, even if it takes some creative arrangements. With my energy the way it is, my head as foggy as it's been lately, my food intake as low as it is, and everything just as rough as it is it takes so much more to push myself through. But someone passed along their stubborn streak (I think it's from my dad
) and there's something in me that...I don't know. Now that I've started writing about this I don't know how to adequately put it into words. This whole situation that I'm in right now is just so frustrating and trying and I'm ready for it to be over. I'm ready for my stomach to decide it wants to work again or for the doctors to figure out what they need to do to give me my strength back or whatever it is that needs to be done. I know this isn't exactly being gracious and accepting my trials but it gets to a point where you just shake your fists at the sky and ask, "How much more?" Nothing in particular happened today that brought on those thoughts. And I realize it's a little weird that it's Valentine's Day and I'm thinking about these things. And honestly, I didn't come here with those thoughts right there in the forefront of my mind fully formed. But when I started typing that's what came out. I guess, whether I realize it or not, those thoughts are always mulling around and needing to come out. So maybe I should try to let it come out here more often, if you all don't mind reading it. So, my day. It was a long day. I slept in quite a bit ('til about 11:30) then stayed in bed a while doing stuff online. I spent a while chatting with a new friend from a Gastroparesis group I joined and then decided to bake some Valentine's cupcakes for my Theater kids. I haven't baked since my stomach went on strike since it's not nearly as much fun to bake when you can't even try what you're baking. But I do still love baking so it was fun to do that (although it definitely took a lot out of me). So I baked mini-cupcakes and got to use the mini-baking cups that Diana gave me in my awesome Valentine's package! Then I did some manic photo copying of monologues for my Theater class and took off for it. The class went well and the kids all did great reading the monologues I gave them (all but 1 went home with one today so I need to keep searching for her - she just joined the class so I wasn't expecting her to be there, but I know her from a lot of past classes so I should be able to find one for her easily). Then I went off to choir rehearsal and heated up my "dinner" (I hesitate to call baby food dinner) at church and ate that as people were getting there. I got to chat with people and left at the break since I was totally exhausted. Now I'm just totally exhausted, nauseous (I'm really trying to get in the rest of this bottle of Gatorade but it's making me feel pretty sick so I may not make it), and just feeling pretty gross so I need to get to bed before I feel any worse. My eating today has been really awful (the baby food was pretty much it) but I won't dwell on it - I'm trying to concentrate on fluids a little more since my Dysautonomia seems to be getting kind of out of control and my fluid intake, even with the liter of saline everyday, is really low.
Okay, I'm off to bed and just hope my Phenergan kicks in soon! Thanks so much for stopping by to see me and I hope you all had a great Valentine's Day! Sweet dreams!
Monday, February 13, 2006 8:52 PM EST
and the way you treat them is what they become.
--Johann W. von Goethe
Hi Everyone,
Early update tonight because I'm planning an early bedtime tonight (like early as in as soon as my pump beeps and lets me know it's done and I can manage to get myself in bed). My day today was my usual Monday more or less. I slept in a bit but wasn't really getting very good sleep from about 10am on. I got up eventually and finished my homework and left for school around 1:30 so I'd have extra time in case I had trouble finding a parking space or there was extra traffic because of the snow. But the drive was really easy and I found a parking space really really easily (I actually wish there was a snowstorm every week). Class was good but I was very foggy and kept zoning out while Maya (my prof.) was talking so I probably only took in half of what she was saying. Oh well, better than not being there at all! The drive back was easy, too, but the whole day was really tiring for me and I'm just getting worn out from everything building up. So tonight I'm just resting, watching some TV, trying to catch up on some of the TV shows I taped last week but haven't watched yet (I'm really behind but don't watch that many shows).
I got a message earlier today from Dr. Berman's office (GI dr.) that my GI series is scheduled for a week from tomorrow. I thought it would be this week but next week is okay, I guess. The only possible problem is if the school vacation theater camp I was going to be teaching runs (as of right now no one has signed up so I don't think it will run and I think I need to tell my boss to just cancel it). I also got a message from my PCP's office that my CBC was "within normal limits" but I'm not sure what the numbers are so I need to call and get a copy faxed or sent over to me. Health-wise, not a lot to mention, just the normal stuff going on - abdominal pain, nausea, fatigue, etc. Eating hasn't been great but I'm not dwelling on it. I'm trying not to get depressed when I have a bad eating day, just take it in stride and hope that I do better tomorrow. At least I did better today than yesterday - I managed some oyster crackers!
I did have a little bit of an awkward situation in class today that I think I handled fine because I just pretty much avoided the awkwardness. Maya (the prof.) brought in a box of granola bars so each of us could have a little snack. The box had six bars and there's six of us in the class and she had her own snack so it would have been obvious if I didn't take one. She said we could take it for now or later or whatever we wanted. Of course everyone else took the bars without a second thought. I ended up taking one, too, and just put it in my bag and now it's in my drawer of snack food awaiting the day that I can eat normally again. But this little situation caused a lot of stress for me, especially when everyone else ate their snack during the break as we were chatting with Maya and I just sat there. I was feeling really nauseous all afternoon, otherwise I could have grabbed my baggie of oyster crackers and snacked on those so I didn't feel so weird but maybe that would have seemed more awkward. I don't know. I just really miss the time when I wouldn't have given a second thought to snacking away on a granola bar.
Okay, that's it for me tonight! Thanks so much for stopping by to see me. I hope you all had a great Monday and have a good rest of the week!
Sunday, February 12, 2006 10:53 PM EST
Hi Everyone,
Yep, we got some snow today. I don't know if it could technically be considered a BLIZZARD in my area because to be a blizzard there has to be winds of at least 35 mph and visibility of less than 1/4 mile for at least 3 hours and I'm not sure we met that criteria (although I know when I checked the weather when I woke up the visibility reported in New Bedford, the closest city to me, was 0 miles - pretty scary!). I have some more pictures of the snow storm and then I'll go on to my day (all the boring details). That first picture above is of the front of my house and across to my car (take from standing just inside the front door with it open a crack) and you can see how much snow we got although it doesn't really do it justice. I plan to take some more pictures of things tomorrow when the sun is out (at least the weather report says the sun is supposed to come out) so check back for those!
The side of the house
My car buried
The back yard (I don't know why but I love this picture)
One more of the back yard with the snow falling
And I really like this picture, too. My IV bag of saline hung up on the curtain rod with the snow falling outside and lighting it from behind.
Okay, so now onto my day. I slept in until noon but woke up briefly at around 11 long enough to realize I was nauseous and reach over, grab a Zofran, grab my cup of water, and swallow it down. My day was low-key. I spent a long time on e-mails and then also had a quick chat this afternoon with some people from the Gastroparesis Yahoo group I joined a few weeks ago and was (a mostly passive) member of a larger chat for the group this evening. I did some homework but didn't finish it all (still need to do my two-page written response but that shouldn't take me too long tomorrow). I'm not completely sure I'll make it to class tomorrow because I'm really worn out from the stressful week last week and I don't know what the state of the roads will be after the storm today but I'll do my best to make it. I did look into the commuter rail (train) times but it's really not convenient at all to do that so it's pretty much driving or nothing. Health-wise today things have been so-so. I didn't push it with food at all today and just basically stuck to clear liquids (had some broth, jello (that didn't sit wonderfully), and a few popsicles along with drinks) and tried to give my stomach a little bit of a break. Even with that I'm having pain tonight but I'm dealing with it okay. I've also just been really groggy and fuzzy and tired all day so I think I need to just go to bed right now. Tonight is Grey's Anatomy night but I knew I wasn't going to be all that "with it" so I'm taping it and I'll have to set aside a time to catch up with all my shows (I still have Gilmore Girls and House from last week to watch, so basically all my shows, lol).
Thanks so much for stopping by to see how I'm doing! I hope you had a good weekend and if you're in the northeast (or anywhere else that got hit with a lot of snow this weekend), take it easy and good luck digging yourself out!
Saturday, February 11, 2006 10:19 PM EST
--Hazrat Inayat Khan
Hi Everyone,
First of all, if you missed yesterday's quite eventful updates, make sure you go into the Journal History and read them. Now, on to today! Today was a long day and I'm really worn out and just overall not feeling great but it was a good day so it all evens out I guess. My alarm started going off at 8:15 this morning so I could get up, dressed, and out by 9:00 to run some errands before work at 10. I'm not good with early mornings at all and for me anything before 10am counts as early morning. So, one hit to the snooze button and I was fast asleep again. Alarm went off again 8 minutes later and I knew I couldn't hit the snooze again so I tried checking some e-mail while I woke up still lying in bed but I promptly started falling back asleep so after 10 minutes of that I decided I had to get out of bed or I was in danger of not making it out of the house at all! Anyway, I made it out and ran my errands and got to work. Work was quiet (probably 4 or 5 people came in, 1 phone call all day) - I got quite a bit of school reading done and answered some e-mails when I needed a break from that.
And after work I had a few minutes to hook up my saline before my Lymie friends, Jack and Barb (husband and wife), from the Lyme Out Retreats came to visit! It was great to have them come see me and we had a wonderful afternoon sitting around in the living room catching up, talking about this and that and everything in between, joking around, and just enjoying the company. Jack and Barb both have Lyme and have their own ups and down and Jack has been having GI issues for the last week or two but hopefully they're getting better. It's amazing how much we all have in common just by having the same disease! Barb also has NMH (Neurally Mediated Hypotension, another name for NCS, i.e. Dysautonomia) so we have that in common and she has a lot of vagus nerve problems and a lot of quirks that I think are normal I'm learning aren't! Like for example, I didn't realize until today that it's not normal for people to get nauseous when they have the hiccups! LOL So, anyway, it was a great visit with them and I really hope I get to visit with them again soon. Maybe when I'm feeling a little better I'll be able to pay them a visit in Providence! They also brought me a great gift of some lavendar foaming bath which was very sweet and I'll really enjoy (I think I may need an extra de-accessing day this week for a bath!).
So today was just very long and I'm really worn out from it. I was practically falling asleep at work this morning but I did perk up throughout the day a bit. Not a great eating day but that meant less abdominal pain throughout the day (only managed some babyfood applesauce at work and then nothing until this evening when I tried some broth and too many oyster crackers). Now I'm just feeling really tired, nauseous, and having abdominal pain from the oyster crackers and a bit of a headache that's been on and off through the day. Soon my saline will be done and I can go to sleep, though, and tomorrow I can sleep in as late as I want. Church has been cancelled due to the blizzard headed our way tonight (we're due for 12-15" of snow tonight and through the day tomorrow!) so I can stay in bed tomorrow and finish my homework and watch TV and rest and sleep and basically take it easy.
Tonight I want to leave you with something I came across in a book I got out of the library called "Prayers for Healing".
If you cannot refuse to fall down,
refuse to stay down.
If you cannot refuse to stay down,
lift your heart toward heaven,
and like a hungry beggar,
ask that it be filled,
and it will be filled.
You may be pushed down.
You may be kept from rising.
But no one can keep you from lifting you
from lifting your heart toward heaven -
only you.
It is in the middle of misery
that so much becomes clear.
The one who says nothing good came of this,
is not yet listening.
--Clarissa Pinkola Estes
Thanks so much for stopping by to see me. I hope you all have a great rest of the weekend! And if you're in the northeast, I hope you dig yourself out of the snow alright! I'm thinking about you!
Friday, February 10, 2006 9:35 PM EST EVENING UPDATE
Okay, I wasn't going to do an evening update but I have a quick thing to add that happened tonight. Please do read through this afternoon's update, too (below this one).
Tonight at 7:30pm (yes, on a Friday) my GI, Dr. Berman, who I thought didn't believe I possibly had a motility disorder and had written it off as a simple case of constipation called me to see how I was doing. I was surprised but in a grumpy mood and kind of confused as to why he was calling. I told him I wasn't doing well and we talked about what was going on and everything (didn't talk about my PCP appointment at all), how I'm still having awful symptoms, the Miralax he prescribed only caused diarrhea, and if anything the symptoms are worse now than they were before and my life is really disrupted and I'm not able to do much of anything right now. So, first he said he wanted to do an endoscopy (I had one done in October 2004 while having the same kinds of symptoms and it was normal). I was okay with that. Then I asked about whether he thought I could still have a motility disorder even with my normal GES (gastric emptying scan) and he said yes. That was good to hear from him (I already knew it was possible, just wanted to hear what he thought). I asked what he would want to do if the endoscopy is normal and with that question he decided to change his mind so now I'm going to have an upper GI series done sometime next week (to be scheduled). If that's normal then he said the next step would be to refer me up to Boston to a motility doctor/clinic up there. He brought this up himself! I was so surprised because this is what I was trying to get someone to do! The GI I had written off as not believing I could have GP is now doing what I wanted him to do! So all is not lost for me and I don't feel nearly as stressed or hopeless. I don't feel as frantic to find a new PCP because I at least have a GI who is doing what he's supposed to do and will go the distance to find out what's wrong.
I'm just amazed at this turn of events. It's so weird how things happen! It's so comforting to know that my GI knows that a normal GES and a normal upper GI doesn't mean a whole lot and is still willing to refer me up to Boston for more specialized testing. I feel so much better knowing this. And it's amazing the timing that this all happened. If he'd called last night or a few nights ago, I'd have had a completely different reaction and not have been so grateful for it. And if he'd called next week I would have been a lot more hopeless and have already probably sent an e-mail to Dr. Hood or something. Who knows?!? Things happen at the right time, I guess. My dad brought up this quote tonight, When you come to the end of all the light you know, and it's time to step into the darkness of the unknown, faith is knowing that one of two things shall happen: Either you will be given something solid to stand on or you will be taught to fly.--Edward Teller It really rings true in this situation.
Well, I just wanted to leave you all with some good news for a change. I hope you all have a good night. I'm going to head to bed soon so I'll be somewhat rested for work in the morning. Thanks for stopping by! (If you haven't read this afternoon's update, go on to read that now if you have the time! It has some important info!)
Friday, February 10, 2006 1:24 PM EST
Each will grow despite harsh
conditions and beautify its
surroundings.
Like a tundra bloom,
the most striking and beautiful
flower is the one that blossoms
despite frigid, brutal conditions.
--Judith Garrett Garrison & Scott Sheperd
Hi Everyone,
Sorry for no update last night. It was a long and pretty stressful day and I ended up talking to my dad until about 1am so I wasn't in much shape to write any kind of an update at that point. Things are still kind of up in the air and very much stressful for me at this point so bear with me (this may be a bit of a vent but I'm going to try to keep it in check a bit and just stick to a relay of things).
So, yesterday morning I had my appointment with my PCP, Dr. Hood. That appointment didn't go well. I was so hopeful, too. Dr. H had the e-mail I had sent her early in the week and she had obviously read it and printed it out to make sure we went over everything (it was a long e-mail) so that was encouraging. So we started by talking about my crash in general and about the relation to the sleep study (which she sent me for). She read over the sleep study report (she hadn't read it before) and it really annoys me that she doesn't know what any of it means. She sent me for the stupid test and she has no idea what it was looking for or what any of the results mean! Supposedly they think I got about 4 1/2 hours of sleep but they say I was waking up throughout the night so they don't take that into consideration. Still, Dr. Hood said she didn't understand why getting only a few hours of sleep would cause a problem for me. She said something very close to, "A person could have a night with only a few hours of sleep and not have any kind of crash so I think we need to look at why it is that your brain reacts the way it does." I responded with, "I have a chronic illness," but she didn't understand that at all. She was basically saying it's all my brain doing this, in other words "it's all in my head". She doesn't understand the toll a chronic illness takes on your body and the truth of the matter is she's never understood and I honestly have no idea why I've given her so many chances. It's time now for me to find a new PCP. I can't give her any more chances. And in a minute you'll understand even more why it's urgent that I get away from her.
Then we got on to the GI problems - the main concern of the visit. She was worried about my weight loss (10 lbs. since my visit to the office a month ago which makes a total of about 17 lbs. since this all started at the beginning of January) but that didn't spark any kind of discussion about how much I'm able to eat or anything like that. From my e-mail she did already know what my "safe foods" are but that was it. Then we talked a little about my symptoms - ab. pain, nausea, bloating, etc. I said specifically that the night before when I had gone out to dinner and had chicken soup I spent most of the night feeling sick, feeling like I was going to throw up, and just wishing I would throw up to feel some relief. Then she asked if I ever made myself throw up and I said no (I don't think I'd be able to do that to myself). Perhaps it was a mistake, but I said one of the reasons I wouldn't do that is I'd be afraid people would think I was bulimic. Silly me, I thought I could be honest with her. So she started off on the eating disorder thing and said that the compulsion to just get the food out of your stomach is a bulimic response. I didn't say anything because I didn't know what to say to that. It seemed like she kind of dropped it but throughout the whole appointment there was this whole undertone that she didn't really believe everything I was telling her.
When I brought up motility disorders, the only thing she could reference was esophageal motility disorders which is definitely not what I have (that would be predominantly reflux, inability to swallow, etc.). I said that it's more my stomach and intestines but she has no idea about any of that. So, anyway, in the end I walked out of the office with a referral to a female GI doctor but she's another local GI (and there was a complication with that, I'll get to that in a second) and a prescription for Phenergan (another nausea med) so I can take than if my Zofran doesn't quite cut it on its own. Phenergan also knocks me out which is good - I don't mind being knocked out when I'm feeling awful. Before I left I also had blood drawn for a CBC (that Dr. Bock wanted done this week, so Dr. Hood will also get the results - good deal there).
So, I raced over to work after that and was 20 minutes late. From work I called and tried to make an appointment with this other GI dr. but was told the earliest I could get in with her as a new patient is APRIL! So, I sat there dumbfounded and said I needed to call my PCP back and see what to do. So I called back Dr. Hood's office and talked to the receptionist and told her about it and she said they'd see what they could do and call me back. Didn't hear back again yesterday but this morning at 7:45am (they have no idea that people are still fast asleep at that time?) I got a call from someone at Dr. Hood's office who obviously didn't know about the situation. She said she heard I left a message that I needed to see someone for help eating? I said, "No, Dr. Hood referred me to Dr. S (the GI)." So, anyway, apparently they didn't fare any better with getting an appt. with Dr. S so they had the name of another GI, this time at Rhode Island Hospital in Providence (not sure if that would really be much better than a local doctor or not) and (and this is what really makes me mad and frustrated and just completely upset) an eating disorder specialist. I calmly (at least I think it was calmly, I was still half asleep) told the woman on the phone that I do not have an eating disorder and took down the info for the other GI doctor. I'm not at all sure at this point what to do, though.
So now here I am. I basically feel like this is the end of the line for Dr. Hood. I'm going to send her an e-mail later today when I've gotten my thoughts in order (and a little more info) to ask her a little more about this GI in Providence and ask about referring me to one of the motility clinics in Boston or at least looking into them. I'm just so frustrated and I feel so...exhausted with all of this. And on top of all of this, I believe the new supplement Dr. Bock put me on (Phosphatidylcholine) is causing diarrhea so I'm dealing with that. GRRRR! Okay, I've rambled on long enough. If you've made it through the whole thing, thank you for sticking it out! Sorry for venting a little but believe me I could have done much more. So now I'm in the market for a new PCP. If you know of a good one in southeastern MA or RI or if you have any suggestions of a way to go about finding a good one who understands chronic illness at all, please let me know (e-mail me or sign my guestbook).
I don't want to leave you all with just this negative entry so I want to have something positive here. So, my positive for the day is I've discovered another good flavor of baby food: PEACHES!!! It's really tasty and I really enjoyed it for breakfast this morning. My stomach isn't doing great right now but I think that's more from the Phosphatidylcholine and the oyster crackers I ate after the baby food. Yesterday I also tried Ritz crackers and those seemed okay as long as I ate them very slowly and let them kind of dissolve in my mouth (those are good at dissolving). They're also the reduced fat ones which I think helps. I'm trying to stay positive (or as positive as I can under the circumstances). Yesterday I got a care package from my aunt and uncle which was great - hypoallergenic bedding, a great heart shaped mushy pillow (with the pill beads inside?), some coloring books and crayons, and a few other things. Okay, I'm stopping now. Thanks for stopping by to see me. I hope you've all had a great week! Sending lots of hugs out!
Wednesday, February 8, 2006 10:36 PM EST
--Albert Camus
Hi Everyone,
I'm not feeling well at all tonight so this is going to be short. Today was a low-key day for me - spent the day in bed in my PJs. I did get out my arts and crafts stuff and made some Valentine's which was fun and made me feel kind of productive (although I probably should have been doing some homework). Tonight I went out to dinner with my brother and sister for our weekly sibling night - that's why I'm feeling especially awful tonight. I wasn't too ambitious, or at least I didn't think I was. I just got chicken rice soup but I tried eating too much of that (I ordered a bowl instead of a cup - big mistake - but I ate only a quarter of the bowl or less and I mostly ate the broth out of it). Then my brother ordered a peppermint stick cheesecake for dessert for he and my sister to share and stupid me decided I just wanted to be semi-normal for once and be able to taste some real food so I had a tiny taste of it. The combination of too much soup and that tiny bite of cheesecake is leaving me here with my rice pack on my stomach and barf bucket by my side (haven't used it but I kind of wish I'd just go ahead and throw up my dinner and get it over with already so I could feel some relief). Bleh. My saline is almost done and then hopefully I'll be able to fall asleep and I'll wake up feeling better. Tomorrow morning I have my appointment with my PCP so I'll update about that when I get a chance. Hopefully she'll be able to do something to help me!
If you have a chance, take a minute and pay my friends Diana and Tara visits, they're having rough times, too, and could use some positive thoughts sent their way! Well, my pump is beeping at me so I better go. Thanks so much for stopping by to see me! I hope you had a great day!
Tuesday, February 7, 2006 10:18 PM EST
but the bumble bee doesn't know it so it goes on flying anyway."
--Mary Kay Ash
Hi Everyone,
Well, I'm snuggled up in bed now with my heated up rice pack, down to the last hour of my saline infusion (yes, I started it later than I would have liked to, usually it's ending about now), and I'm feeling like I could nod off at any moment so I better get an update written quickly before I fall asleep! Today was an okay day but I'm definitely worn out (probably partially the residual effects of my day at school yesterday). I got woken up this morning at 10:30 with a call from my PCP's office confirming my appointment for Thursday morning (okay, so 10:30 isn't horrible, I've gotten calls much earlier, but it still sucks to be woken up when you're not feeling well). I spent the rest of the morning and early afternoon doing stuff online and planning my theater class for this afternoon. The theater class went well - 2 of the 7 kids were sick so it was a small class but that was okay, the kids had a great time and I got to kind of take it easy which was good (I was feeling really cruddy by the time I got over to the Art Center for the class). Then I went straight over to choir rehearsal and just curled up on one of the benches in the parlor for a half hour before people got there (glad I have a key to the church). I left during the break, though, and stopped at the grocery store for some of my regular oyster crackers (I'm just not a fan of the mini ones), more popsicles, and some of the rice cereal baby food. I also got some peaches baby food to try and some Ritz crackers because I just want some kind of variety. First I was going to get some graham crackers but I thought better of that and realized the sugar would probably be way too much for my stomach so we'll see how the Ritz crackers go.
Health-wise today hasn't been great. My eating hasn't been very good (Jello, oyster crackers, and a thing of blueberries and apples baby food) but I've gotten in more calories because I drank a bottle of gatorade (it's amazing how much of a difference that can make). I've been keeping track of my caloric intake for the last few days and it's kind of scary to see it all written down. I haven't made it anywhere near 500 calories and the recording has kind of made me push myself to try to eat more so it makes me wonder how few calories I was getting in before. It's hard because I feel so helpless to do anything about it. I'm trying my best to push what food I can but I'm already dealing with pain and nausea. GRRRR! I just want this to be figured out and hopefully something can be done about it! At the very least, if I know what I'm dealing with for sure it would help so much. I really hope Dr. Hood (my PCP) can help me on Thursday. Other than that stuff, nothing much else to report about today. The numbness and tingling was gone today so hopefully it will stay that way (*knock on wood*).
As you can hear (I hope), I changed the music on here last night. Now the song is "True Colors" sung by Cyndi Lauper. I love this song and yesterday I heard part of it on a commercial and just really wanted to put it on here...so I did! The lyrics are up towards the top of the page. Turn up your speakers and really listen to the music. It's beautiful and so meaningful to all of us who are dealing with illnesses that seem to cloud us in diagnosis, medications, and procedures instead of letting us be who we really are.
Okay, time to sign off and keep myself awake for a little while longer until my infusion is done (although if I happen to nod off, the pump will definitely wake me up!). Thanks so much for stopping by to see me! I hope you all are having a good week so far. I'm thinking of you and sending lots of warm wishes your way!
Monday, February 6, 2006 11:31 PM EST
But only true friends will leave footprints in your heart.
--Eleanor Roosevelt
Hi Everyone,
My day today was overall pretty darn good and a lot of that is due to the fact that I got a really amazing package in the mail from my awesome awesome friend, Diana. I was so surprised and touched and a million other things and it just really made my day. It was a Valentine's package and it was set up so that it was like a whole adventure because the gifts were numbered and there was a whole booklet to guide me through the presents. It was so great! I have some pictures but I'm not going to post a whole lot (but you can see more here):
All the presents in order and still wrapped up
And after all the presents are unwrapped (yeah, I skipped through a whole lot there). Everything was just so great and perfect! (Really, go to my album and look at all the in between pictures, it's quite the production!)
And I just had to post a picture of the last present...
A sign Diana made for my IV pole, Roly Poly!
And the other side has my name on it! How perfect! And how creative! I'm really blown away by it!
Okay, end of pictures. But, really, if the first two links didn't get you over to the album, seriously, go over to it! I spent a long time on it! Diana, thank you so much! You rock!
Now, as for the rest of my day, I went up to school and after a few times around the block managed to find a reasonable parking space and had some free time to rest before class. Class itself was good and we went over the readings which was good since I was pretty foggy while reading some of them this week (apparently the rest of the class didn't understand them all). The drive back home wasn't bad (not much traffic and Harry Potter to keep me company). And I've spent most of the evening getting all those pictures from Diana's package up in that album and watching some TV and drinking some broth. Health-wise today has been about the same. Stomach still not good, still some reflux but not as bad as yesterday (I blame yesterday's on too many oyster crackers at once), didn't do as well with eating today as yesterday but therefore haven't had as much abdominal pain. Blah blah blah, all the same stuff. The only big difference is that I had a lot of numbness and tingling in my fingertips which isn't normal for me. I may need to put a call into my neurologist this week about that. Grrr! I'm so sick of things coming up! Unless I'm suddenly becoming more sensitive to my headache medicine (Topamax) which did cause this side effect when I increased the dosage (which I haven't) I don't think it's from that but I guess my neuro would be the one to call about this anyway. I just hope the appt. with my PCP (Dr. Hood) goes well on Thursday!
Okay, I've gone on and on long enough for tonight. Time to try to get some sleep. Tomorrow will be a semi-easy day (well, I think so at least) - just my older kids theater class from 4:30-6 and then hopefully choir from 7-8 or so (probably going to try to go straight and get some rest at church, and maybe bring some broth or baby food to heat up at church and have for dinner or something). Thanks so much for stopping by to see me. I hope you all had a great day today! I'm sending you all good vibes for a great week!
Sunday, February 5, 2006 9:43 PM EST
--Leo Buscaglia
Hi Everyone,
Well, not a whole lot of interesting stuff to update about today. I made it to church this morning and did make it early for choir rehearsal. I've said before that it's interesting to me at church how I can tell the people who know me fairly well from the people who only see me every week or from time to time by how perceptive they are about how I'm feeling - quite a few people at choir asked how I was feeling (you know, in that kind of tone that lets you know they really want to know and are worried about you) and said I looked tired. After church people were asking the same thing and giving me hugs and being concerned. Apparently my not standing up during the hymns last week really made people notice I'm not feeling well and they're all getting concerned (or at least the people I talk to semi-regularly). Anyway, after church I took a 2 hour nap while hooked up to my saline (that perked me up a tiny bit) and then got busy doing some school work. And I actually managed to finish all my school work for the week, not just the stuff my teacher said I should do first! Yay! I'm hoping to have a chance to re-read some stuff tomorrow morning/early afternoon before heading up to Boston (or heading up early so I can have a break between the drive and class to do the re-reads) since I was so foggy doing the readings yesterday but if I don't get around to it that's okay. Now I'm just waiting for Grey's Anatomy and then I'll turn in.
Health-wise today things aren't great. Getting up early didn't help anything but the nap this afternoon did seem to help a little. My stomach hasn't been great so I've been sticking to easy foods (had some broth, oyster crackers, and jello so far today) and still spent part of the afternoon with my puke bucket next to me (while I was doing some of my school work). I've also had some reflux today which is new and not fun to have on top of everything else. I e-mailed my PCP (Dr. Hood) to fill her in on what's been going on with me and also just let her know I'm looking for a new GI dr. and probably a motility specialist if she has any connections. I see her on Thursday so hopefully she'll be able to help me with some things and will be concerned (it sounds weird to hope my doctor is concerned but I really hope she's really worried about all this because I need a doctor closer than 3 hours away (i.e. Dr. Bock) who is concerned about it).
Okay, that's it for me for tonight. If you have a minute, go over and check out my blog and Penguin Writings (my creative writing blog). I have some new writings up on both of them from this week. Thanks so much for stopping by to see me! I hope you all had a great weekend and I'm wishing you all sweet dreams tonight!
Saturday, February 4, 2006 9:31 PM EST
--Kahlil Gibran, 'On Giving,' The Prophet, 1923
Hi Everyone,
Early update tonight because I'm calling it an early night (I was ready to call it a night about an hour ago but I had to access Winnie (my port) and finish getting ready for bed). My day today was pretty uneventful. I slept in but was woken up around 11:30am by my phone ringing. It was one of my church friends and fellow choir members asking how I was doing and if I was going to be at church to sing with the choir tomorrow since we're going to be short on sopranos. I plan to be there (part of the reason for turning in early) and hopefully I'll be able to pick up the song quickly since I've missed the last two rehearsals and the last one I was at I left early. I'm considering taking a break from choir but I really hate to do that, the thing is it's only going to get harder to make it to rehearsals when my theater class starts this Tuesday (unless I decide to just head straight over to rehearsal after class and maybe heat up some broth when I get there to tide me through and take a rest at the church...sounds like a good idea to try before giving up on choir). So, anyway, after the call I woke up (well, sort of) and did some stuff on my computer for a while. Then I took a nice long bath (I love being de-accessed for more than the 5 or 6 hours I was able to be free for while on IV antibiotics!) and had a great set-up: I brought a folding chair into the bathroom and put my laptop in there and watched a Friends DVD while I relaxed in the tub. It was great! So now I'm all clean (yay!). Then I did manage to get quite a bit of school reading done but I didn't retain all that much (I was really tired and foggy) and ate some baby food (Oatmeal & Apples - not as good as the Rice Cereal & Apples with Cinnamon). I also managed to spend a little time planning for my theater class on Tuesday. So I guess I did manage to get quite a bit done today for it being a "blah" kind of day!
Health-wise it wasn't a great day. After a pretty uneventful day stomach-wise yesterday today wasn't as good (yesterday I played it safe so it's weird that today it would act up without even eating anything). I still played it safe today with just the baby food and some oyster crackers and popsicles but tomorrow I think I may need to back off a bit more - I'll see how I'm feeling tomorrow. Overall, though, today I've just been exhausted and so foggy and just felt like I could fall asleep at any moment. I probably could have slept all day if I'd let myself but I was so determined (and stubborn) to get things done so I didn't let myself sleep, maybe not the best decision but at least I got stuff done so it wasn't a complete loss. Hopefully tomorrow I'll feel better and hopefully I'll actually get to sleep quickly tonight (I think I'm going to pull out the melatonin just to make sure). Oh, and I'm leaving up yesterday's post in case you missed the creative writing I put up. I hope you can relate to it! And I want to let you all know that I decided to start a new blog just for my creative writings about chronic illness. You can find it here: Penguin Writings (I have some old creative writings up on there along with a few more recent ones).
Thanks so much for stopping by to see me! I hope you're having a great weekend so far. If you have a minute, take a minute and go over and wish my friend Caity a very Happy Birthday! (She's 22 today!) She's had a rough year and deserves to have a wonderful birthday and enjoy it to the last drop! And while you're at it, you can go over and send some good thoughts to my friend Tara who hasn't been feeling very well lately. Hope you all have a happy night with sweet dreams!
Friday, February 3, 2006 11:08 PM EST
--Grey's Anatomy
Hi Everyone,
Today has seemed like a really long day to me and I'm really really tired tonight so I think I will be able to get to bed early (although I think that a lot and still end up staying up until 1:00 or 2:00am). Last night it looked like it was going to be another late night so I opted to put in a movie around 12:30 (The Faculty, had it from Netflix) and watched that and then did managed to get to sleep once it was done. So, this morning I slept in until about 11:00am and then decided I better wake up and get some basic things done before going to work at 1. Work wasn't bad but it was long. I was expecting to only be there from 1-3 but I was there until 4:30 finishing up the list for the new show. It's a members show this time and I'm so proud of my younger sister, Margaret, because she put two oil paintings in the show! They're great paintings and I'm just so impressed at her abilities - her pieces are just as good as most of the other ones in the show and better than some of them (or maybe I'm just biased). So, anyway, after work I ran some errands to get my "staple foods" (I was very impressed to find a kind of broth that supposedly has 5g of protein per serving!) and a few places to get my mom's birthday present and card (today is her birthday). We had a family dinner (they all had stir fry and I had broth and oyster crackers) and then we played monopoly but didn't finish. That's my exciting day! Tomorrow I'll get to take a real shower (that's exciting for me!) and then just take it easy, rest, and do some school work (I hope).
Now for my weekly creative/reflective writing. I wrote this yesterday and put it up on my blog but I wanted to post it here, too.
The Invisible War
I'm waging a war today. My eyes are bloodshot and sore but, no, they did not get that way from a long night of drinking (oh, how I wish they could have gotten their red tint from drinks). My head pounds. I feel every skipped heartbeat, breath catching in my throat and leaving me a little scared of what each little missed thump means. My cold hands and feet are buried under covers, exhaustion leaves every cell heavy. My stomach churns and threatens upheaval. Today blurs into yesterday and soon tomorrow will become part of that blur. The battle continues...
Perhaps it would be easier for you if my scars were visible. Perhaps you would find it easier if you could see my headache, if I could draw lightning bolts coming out of my forehead and temples. Maybe you could understand a little better if my cold hands and feet turned blue or if each skipped heartbeat could be seen on the outside. If I was bruised and battered on the outside the way I'm bruised and battered on the inside you wouldn't question my illness, how I'm feeling, my disabilities, this war.
I blend in, I look fine, I hide myself beneath this skin that has become a cloak and a mask. You can't see the battles, the battalions that I send out everyday in an attempt to fight an invisible enemy. You can't see the profound amount of energy it takes to do the simple things because so much goes towards fighting off the ever-advancing enemy lines. A shower is exhausting, a trip to the grocery store out of the question on all but my best days, and "pushing it" to go out and do more "fun" things leads to days or weeks in bed recuperating.
This is life. This is the invisible war that no one can see, but I can feel. I fight for myself. I fight for you, that person out there who supports me and cares that I'm here and brightening up the world in whatever small way I can. I fight for my friends, those amazing people who are there for me, even when they themselves are fighting their own wars and feeling as bad as I am (or worse) - they offer themselves unselfishly and I have become more a part of the world even as my body fades and seems to become less a part of it. I fight for life, because the alternative is to give up, and giving up is never an option.
Thanks so much for stopping by! I hope you've had a great week and I'm wishing you sweet dreams tonight. I'd love it if you took a minute to sign my guestbook to let me know you've stopped by!
Thursday, February 2, 2006 9:54 PM EST
--Ralph Waldo Emerson
Hi Everyone,
Nothing much to report today. I slept until noon (I probably could have slept longer but when I woke up long enough to roll over and see the time I decided maybe it was time to try to wake up) and stayed in my PJs in bed all day. I did get some school reading done which was great - I'm slowly working my way through this week's readings, just need to keep at it and I might actually finish it all this week! I also watched Philadelphia, one of the movies I have out from Netflix right now, which I'd seen parts of before but not the whole thing. It's a very powerful movie and I highly recommend it. My eating hasn't been great but I did try another flavor of baby food this morning and it wasn't bad at all - Rice Cereal & Apples with Cinnamon. I've found that the key is to heat it up enough so that it thins out a little bit and then it's kind of like a cross between a hot cereal and applesauce. I think tomorrow morning I'll have to try the Oatmeal & Apples. Other than that, though, I haven't managed much - just some oyster crackers and now I'm sipping some broth. I have my own "broth recipe" (not from scratch, just the best way for me to fix the broth) - I water the broth down to not quite 1/2 and 1/2 and then add some extra salt and heat it up and sip it through a straw (makes it not as hot and reduces the air in my stomach). Tonight I'm also softening up some oyster crackers in the broth which is pretty yummy. Tomorrow my plans aren't too exciting but require more than today did - work from about 1-3 (my boss is worried about me, I can tell, and if I'm done with what I need to get done before 3 she'll probably let me go early) and then I think a quick trip to the grocery store for some of my staples - juice boxes and oyster crackers and probably another thing of broth (maybe I'll try some vegetable broth for a change).
Yesterday I had to make the difficult decision to not plan for a spring Lyme Out Retreat because of this current major crash in my health and the general decline that's been happening over the last year or so. I know deep down that I wouldn't be able to handle it, I know this is really the best thing to do, but it's still hard and I hate having to give up something that I love to do. So, I sent out an e-mail to all the past participants letting them know about this decision and all I have gotten back is an outpouring of concern and support and it has been wonderful and just what I need. I will most likely be getting a visit from two great Lymie friends sometime in the next few weeks and I've been getting e-mail responses of concern and care and no one even mentioning disappointment about the retreat not happening. What a great group of people and I feel so lucky to have their support. It makes the whole situation a little less awful to deal with, but it's still pretty hard to come to terms with.
Okay, that's it for tonight! Thanks for stopping by to see me and I hope you're having a great week so far! I hope you all have a great night and day tomorrow.
Wednesday, February 1, 2006 5:53 PM EST
~Winnie-the-Pooh
Hi Everyone,
Sorry for no update last night. I had a looooong but good day and didn't end up getting home until just after midnight from visiting my friend Heather in Worcester. It was a great day of visiting, meeting Heather for the first time even though I feel like I've known her forever (both because we share that common history of dealing with chronic illness (she's a fellow Lymie) and because we've been online friends for quite a long time now), and lots of driving around. I got to know route 290 very well (lol, if you're not from the Worcester area you probably have no idea what 290 is but I'll just say that we drove back and forth on it a lot). I got a little bit of a later start than I wanted to but still made it there by around 12:30 (and only got a tiny bit lost but got back on track pretty quickly). We decided to go out to lunch at Panera (if you don't have Panera where you are, it's a coffee and sandwich, soup, salad kind of casual restaurant) since I'd probably be able to find some soup I could handle. I got some chicken noodle soup and bread and the soup was good and seemed to be okay on my stomach (mushy noodles were very good in this case), though I mostly stuck to the broth, but the bread was a little rough so I mostly dug out the middle of it (it was more of a piece of french bread) and had some of that. Needless to say, that meal stuck with me for the rest of the day and I didn't eat anything else. After that we went back to Heather's house to see what the movie times were in case we wanted to go out and see something but everything was starting within 5 minutes so we opted to watch a DVD instead. This is adventure #1 which left my brain pretty fried.
Heather is basically staying with a friend right now, not permanently living in Worcester, so she doesn't know how to work everything at the apartment. They don't have a DVD player but can play DVDs on the PS2 (play station). Now neither of us knew how to do this but we thought between the two of us maybe we'd be able to figure it out. We did figure it out in the end but it took about a half hour (or maybe longer, I wasn't keeping track), a lot of guessing, and in the end it came down to trying to guess what the password for the parental control on the PS2 was! It was a 4 number combo and I ended up just trying 1-1-1-1, 2-2-2-2, etc. and it ended up being 9-9-9-9 so I lucked out. I had a headache after that (there was a lot more involved than what I wrote here but it probably wouldn't translate well or seem quite as funny to all of you who weren't there, Heather, if you're reading this, I'll have to try to write more of the details of it out so I'll remember it). Just think 2 foggy Lyme brains trying to figure out how to play a DVD on a video game machine - it was quite comical. But we got it working and got to watch "13 going on 30" which was very cute and worth all the trouble.
Then after all that we ended up going out to the movies, too. We went and saw Brokeback Mountain which was really good. It's so rare that I actually go out to see movies and it was nice to be out at the theater. But before we made it to the movie we had adventure #2 - getting to the movie theater. We got directions from google which seemed somewhat better than the mapquest directions we had gotten earlier to Panera (which, by the way, forgot to mention earlier but we also had an adventure trying to get to 290 to go to Panera which involved a construction guy leading us around through a detour - very nice of him). Well, Google didn't take into consideration that the road the movie theater is on is cut off on one end by the movie theater itself. So we were sent down one end of the street and got to a dead end right at the parking lot but weren't able to get into the parking lot. Fortunately, with a little figuring out and clever thinking we were able to figure out how to get around to the other side of the theater and get to the lot but we missed the first 10 or 15 minutes of the movie - not a big deal in the long run but it was just a little annoying and stressful in the moment.
And now we're nearing adventure #3. We headed home after the movie after a long day of lots of driving (all of this driving was back and forth on 290 - hence all the sudden familiarity with 290 I mentioned at the beginning) only to find that the door to the apartment was locked! Now, since Heather is just staying with her friend she doesn't have a key of her own and usually the door is left unlocked for her but apparently one of her roommates had forgotten to do this and hadn't left a key for her in the hiding place that they sometimes do. So it was just after 9:00 (I skipped choir rehearsal) and we were locked out and I had left my purse in her apartment. I had my hydration backpack with me (my new hydration pack - I really love it!) and just put the few things I needed into that and left my purse in her apartment when we went out. So I couldn't just leave to go home. Heather tried calling her roommate's cell phone - no answer. She left a message. So we went back out and went to a coffee shop - I had some mint tea which seemed okay on my stomach (they had some really yummy looking pastries but I knew that would be a huge mistake I would soon regret so I passed). Soon we got kicked out because they closed (things in Worcester seem to close around 10 on weeknights) so Heather tried calling her roommate again - no answer - and we decided the best thing we could do was head back to the apartment and hope for the best. I'll skip over the details and just say that thankfully her roommate did show up around 10:30 and we were able to get back in, I got my purse, said goodbye to Heather, and headed for home. I made it home safely but didn't get here 'til just after midnight and I was exhausted (although I didn't get to sleep 'til around 2am - stupid insomnia even when I'm exhausted).
So, that was my long but great day. Getting to meet Heater was great. Doing things like this wear me out so much and make me really exhausted physically but they renew me emotionally and spiritually so it's really worth the trade-off. Health-wise things haven't changed - still trying to just stick to my staple foods (I know pretty well at this point what I can handle and what I can't which does make things easier): oyster crackers, broth, baby food (haven't been eating much of that lately, need to try more of that), jello (need to try to eat more of that, too), popsicles. And I'm doing a little better about getting fluids in, so that's good. My rice pack is still my best friend and my IV hydration is definitely helping to keep me going (it looks like I'll be getting a new, different ambulatory pump sometime in the next few weeks - this may seem silly but I'm trying to decide whether to keep the name Eeyore for it...I'm leaning towards keeping the name). Unfortunately, it appears that I'm still losing weight pretty fast (down another 2 or 3 lbs. from last week) and even my "skinny" clothes are starting to hang off of me. This is pretty scary and I'm going to have to put a call into my GI dr. tomorrow to let him know that things are still really bad and give him one more shot at doing something about it before I "fire" him and seek out a new GI (I see my PCP next week so I'm hoping she'll have some connections up in Boston).
Today I am really exhausted (as is to be expected). I went into work today and was doing alright for being so tired but when my boss got in around 2:00 she said I looked pretty bad and said I should go home so I came home early (after depositing my pitiful check from last month - I really need to be able to start working more). Tonight is sibling night and we're going out to 99 Restaurant and Pub (like Chili's or Applebee's). I've spent a good part of the afternoon doing some major renovations on my site as you can see. I now have a Winnie-the-Pooh theme going on to go along with my Winnie-the-Pooh themed medical stuff (Winnie-the-Port, Eeyore (my pump), Piglet (IV pole)) and because I just thought I needed a change! I hope you like it! I'm still kind of working on it so you may see more changes over the next week or so but the majority of it is done. Now I'm just hoping to get a little bit of school reading done this afternoon and hope I don't fall asleep doing it (maybe I should have taken a nap instead of changing around my site).
Please keep my friend, Diana in your thoughts. She had a kind of scary test done today and could use some extra thoughts. And thanks for stopping by. I'm sorry this was so long - I just had a lot of adventures yesterday! I hope you found it interesting. If not, I hope you'll at least come back again some other time to check in. I hope you've had a great few days and have a wonderful evening and night!
Monday, January 30, 2006 9:59 PM EST
-Flora Whittemore
Hi Everyone,
Today has been a bit of a long, tiring day for me but not an entirely bad day. It started with the rare occurrance of having to be woken up by my alarm at 11:00am (yes, that would mean I slept in just a bit). I did a little online stuff, got dressed and got my school stuff ready before my phone appointment with my disability advocate about my disability appeal (apparently it's not just the SSI that was denied but also SSDI). That phone call went well and my advocate is confident that we'll win but very possibly not until the hearing level which would mean going through this appeal level just to be denied. After that I got all my stuff together (somewhat haphazardly) and headed up to Boston with a detour to Framingham to go to R.E.I. and get the hydration pack so I now match my great friends Diana and Tara! I'll have to take some pictures and get them up later this week so you can see how it works. I also figured out how to get all the air out of my saline bag myself so I can ditch the extra inner backpack I was having to use. It takes a long time for me to do it myself using my pump so I'm glad my infusion company is going to be taking care of it for me starting with my next shipment. Now that I have the air thing figured out it's much easier to use any backpack so I have many choices but I like the hydration pack the best because it's nice and small and has a nice hole for the tubing to go through so it doesn't have to go through the zipper. So, anyway, after R.E.I. I headed to Wheelock for class and thankfully managed to get a handicapped space right by school so I had minimal walking. Class went well but I was definitely worn out. Then I made the drive back home and I've been figuring out how to hook things up with the new backpack, catching up with stuff online, and watching some TV with my rice pack on my belly.
Health-wise today my stomach has been having ups and downs. For a lot of the day it seemed to be doing alright if I just stuck to oyster crackers but I was trying to give Boost another shot and it seemed that without fail whenever I took a sip of it I would end up with pain about 5 minutes later. Not totally sure what exactly it is about it that causes the pain - the sugar, the thickness, an ingredient in it, or something else. I did manage to get in about half a bottle of it throughout the day but I'm not sure how well I'll do with it from now on. When I got home I went to my baby food stash and decided to give the Apples and Blueberries a try and it's actually pretty good so I think I need to go get some more of that flavor. I ate the whole jar (quite an accomplishment! I don't know how those babies do it!) and my tummy is handling it alright - not too much nausea and just a little bloating. (I know this all seems boring, it's as much a way of me keeping track of what I'm eating as letting you all know how I'm doing.) I think I'm going to go grab a popsicle and then probably call it a night soon! I'm really looking forward to tomorrow because I get to go visit my friend and fellow Lymie, Heather, in Worcester. We've "known" each other online for quite a while now and I'm so excited to finally get to meet her! So, that'll be another little while in the car but I'm borrowing my dad's car that has cruise control (yay!) and I have my mp3 player so I can continue listening to Harry Potter (what I was listening to on the way up and most of the way back from school today).
I hope you all had a great day today and thanks so much for stopping by to see me! Sweet dreams tonight!
Sunday, January 29, 2006 10:59 PM EST
--City of Angels
Hi Everyone,
Nothing exciting to say today. I did make it up and out to church this morning (my dad and brother opted not to go which was fine, it's nice to go by myself sometimes - I actually kind of miss that alone time every once in a while). I stayed for a while after the service to talk to people - a lot of people are worried about me because they noticed that I stayed sitting down during the hymns (out of character for me). So I got to fill some people in on what's going on lately and it was nice to talk about it to people who I know care so much about me and are so supportive. It amazes me sometimes how much my church family has come to mean to me even while I still feel like a newcomer to the congregation (I've been going there for about 4 years now but in a lot of ways it feels like much less time). I spent the rest of the day resting in bed, online doing stuff, finishing up my homework for tomorrow, and watching some TV - just a normal wild and crazy Sunday afternoon! I also got to talk to my older sister for quite a while on the phone which was really nice. I went through telling her all about the GI problems and her telling me to just force myself to eat (she gave up on that pretty quickly) and then we just talked about life. I'm planning a trip to go out to visit her in early June for a week (let's just hope things are looking up by then).
My stomach hasn't been good today - worse cramping, pain about the same, nausea the same (not too bad), bloating worse. Didn't do too well with the eating today but I tried what I could manage. I think tomorrow when I go to school I'm going to bring a bottle of boost and try to get that in slowly through the day along with some oyster crackers (I just hope the boost doesn't cause problems, it was starting to cause more nausea and pain when I was trying it last time). Other than that, health-wise today things were the same as they've been so nothing new to report. Tomorrow's my school day and I'm taking a detour trip to R.E.I. in Framingham (about 20 minutes out of the way) to get a new backpack for my IV hydration - a hydration pack! Kudos to Tara for coming up with that idea! I'm really excited about getting that (so excited that I couldn't wait long enough to get it in the mail, I had to take the extra time to go to the store and pick one up). I also have a phone appointment with my disability advocate about my SSI appeal before I leave for school.
Okay, that's it for tonight! Hope my tummy settles down enough so I can get to sleep (it's being all weird right now but my rice pack is at least making the cramps better). Hope you all had a great weekend! Thanks so much for stopping by to see me, it means a lot to me to know people are out there supporting me!
Saturday, January 28, 2006 11:14 PM EST
You gotta hope even more,
and cover your ears and go 'bla bla bla bla bla bla bla bla!'”
- Philip J. Fry, Futurama
Hi Everyone,
Not much to report today. I slept in quite a bit more today ('til about 11) which was good but I still feel exhausted. I'm hoping to get to bed early tonight and slowly start to close the gap on the sleep I've lost over the last few months. I spent the day in bed resting mostly, watched some TV, answered some e-mails, and did manage to get some homework done. I also got some questions about my IV hydration answered which I think will make my life a lot easier - basically the infusion company can take the air out of the bags before they send them instead of just shipping them as is which will make it much easier for me to put the bag of saline and pump in whatever backpack I want to without worrying about it being held upright. They're also going to send me some filters for the tubing which will take care of any leftover air bubbles. All this will just make my life a little easier. I've been trying to eat easy things today but not doing very well with that. I tried the banana baby food and it's not that bad when it's heated up a little in the microwave but I only managed half the container. And tonight I managed some orange jello but I'm having a little more pain from that - not too bad so jello is definitely on my list of "okay" foods. And of course oyster crackers (they're my "new" saltines) and gatorade throughout the day. The nausea hasn't been too bad, the abdominal pain has been okay as long as I keep the rice pack on my abdomin, but I've been more bloated - it's always something. I'm hoping to get to bed shortly and then make it to church in the morning (my brother's planning on coming with my dad and I this week, I think).
Now, for my delayed weekly creative/reflective writing. Keep in mind that I'm really tired and foggy so this may not be as coherent as it would be otherwise (I toyed with the idea of just digging up an old poem to post but that seemed like cheating):
If you've been coming here consistently for very long, you've probably noticed that for the last month or so I've gotten (back) in the habit of putting a quote at the beginning of each update. I'm a great lover of quotes. I so often have trouble putting my own feelings into words so I often go out searching for someone else's words to express my own feelings. So, if you look up to the quote that is at the beginning of this entry, you'll notice a few things. First of all, the quote itself is a really good saying. Just because things seem like they're hopeless doesn't mean you should give up. Believe in miracles, believe when it seems like there is no reason to keep believing. So after you look at the quote itself you probably notice who the quote is by - Fry from "Futurama". (For those of you who aren't familiar with Futurama, think something like "The Simpsons" but not about a family and taking place a few thousand years in the future - Fry is a character who was accidentally frozen and then unfrozen in the future so he's from our time but living in the future - quite a funny show.) This quote is a very "Fryish" thing to say - the thing it's saying but more the way it's said. It's been a long time since I've watched an episode of "Futurama". During the year that I lived in my apartment up in Jamaica Plain (just outside Boston), which is also when I started this page, my roommates Megan, Emmy, and I used to sit around and watch "Futurama" and "Family Guy" in the evenings. I miss those times. That was a great year and a time when I was independent and feeling pretty good, the last time I was in school full time, and things in general seemed to be going okay. But I digress. This quote kind of sums up my feelings about life a lot of the time. Just when things seem the bleakest, that's when you need to hope the hardest and just ignore every inkling of hopelessness telling you to give up.
Well, I started writing this about an hour ago but then got slowed down by talking to friends online and doing one thing or another so my early bedtime hasn't happened. But that's okay, I love talking to my friends! So, thanks so much for stopping by to see how I'm doing! I hope you're all having a good weekend so far and I wish you all sweet dreams!
Friday, January 27, 2006 9:47 PM EST
but when the darkness sets in, their true beauty is revealed only if there is a light from within."
--Elizabeth Kubler-Ross
Hi Everyone,
I'm leaving the update from yesterday up just in case you missed all the changes in my medical stuff that happened so it's below this update instead of in the journal history. Today was kind of a busy day for me compared to what I've been up to lately. It was kind of weird not having to be on my usual IV schedule with the Primaxin at 8am, 3pm, and 10pm but I think I'll adjust to it. It's a nice idea to sleep in but it didn't really happen as well as I'd imagined it would - I still woke up around 9 but that wasn't that horrible. After doing some stuff online and talking to Heather for a while I went out to work for a few hours. Work was fine and I did manage to get some school reading done but I was really not feeling well - brain fog, exhaustion, abdominal pain, just generally feeling yucky - so I didn't get as much done as I would have liked to but at least I made another little dent. Then I made a quick trip over to the grocery store and came home with: jello, chicken broth, oyster crackers, and baby food. Yes, it's a little depressing that this is a trip to the grocery store for me right now but I'm trying to branch out a little into the baby food realm. It's hard to decide that those little jars of food meant to be fed to toddlers are something you want to try to feed yourself but I need to find more things I can tolerate and my aunt mentioned that baby food applesauce is generally easier on your stomach than regular applesauce so I got some baby food applesauce, bananas, apples and blueberries, pears, and some breakfast cereal (oatmeal with apples, and rice with apples and cinnamon) to see if it might be acceptable. I don't know, but I'll give it a try (I haven't tried any of them yet so I don't know if any of them will be okay). And Heather gave me the idea to make it more fun by using the jars to make snow globes!
Health-wise things are about the same. My rice heatpack is my best friend lately and I make frequent trips into the kitchen to re-heat it in the microwave. It does help the abdominal pain which is good. I've been having these dizzy spells which aren't cool - they happen mostly when I'm lying down or propped up in bed and they only last a few seconds but it really feels like the room is spinning. All in all I'm just not feeling so hot today. But tomorrow I don't have anything on the calendar so I plan to spend the day resting and doing homework. Because I'm not feeling so great I'm going to postpone my weekly creative/reflective writing until tomorrow so check back for that! Thanks for stopping by to see how I'm doing and thanks especially to everyone who has signed my guestbook! It means a lot to me. I hope you all had a great week and I wish you all a happy and healthy weekend!
Friday, January 27, 2006 12:31 AM EST
-Madame Swetchine
Hi Everyone,
Well, it's late but I'm dealing with abdominal pain and not tired (shouldn't have been drinking that bottle of coke throughout the day) and I wanted to update tonight rather than waiting until tomorrow so you'll all know how my visit with Dr. Bock went today.
So, the visit was good overall but a little rushed (Dr. Bock was a little behind so I think he was trying to catch up and get back on schedule). He hadn't seen the fax that I sent him last week so he read that first and got a little bit of a picture of what's been going on with me over the last few weeks. He was concerned, as I expected him to be, and one of his first remarks was that he doesn't agree with the diagnosis the GI gave me. He thinks it's very likely I'm dealing with a motility disorder and he's seen this in at least one of his other Lyme patients. He said he doesn't want to step on the GI's toes so he didn't prescribe any motility medications today but it's there in his mind and just knowing that that's what he thinks is going on is validating for me. He's taking me off the Primaxin (as I expected he would), I'm starting a new supplement (Polyenylphosphatidylcholine - PPC for short) that may help my GI stuff, and we'll see if either of those things helps at all.
As far as my labs go, he wasn't all that concerned because he thinks the low WBC counts are related to the Primaxin and being off that will help bring them up. So I'll have a CBC done in 2 weeks to chek that and hope they come back to normal. (I also need to fax over my latest CBC results to my GI since he was goign to order a CBC but didn't since I told him I have them done every week and they're always normal - well, they were normal when I told him that.) I go back to Dr. Bock in 6 weeks (supposed to be 4 but either he's away or I have a conflict every week from 3 weeks from now to 8 weeks from now) and we'll see what happens between now and then.
When I got home I also saw that the results of my GES (gastric emptying study) came in the mail (really fast since I only had it done on Tuesday!). The GES was normal which may seem like good news but I'm not taking it as good news. I'm pretty upset about it and just overall frustrated and...I don't even know. Now I feel like I'm back to square one trying to figure this out. I don't have confidence that my GI is going to do more testing and I'm not all that sure Dr. Bock is going to do testing but at least he's taking things seriously. As of today at Dr. Bock's office, my weight is the lowest it's ever been that I can remember (since junior high, probably) - at least 15 lbs. below my "normal" weight. I've lost 2 1/2 lbs. since going to the GI last Thursday which isn't as bad as it could be but definitely not good and it's all just hard to see happening without feeling like I have any control over it.
Okay, enough about that, so on the way home my dad and I stopped at my aunt and uncle's house for dinner. My aunt only stopped in for a few minutes before going off to dinner with some women's group she already had an engagement with but it was nice to get to spend some time with my uncle. My dad and he got pizza and I had a few saltines and some applesauce and then spent the later part of the ride home in pain. It's frustrating that applesauce and saltines can do that but it's better than what the food I ate last night did to me so I guess that's something to be thankful for. I have some chicken broth to try tomorrow at some point, hopefully that will be a little easier to tolerate than the applesauce. And I'm at the point where I'm going to go to the grocery store and pick up some baby food and try that (the least disgusting flavors I can find - I'm thinking fruits would be easiest) - kind of depressing but I'll do what I have to do and try what I have to try. But I digress. Dinner was good (I wish I could have enjoyed the great smelling pizza) and the ride home was uneventful (I slept for a while). Then I got right online and filled my wonderful friends Diana, Tara, and Sarina in about my doctor's appointment and all that stuff.
Whew! Long update! Guess I had a lot to say. Hope you made it through all that! So I'm stopping the IV antibiotics which means a) no more crazy IV schedule (i.e. I can sleep in, go to bed whenever I want, take naps, etc.), b) I'm only dealing with one infusion company instead of two and c) unfortunately I now have 3 or 4 days worth of unused Primaxin that will just be going to waste which I hate but I guess that's just how it goes. I have lots of other supplies which I'll still be able to use since I'm still on the IV hydration and using my port and all that but the Primaxin will just have to be thrown out. Oh well - so it goes! Okay, enough for one night! Thanks so much for stopping by to see me. And congrats if you made it through the whole update tonight! Oh, and I changed the music on here. To find out more about it, scroll up towards the top of the page to the green bold writing by the music controls. (You're now listening to "Life Holds On" my Beth Nielsen Chapman - a bit more upbeat.) Hope you all had a good Thursday and are having a good night!
Wednesday, January 25, 2006 11:30 PM EST
--Grey's Anatomy
Hi Everyone,
Well, I'm really exhausted tonight so I'm going to try to keep this short(ish). I thought I was going to be working for a few hours today so I got myself up and dressed in time to stop by the pharmacy to drop off a new prescription before going to work for 1:00. But I got a call from my boss just as I was getting in my car saying she didn't need my help today (the office is a bit of a mess this week because they're trying to sort out some outdoor light issues) so I'm going in for a few hours on Friday instead. I still went out and ran my errands and that was fine but wore me out really fast. After that I took some time to rest and then tried to get some reading done for school and did manage to finish up one reading so I'm making progress! And this evening I went out with my brother and sister for our weekly sibling night out. We went to Unos and I was quite a bit too ambitious with the food - I got some vegetable soup which would have been fine by itself I think but I also had a little of the appetizer (a flatbread pizza thing with pesto sauce and tomatoes and feta cheese and other stuff) and the real mistake was I took a bite of the dessert my brother ordered. It was a chocolate chip cookie sundae thing but way better than it sounds. I think it was worth it because the bite was really good but I'm really not feeling good at all now so I'm not going to be taking bites of anything like that for a long time. Now I'm just trying not to fall asleep until after my Primaxin is done and then I'll go to bed and hopefully get enough sleep so I'm not completely dead tomorrow for the long day to New York to see Dr. Bock.
As for the health front today, I got my lab results and they're looking worse than last week. My WBC count is the same (quite low at 3.1) and my ANC (absolute neutrophil count) has dropped a little more - down to 1.38. It's not incredibly low but it's dropping so it definitely concerns me. My absolute monocyte count is also low and my alkaline phosphatase has dropped another point. All in all, these labs are not good. I hope Dr. Bock will have some insights into why my immune system is so off and some ideas of what to do about it. My stomach is about the same overall but has been worse since dinner tonight (I'm curled up right now with my heated rice pack on my belly and just feeling yucky - it's that feeling where you don't really feel quite sick enough to actually throw up but you know that if you would just throw up you'd feel better
bleh). My head has been threatening to start hurting and turn into a full migraine but so far the threat seems to be held off by resting.I'm not sure exactly what Dr. Bock is going to do tomorrow but I'm pretty sure he's going to a) be very worried about me not being able to eat and my abrupt weight loss and b) take me off the Primaxin, at least for now. I'm prepared for both of these things but I'm not sure what he'll want to do beyond that. My main thoughts are that my immune system is wacky and we need to see what's going on there (I possibly have some underlying immune system problems?) and that after a break from the antibiotics, pulsing them (only being on them a certain number of days/week or weeks/month with some time off) would possibly be a good idea since I seem to crash after being on them for too long continuously. I'll update about what he has to say when I get back tomorrow. And I get to see my uncle on the way home! Yay! (My aunt has other dinner plans so I won't get to see her but it'll be nice to at least see my uncle.)
Well, I better end this (I keep saying these updates are going to be short and then I ramble on and on
). Thanks so much for stopping by to see me! I hope you all had a good day today and I wish you all a great night with sweet dreams!
Tuesday, January 24, 2006 10:01 PM EST
-André Gide
Hi Everyone,
Before I forget to mention it, I want to say that I just checked to see if my grade for my online Cultural Anthro class was posted yet and it is - I got an A for the class.
I'm happy about that and glad I made it through the class with such a good result (thank goodness I had such an awesome teacher for the class). Now, as for my day, it was long and I'm really exhausted from it. But I'm guessing that's not really what you wanted to know so I'll get on to some info about my "medical" day. My appointment with Dr. M (the physiatrist) was fine but not really necessary - I'm not in PT right now and not at a point where I can handle it. When I saw him at the beginning of December I was doing better and thought I'd be up for starting PT around now but with the way things are...well, I'm not. So I didn't make a follow-up but I'll go back to see him once I have the GI stuff figured out and am feeling better (and up to starting PT). Then it was off to the hospital for my GES (gastric emptying scan). I thought it would be a 2 or 4 hour scan where I'd just need to be scanned every half hour or something and be able to walk around in between but that's not how it was at all. So after I ate a few bites of my radioactive egg salad sandwich
(they only made me eat a few bites 'cause they knew I really wasn't able to handle food) I got up on the table and spent the next 90 minutes lying still while the machine scanned my stomach. I had brought homework and stuff to do thinking I'd be able to be up and around between scans but obviously wasn't able to get any of that done. I didn't even think to ask them about having my mp3 player to listen to (that is, I didn't think to ask until after I was all set up and the scan was started and by then it wouldn't have done me much good to ask since I couldn't move to get myself set up with it). So I drifted in and out of sleep a bit, sleeping for 5 minutes here or there, and I got to watch the computer screen sometimes but didn't really know what I was looking at. It was a long 90 minutes. The biggest thing I was happy about was that I kept the egg sandwich down - just had some waves of nausea and at some points I was worried it would come back up but it stayed down in the end. I'm getting the results sent to me (after a detour to medical records and filling out a release form) and I have to call Dr. B (GI) in a few days to remind him to look for the results. I just hope it sheds some light on what is going on so I can start fixing it! 
Since getting back from the hospital I've just been resting, trying to get in some fluids and a little food (so far just a popsicle and some goldfish - a bit of a change from saltines but harder on my stomach), and watching some TV. I didn't make it to choir rehearsal tonight but I didn't think I'd make it so I e-mailed the choir director ahead of time to let her know. Tomorrow I have to work for a few hours and I need to run some errands, too (prescription to drop off and pick up later, drop off my car insurance payment, quick trip to the grocery store if I'm up to it to get some individual servings of applesauce). Hopefully I'll be able to get some of my readings for school done at work (hopefully it will be a slow day). Well, that's it for me for today. Thanks so much for stopping by to see me! I hope you all had a great day and I wish you all sweet dreams tonight!
Monday, January 23, 2006 10:40 PM EST
--Albert Camus
Hi Everyone,
I'm quite exhausted tonight so this will (probably) be a shortish update. I did go up to school today and spent quite a while up there having meetings and getting things done before my class. My dad drove me up and back which was helpful but it causes a different kind of stress on me and is hard for me to handle because of the feeling of losing my independence but I won't really go into that. First I swung by the registrar to pick up my schedule and make sure things were in order (just needed one signature which I got easily and then turned that back in). Then I had a little down time so I sat and rested a little while and listened to some music in the college center before my meeting with Paul H., the disability services coordinator.
That meeting went well and he was very understanding about everything, interested in hearing about my various conditions and how I've been doing lately, and willing to give me whatever accommodations I need. The only snag we may encounter is the parking issue which I'll say a bit more about in a second. He said he had talked to Susan A. down in student development about finding me a quiet, private room to do my afternoon antibiotic infusion if I need to while at school so I headed down to talk to her after I was done with Paul. Susan was great. I don't really remember ever talking to her or at least not sitting down and having a real conversation with her but she knew a lot about me and remembered all kinds of things about me. I think my application interview was with her and she apparently remembers a lot of stuff from that (like that I was homeschooled). She was really sweet and we talked for a while. She has two possible rooms for me to use and I just need to let her know which I'd want to use so I'll e-mail or call her when I know for sure if I'll need one and let her know which I'd like to use. She also told me that if I need anything to let her know. She and Paul both really want to make it as easy as possible for me to succeed at Wheelock and to make the semester go as smoothly as it can. About the parking thing, basically I can park on the street if I can find a space (and I have my handicapped placard, too, so that would help) but I'm not guaranteed a space. I can't park on campus unless I purchase a parking permit, and even then I can only park from 5pm to 7:30am - not much help since my class starts at 4pm. Paul told me to talk to the facilities manager and see if we can work something out but it's frustrating that being a "disabled" student isn't helping me here. Hopefully I'll get something worked out.
The class itself went well and the teacher is good and really nice. The class should be interesting but a lot of work. Thankfully the teacher, Maya (my school is interesting in that we call our profs. and teachers by their first names usually), is very understanding. We talked briefly after class and I explained everything to her, gave her my accommodations letter from Paul, and she was great about everything. She's going to prioritize the readings each week for me so I know what to get done first and what can be dropped if I just don't have the energy or brain power. And if it would help she's willing to meet with me before class to discuss the readings so they sink in more. Maya has Rheumatoid Arthritis (controlled by meds right now) so I think that helps her be more understanding. The class is also really small with only 6 students including me so I think that helps, too - I'll be able to get more one-on-one attention if I need it. I'm looking forward to the semester and being back in school although I'm still worried about some aspects of it.
Health-wise it's just the same stuff. My stomach was okay while I was at school because I didn't try to eat anything (just had some apple juice on the way up to Boston and some gatorade during class). On the drive home, though, the pain started up and tonight it's been getting worse. I did manage a popsicle and some saltines tonight so that's something. I really need to work on getting more fluids in (more a note to myself than info for any of you) but tomorrow I'll be NPO for most of the day so not much I can do about it then. Tomorrow I need to draw labs in the morning (again, more of a note to myself), then I have an appointment with Dr. M (physiatrist) at 11:15 and I have to be at the hospital at 12:45 for the GES (gastric emptying scan) and I expect to be there for most of the afternoon. If I have any energy left after all that I may attempt to go to some of choir rehearsal but I'm not too optimistic on that. I'm just going to curl up in bed now and maybe answer some e-mails before I can go to bed. Thanks so much for stopping by to see me! I'd love it if you took a minute to sign my guestbook! I hope you all had a great day today and I wish you all sweet dreams tonight.
Sunday, January 22, 2006 10:32 PM EST
My blood runs as red as yours
We all get angry, we've all been scared
We've all made big mistakes that can never be repaired
--Edwin McCain
Hi Everyone,
Today has been kind of a long day but I got out of the house which I think was good for me (although tiring). I did make it out to church early for choir rehearsal and sang with the choir during the service without needing a chair or passing out or anything, although when we were standing up during the rehearsal I was feeling pretty cruddy. I got to talk to a few people at church about how I've been doing and they were sympathetic. It's interesting how I can tell the people who know me from those who only talk to me every once in a while. At the choir rehearsal, one of the other sopranos, Dody, could tell I wasn't feeling well and asked how I was doing, saying she could tell I was feeling pretty yucky. So I told her all the problems I've been having with eating and all that. Later on (after the service), someone else from the choir who I see at rehearsals but who I really never talk to said it looks like I've lost weight (yes, it's quite noticible I guess). When I said yes but that it's not a good thing, she said I look good and that she wishes she had a few weeks where she couldn't eat so she could lose some weight. I know she meant it as a joke and I know people probably don't realize it when they say it things like that, but it really is belittling to my situation. It didn't bother me that much because the woman that said it was just that kind of person but it momentarily stopped me in my tracks and definitely made me think and realize who knows me. Anyway, after church I came home, hooked up to my saline, and proceeded to take about a 2 hour nap (a bit out of the ordinary for me, I guess church took a bit out of me). And this evening I finally took my online Cultural Anthro final! Yay! I'm finally done with that class! The final didn't go as well as it could have gone but it wasn't awful (I got about an 87 or 88 on it, I'll take it) and I ended up with at least an A- in the class so I'm happy with that, especially with everything that's been going on this fall.
Tomorrow is my first day of my class at Wheelock. I took a shower tonight so I'll actually be clean at school (I want to make a good first impression, afterall). I have to go up early to check in with the registrar (I didn't go up for registration last week (I'm pre-registered) so I just have to take care of that stuff) and then a meeting with disability services before my class at 4. I guess my dad is driving me up and finding a place to work while I'm at school and then driving me back home. I don't want to have to be driven to school and I was planning on driving myself but my parents are insisting on driving me at least this week. One of the hardest things for me to deal with right now is the loss of independence that I'm feeling. Even when I've been at my sickest in the past, I've been able to drive myself to school (when I've been in school) and do the other little things that so many people take for granted. Yes, I can still do many things for myself and I'm very grateful for that. I took a shower this evening, hooked myself up to my various IVs, walked down the hall to the kitchen to get a popsicle, and I know that many times I overlook these things and just concentrate on the things I'm not able to do right now. But it's still hard.
Health-wise today things have been a little rocky but not much different than the last few days. My eating was pretty bad and my drinking wasn't all that great but I'm trying my best. The nausea was worse for a while this afternoon but eventually it passed and the abdominal pain has gotten worse throughout the afternoon and evening (as it seems to be doing most days). And it's all the other usual stuff so I won't go into it all. I'm watching Grey's Anatomy now and I'll curl up in bed after that 'til my Primaxin is done. I hope you all had a great weekend. Thanks so much for stopping by!
Saturday, January 21, 2006 11:25 PM EST
--Anne B. Sekel
Hi Everyone,
Today was another "club bed" day spent in my PJs in bed. I listened to a lot of "The Lion, The Witch, and The Wardrobe" on my mp3 player while doing some stuff online after I got up (well, I didn't really get up, just woke up). And a little later on I watched one of my other Netflix movies, Closer which I enjoyed. I don't know what it is but I seem to be much more drawn to dramas than comedies but if anyone has any good comedies to recommend I'd love to hear them! I didn't do too well today in the eating department but to be completely honest I'm not complaining about that because it means my stomach wasn't as bad. I took it easy on the food for most of the day (had half a biscuit left over from Cracker Barrel the other day - ate it veeerrry sloooowwwly) but tonight I decided to take a few bites of my leftover mashed potatoes and then a popsicle (yes, someone went out to the grocery store to get some things and picked me up some more lime popsicles) and now I'm having a little more abdominal pain and nausea, although it's the pain that is more of...well, a pain. But I'm trying to at least be drinking and hopefully tomorrow will be better. My plans for tomorrow (or at least my hopes for tomorrow) are to make it to church early for choir rehearsal and then sing with the choir at the service (I really hope I'll be able to handle this - I may need to figure out a way to get a chair to my spot or something so I can avoid passing out in the middle of the song but I'll just see how the rehearsal goes). Then in the afternoon at some point I have to take the final for my online Cultural Anthro class and then I'll be done with it! Yay! And I'll need to do some major resting during the rest of the day because Monday is going to be a rough day for me (have to go up to Boston for my first class back at Wheelock and a meeting with disability services before it).
If you have a minute, go over and wish Diana a very happy 18th birthday! And as always thanks so much for coming by to see me. I'd love it if you took a minute to sign my guestbook. I hope you all have a great night and rest of your weekend!
Friday, January 20, 2006 9:59 PM EST
--Leo Buscaglia
Hi Everyone,
Well, today was a "club bed" day, as Tara would put it. I've spent the day in my PJs in bed resting, hooked up to my IVs, trying to eat what little I can handle (which today has basically been saltines and popsicles), and trying to keep myself occupied while getting rest. I got to talk to Tara online for a while this morning which was great and I got my new Netflix movies and watched Eternal Sunshine of the Spotless Mind which I thought was really good (I'm going to write a little bit about that in a minute since it's Friday, my day for doing a little creative or reflective writing). My stomach has been about the same as it's been - the pain hasn't been as bad as it was yesterday but I really haven't tried eating much today so that's probably why. I keep going over to my "tower of salty snacks" on top of my mini fridge in my room (I have a bunch of the disposible tupperware type containers with various snacky things in them stacked up on top of the fridge) thinking I'll be adventurous and try something but then I bring the container back over to my bed and it just sits there. Today I was going to try a little chex mix but it just sat there and I'm glad I didn't try it because things are pretty managable when I don't eat anything (minimal pain and nausea), but I know that's not an answer so hopefully the GES on Tuesday will show something. And if not, hopefully I'll figure something else out soon. Tomorrow will be another "club bed" day and I have another Netflix movie to watch and more saltines (although no popsicles - I may have to send someone out for some).
Okay, now for my reflective/creative writing. If you have seen Eternal Sunshine of the Spotless Mind (from now on I'll just call it Sunshine since the name is insanely long) you already know what it's about but if you haven't, the basic question that the movie asks is whether we would choose to erase a person from our memory because they caused us pain. (I don't think I put that as well as I would have liked to but my jello brain is being especially wiggly tonight.) So, the movie made me think about things. I, as I'm sure most of you out there, have bad memories from a past relationship where things didn't end as well as I would have liked. I have basically only had one really serious relationship in my life and it ended very painfully for me. Although Jeff and I broke up nearly 3 years ago in a lot of ways I think I'm still getting over it. But even though things ended badly and I have spent so long trying to recover from the emotional pain of it, I wouldn't give up the memories of that relationship for anything. Not only do I have many many happy memories of our time together, but he changed me and helped me become who I am and I wouldn't change that. Jeff and I have since been able to talk and kind of become friends (although we talk maybe a few times a year) - he's my brother's best friend so I tend to run into him every once in a while and it's nice now that things are a little calmer between us. I can't say that the pain isn't still there, or that I might not consider erasing just the painful memories if given the choice, but the movie certainly did make me look at things differently. If you haven't already seen it, I highly recommend it if you're up for kind of a heavy (and longish) romantic drama.
Okay, that's it for me for tonight. I hope you all had a good day today! I'm going to swap my IV saline for my Primaxin and then settle in to watch "Ice Diaries" (my new Friday night show). Sweet dreams!
Thursday, January 19, 2006 10:46 PM EST
Down from the door where it began.
Now far ahead the Road has gone,
And I must follow, if I can,
Pursuing it with eager feet,
Until it joins some larger way
Where many paths and errands meet.
And whither then? I cannot say.
--J.R.R. Tolkien
Hi Everyone,
Today overall was just a very tiring day. Last night I had a really great time talking online to my awesome friend Tara. It was just so great to talk to her and she has been so supportive lately since I've been dealing with this big crash and the awful GI problems and it really was just so great to get to chat with her for a while. This morning I stayed in bed for a while before I had to get up and throw on some real clothes, and go off to work for a few hours. Work was fine (my main job today was to figure out how to use the new copier/scanner/faxer/printer - not a hard thing to figure out) but tiring being out of the house and having to sit up and everything. And then tonight my brother and sister and I had our postponed sibling night which was fun but so tiring. My sister drove the whole way to Cracker Barrel on back roads. It took about 2 hours (including a side trip to drop my brother's girlfriend off at home) but she did a great job driving, especially for just getting her permit on Tuesday. Dinner was fun but I was already exhausted from the ride and my stomach was hurting a lot so it wasn't as enjoyable as it would have been otherwise. I managed to eat a little mashed potatoes and a little applesauce and half a biscuit so that was pretty good for me but now I'm in a bit of pain and I'm dealing with pretty intense waves of nausea (I have a small waste basket set up next to my bed as an emergency puke bucket if necessary). I brought home so much of my food so I'll have leftovers for a week or more but it was just nice to get out with my brother and sister and have a little outing. Now I'm just doing my Primaxin, then I'll hook up to my fluids and head to bed.
I got my weekly lab results this morning and they're going downhill which isn't a good sign. My white blood cells are continuing to fall - they were only a little low last week at 4.0 (down from 5.3 the week before) but now they're 3.1 so that's not a good sign. My basophils and neutrophils are a little off but not by a lot and my alkaline phosphatase has dropped into the low zone again after a sudden jump up a few months ago followed by a steady but slow decline. I don't know what's going on but something's wacky here with my labs. We'll have one more week of labs before I see Dr. Bock next Thursday so maybe that will help give a clue of what's happening but I'm not sure. I faxed Dr. Bock this afternoon just to give him a heads up about what's going on so he's not shocked about how badly I'm doing right now. To be perfectly honest, I'm not sure if I want to stay on the Primaxin or if I want to take a break from it. A break would be nice because I could get more sleep but I'm not entirely sure it's not helping me. I just don't know how I'll get out of this huge crash. Well, first I think I need to figure out the GI stuff, beyond that I guess I'll just have to see what Dr. Bock has to say and take it from there. Whatever he wants to do I just need to be prepared for it. And tomorrow I'm staying in bed all day - no doctor's appointments, no work, no nothing. Just me, some DVDs, some schoolwork (reviewing for the final exam for my online class), and my bed.
Okay, that's it for me tonight. Please take a minute to go over and offer some good thoughts to Sarina who just got out of the hospital and please keep all the other Caringbridge kids (and adults) in your thoughts, especially those going through tough times. Hope you all have a good night!
Wednesday, January 18, 2006 10:15 PM EST
--David Russell
Hi Everyone,
Well, today didn't end up exactly the way I thought it would. My plan was to go out for a "Sibling Afternoon/Night" with my brother and sister but I called to make an appointment with my old GI doctor and they could either give me an appointment for mid-March or fit me in at 2:45 this afternoon. So I cancelled my plans with my brother and sister (as much as I didn't want to do that) and took the appointment. I have mixed feelings about the appointment and I'm just going to do a quick(ish) recap here 'cause I'm really not feeling well right now. Dr. B (the GI) came in and asked what's been going on so I started with the fact that since I saw him in 2004 my stomach really hasn't been the same - can't eat "normally", feel sick after eating, can only eat a little at a time, feel full for a long time, feel nauseous a lot, etc. I said that I was able to live with this but then over the last few months things slowly got worse and then over the last few weeks things got REALLY bad to the point where now I'm really not able to eat much of anything. I don't remember a whole lot of the other questions and answers at this point but I know he asked about where the pain is, when the nausea happens, and that kind of stuff. But he didn't ask anything about what I'm able to eat or which foods are especially bad or anything like that - no questions about my eating at all, for that matter, so I don't think he completely understands the situation. He does know I've lost a lot of weight very fast but I don't know if he realizes just how bad things are. It's hard to make people understand that just because I'm not throwing up it doesn't mean that my stomach is just a little upset. I feel like I'm going to throw up a lot, and believe me it would actually feel good to throw up and just feel some relief sometimes (and probably be taken more seriously than just saying I have nausea) but I'm not going to go there tonight.
So, anyway, he did an exam and everything and drew his conclusions and I'm just not going to get into that right now. I asked him about gastroparesis and he said it's possible that's what it is, but he said something about how people with GP don't tend to have as much abdominal pain as I'm having and that they tend to throw up. But he did order a gastric emptying scan (GES) so that's all scheduled for Tuesday afternoon (Tuesday isn't going to be a fun day - Psyiatrist appointment with Dr. M in the morning, then the GES at 1:00pm - looooonnnng day for me). Overall I just have mixed feelings about the visit because I was mainly going there because all these symptoms are linked to eating but the eating part of it wasn't addressed at all. It was like it was in one ear, out the other. And I like Dr. B - he's nice, and seems to listen, and has a good sense of humor. I have a new medicine to try and I go back in 8 weeks (I assume that if the GES is abnormal I'll go back sooner, but I'm not sure).
Through all this I feel so lucky to have two awesome DYNA and CB friends who have their own GI problems and know what I'm going through - Diana and Tara. They have both been awesome, I've been e-mailing with them, texting with Tara, and just getting so much support from them.
So, since I got home I've just been resting (I was at the doctor's office for 2 1/2 hours because they were running late and Dr. B took a long time with me, etc.) and getting my saline in. I was feeling really awful so I've basically been getting my saline in fast and I'm feeling a little better with that but I'm still so tired. I did manage to do a tiny bit of schoolwork and I'm now done with all the chapter readings and quizzes so I just have the final exam to take and I'll be done with my online Cultural Anthro class! Yay! Just in time for my class at Wheelock which starts on Monday! I hope I'm feeling a little bit better by Monday but I'll make it up to Boston even if I'm feeling awful - no choice in the matter, I'll do what I have to do. That's it for me for tonight. Tomorrow I'm working for a few hours and then possibly going for a postponed sibling night but I don't know yet (waiting on my sister's plans). Thanks so much for stopping by! I hope you had a good day and I wish you sweet dreams tonight!
Tuesday, January 17, 2006 8:26 PM EST
-Anon.
Hi Everyone,
Early update tonight because I'm falling asleep now and I'm not sure I'll get an update in if I wait much longer to write this. I went to the walk-in clinic today and it was a big frustrating visit that was basically a waste of time and just left me more frustrated than before I went. I got the doctor instead of the nurse practitioner which was the beginning of the frustrations (I like the NP so much better, not that the MD is all that bad). From the get go he started talking about how they really only look for the "usual" problems and don't see problems that are out of the ordinary that much (I started thinking, "okay, well my body is a bit out of the ordinary to start with!"). He listened to my complaints but I didn't really feel like I was explaining myself well at all and the complaints of "nausea and abdominal pain" were just so vague that I'm sure immediately that got us off to a bad start. It was so hard to describe the pain because it changes so much - sometimes it's cramping, sometimes it's sharper but moves all over the place, it actually woke me up in the middle of the night last night and felt kind of like a rock in my stomach but somehow I couldn't think of the words to describe it like that while I was in the office so I just said, "I don't know how to describe it" and left it at that. I felt that the whole visit felt pretty rushed, I didn't feel that the dr. listened to me or took a good history, and his quick diagnosis of "the start of a peptic ulcer" really doesn't fit my symptoms at all. He prescribed Nexium and another thing for ulcers but I'm not going to go ahead with either of them. I'm going to make an appointment with my old GI dr. and go from there. It was just a big frustrating appointment and the doctor was absolutely no help at all and didn't seem concerned at all.
After that I came home for a little while, sent off an e-mails to my DYNA friends Diana and Tara to vent a little about the appointment and get some advice (they're both so great and Tara immediately text messaged me and made me feel so much better about everything) and then headed off to work for a few hours to start getting the summer Art Camp things in order (can't believe it's already time to start thinking about all that!). Work really wore me out and after that I've just been resting, watching some TV, talking to my dad about things (I'm trying to help my parents understand exactly what's going on with my stomach and they're trying to get me to eat which is frustrating for both of us since eating is so hard for me). I did manage some mashed potatoes tonight and I'm in some pain now but I'm going to curl up and take a nap so hopefully it'll go away soon. Needless to say I didn't make it to choir rehearsal tonight - I'm just way too worn out for that tonight but hopefully I'll still be okay to sing with the choir on Sunday.
I'm off to dreamland (not for the night I don't think, still have my evening Primaxin to wake up for in a little while). Thanks so much for coming by to see me! I hope you all had a good day today. If you get a chance, take a few minutes to go over to my blog, today I put up something I wrote yesterday. Hope you all have a good night!
Monday, January 16, 2006 10:45 PM EST
but where he stands at times of challenge and controversy."
--Martin Luther King, Jr.
Hi Everyone,
Just a quick update tonight. Today was another "blah" day for me spent in my PJs in bed. I ventured down to the kitchen once to heat up my rice pack for my tummy and get some ice cubes. Other than that I haven't been past the end of the hallway. But I've been trying to drink and eating my saltines and occupying myself on the computer, listening to books on my mp3 player, and watching some TV. And tonight I got to talk to my great DYNA friend, Diana - she's a bit of a GI expert so she was great about answering some questions for me and helping me think things through. I think I'm headed to the walk-in clinic tomorrow because the nausea and abdominal pain is definitely not getting any better and if anything it's going downhill (at least my eating seems to be). I'm definitely taking my Zofran as much as I can and using my Vomitusheel (homeopathic nausea medicine) quite a bit in between. But I'll let you know more about all that tomorrow. Now I'm just watching the end of the Golden Globes, infusing my Primaxin, and I'm going to try to jot down the progression of my symptoms so I'll be prepared if I go to the walk-in clinic tomorrow.
And before I sign off for the night, I want to let you know that I've decided on a name for my wheelchair. Thank you to everyone who suggested names but the name I actually chose isn't one that was suggested for the wheelchair. Someone suggested Nemo for the monkey on my IV pole and that got me thinking about the Finding Nemo characters and I decided I liked the name Dory for my wheelchair. Not only is that movie a great movie and leave the door open for putting stickers or other things on possible wheelchair bags, but Dory has a great attitude and I love that to go along with my wheelchair! So, no matter what happens, me and Dory will just keep swimming!
Thanks so much for coming by to check on me. I hope you all had a great Monday, whether it was a regular Monday for you or the end of a long weekend (Martin Luther King, Jr. day here in the US). Sweet dreams!
Sunday, January 15, 2006 9:21 PM EST
and it's time to step into the darkness of the unknown,
faith is knowing that one of two things shall happen:
Either you will be given something solid to stand on or you will be taught to fly.
--Edward Teller
Hi Everyone,
For some reason this evening I'm feeling kind of emotional, like everything is right there below the surface and ready to break through. I tend to put on a mask for most people to see and keep things inside. Maybe I feel like if I put on the happy face and look like things are okay, that will make things better. And to some extent it probably does work because it helps me keep a positive attitude. But eventually it backfires and I end up suppressing too much. It's been hard to deal with everything over the past few weeks and I guess it's catching up with me and I just need to deal with some things, both by myself and maybe with other people.
But enough about that, now for my day (not that it was that exciting). I made it up for church this morning although I wasn't feeling great. I'm glad I went because my friend, Michael, was there. He hasn't been doing well lately because he's been dealing with a month-long migraine that just isn't letting up. He made it to church today because he thankfully wasn't having any pain in his head today but nothing that his doctor has tried has relieved the pain (even a morphine pump). He's awaiting an appointment with a neurologist in the beginning of February but that's a long way off so if you could keep him in your thoughts I'm sure he could use all the positive energy he can get. I also got to talk to my minister, Tricia, for a few minutes and let her know that I was touched by her mother-in-law's letter (see yesterday's entry for info on that). I also told her a bit about the trouble I've been having lately and that I've been spending most of my time in bed resting so she asked if she could come by and visit me sometime this week which will be nice. It's so sweet to have so many people at church who care so much about me. After church I came home, got back in my PJs, and I've just been in bed for the rest of the day hooked up to my various IVs and watching TV or on the computer. Now I feel like I'm ready to go to sleep for the night but I have a few more hours to wait 'til I can do that (stupid IV schedule) so I'll just try to get some more fluids and maybe some applesauce or some more saltines in if my stomach agrees. And I have Grey's Anatomy to look forward to in a half hour.
Thanks so much for stopping by to see me! I'm still taking suggestions for names for my wheelchair but I think I'll decide on a name tomorrow night so this is your last chance to get a name in! Just sign the guestbook and leave your suggestion (see the journal history for some more info about the wheelchair if you haven't been here for a while). I hope you all had a great weekend and have a good night tonight!
Saturday, January 14, 2006 11:24 PM EST
---Dale Carnegie
Hi Everyone,
Today was an uneventful day for me but it was also my younger sister, Margaret's, 16th birthday! I can't believe she's 16 already. She's going to get her driving permit on Tuesday (she was pretty bummed when she did the calculations a while ago to figure out that not only did her 16th birthday fall on a Saturday but on the Saturday of a long weekend) and she's really excited about that. It's also really cool that she'll get to drive with me since I'm over 21 and have had my license for more than 5 years so we're planning a sibling outing (with our brother, Patrick, too) for Wednesday afternoon and we'll take back roads and little highways so she can drive most of the way. So I was in bed pretty much the whole day watching TV and doing stuff on the computer (if you're ever looking for a good movie to watch and are in the mood for a pretty heavy social commentary dramatic movie, I highly recommend Crash, which I watched today). I got up to wrap all of Margaret's presents (I got her quite a few things - a great soft fuzzy pillow, a blue zebra stuffed animal, a cute waste basket that has a monkey stuffed animal on the front, a Salvador Dali calendar, a cow pez dispenser keychain, and 3 Yankee Candle hanging car scents), then rested for a while longer, did a little reading for my online class (I've been chipping away at the class by doing a little reading every night before going to sleep while I wait to get tired and I'm down to just over 1 chapter left! yay!), and then went out to sit with the family while Margaret opened presents and the rest of the family ate pie and ice cream. I had some applesauce while they ate the pie so I wouldn't feel left out.
So healthwise today my stomach isn't good (nausea, feel like I'm going to throw up, some pains, basically only eating bland foods and mostly liquids (Boost, applesauce), blah blah blah), I'm really exhausted, but hanging in there and trying to just rest. Next week was supposed to be that rare thing, a week with no doctor's appointments, but I have a feeling it won't end up like that because of my stomach issues. I think a trip to the walk-in clinic will be in the cards and who knows what will happen from there but I'll keep you all updated about that as it happens.
Yesterday I forgot to mention that I got a really sweet letter from my minister's mother-in-law. I don't know her personally (she lives in Vermont) but she came to the Christmas Eve service that I sang "Ave Maria" at and she really enjoyed my solo. So she asked Tricia (the minister) about me and Tricia told her all about me and my struggles and everything and gave her the address of this site! Anyway, so this letter was so sweet and this woman who I have never met has now read about me and my life and made a point of sending me a note to let me know that she is thinking about me and that my singing touched her. It was very sweet and came at a good time when I'm not doing that well and these kinds of things mean that much more. And on a similar note, thank you so much to everyone who has signed my guestbook in the past few days. And a special thank you to everyone who has been suggesting names for my wheelchair and the monkey on my IV pole. I love all the suggestions and I'm still trying to decide on the wheelchair's name (so keep giving suggestions if you have more!) but I loved the first suggestion for the monkey's name - Sigmund!
Okay, that's enough for me to write for one night. I hope you're all having a good weekend so far!
Friday, January 13, 2006 11:13 PM EST
--Earl Nightingale
Hi Everyone,
The trip to the mall today was a lot of fun. This morning I really wasn't feeling well (tired, generally weak, etc.) but I made it up and dressed and my mom and I got out the door only a little later than we planned with the wheelchair loaded in the back of the car. I have to say having the wheelchair helped so much. There is no way I would have lasted more than 5 minutes (or, heck, even past the door) without it but we ended up being at the mall for about 3 hours. I got some cool stuff for my sister for her birthday that I think she'll really like (I don't think she reads this page but on the off chance that she does I won't say anything about what I got her until after I give her everything tomorrow evening) and I got a few things for myself - a shirt and a pair of pants (both on sale quite a bit), a calendar (50 ff since it's already into the new year), and a purse. It was a really nice outing and nice to spend some time with my mom. She has been good lately about trying to understand what's going on with my stomach and not forcing food on me but letting me do what I need to do, which really means a lot to me. The trip out definitely took a lot out of me, even without having to be walking around, and I've spent the rest of the afternoon and evening in bed resting and taking some short naps. If you missed my update from yesterday, I've decided I need to name my wheelchair, even if I'm not going to use it very often, and I have one suggestion so far but I'm still accepting more! Just sign the guestbook and leave a name suggestion. Here's a picture of the wheelchair in case that will help you:
I was very relieved that I didn't feel like people were looking at me funny for being pushed around at the mall (we were there kind of early in the day which I think helped) so I'm definitely viewing it in a positive light. It's not something that's holdling me back but rather something that can give me freedom and let me get out into the world a little more when I'm not doing as well and not as mobile on my own.
You may remember from last Friday that I decided at the beginning of this new year to include some kind of weekly reflection or creative writing or something each week (usually on Fridays), so here's this week's. I wrote most of this poem this summer but just took some of it out and re-wrote parts. Enjoy!
And at the end of every story
Is another waiting to begin
And every ripple we cast
Will come back to us again.
Every night will slowly pass
'Til the sun begins to climb
In a blaze of vibrant colors,
The visible march of time.
Every tide we fight against
And every wave we surf to shore.
Every day lived to the fullest
Only leaves us wanting more
When this night has passed by
And the darkness begins to part,
I'll be left here with possibilities.
A new day; a new start.
But with every new beginning
Comes the end of another tale.
But through the storm, until the end,
Onward I will sail.
Thanks so much for stopping by to see me. I hope you've all had a good week and that you have a restful or exciting weekend planned, whichever will make you happiest! I'd love it if you'd take a minute to sign my guestbook, with or without a wheelchair name suggestion. Sweet dreams!
Thursday, January 12, 2006 9:57 PM EST Hi Everyone,
Today has been kind of a mixed day. I'm still not feeling good but I'm starting to really put the pieces all together and figure it all out so I'm feeling good about that. I'll talk more about that in a minute. First, the highlights of my day. 1) I got a shower (always nice but tiring) so I'm all nice and clean tonight and ready for a trip to the mall tomorrow, wheelchair and all (I'll talk more about my feelings on that in a minute, too). 2) I got 2 new Netflix movies in the mail - Garden State and Crash. I watched Garden State and really liked it - not a bad way to spend a restful afternoon in bed! And the best highlight of my day also came with the mail. 3) My awesome DYNA friend, Tara (visit/tarabara) sent me an amazing letter that really lifted my spirits. She has been having a rough time lately - recently in the hospital and diagnosed with a new condition and just having some rough stuff to go through and it means so much that she took the time to write this really long and supportive letter to me, complete with multiple colored writing. So, Tara, if you're reading this, THANK YOU SO MUCH FOR THE LETTER! It really did make my day!
Okay, now back to the stuff I said I'd talk about in a minute. I'm starting to put the pieces together and realize what's going on with my GI problems (nausea, no appetite, etc.). I've had these problems along with some other related ones (trouble eating very much, abdominal pain after eating (and sometimes not after eating), etc.) for a while and I don't think all the problems right now are caused by the Topamax, although it certainly doesn't seem to be helping them much. I think that the tailspin I've been in since the sleep study just before Christmas has caused a major crash in my GI system so it's bringing all this up. My suspicion is that this is all Gastroparesis which is apparently not uncommon with both Lyme and Dysautonomia, and makes a lot of sense for Lyme-induced Dysautonomia that could be caused by vagus nerve damage because the vagus nerve also controls the emptying of the stomach (sorry if this is getting technical, it's mostly me thinking this through). So those are my thoughts on this. Now I need to figure out which doctor to go to about it.
And about my feelings about the whole wheelchair thing. For a while I was dwelling on the negative aspects of needing to use my wheelchair for the first time to go out to the mall tomorrow - not being able to go to the mall by myself, feeling that sick and weak, people looking at me funny, etc. But, today I started thinking about it another way. I've been more or less stuck in my bed since Christmas with a very few non-medical outings. No matter how much you don't want to, you can't help but get down in the dumps after a while. So instead of seeing the wheelchair as something holding me back, I'm going to view it as something to set me free. Something to make it possible for me to get out into the world, have a few hours out of the house and hopefully brighten my spirits. I don't want it to become a regular occurrance because I'm hopeful that I'll get out of this tailspin soon (hopefully once I get the GI problems sorted out I'll start feeling a little better and get a little more strength), but if I want to go out somewhere and I'm not up to the walking or standing, I'm not going to sentence myself to staying home in bed. This is what I'm thinking now. Hopefully my feelings about it won't change for the worse after actually experiencing an wheelchair-assisted outing tomorrow.
One last quick thing I want to say tonight. This Christmas I got a cute monkey in my stocking that has those long arms and legs that velcro together and can hang from things and I have it hanging from my IV pole but I need to name it so, any suggestions??? Also, since I've named all my other medical stuff, I'd like to name my wheelchair, even if I don't end up using it that much. So any suggestions for that? Here's a picture of the monkey and a picture of the wheelchair to help you all:
Thanks for stopping by! I hope you've all had a good week so far and I wish you all a great night with sweet dreams!
ADDITION: I forgot to add that I got my lab results for this week's labwork and my alkaline phosphatase is continuing to decline - not a good sign but it seems to go along with the decline in my health I've been seeing over the last month or so. It's not below normal yet but it's heading in that direction so I'm kind of worried. Plus my white blood cells are low this week, but not horribly low so I'm not worried about that. Just wanted to add that!
Wednesday, January 11, 2006 10:26 PM EST
because a could-be is a maybe who is reaching for a star.
I'd rather be a has-been than a might-have-been, by far;
for a might have-been has never been, but a has was once an are."
--Milton Berle
Hi Everyone,
So I mentioned last night that I think my stomach/eating issues are a combination of things - I'll elaborate a bit here. 1) Those of you who have been reading here for a while will know that I've been battling nausea and eating difficulties for some time now (mostly since September 2004). It's been up and down with some periods of being able to eat pretty normally followed by a time of having to eat mostly liquids (i.e. boost, protein drinks, etc.). 2) Since the sleep study on December 23rd I've been dealing with a major overall crash including, to some extent, an increase in nausea. I've gotten back on a somewhat better Zofran schedule and that has helped somewhat but the nausea is still definitely there. 3) Add to all that the increase in the Topamax which can cause as side effects nausea and loss of appetite and it's a pretty bad situation. I think each of these things on its own wouldn't be that big a deal but when they all gets combined together it's just becoming too much to handle. After doing some reading and searching online today I'm beginning to suspect that I have an underlying GI problem going on that's being exacerbated by all these other problems but I'm not sure yet so I'm not going to get into it. I'm going to look into it more and try to sort through it all (maybe with a trip to the walk-in clinic or my old GI doctor). It does seem to me that the Topamax is playing a role in my not eating but I honestly don't think that's the only thing going on here right now. I just increased the dose earlier this week and I think I'm going to back down to what I was on before that increase for the time being and see if it helps. This is just so frustrating.
Okay, with all that said, my stomach hasn't been great today but I've been drinking better so that's good at least. It's been an unexciting day spent in bed. And I'm expecting tomorrow will be a repeat of today but maybe I'll be feeling a little better. On Friday I'm hoping to make it out to the mall with my mom (possibly with the wheelchair) - my sister's birthday is on Saturday and I still have some things to pick up for her. I have mixed feelings about the whole wheelchair thing but I just need to deal with the reality of what's going on right now and do what I need to do. It's been so long since I've been to the mall that I'd just love to get out there for a while.
I hope you all had a good day today. Thanks so much for stopping by! I'm just going to curl up here with my saltines and gatorade and watch some TV 'til my Primaxin is done infusing. Hope you all have a good night!
Tuesday, January 10, 2006 11:29 PM EST
Because if you lose your life goal, at that moment, you die."
--Pandemic: Facing AIDS
Hi Everyone,
Very quick update. I'm feeling pretty awful tonight and today just hasn't been a very good day in general. I spent the day in my PJs in bed, didn't manage to eat much at all, was just exhausted and generally feeling pretty yucky. I watched a good DVD, though, that the quote at the top of this update is from. And I decided to drag myself into some "real" clothes and made it out to the first half of choir rehearsal which was nice but really wore me out and when I got home I mixed up some Carnation Instant Breakfast which I think was a big mistake since I'm now feeling really nauseous from either that or the Primaxin. So I'm here with my Vomitusheel (homeopathic nausea med) and just waiting for the Primaxin to be done infusing so I can go to bed. I think the nausea and lack of appetite is a combination of things but I'm not going to get into that tonight, maybe tomorrow. Hope you all had a good day today! Thanks for stopping by!
Monday, January 9, 2006 11:01 PM EST
Hi Everyone,
I just looked at what I wrote last night and it seems like I've been writing an awful lot lately! I'm going to try to keep tonight's update short(ish) but I don't have much to say so it shouldn't be too hard. Today's main event was my appointment with Dr. Smigel, the other doctor at Dr. Hood's office (my PCP). First of all, she didn't have the results from my sleep study so I don't have those to share (I know you're all really disappointed about that - I'm really more curious than anything else). I have mixed feelings about the appointment itself mainly because this was the first time I had met Dr. Smigel and I'm not sure if I like her or not. The biggest thing that bothers me is that it was very obvious that she hadn't looked at my chart or records at all before coming in the room so she had no idea about any of my current health issues or past history. In my opinion, that's pretty unprofessional. She knew I had this appointment coming up for a month or more and it seems like she should have taken enough time to at least skim through my chart, as limited as it may be (my chart at Dr. Hood's office doesn't have nearly everything in it), even if it was just for the minute or two before coming into the room to see me. It also seems like no one in the office there (Dr. Hood, Maria (the NP), or Dr. Smigel) understand exactly why I'm going there every month (to just be checked out and monitored between my visits to Dr. Bock at his request) so Dr. Smigel seemed to be questioning my reasons for seeing her and it all just bothered me. But, Dr. Smigel just basically checked me over and she understood that my port isn't a PICC line (see my update from last night if you don't know the story behind that) and everything seems fine.
So when I got home I talked to my mom about my frustrations with Dr. Hood's office in general. It seems like every time I come back from an appointment there I wind up unhappy with at least half of the visit. One of the major issues is that the whole office is very "professional". This may seem like a very good thing in some regards, but it doesn't feel like the doctors really care as much as I'd like. They all seem very nice and I do like Dr. Hood, but even she is very distant and I don't really feel like I can talk freely with her and a lot of the time I don't feel supported or believed by her or the other people there at the office. Even if they don't agree with the treatment I'm on for Lyme, I'm not going there for the treatment so they really shouldn't be trying to act as my Lyme doctor. At my two visits with Maria (the NP), she asked me if Dr. Bock was doing Lyme titers on me (at both visits) obviously not realizing that a titer can't be used to monitor progress since it's looking at the immune system and not the bacteria load. And today Dr. Smigel asked if I'd had a lumbar puncture ("Yes, two!") and when I told her they were normal she didn't press the issue but I could tell that didn't help my credibility. I feel like maybe that office isn't the best place for me to be going right now, at least not on a regular basis for this monitoring, so my plan is to go for my next scheduled appointment with Dr. Hood on Feb. 9th (partially to get my sleep study results, although if I find out they're normal before then I may cancel the appointment) and then see if I can start going to see the NP at the walk-in clinic we go to (they also take appointments). That's where I went last fall when I was having trouble eating and losing weight rapidly and they took me seriously and were supportive. While they do believe in treating early Lyme aggressively, they don't really believe in long-term treatment but they respect my other doctors and it isn't a big issue so I think it would be okay. We'll see how things go.
Health-wise today, things are about the same so I won't go into that. We (my mom and I) think the problems I'm having eating might be from the Topamax I'm on for my headaches. Some of the side effects of Topamax are loss of appetite, nausea, and weight loss (how could you not lose weight with loss of appetite and nausea?). So, what I need to figure out is whether or not I want to push through and see if it gets better or call Cathy at the neuro's office and see if I can back off the Topamax to see if that helps. I hate to back off it since it is helping my headaches. GRRR! I wish I could just have a medicine work without stupid side effects for once! I'm doing my best to drink the protein powder and soy milk (I've found regular milk and my stomach don't mix very well) and I'm eating a little everyday but if things don't get better I'm not really going to be able to go on very long like this. Sigh!
So much for not writing much today! It's all that writing about my thoughts about what to do about the Dr. Hood situation. Oh well, if you've made it through the whole thing and keep coming back day after day...I'm impressed! And please do sign the guestbook so I know who is sticking around! Please keep Kara in your thoughts as she recovers from surgery this morning - she's in quite a bit of pain and could use a lot of good thoughts sent her way.
P.S. I spent some time putting an entry in my blog. Go check it out if you have a few minutes!
Sunday, January 8, 2006 7:19 PM EST
Hi Everyone,
Nothing too exciting about today. Still not feeling very well but I'm not really going to start complaining. I made it out to church this morning which was good. The choir sang which is ordinarily a little bit of a struggle for me - the whole standing up while trying to breathe deeply and not topple over can get a little challenging sometimes - and what with me having a rough few days and not eating very much it was that much more difficult. But my choir buddies are all great and provide a little "buffer zone" around me (they basically don't let me stand on the end of a row) and I was okay but I definitely wasn't staying for coffee hour after the service as I had reached my limit of standing time. After the service I did manage to run over to the pharmacy for a few prescriptions and a quick trip next door to the grocery store to pick up another flavor of protein powder and a few other odds and ends. Since then I've just been resting.
I've been thinking a lot about the upcoming semester at Wheelock. I have been on a leave of absence for a year and a half and now I'm going back for one class on Monday evenings. I'm a little worried about being able to handle the class (the commuting, the reading, the papers, everything that goes along with being in school) so I'm trying to formulate my thoughts on what accommodations to ask for from disability services. At my school, each semester each student registered with the disability services office meets with the disability services coordinator and together they decide on accommodations needed and a letter is generated to be given to each of the student's teachers for that semester. In the past, I haven't had that many accommodations - mainly that I may be absent more often than is generally allowed without consequences and that I may need extensions on assignments to be worked out between me and the teacher. But I'm thinking I'll need to ask for more this semester. Even if I don't end up needing to use them all it's better to have them there "just in case". It took me a long time to bring myself to even register with the office in the first place, and now I'm struggling a bit with the idea of how much to ask for, how much is too much, how much I need, and trying to figure all this out without having any idea what kinds of twists and turns my health will take between now and the end of the semester. I wish there was some way of knowing what accommodations I'd need but I guess I just need to make my best guess and see what kinds of things the disability coordinator has to say (he hasn't been the best guy when it comes to understanding chronic illness but maybe I'll bring him some info on my main illnesses/conditions so he'll have a better understanding of what I'm dealing with and a better idea of what I might need help with).
On a similar topic, I've been working for the past week or two on putting together some info on Dysautonomia (and NCS specifically) and port-a-caths to bring to Dr. Hood (my PCP). A little background for why I'm doing this. Since starting on IV antibiotics with Dr. Bock in July, I've been seeing Dr. Hood or someone in her office in between my visits to Dr. Bock just to be checked over and make sure everything is going okay, make sure Winnie (my port) is alright, and technically she's supposed to check over my labs but I get copies of my labs and don't bring them with me when I see her unless they're abnormal. I've been making the rounds and seeing the other people in her office since I haven't seen them before and I've had two visits with the nurse practitioner, Maria. At my appointments with Dr. Hood, she seemed to know what kind of IV line I have but at my last appointment with Maria she seemed to get utterly confused. At my first appointment with her, Maria kept referring to it as a PICC line, which is a very different kind of IV line that's placed in the arm and is a tube coming out through the skin (I had a PICC line in 2002 for six months).
Anyway, at my second appointment with Maria I had de-accessed Winnie to take a quick shower before going to see her and when she went to check to see how the "PICC" was she was obviously very confused that there wasn't a line coming out. I told her I had de-accessed to shower and she said, "Doesn't the hole ever close up on you?" I told her, "Well, you just go and puncture it in a different place," but I'm not sure she understood what I was talking about. It didn't occur to me until I was driving home that she was really confused about the kind of IV line I have. I sent her an e-mail the next day explaining things and giving some info on ports but didn't get any response back so I'm not sure if a) she didn't get the e-mail, b) she got the e-mail but didn't want to/have the time to respond, or c) she was offended that I had e-mailed her explaining about my IV line. So, anyway, I decided it would be in my best interest and the best interest of everyone in Dr. Hood's office for me to put together some info on ports (and Dysautonomia while I'm at it) to keep in my file. I've put together some info and I'll bring it with me tomorrow when I see the other doctor in the office for the first time (Dr. Smigel - like the character in The Lord of the Rings
). I hope she's nice and doesn't think it's weird that I've put together this info on ports and Dysautonomia. I may also end up going to the appointment hooked up to my fluids backpack since I haven't been feeling well lately but I'm not sure about that. The only big thing about the appointment tomorrow is that I should get the results of my sleep study. I'll let you know if it actually showed anything other than the fact that I didn't sleep much!Thanks for stopping by to see me today! I hope you've all had a good weekend. Please keep Kara in your thoughts tomorrow as she'll be having surgery and it's also her birthday. Have a good night!
Saturday, January 7, 2006 10:21 PM EST
Hi Everyone,
Today was another boring day for me. Usual morning routine, except that I guess I had change my alarm times yesterday so they were an hour off and so my morning medicine schedule was a little off but I got back on track for the rest of the day okay. Now I just have to remember to reset it for tomorrow (especially since I have to get up early to go to choir rehearsal before church). I slept in until about noon and then got up and baked some oatmeal cookies and muffins (these were both made from pre-made batters that I was given for Christmas so I just had to pop them in the oven). I went back to bed for a while this afternoon before taking a bath/shower (yay for de-accessing and being clean!). The hot water ran out on me as I was washing my hair but it was still enjoyable. If I'm up to it in the morning (or tonight) I'm going to straighten my hair but I'm not sure if that's going to happen since that requires sitting up for a while and expending energy.
Health-wise today has been a little better overall than yesterday was but still not very good. My stomach is still being difficult and I'm not eating much. I have been able to get in about a cup of protein powder mixed with soy milk (soy milk seems to be easier for me to handle than regular milk and it doesn't really taste bad), a mini muffin and some goldfish so that's good at least. And I've been drinking (and I'm hooked up to my saline right now to get a little in before bed and then the rest in at a slower rate while I sleep). I'm really exhausted and fell asleep for a while this evening while watching a "Friends" DVD. And the dizziness I mentioned yesterday is about the same or a little better but my pulse has been very wacky - when I was just standing in the kitchen this afternoon waiting to take the cookies out of the oven it was 132 which is much faster than what it's supposed to be. I'm going to try to keep a record of this to talk to Dr. Bock about at my next appointment (although it's usually not that bad, just under certain circumstances as with my other Dysautonomia symptoms).
I don't want to write a lot about this but I do want to mention that I got a letter in the mail today saying that I've been denied my application for Supplimental Security Income (SSI) which is frustrating but I've been in touch with my disability advocate and I feel that he has things under control and I'll be speaking with him on the phone on Monday. The thing that bothers me more than the denial itself is that the list of records they obtained is grossly incomplete, most notibly missing the records from Dr. Bock. My advocate also said that my claims rep. has repeatedly lost letters that my mom and my supervisor/co-worker wrote in support of my claim as well as something that his office wrote in support of my claim and he has had to re-fax them over to the office. I can tell that he is frustrated with the claim rep.'s obvious and blatant disorganization and I'm quite frustrated, too, but I'm trying not to let it get to me since I do have my advocate working for me and doing the footwork. I'm trying to stay positive but could use some extra positive energy if you have any to spare.
That's it (I didn't intend to write such a long update today)! I'm leaving yesterday's update up (below this one) because of what I wrote about skating - I don't write about non-health stuff that often and I'd hate for people to miss it because it jumped off the main page too quickly. I'm going to attempt to muster up the energy to straighten my hair now and then rest until I can go to sleep (I can literally feel the dark circles under my eyes this evening - does anyone know what I mean?). Thanks so much for stopping by. I hope you're all having a good weekend so far.
Friday, January 6, 2006 11:35 PM EST
for I have also learned from experience that the greater part of our happiness or misery depends upon our dispositions, and not upon our circumstances.
--Martha Washington
Hi Everyone,
Boring and fairly yucky day for me today - still in my PJs and I haven't left my room very much. My stomach is still causing problems so I've been trying to play it safe and although that's helped my stomach a bit throughout the day, it's put my energy in the toilet and made it difficult for me to be up walking around much because I get dizzy. So I've been laying low and watching some DVDs today (I got the BBC DVDs of The Chronicles of Narnia out of the library which was on PBS when I was little and we taped and I used to watch a lot so it's comforting to watch them again), I did some knitting, and I've been alternating between my bed and my comfy chair. Yesterday I did get around to vacuuming my room and it's so nice to have a clean carpet - my room looks so much better now that it's a little rearranged and cleaned up!
Now, I have decided that the new year is a great opportunity to try something new on here. I'm getting a little tired of pretty much just updating about what I've done everyday. So, at the end of the week (on Fridays, if not more often) I'm going to write about something else, or do some creative writing, or just reflect on my whole week or something in particular that has happened that doesn't really have to do with my health. Yes, this is a journal primarily to keep people updated about my health, but it's more than that and I want to make sure I don't fall into a rut and people don't get bored! (I want to keep you coming back, after all
) Tonight I was searching for something to watch on TV as I settled in to write this update, and after flipping around between channels I came across a show called "Ice Diaries" on TLC. It followed four teenage girls who are at the high levels of figure skating competition and showed how hard they work and what they do the rest of the time, all the time they put into off-ice training, and all that stuff. The show was really interesting, but that's not really what I want to write about. I don't know if I've really ever mentioned or talked about it on here, but I used to figure skate. I started when I was 15 (ironically when I first got sick). My brother and I would go public skating and we both really liked it and we taught ourselves to do a bunch of things before we actually started taking lessons. I loved skating - there's something so freeing about being out there on the ice. Being able to zoom around the rink, take off into the air and land (preferably on the bottom of the ice skate), curl around into a spin and then pull your arms and leg in until you're just spinning so fast you can't see the rink around you. I took private lessons, went to local competitions, won first place metals (the competitions were divided up by age and skating level and since I started skating late I was usually the only one in my "flight" (category) so I was skating "against the book" and unless I "sat on the ice and pitched a fit", as my coach would say, I was assured first place, but I always skated well), and progressed to the point where I was doing single jumps and multiple kinds of spins. I felt self-conscious being noticeably older than everyone else at skating sessions but I loved being there. When I was a senior in high school and going to the high school for many of my classes (I was homeschooled for the rest of them), I would get up really early and go skating before school. And for two summers in high school while working at art camp, I would go skate from 7:00-8:00 or 8:30 before going to work. I loved it all. I loved it and I miss it. But I still have my skates and there's still public skating available every weekday from 12-2 so for $2 I can strap on my skates and take a few laps around the rink, do a few spins, and see if I can still take off in the air. And maybe someday I'll find some skating club for adults and take it up again. Someday when I can commit to things, this will be at the top of my list. Because if we can't do the things we love, what are we here for?
Thanks for stopping by. I hope you all had a good week, had some peace and quiet, and got to do some fun things.
Thursday, January 5, 2006 5:41 PM EST Hi Everyone,
Wednesday, January 4, 2006 11:45 PM EST Hi Everyone,
Tuesday, January 3, 2006 11:12 PM EST Hi Everyone, Monday, January 2, 2006 11:51 PM EST Hi Everyone, Sunday, January 1, 2006 10:44 PM EST
I just want to put a quick update here 'cause I want to get last night's update off the main page. It felt very whiney and complaining and I don't want that to be up until I do my usual update tonight. So here's a mini-update about what I've done so far today, and it's been quite a lot! My goal was to be up and dressed and get out of the house by 11 to run errands before my neurologist appointment. And I actually achieved my goal! And I managed to run all my errands! It's just amazing! I went to pick up my check at work and to the bank to deposit it. Then off to BJ's (wholesale club) for my gatorade, propel (but not the flavors I usually get, they were out of them, so I got lemon, berry, and kiwi-strawberry), cheddar chex mix, juice boxes, and 9V batteris (for my hydration pump). The next stop was Wal-Mart but they didn't have what I wanted to I hopped over to the grocery store to get some protein powder, carnation instant breakfast (I tried it years ago and didn't like it a whole lot but I'm going to give it another shot since I need easy things with protein to drink), and a few other things. Then I zoomed off to my neurologist appointment which was actually really good. After the appointment I stopped at Pier One and hit at a really good time - big after Christmas sales! I have a gift card from a year and a half ago (my birthday) so I got some stuff with that and still have about half the card left - I love gift cards!
Back to the neurology appointment. The appointment was with the nurse practitioner, Cathy, and I really like her - more than the actual neurologist who I saw last month. We talked about how my really bad migraines seem better but my daily headaches are still there and bothersome (but I deal with them okay). The best thing, though, was that she brought up the fact that she knows my headaches are Lyme headaches and she knows that Lyme headaches are horrible, unrelenting headaches that just get worse and worse and there's not a whole lot you can do about them. She didn't want to be negative, but she was being truthful and I really appreciated that. She talked about how Lyme headaches are caused by nerve signals being sent and the more they're sent the more sensitive they are so the worse the headaches get. It was so refreshing to hear someone talk about Lyme as though they actually realized how awful it is to deal with it and like she actually believed the pain I'm in all the time. So, for now we're upping my Topamax to 50mg twice a day (I'm on 50mg at night and 25mg in the morning) and we'll see how that goes. If I'm still having trouble in 3-4 weeks I'll call the office and we'll either increase the Topamax more or increase the Neurontin (which I'm on for sleep but could help the headaches since they're probably caused by nerve problems). The balance we need to find is where the headaches are under control enough so I'm not in pain all the time but I'm not "snowed" as Cathy put it (meaning that I can't think and am really foggy all the time). I don't go back for another appointment for 3 months but I'll be in contact in between if things aren't going well.
While I was waiting for my appointment I did quite a bit of school reading (they were running about 45 minutes late) but I still have about 10 pages left to read and I hopefully will get around to vacuuming but I have a feeling that may not happen since I'm really tired from all the errands. And it doesn't help that my stomach was off today so I wasn't eating very well (I'm sitting here with some protein powder mixed up and it seems to be sitting okay so far). This is going to be it for my update today so enjoy! Thanks so much for stopping by and I hope you've all had a wonderful week so far!
Today has been a bit of an up and down day. I woke up and before I had even opened my eyes my first thought was that the migraine I had yesterday came back with a vengence. So I did my usual routine with my morning infusions and slept until 11:00am before getting up and baking some muffins (I got this muffin batter for Christmas that is frozen and you put in the fridge 12 hours before you want to use it so I just had to scoop it into the muffin tins and pop it in the oven). I did take some migraine medicine and took a fresh muffin and some tea with me back to bed for a while. Over the course of the afternoon I made a batch of rolls, spent more time in bed and on the computer and watching "Friends" DVDs (I swear, there are little bits of things on the DVDs that aren't on the episodes when they're shown on TV, like just a line or two here and there but they're so funny!), and this evening I spent a while moving some things around in my room and cleaning things up. I just need to vacuum tomorrow. Now I'm resting, watching some TV, and chatting with a few DYNA friends.
Tonight there was quite a frustration that I hopefully won't ramble on too long about. While cleaning up my room, I went to find the box for the full sharps container that I need to send back (I have a new one that I'm using now). The box was in the basement in a big box along with some various lab kits from Dr. Bock that I didn't end up using for one reason or another. I went down in the basement to the spot where it was and the whole big box wasn't there. So I went and asked my parents and they had no idea but thought there was a chance they had thrown that big box away.
My dad checked the other side of the basement where there is a huge pile of OTHER boxes (of course none of THEM got thrown away) and then went out and looked in the garage but none of us could find it anywhere so it looks like my parents did indeed throw away the box to return my sharps container in. Now, you have to understand that my parents don't throw ANYTHING away. We have boxes upon boxes upon boxes in the garage and the basement that could have been thrown away instead of this particular box of boxes but for some reason they didn't look close enough to realize that these boxes that they assumed were empty weren't actually empty and might in fact be things I might need. Among the lab kits was also one of the lab-in-a-boxes that I use every week and could have potentially used. It's all just very frustrating and I'm still quite annoyed and generally po-ed about it. But I'll stop venting about that since I've now spent more time and space talking about that than talking about my day!
So tomorrow's agenda includes a neurology appointment at 1:30pm, some errands on the way home (hopefully BJs if I'm up to it, the grocery store for a few drink mixes some DYNA friends suggested trying), I really have to finish up the Anthro chapter I'm working on, and I need to vacuum my room. Sounds like a really full day to me so I better get ready for bed so I can go right to sleep when my Primaxin is done (I'm really exhausted right now so I'm hoping that's a good sign that I won't have trouble falling asleep tonight - that has been slowly getting better). I hope you're all having a good week so far and thanks so much for stopping by to see me!
P.S. I just noticed that today is my half-birthday! Not that it's a big deal or anything, but I thought I'd mention it. So I'm officially 23 1/2 years old today.
Nothing much exciting happen here today. I'm obviously still trying to recover from the sleep study and overdoing it for the past month (or more) because I'm still sleeping a lot, even though I'm getting to sleep at a more normal time. Last night I got to sleep around 1am (I started my Primaxin infusion late because I didn't get home from the movies until about 10:45) which was really good compared to the 3 and 4am tossing and turning I'd been doing lately. This morning I did my usual IV routine of hooking up and sleeping and waking up to switch bags and all that fun stuff. Then I went back to sleep after finishing and slept 'til just after noon. I'm not really complaining about sleeping in that much, I'm fine with it and it's not like I'm missing out on a lot of things because of it, but I'm still exhausted and needing a nap in the afternoon even with that much sleep during the night. Hopefully I'm catching up on sleep and digging myself out of the hole instead of something else going on. And when I got up, this is what I saw out my bedroom window:
And a little later on out the back door:
Yep, it snowed a bit today. Mostly slushy stuff and it'll probably be gone soon but it was nice while it was falling. This afternoon I spent a little while doing some reading for my online class that I'm still working on finishing up. That didn't last too long, though, because my mind just wasn't cooperating and I was battling a migraine all day. The positive side of the migraine today was that it was only the second really bad one I've had in the last month since starting on the Topamax - definitely a good thing. I'm still having my little daily headaches but I'm used to those and I can live with them. (I go to the neurologist on Thursday for a med check to make sure thigns are going on track and see if anything needs to be changed.) And this evening I went to choir rehearsal, although I really felt much more like staying in bed. If we weren't going to be singing on Sunday I would have skipped it but I dragged myself there. Other than the headache and being really tired, today my stomach has been kind of off so I've been taking it easy with the food (I need to make more rolls tomorrow - those seem to be a good food staple for me and I can make Annie-sized sandwiches on them when I want something to eat).
I'm going to stop there and rest until my Primaxin infusion is done and I can call it a night. I'll leave you with one last picture of me resting in bed this evening not feeling too well:
I hope you all had a great day today!
Just a quick update tonight because I went out this evening and I'm really worn out from it (but a good worn out). Last night I said I was going to try to avoid taking the Lunesta that Dr. Bock gave me on Thursday but when it got to be 1:30 and I wasn't falling asleep with my normal sleeping meds I bit the bullet and took one. It didn't help me fall asleep all that fast but I did get to sleep before 3 so that's good at least. This morning after my Primaxin infusions were done I drew my labs and went to call Fed Ex to come pick them up only to discover that they're closed, observing New Years Day today since it was on a Sunday this year (has this whole "the real holiday is on a Sunday so we'll have everything be closed on the Monday" thing messed anyone else up?) so I was a bit frantic trying to figure out if I could salvage the blood I had drawn. I got in touch with a nurse from my infusion company and she said if I put it in the fridge overnight it would be okay to be shipped out tomorrow for the specific tests I need done. Whew! I de-accessed after I drew the labs and got a nice bath/shower in this afternoon (being clean is so nice!) before re-accessing for my afternoon infusion.
Then I got ready to go out to dinner and a movie with a few of my old high school friends. I talked a little last week about how I was feeling a little weird around my old friends and didn't feel like I was able to catch up with them properly, so tonight was just a great opportunity to really talk and just have a great time. We went to The Olive Garden (yummy breadsticks! - I brought more than half my meal home so I have my meals for tomorrow all ready) and then saw "The Family Stone" which was a pretty good movie. I'm so glad I went out and it was totally worth the crumminess I'm feeling right now. Since I'm worn out I'm going to curl up while I finish my Primaxin infusion and watch some "Friends" DVDs. I hope you all had a good day today and are enjoying the new year so far!
Hi Everyone,
I can't believe it's 2006 already. Not that 2005 really seemed to fly by or anything, but it's always an adjustment with a change like this (and I'm sure I'm not the only one who will slip up more than once and write "05" on things). But I already did my New Year's Eve post and I'm keeping it up here on the main page for at least one more day (below this update) so take a few minutes to read my ramblings and reflections if you haven't already.
Today wasn't anything very exciting in my world. I did get up and make it to church for our Kwanzaa celebration which was pretty cool and very lively with lots of stories and music. Then I stopped home quickly and went out to run a few errands. My original plan this morning was to go out to BJs (wholesale club) to get my drinks (gatorade, propel) and snacks if I was up to it and run some other errands over there but when I was driving home from church it was very apparent to me that I would need to lower my plans to accommodate my quickly dwindling energy. So I opted to go fill my Lunesta prescription and go to Wal-Mart to get enough of my drinks and snacks (and some other things) to last until I have the energy to make it to BJs. The rest of the afternoon and evening was spent resting, doing stuff online, doing some crafty stuff, and watching a marathon of "Monk" on USA. I've been watching "Monk" for pretty much the whole afternoon (since I got home around 3) and I think I may be getting hooked on it. Health-wise today I'm really tired and this evening I've been achy. My sleep does seem to be a little bit better (no 3 or 4am bedtimes for me in the last few days) and I'm going to see if I can get away with not taking the Lunesta - some sleeping medicine leaves me feeling so groggy the next day that I'd rather have insomnia and I just don't feel like adding another medicine if I don't have to, even if it would only be for a few days.
And before I sign off for the night, I've found a way to get myself to drink more (my fluid intake has been pretty horrible lately - thank goodness for my saline infusions!)...FUN CUPS WITH TWIRLY STRAWS! I got this one at Wal-Mart today:
It's just more fun to drink out of a Finding Nemo cup with a straw that wraps around it!
Thanks for stopping in to see me. I hope you have all had a good first day of the new year!
Saturday, December 31, 2005 7:36 PM EST
Looking Back at 2005
Well, I'm sitting here on a folding chair in the kitchen while a batch of cookies is in the oven, a batch of rolls rises on the counter, and some snow begins to fall outside. I've poured myself a glass of wine to last me throughout the evening (and I'm beginning to think maybe even that wasn't such a good idea as I haven't been drinking much or done my saline yet today - I'm hooked up now so hopefully a glass of wine won't have really bad repercussions) and I'm ready to look back at the year that is coming to a close tonight. I'm alone tonight, partially by choice and partially just because that's how the cards landed - my brother is out working and then off with his girlfriend (I think), my sister is off with her boyfriend, and my dad is picking my mom up from a wedding she played at this afternoon and then probably going to a folk concert this evening (NOTE: My parents ended up coming home as I was typing the later parts of this so I'm not home all alone). I'm not sad about being alone, I really don't mind it much and it gives me a chance to have full use of the house without worrying about having to get into grouchy conversations with people (I'm usually the grouchy one). So I'm baking, listening to some music on the radio, watching the snow beginning to fall, and sipping my wine very slowly. I'll probably pop a video in when the baking is done and watch the ball drop at midnight and maybe blow the little noisemaker my brother gave me for Christmas.
So, looking back on 2005. It's hard to believe that the year is coming to a close. This year hasn't had anything in particular happen that has defined it, nothing especially awful or wonderful has happened to me, no one special has entered or exited my life, and the specifics of it don't seem that special. When I look back at where I was at this time last year, there don't seem to be any amazing differences but there are definitely changes that I feel deserve being noted.
In February 2005 I received my diagnosis of Neurocardiogenic Syncope. The diagnosis itself didn't change much, but the treatment has made a big difference for me, making it possible for me to be sitting here drinking wine in the first place (my last encounter with wine before beginning the IV hydration was not a happy meeting and after that I didn't drink for quite a while) and allowing me to avoid as many major crashes as I used to have. I am now able to take showers almost always standing up the whole time if I so choose and my energy level seems to be more consistent. In short, is has been a good thing.
The diagnosis also led me to discover DYNA, which I joined in March. DYNA has been an amazing support. I have met people to laugh with about our mutual brain-lacking, who understand exactly how hard it is to deal with a chronic illness 24/7 and all that it entails, who know how frustrating it can be to feel like you're doing well only to crash, who realize that just listening sometimes can be the best medicine. These people are wise beyond their young years, many of them are younger than me but they feel like (and are) my peers, and I am so very grateful to be blessed enough to have them in my life.
This year I managed to put on two big young people's theater shows - "Alice in Wonderland" in June and "The Wizard of Oz" in December. "Alice" was my own project, done with only the help of parent volunteers, and I was so proud of my kids and myself for pulling it off. "Wizard" was done with the help of my co-teacher/co-director, Michele, who, although we didn't always agree, has been a great friend and support. That show had Michele and I both biting our nails up until opening night, not quite knowing what the kids were going to do but they showed us all and put on two great performances. Both shows caused big crashes in my health but both were also well worth it because they were a lot of fun for both me and the kids.
This year I also managed to pull off two Lyme Out Retreats. While the one in the spring went off pretty smoothly, the one held in November was a little more stressful, with a kitchen fire, a gas leak, and all the stress that goes with those fun surprises. But these things didn't phase the group, and the retreat still went well despite the unexpected surprises and the group perhaps bonded more because of these things. I think we'll plan on skipping these activities during future retreats.
In addition to these things, I have also done approximately (and I just went and figured this out the other day) 720 IV infusions in 2005 (give or take a few) - and you have to take into consideration that I wasn't on any IV medications until May when I started the hydration, and then in July I started the Clinda which was twice a day, and at the end of October I started the Primaxin which is three times a day. And that doesn't include the fact that for the month of December I've been technically doing 6 infusions of Primaxin a day since I do 2 bags for each of the 3 infusions a day, but I consider each infusion-time to be one infusion. So far I have completed 3 college credits this year and I'm working on another 3 (to be finished in January), all done online. I completed my 7th summer of Art Camp this summer and this year was my first year as a theater teacher (the job I've been waiting for since I started working there) and my 6th summer of babysitting the same little girl, Morgan (she's turning 8 next month - oh my goodness!).
In some ways my year has gone much like those previous. But this has been the first year I have been on a leave of absence for the whole year. Yes, I'm going back for a class next semester, but that's after a 3-semester break and it's scary to think of this year being the kind of year where I've needed that kind of break. I don't want pity or sympathy, I'm just writing what is going through my head as I think about the year so bear with me. This year has been one of the most trying years as far as my health goes. I have been very sick. And this is the first time that I have been sick when I have felt like maybe there isn't going to be something to help me. My doctor has been stumped, has gotten frustrated, and has gotten to the point where he just doesn't know what to do. But, I am coming out of this year on the slow upswing of treatment. I am seeing improvement, I will continue to get better (or at least that's my mantra right now). Somehow this year, even when I've been at my lowest points, I have managed to not descend down into that pit of darkness that so many with chronic illness are all too familiar with, myself included. And I am coming out of this year stronger, happier, and on my way to being healthier than when I came into it.
Well, my wine has run out, the cookies are almost done baking, and I think it's about time to get busy kneading the roll dough and getting them in the oven. I should probably also get some real food in my stomach to congregate with the wine and keep it company!
Friday, December 30, 2005 9:26 PM EST Hi Everyone, Thursday, December 29, 2005 11:32 PM EST Hi Everyone, Wednesday, December 28, 2005 10:52 PM EST Hi Everyone, Tuesday, December 27, 2005 10:05 PM EST Hi Everyone, Tuesday, December 27, 2005 12:25 AM EST Hi Everyone,
Sunday, December 25, 2005 11:49 PM EST Hi Everyone,
I'm doing an early update because I'm just really exhausted (a growing theme this week) and generally not having a great day today so I'm not sure how I'll be holding up in a little while. Last night was not a good night for me and I couldn't get to sleep until about 3:30am or later (if I haven't already cursed that stupid sleep study enough, consider it cursed even further) which meant I had gotten very little sleep by the time my alarm went off at 8am to hook up my antibiotic. I fumbled around and got all the supplies ready and went to put on the touch light next to my bed (a Christmas present from my sister which has turned out to be the perfect thing for hooking up early in the morning) and I couldn't get it to work. Now if you're aware of what touch lights are you know how easy it is to turn them on (basically you just press it in and it turns on and stays on until you press and release it) but I couldn't get it to even light up at all so I thought the batteries were dead and just moved my curtain aside a little bit for some light and went back to sleep. Later on when I was awake more I tested the touch light thinking I'd need to find new batteries for it and it was working fine. So I guess I was still that much asleep that I couldn't get the touch light to go on but I got myself all hooked up and everything without a problem. (Goes a long way to prove the statement "I could hook up an IV in my sleep"!) Anyway, after hooking up I went back to sleep, then woke up to switch bags and went back to sleep again, then got woken up when my boss called to see if I wanted to work today (I said no) and went back to sleep again. I slept 'til about 12:30pm or so - still not enough sleep considering when I went to sleep but maybe that will make it easier for me to fall asleep at a more normal time tonight.
My day was spent in bed again. I was going to do some baking but we're missing at least one thing to make anything I'd think of making - mainly no butter. I did get the first two seasons of "Friends" on DVD in the mail today - I bought them slightly used off of ebay a few days ago - so I watched one of those DVDs today and I see a lot more entertainment in my future! (One of my goals this year, albeit a pretty insignificant one, is to collect all the seasons of "Friends" on DVD since they're all out now. I'm hoping to get them all slightly used off of ebay to save some money.)
Tomorrow I'm hoping to do the baking I didn't do today. Either that or make it out to run a few errands. At this point it's an either/or thing. I do need to take it easy so I'll hopefully hold up for the night - I want to go out to a folk concert thing if I'm up to it but we'll see how I'm feeling (it would require me to skip my evening Primaxin dose, too, which I'm not sure I want to do). And I also need to get out to fill that prescription of Lunesta to hopefully get my sleep back on schedule at some point. I will update at some point tomorrow with some kind of reflection about 2005 since tomorrow is the last day of the year (I can't believe it)! Thanks so much to everyone who has signed my guestbook with well-wishes and support! I hope you've all had a good week!
Well, I made it to New York and back today through the fog and rain and all that fun stuff (my dad was driving, though, so all I had to really do was sit there and look out the window or sleep). The appointment went well - it's so nice to see Dr. Bock happy about how I'm doing instead of just totally confused and frustrated! He thinks I'm looking the best he's seen me since he's been my doctor (just over a year) which just goes to show how awful I've been all year. He could tell I'm really doing better when I was openly saying that I'm feeling better and feel that the Primaxin is helping because he knows that I definitely don't say I'm feeling better if I'm not. So we're just keeping our fingers crossed that my insurance agrees to continuing covering the Primaxin for as long as it's helping. Other than that, no changes to anything. Dr. Bock understood the inrony of the sleep study completely messing up my sleep and he gave me a prescription for Lunesta to take for a few days to hopefully get things back on track and then have it around in case I have problems again.
I don't think I've mentioned it before but my sleep really has been messed up since the sleep study on Friday night. That night of getting so little sleep and then coming home and sleeping 'til after 1:00pm just completely threw me off and I don't seem to be able to get back on track. It really is ironic that the thing it was studying is the thing it messed up even more. Before the study I was on a pretty good schedule - go to sleep around midnight and wake up for good around 9 or 10am. Since the study, though, I seem to be a few hours off and don't get to sleep 'til 2am or after and sleep 'til 11am or noon and it just doesn't seem to be correcting itself so hopefully a few nights of the Lunesta will help. I think I'll hold off a few days until after New Year's Eve, though, since this new messed up schedule would actually be beneficial for that one night.
On the way home today my dad and I got to stop in to see my aunt and uncle for dinner and to visit for a few hours which is always really nice. It's great to have an opportunity to see them more often than we usually do since they're on our way home from New York (well, sort of on the way home). So we had a great dinner which I actually ate and then sat around and talked and exchanged Christmas presents (I got a gift card to Old Navy so I need to make a venture to the mall to get some new clothes!) and generally had a good evening. Now I'm just hooked up to my Primaxin and then I'll head to bed (I have a ways to go on the Primaxin - still on the first bag so I have an hour or so left). I'm really tired and generally worn out so I'll stop there and curl up until it's done. I hope you all had a good day today! And thanks to everyone who has signed my guestbook, it's so nice to see the messages in there!
Not a lot to say about today. It was basically a repeat of yesterday but I did manage to take a shower this evening after struggling to get my saline in and leave myself enough time to hop in the shower before hooking up to my evening Primaxin. But I did it and I'm clean and feel better. There's something about spending two days in bed that just has a tendency to make you feel all gross. I also got my lab results today and my alkaline phosphatase, although still well within normal range, is very slowly dropping. I just hope it stays normal and doesn't drop back as low as it was before. Everything else is fine so that's always good to see. I think these three days of almost nothing but resting has helped be recover a little bit and I think it will help me get through a long day of travelling to New York and back to see Dr. Bock tomorrow (with a stop in to see my aunt and uncle for dinner - always a treat) but I see many more days of resting in my near future, hopefully with some more constructive things included (I do need to get to work finishing my online class).
Before I sign off for the night, I want to say a little more about what I've been talking about the last few days about my old friends (see the entries from Monday and Tuesday for more info on that). I really do have great friends, I think sometimes I forget that because I'm in my own world for so much of the time and don't get out to see them. I don't know if it was sparked by my writings in here or from their own feelings, but two of my best friends from high school (and one of them was a best friend back through junior high, too) have decided to have a dinner and a movie night next week to get more of a chance to catch up and talk and all that good stuff that we couldn't do on Monday night. So I'm really looking forward to that. And it reminds me just how much they do care by the way they asked me when was best for me, and that we could eat in or go out for dinner depending on how I'm feeling. It's just nice to have friends who have known me...forever and been with me through so many of those ackward years (not that those years are over yet).
And thanks so much to all my online friends for all the support and love and everything that you all give me all the time. My DYNA friends, my CaringBridge friends, my Lymie friends - all of you are so great and so important to me. It amazes me how people I've never met can know exactly what to say to pick me up on a down day or make me crack up when I need it. Shared experience is a powerful thing and while I have shared certain experiences with my friends from home, I have shared experiences of a different kind with all those who are dealing with their own health issues. I'll leave it there and say goodnight - maybe go grab something to eat while I finish my Primaxin infusion and then head to bed. At least my appointment tomorrow isn't until 2:00 so I don't have to get up extra early, I just can't go back to sleep after I'm done with my morning infusion!
Today was a boring and low-key resting day which I'm not at all complaining about - it was a necessity. I'm really not feeling well which is most likely just the last month (or more) catching up with me. So this morning I did my usual infusion/sleeping routine and then woke up long enough to draw labs before going back to sleep for a while longer. The rest of the day was spent in bed sleeping on and off, doing stuff online, watching some TV and DVDs, and generally laying low. I've also been eating Christmas dinner leftovers which are yummy! Nothing like a plate of turkey dinner leftovers for lunch when you wake up to take you through the day. (Seriously, I may not be eating that much throughout the day, but at least with the turkey I'm getting more protein in!) And as you can see (and hear) I did some work on my site to change some of the Christmas decorations (although I'm sure it would have been acceptable to keep them up for the 12 days of Christmas). The new song is called "Words Fail You" by Kris Delmhorst and the words are up towards the top of the page in blue font.
Last night I talked a little bit about how it was a little hard for me to feel like I could really relate very well to my high school friends when I got together with them for a while yesterday evening. I've been thinking about it more today and I think a lot of it has to do with the setting - I was with a large group of people, many of whom I didn't really know (although I was kind of at a slightly separate table with a few people I know pretty well), and in kind of a loud place where most of my other friends were drinking. If it had been a different environment I probably would have felt a lot more comfortable talking to them about all the crazy stuff I've been through over the past year (or however long it's been since I've seen them). But that doesn't completely cancel out the fact that my life is very different from those friends' lives. Not to say that my life is any less (or more) meaningful or difficult or anything, but it's just different and at some point when you don't see someone for a long time and they don't really understand what you're going through on a day-to-day basis, it gets difficult to sit around and shoot the breeze. I'm mostly just trying to figure this all out for myself and make sense of it - I've thought about it some before but I guess I've never really been confronted with it like this before.
I realize I never told you how my solo went on Christmas Eve. It went well and I felt very good about it and lots of people at church told me I did a wonderful job with it so I'm really happy about it. My plan for tomorrow is basically a repeat of today, only hopefully including a shower since I have an appointment with Dr. Bock in New York on Thursday and I'm sure he'd prefer to have a clean patient! If I'm up to it at all, I may try to get out to pick up a few things but I'm not sure if that will happen. I'll just play it by ear. Well, it's time to hook up my evening Primaxin so I better go. I hope you're all having a good week so far! Please take a minute to sign my guestbook so I know you were here. I always wonder just who comes by to see me and I'm sure many people don't make themselves known to me so this would be a great time to say hi!
Yep, I'm up late (or early, depending on how you look at it) but it's mostly for a good reason - I went out tonight with some friends from high school. My day up until then wasn't great but I wasn't expecting a good day after such a busy weekend including my sleep study on Friday. (Make sure to check out the journal history for my update from yesterday with lots of Christmas pictures as well as the update from Saturday with all the info about how my sleep study went.) My morning started out with the usual sleep/infusion routine with sleeping mingled with waking up to change bags of Primaxin and then switching over to my bag of saline for the day. Then I went back to sleep and ended up sleeping until after 1:00pm. That's really quite abnormal for me but I'm really overtired and just exhausted so it was a good thing. The rest of the day was spent in my PJs in bed resting, napping, watching some TV and DVDs, and generally just taking it easy.
Then this evening I got an instant message from one of my old high school friends (actually my first boyfriend) asking if I wanted to get together with a group for drinks/coffee so I decided to go do that since it happens so rarely that so many of us are in town at the same time. It was fun and I got to catch up a bit with a few of my old friends but I didn't get to talk to some people I would have liked to talk to (the group was a bit segregated because there were two round tables pulled together). I was pretty quiet and really didn't talk much which I figured out on the way home has a lot to do with the fact that, although I love all my high school friends dearly and I still feel very close to them and love hanging out, we're in very different places and my life revolves around such different things from theirs. While they are busy with grad school, finding jobs, or planning weddings, I am spending my time in bed hooked up to IVs, travelling to doctor's appointments, and managing the little bit of work my energy allows. If any of my high school friends happen to be reading this, I don't mean this to be taken the wrong way at all - you're all great and I really do love hanging out with you all and I think we should do it more often (maybe that would help me feel more like talking about what's really going on with me). But the fact that my life has been so medically oriented for so long makes it difficult for me to know how much people really want to know and to feel like I can really tell people what's going on with me. The people I talk to the most now are those I have met because of being sick, not those who have stood by me through my being sick. The difference hadn't hit me until tonight and I may write more about it later but I'll leave it at that for tonight. I'm tired and need sleep badly so I'll sign off for the night.
I hope you all had a great day today and have a great week leading up to the new year!
Merry Christmas! I hope you have all had a great day today, whether you celebrate Christmas or not. I want to warn you that this update is high on pictures so if you have a slow connection, I'm sorry!
My day was a very nice Christmas but didn't include nearly enough resting and I'm so worn out still from my sleep study on Friday night (see the journal history for more info on that). Last night I got all my presents wrapped and we (my brother, sister, and I) decided to get up at 8:00am to open presents and everything which was fine with me since that's when I have to wake up to hook up my morning Primaxin anyway. Apparently, though, they decided that 7:00am was a better time and came knocking on my door then so I got an hour less sleep than I was expecting, but that was okay. So we spent a very long time opening presents (seriously, like 4 or more hours) even though we didn't have that many presents because we just went through them very slowly. I took pictures and set up a little "bed" on the couch with a pillow and blanket so I could rest between presents. Here are some pictures from the present portion of the day:
Margaret (my younger sister) with the snowman puppet from her stocking
Patrick (my brother) with the santa puppet from his stocking
Me with the stuffed elephant (Clarence Alabaster) Patrick gave me
Margaret and my mom looking at the art box I gave to Margaret
Patrick with the framed Bob Dylan album my dad gave him
Me with the set of snowman flannel sheets my mom gave me
Patrick being...well, Patrick (that's a funny stretchy hollow ball that can turn inside out that he has stretched out and put on his head and a monkey hanging from his neck)
Me and Patrick (I'm holding a little candle holder Patrick gave to me)
My mom taking a little rest on Margaret's shoulder
Me taking a little rest between presents
In my stocking I got a monkey like the one Patrick is wearing around his neck in the weird picture of him above and I promptly hung it from Roly Poly (my IV pole), which I was hooked up to all day long:
And for most of the afternoon, this was my home base and resting spot:
(I swear, I was having a good Christmas day, I was just so exhausted)
We worked on dinner on and off all afternoon and ended up eating a little after 6:00pm or so. The dinner was great and I ate too much and am now feeling kind of sick (I wasn't until I did my evening Primaxin dose) but it was worth it for a great meal. Here are a few more pictures before I head off to bed (Margaret took most of these pictures so I can't take credit for them):
Patrick and his girlfriend, Maria, after dinner
Margaret's boyfriend, Doug, trying to solve a snake puzzle my parents gave him
Me after finishing dessert
Patrick trying to solve the rubix cube Maria gave him ("It...just...won't...work...")
And one last semi-silly picture of me with Roly Poly in the background
Saturday, December 24, 2005 11:59 PM EST This was posted on LymeNet a few years ago and it took me a long time to find it but I finally tracked it down (not on Lymenet but elsewhere). I don't think you can fully appreciate it if you're not a fellow Lymie but I'm sure you can relate to the overall feeling of it if you have any kind of chronic or long-term debilitating illness. Enjoy!
Friday, December 23, 2005 8:21 PM EST Hi Everyone, Thursday, December 22, 2005 10:37 PM EST Hi Everyone, Wednesday, December 21, 2005 10:04 PM EST Hi Everyone,
Tuesday, December 20, 2005 10:31 PM EST Hi Everyone,
Sunday, December 18, 2005 7:14 PM EST Hi Everyone,
The Night Before Lymie Christmas
'Twas the night before Christmas
And out on the 'net
The Lymies were talking about
What they would get.
They talked of prescriptions
Their stockings were fillin' -
Doxy, Amoxy,
Zithro, Ampicillin.
Flagyl, Mepron,
Claforan, Tinidazole,
Some on I.V. Rocephin
Stuck tied to a pole.
After a while
they went off to their beds
And dreamed of being healthy
And not needing meds.
They rode bikes and scooters
and jogged in the Fall,
Took out the kids
For a game of football.
Went picnicking, camping,
Swam in the stream.
But then they awoke,
It was only a dream.
Out came the Excedrin,
Out came the Aleve.
But wait! A whisper!
Hard to believe!
A calling,
Quiet at first,
Then louder and louder,
As if the sky burst!
A saint? An apostle?
Can't make a decision.
Some sort of salvation
Of undetermined religion.
"Come out all you Lymies,
If you don't you'll regret.
Tonight is a night
You'll never forget!"
Lights on, out they stumbled
With sleep in their eyes,
Unhooked their I.V.s
And looked to the skies.
"Look what I've brought,
You won't be dismayed,
You all have insurance!
Your bills are all paid!
"An extended vacation
For the O.P.M.C.!
And freedom to practice
For all L.L.M.D.s!
"So forget swollen knees,
Your future's secure.
We've killed Lyme disease,
I brought you the cure!
"And there's no more Erlichia,
So each little tick
Will still be disgusting
But it won't make you sick."
Next morning was painless
Out in the sun
They did all the things
They missed, that were fun.
Now they still talk on the 'net
But their love is enough
And instead of disease
They just talk about stuff.
Merry Christmas!
Afternoon Update - 12:30 PM EST (Sleep Study)
Hi Everyone,
Okay, so here's the sleep study update. First of all, I don't know who came up with the name "Sleep" Study but it doesn't fit at all. "Sleep" is completely inaccurate. I don't know WHO could possibly get any actual sleep being hooked up to all the stuff they put on you. It should be called "Try-to-get-some-sleep" Study. Anyway, so I got there at 9:30, my assigned time, get up to the sleep lab and proceed to wait a while in my assigned room until my attendant comes in to start talking to me. One of the first things she tells me is that the wake-up time is 5:30am. Whoa! So I stop her right there and explain to her about me needing to be up until about midnight doing my antibiotic and obviously no one told her about this even though I warned them when I made the appointment. But...whatever. So she told me she'd get me hooked up to all the stuff, then I could hook up to my antibiotic, and when I was done she'd finish hooking me up and I could get some sleep.
Around 10:00 she hadn't come in to start hooking me up yet so I went to start getting my antibiotic hooked up so I could get to sleep on time but she popped her head in saying she'd be in in a minute and when I asked if I should hook up my antibiotic she said no, she'd be in in a minute to hook up all the other stuff and then I could hook up. I should have asked how long it would take to hook up all the other stuff but I didn't - stupid me. Around 10:15 she started hooking me up and it took about a half hour to get me hooked up to all the electrodes and everything (not a pretty sight, but I do have a picture at the end of this update - don't scroll to the end, finish reading, pretty please!) and then I finally hook up to my antibiotic. Thankfully there was a TV in the room so I wasn't bored out of my mind (even though I brought stuff thinking I'd need to entertain myself. It seemed they didn't believe me when I said it takes about an hour and a half to two hours to run my antibiotic because they kept checking in to see if I was done - after 30 minutes, after an hour, and finally I was done a little after midnight. So they finished hooking me up and I think they got everything set up and I got to try to start sleeping close to 1:00am.
Yes, I got a little bit of sleep - I'd estimate a total of maybe 2 hours the whole night and that might be a generous estimate. They did let me sleep 'til 6:15 which was nice. Then they got me up (pretty harshly, I might add), unhooked me from everything, and had me on my merry way. My dad picked me up and I came home, hooked up my antibiotic, and went to sleep 'til 11:00am (waking up to switch antibiotic bags and then unhook and de-access). I'm still totally exhausted and today is going to be a very groggy Christmas Eve but it'll be okay. I'm a bit worried about my solo at church (Ave Maria - the Bach version - you can hear Sarah Brightman sing it here) but it'll be okay. I just took a nice bath and got all the gunk out of my hair and now I need to get my dinner roll dough mixed up to rise (for dinner tomorrow), practice Ave Maria a few times, and straighten my hair before heading over to church. Still haven't wrapped any of my presents but at least they have all come (the last two packages came this morning - thank goodness!) so I'll be wrapping tonight after the service. I plan on crashing on the couch in the living room this evening instead of in my room so I can be with the family a little more. And I'll probably bring my computer out there so I can do stuff online, too.
Well, that's it. Here are those (embarassing) pictures I promised. This isn't me hooked up to everything, just the stuff they hooked me up to before my antibiotic (and before my mom left):
As you can see in that last picture, my teddy bear (AB - short for "Annie's Bear") came with me as well as my older IV pole, Piglet. It's a very weird feeling to be bringing an IV pole into a hospital. And in the first picture you can see my finished blanket that I knitted this fall - it kept me warm all night!
Okay, I'll stop there. I may or may not do an update tonight but I'll definitely do one tomorrow with lots of pictures from the day. I hope you all have a wonderful Christmas Eve if you celebrate Christmas. And if you don't celebrate Christmas, I hope you have a wonderful Saturday night! Please continue to keep all the Caringbridge families in your thoughts as the holidays can be a difficult time, especially for those who have lost a loved one.
I'm doing an early update tonight because I have to leave in about 45 minutes to head over to the hospital for my sleep study. That'll be a fun night. I'm interested to see how much sleep I can get with all the wires and everything stuck all over me! My mom is bringing me over and settling me in and I want her to take a picture of me when I'm all hooked up so I can show you all how silly I look (although I'm not sure how silly I'll actually look). Today was okay. Slept a lot this morning in between switching IV bags, worked from 1-5, and then came home and finished up a batch of snickerdoodle cookies (the dough had been "maturing" in the fridge for a few days waiting to be baked). Now I'm all packed up for my night at the sleep lab and ready to just get the night over with.
I want to share a wonderful thing that happened to me at work today. Today was the last pick-up day for the artists who had things in the holiday shop. There were a lot of great things in the shop this year and the artists were all really nice. A few of them were popping in and out a lot throughout the month that the shop has been open checking in on things, seeing if they need to re-stock their stuff, etc. Anyway, one of the last people to come pick up her stuff today is a jeweler who makes beautiful earrings, bracelets, and necklaces with stones (the pretty kind, not the kind you'd find outside). So we were talking a little bit while she was putting her stuff together and then she asked if I wear earrings and I said yes and she told me she wanted me to come pick out a pair of earrings as a Christmas present since I work so hard there. I was so surprised and touched. This is a woman I really don't know but I've been there a lot over the past few weeks so I've seen her a lot as she's come in to check on things and I guess I left an impression as being a hard-worker. So I went and picked out a pair of earrings with light blue and light green stones - really pretty - and I'm just so touched by the whole thing. It has reminded me of what the season is all about - caring and being kind to others without expecting anything in return.
Okay, I better double check to make sure I have everything for tonight. I hate going away - I always worry I'm going to forget something, especially with all my medical stuff. Please keep Ben's family in your thoughts as well as all the other families going into the holidays without their loved ones. And if you get a chance, go over and give Tara some happy wishes - she just got a port put in yesterday and is hoping to get home from the hospital by Christmas.
Today would definitely have been a day to stay in bed, sleeping as much as possible and generally just doing as little as possible but work got in the way of that. As it was, I stayed in bed until about 2:00pm resting (not sleeping). I'm just so completely worn out and exhausted and it just seems to be building up more and more. I just keep telling myself that once I get through this week of work, and then the holiday weekend, that I can have more time to rest and it's true. It doesn't help that last night I didn't end up getting to sleep until about 1:30am but that's my own fault (I was up doing stuff online) so I shouldn't complain. I was supposed to go to work from 2-6 but my boss called around 1 and told me she had a lot to get done so she didn't need me until 3 (I know that sounds backwards, you'd think with more to get done she'd need me earlier, but usually where I work there's no sense having two people there and we each have our own things that we take care of while we're there) so I got to stay in bed longer. Work was slow and boring as it's been all week but just one more day left and then I get some time off! Yay! After work I came home and made some cookies because I knew if I didn't make them tonight they wouldn't get made before Christmas but I messed them up (forgot to put the walnuts in them) so I need to make another batch at some point. That's my day.
Now, for something not related to my day! Yesterday I shared my favorite Christmas memory/tradition. Today I'll share my all-time favorite Christmas present. It was the year I was 7 or 8 and that year my older sister, younger brother, and I each got a pretty big present. My older sister got a keyboard, my brother got a little trampoline, and I got an amazing dollhouse. All these presents were gifts from Santa and my dollhouse was obviously put together with a lot of love. It was complete with a doll family and furniture and everything. It was just a great present and it stands out in my mind. If you had a favorite present that you gave or were given that you'd like to share, sign my guestbook!
Please keep all the Caringbridge kids (and adults) in your thoughts this holiday season, especially Ben's family and all the other families celebrating the holidays without a loved one. Also please keep my friend Tara in your thoughts - she's in the hospital, is having (or probably has already had) a port put in today so she can go home on IV nutrition, and is really hoping to get home for Christmas. I'm sure she'd love some extra happy messages in her guestbook!
For starters, thank you to everyone who has been signing my guestbook lately with wonderful holiday messages or just a quick hello. I love checking it everyday and seeing the new messages in there. It's a great pick-me-up! (Oh, and for those wondering about song I've chosen to sing on Christmas Eve at church, I decided on "Ave Maria" - the Bach version, though, so probably not the one most of you are thinking of. You can hear a version that Sarah Brightman sings here.)
On to my day! Today was like a less busy repeat of yesterday. My usual routine this morning with my Primaxin infusions and sleeping. Then I got up and drew my labs and got that all put together and went back to bed for a little while, checked e-mail, all that stuff, before finally getting up and dressed and out to the post office before going to work from 1-5. Work was very slow today and I spent a lot of time just milling around online and handling the few customers who did come in. After work I made a quick trip to CVS for a few things and then came home and I've been resting since then. I'm about to swap my saline backpack for my Primaxin pole and then snuggle under the covers and maybe pop in a Christmas video and wait 'til I can go to sleep. And I'm thinking about maybe making a PB&J sandwich but I'm not sure if my tummy agrees with my head on that one.
I'm realizing lately that my updates have been very much limited to recounts of my daily activities and not really about anything else that's going on with me or things that I've been thinking about. So, in light of the holidays coming up I decided to start adding something to each update where I share some of my favorite holiday memories and traditions. And if you have some you'd like to share in return, please feel free to leave me a message in my guestbook or write me an e-mail (my e-mail address is at the bottom of the page)!
What I'd like to share today is probably my favorite overall Christmas tradition, especially when my older sister and I shared a room and we were all quite a bit younger and it has somewhat fallen away as us kids have gotten older. Early early in the morning on Christmas, my brother Patrick who is three years younger than I am would come up to my and my older sister, Sarah Kate's, room and wait for us to wake up. When we were awake, we'd have to wait until 6:00am when we were allowed to come downstairs and open our stockings. My favorite time was us sneaking down the stairs and seeing our stockings and all the presents that had "magically" appeared overnight. And the each of us getting our stocking and sitting in our own specific spot on one of the couches and opening our stockings. It's not a big memory or tradition, but it's one that stands out in my mind when I think of Christmas and it remains as one of my favorite childhood memories and one of my best memories of times spent with my brother and sisters. My younger sister, Margaret, wasn't quite as involved with the stocking opening when we were younger but there were some years there before Sarah Kate moved away that Margaret was more involved so it was all four of us sitting around going through our stockings and just being there on Christmas morning. Warm fuzzy memories.
My pump is beeping at me so I better end this now. Thanks for checking in on me and I hope you've had a good week so far. Please continue to keep Ben's family in your thoughts as well as all the other families entering the holidays without their loved ones.
Today was a long day and I'm very worn out so this will be short(ish). After my morning Primaxin infusion I quickly de-accessed, got in a quick shower, and ran out the door to go to an appointment with the nurse practitioner at my PCP's office. The visit went fine but it was very obvious that she is confused about what kind of IV line I have - she thinks I have a PICC line and was very confused about my de-accessed port and I didn't really realize her confusion until later so I e-mailed her and explained what a port is and all that (you'd expect her to know what a port is, right?). After the appointment I raced back home, re-accessed Winnie (my port), threw my stuff together, and went to work from 1-5 (pretty boring but I did get a little school work done and spent a lot of time doing stuff online so it wasn't too bad). Then came home for a little while and went to choir rehearsal. Apparently my fatigue is showing through because people at choir were telling me I was looking tired which they rarely say (even if they think it). But choir was nice - I always have a good time there when I'm feeling up to staying the whole time. And we don't have rehearsal next week which will be good and give me more time to rest and recover from the holiday weekend and these past few weeks.
That's it for me for tonight. Please keep Ben's family in your thoughts as well as all the other families entering the holidays without their loved ones for the first (or second, or third) time. I hope you have all had a good week thus far and continue to have one going into the holiday weekend.
Monday, December 19, 2005 8:43 PM EST
I was getting ready to come do an update but wanted to check on a few CB kids first and was stopped in my tracks when I found out that Ben passed away on Friday night. He went through so much since he was diagnosed nearly three years ago. And he and I shared the same unique birthday - July 4th - so I felt a special connection to him. I'm heartbroken to find this out but find comfort in the fact that he's now at peace and cancer-free. Please take a minute to go over and offer his family some support during this difficult time.
After that news, I'm just going to do a very quick update about my day because most of the stuff I was going to write about just doesn't seem important. Today was a good day overall and the best part was that I got to go ice skating with my sister, Margaret. I used to figure skate (I started when I was 15 and did it through high school and for the first few years of college) - taking lessons and doing low-level competitions - and I loved it but I haven't been in quite a while so it was just so nice to be back on the ice. I can still spin, I can still jump, and it's still so much fun so I'll definitely be getting out to public skating more often this winter. After that, we went to run a few errands and I spent the rest of the day baking cookies. I got my Zofran prescription in the mail today which is a huge weight off my shoulders. I basically stopped taking it because I was almost out, I saved a few for emergencies, and I was waiting to get my 3-month supply from my mail-in prescription service which took longer than expected. I have no idea how I managed without taking ANY for so long but someone must have been looking out for me.
Please keep all the CB kids (and adults) in your thoughts this holiday season, especially Ben's family, Tara who is in the hospital trying to figure out her stomach problems, Diana who is home but having her own GI problems, and all the families spending the first holiday season without their loved ones.
Shortish update about today and then a bunch of pictures from the past week or so. Today was okay overall but I overdid it (as usual). Usual morning routine but I didn't go back to sleep after switching my Primaxin bags and instead I checked my e-mail and then got up and got dressed as it finished so I'd be on time for church. Church was good and our old student intern was there which was really nice - he's really nice and I didn't realize how much I liked him until he was gone so it was just a nice treat to see him! And the childrens' choir sang which is always cute (not always on key, but cute). Then I came home, vegged out for a while (while getting some of my IV fluids in and watching some TV) and then went out grocery shopping with my dad. We got pretty much all our Christmas dinner stuff and I'm looking forward to it. And tonight we're trimming the tree (I'll post pictures later tonight) which will be fun - lots of egg nog and cookies on hand, although I'm not sure how much I'll partake.
Okay, so that's today, here's the pictures:
Winter Wonderland (our first substantial snowfall of the year - about a week ago)
Gingerbread Village made by the kids at the Seaside School in Marion, MA (on display last weekend at the Marion Art Center where I work)
The beach yesterday afternoon
Tree Trimming Pictures
As promised, here are the pictures from decorating the tree tonight! It was fun but I'm worn out!
Patrick putting up the lights
Margaret going through the ornaments
Me and Roly Poly (my IV pole) in front of the tree
A weird picture my brother took of me (he was taking it really close and I look so weird because I didn't want to be blinded by the flash)
And the finished tree
(missing the star on top - we need to buy one and couldn't find one tonight so we'll get that tomorrow)
Saturday, December 17, 2005 11:59 PM EST Hi Everyone, Friday, December 16, 2005 10:23 PM EST Okay, last update for today, I promise (if you didn't see this afternoon's update, it's below this one). This will be a quickie. Today was okay, but I'm getting more and more worn out each day even though I'm doing less and less. I'm sleeping through my infusions in the morning all the time now whereas I used to wake up for good around 9am (when I'd switch bags of Primaxin) and check e-mail or whatever in bed until I was done. And now I'm even going back to sleep after the Primaxin is done which I haven't been doing before. Hopefully it's the cold getting to me, but I have a feeling it's also the last month catching up with me so I'll just try to take it easy. The good thing is that basically for the month of January I won't be working (well, it's good and bad - good because I'll get more time to rest, bad because I obviously won't be getting the income) because the gallery will be closed for some work on the ceiling and lighting. This morning I also had a bad migraine and nausea but the meds for those kicked in after a while and I was able to get on with my day. Thursday, December 15, 2005 10:06 PM EST Hi Everyone,
Wednesday, December 14, 2005 11:31 PM EST Hi Everyone, Wednesday, December 14, 2005 12:17 AM EST Hi Everyone, Monday, December 12, 2005 10:27 PM EST Hi Everyone,
Sunday, December 11, 2005 9:44 PM EST Hi Everyone, Saturday, December 10, 2005 11:11 PM EST Hi Everyone,
Friday, December 9, 2005 3:06 PM EST Hi Everyone, Wednesday, December 7, 2005 11:24 PM EST Hi Everyone, Tuesday, December 6, 2005 11:10 PM EST Hi Everyone,
Sunday, December 4, 2005 11:30 PM EST Hi Everyone,
Sunday, December 4, 2005 7:29 AM EST IT'S SNOWING!!! Yep, that's right, I woke up a little while ago to do my Primaxin infusion early (so I can make it to church on time) and I saw all the flakes coming down. It's pretty and it's actually staying on the ground a little bit! Yay! I love snow, especially early in the winter. By February and March I get a little sick of it like most other New Englanders, but I love it around the holidays especially! Just wanted to say that! I'll post a real update tonight.
Really quick update tonight since I'm all done with my infusions and ready to tuck myself into bed and get some sleep! My morning was the usual for me lately - hook up, sleep, wake up to change Primaxin bags, sleep, wake up to unhook, sleep, e-mail, etc. I did get up and out of the house in time to get to the post office before it closed at noon and run a few other errands (and stop for a bagel at Dunkin' Donuts which I actually managed to finish) before heading to work from 1-5. Quiet day at work - I was online for pretty much the whole time (I love that we have DSL at work now) and did some knitting. This evening I did some baking and fought with the oven to make some acceptable gingerbread cookies but I'm not sure who won. Now I'm ready for bed so I'm going to hit the hay. I hope you're all having a good weekend. And thanks so much to everyone who has signed my guestbook with holiday (and other) wishes!
As you can hear (I hope) I changed the music on here 'cause I was getting tired of the old song (even though I really like it). The new song is from "The Muppet Christmas Carol". If you'd like to read the lyrics, scroll up towards the top of the page.
That's all for me for tonight. I need to lie down while I finish my Primaxin and then get to sleep. I hope everyone had a good week and has a good weekend with as little holiday stress as possible!
UPDATE - Friday 3:44 PM EST
Hi Everyone,
I'm at work right now and quite bored (and not feeling much like reading the book I brought with me) and since I remembered a few things I forgot to mention in yesterday's update I thought I'd put in a little mini-update now. First of all, some good (and interesting and a bit baffling) news for a change: in my labwork this week my alkaline phosphatase was 50! This is the thing I've been struggling to get back into the normal range since...August? It used to be up in the 50's and 60's and then after starting the Clinda in July it dropped down into the 30's and never recovered. Well, last week it came back up into the normal range for the first time since July or the beginning of August but it was still just in the normal range and this week it's 50! It's amazing and I'm just so happy it's coming up and staying up! (ALP levels are part of the routine liver panel and have to do with the body's metabolism which has to do with energy so if the ALP level is rising hopefully that means my metabolism is returning to somewhat normal and my energy will be improving more!)
And last night I finished up my Christmas shopping for my family (which I've pretty much done online) and now I just have a few little things left to get. Yay! My favorite part, though, is when I have all the presents there in front of me and I have to wrap them all and make them all look nice. The only thing I'm a little worried about is my dad's present which may not arrive in time for Christmas but I just couldn't justify spending more on shipping than on the present itself so I'll just keep my fingers crossed and hope it comes fast!
Okay, that's it. I'll add a bit more tonight but won't promise anything. Oops, gotta change my Primaxin bag (yep, I'm infusing at work right now). Hope you're all having a good day!
Well, the last few weeks are officially catching up with me and I'm crashing. But even with the crashing I continue to push myself to get things done for the holidays and such (my stubborn streak coming out full force here). This morning I basically slept through both my Primaxin infusions and after they were done I went back to sleep for a while before getting up and taking a bath (it was nice and relaxing but I couldn't stay in long enough 'cause I had things to do today). After my bath I was running around like crazy trying to get things together. I packed up the tin of cookies for my sister and brother-in-law (took a little while to find a box that the tin would fit well in), got myself accessed and hooked up to my backpack of fluids to take on the road with me (which was really good I did or else I would have crashed much sooner while I was out), and had to deal with the IV tubing issues (I'll get to that in a second). Then I did make it out to run my errands - made it to the post office, Wal-Mart, and one place to look for things for my (younger) sister for Christmas before I had to come home and just go to bed. I did stop at Taco Bell and ate a little something while infusing my afternoon Primaxin but my stomach hasn't appreciated it since then so I think that wasn't such a good idea.
Now, for the IV tubing stuff. Basically my infusion company figured out a few weeks ago that they had been sending me the wrong kind of tubing (un-filtered vs. filtered) so they switched me to filtered. Since then I haven't been able to get more than two or at most three infusions out of each set of tubing because it starts running extremely slowly. So here's the quick version of my phone conversations with my infusion company. Phone call #1 to my supply coordinator about my shipment on Monday and about the tubing issue - she transferred me to the head nurse who asked questions about it (she thought at first it was a problem with my port but I explained that it's DEFINITELY the tubing since it runs just as slow when it's not hooked up to anything) and said I'd probably need a pump (not the kind I have for my hydration, it would have to be the kind that screws onto an IV pole and is huge and bulky and a big pain). So she said they'd send the pump out today and have a nurse come to show me how to use it. Phone call #2 to my supply coordinator because she transferred me to the nurse before I was able to let her know about supplies I need for my next shipment which includes a new sharps container and I've also had some of my Primaxin bags get mixed before they're supposed to so I got transferred to the pharmacist who will take care of all that. So I was coming to terms with needing to use a pump but to make this short they decided that since I'd need some regular tubing for the days I work (so I wouldn't need to drag the pump with me to work) and it would be complicated they're just going to start sending me out a new set of tubing for each infusion which means 21 sets per week! That's up from 3 sets before! Crazy! But if that'll work I'll take it!
Okay, I've written quite enough and I'm tired and hooked up to my Primaxin and just generally not feeling great so I think I'm going to try to eat some Chex Mix or something and rest until the infusions are done and then get some sleep. I hope you all had a good day today and continue to have a good week! Continue to keep all the Caringbridge kids and adults in your thoughts during the holidays and hope they all are able to enjoy themselves.
One word can sum up my day: COOKIES! Yes, it was a day full of cookie baking but not a whole lot of cookie eating because my stomach wasn't liking me very much. So, anyway, things this morning went okay - woke up, hooked up to my Primaxin, went back to sleep, woke up to change bags (and gripe at the stupid tubing not cooperating, I really need to talk to my supply coordinator about that tomorrow), went back to sleep for a little while, unhooked, drew labs, hooked up to saline, did some online stuff, and then got up to begin my day of cookie baking. I was feeling so-so when I got up but after being upright for about 15 minutes it was obvious that something wasn't right so I had to pull up a chair and put my head on the counter and turn my saline up to full speed for a little while. I also drank some OJ (it could have been drawing the labs that made me feel sick?) and eventually I started feeling a little better but paced myself.
I started by making sugar cookies, then took a break and lay down for a while. Then I made my famous inside-out cookies (chocolate cookies with white chocolate chips) and then took another rest and watched some TV. And then I went in for round three and made regular chocolate chip cookies. They all turned out really good if I do say so myself, but the chocolate chip cookies were especially good. So now I've packed up a tin of cookies to send off to my sister tomorrow (just need to find a box to pack it up in). Tomorrow my agenda includes de-accessing, taking a bath, re-accessing, and errands (including post office to ship off cookies, BJ's wholesale club to get Propel and a few other things, Wal-Mart to pick up my soda, hopefully the mall to do a little Christmas shopping, and maybe to Taco Bell to pick up some food if my tummy agrees). Hopefully I'll make myself get some more rest than I've been getting but somehow I doubt it. It seems like lately there's never a good time to take a nap because I'm usually right near needing to take some medicine or hook up to something. I wonder how long I'll last with the amount of sleep I've been getting. Maybe one of these days I should skip my morning Primaxin dose and just sleep in as late as I want (or at least sleep in as late as I want and then hook up when I wake up and work around that timing).
Okay, that's all for me tonight. I'm ready to call it a night. Thanks to those who have signed my guestbook and to everyone who has stopped by to see me. It's nice to know you're all out there checking in on me! Please continue to keep all the Caringbridge kids (and adults) in your thoughts through the holidays and hope that their holidays are very happy!
Late update for me tonight but I got sidetracked doing various other things online. Today was an okay day overall but I've been feeling really cruddy this evening. This morning was a tug-of-war between sleep and medicine and unfortunately it seems that sleep always loses. I did stay in bed for the rest of the morning, though, before packing up my afternoon stuff and heading off to work. Work was okay - mostly trying to catch up on things from the busy weekend this past weekend. After work I came home and instead of going to bed like I should have done I decided to make Tiny Tim cookies (essentially little fruitcake cookies, but the tasty kind) and then I made snickerdoodles (I had already made the dough over the weekend and just needed to bake them). All that baking after working this afternoon was just too much for me and I was feeling very dizzy and exhausted and short of breath and lots of other bad things so I tucked myself into bed for the rest of the evening and that's where I am now!
It's way past my bedtime so I'm going to get some sleep. Tomorrow will be a day of baking cookies to ship off to my sister and resting (I hope). Low-key is good! Goodnight!
Well, today was a low-key day for me. I stayed in my PJs all day, stayed in bed for most of the day, but did manage to get almost all my Christmas cards done. My cold is still in pretty high gear, although I haven't been blowing my nose quite as much as I was yesterday. I'm keeping my fingers crossed that this won't be one of my 3-month-long colds! *knock on wood* And this afternoon I called the sleep center to ask about whether or not me having a cold would mess up the study and they said I should reschedule. So, I rescheduled for next Friday the 23rd - the night before Christmas Eve. But I want to get it over and done with especially since my insurance deductible resets at the first of the year and I want to get it in before that. The up side to rescheduling it is that I now officially have no doctor's appointments this week! Woo hoo! It's been a while since that's happened (or at least it seems like a while). Next week I have an appointment at my PCPs on Monday and then the sleep study on Friday but that's not too bad.
On a positive note, I've been meaning to mention this for a while but didn't want to say anything too soon - my nausea has gotten a lot better in the last few weeks. I don't know if it's 'cause I'm getting used to the Primaxin or because the nausea is mainly a Lyme symptom for me and the Primaxin has been working on it or what but I'm not complaining! I'm still not eating "normally" but I'm definitely eating a little better than I was. I'm sticking with easy stuff - oatmeal, rice, pretzels, etc. - but I do manage some "real" food when I feel up to it. And right now I'm even taking half my usual Zofran dose (trying to stretch my remaining Zofran until my next three month's worth comes in the mail) and it's been okay so I'm pretty happy about that! If you have some wood nearby, could you knock on it really hard for me just to help make sure the nausea doesn't rear it's head again - at least not before Christmas dinner?
Okay, that's it for tonight. I need to try to give my sister a call to try to figure out if it'll work for my brother and I go to visit her and my brother-in-law in January or not and then I'll curl up in bed and wait for my Primaxin infusion to be done so I can get some shut-eye! I hope you all had a good Monday. If you could take a minute to go pay my friend Diana a visit, she'd probably like some extra visitors (she's in the hospital because of her stupid pancreas). Feel better, Diana! And please keep all the Caringbridge kids (and adults) in your thoughts this holiday season.
Quick update tonight. My cold is in full swing and I'm not feeling well but not resting as much as I should be (I plan to try to rectify that tomorrow) - I'm all stuffy, sneezing quite a bit (kind of normal for me but this is more than usual), coughing, fuzzy/stuffy head feeling, and just exhausted. I managed a short nap this afternoon while infusing my Primaxin but it wasn't nearly long enough. This morning I managed to take a shower/bath thing while infusing my Primaxin so I was pretty clean for church which was nice, although it tired me out. Then I made it to church early for choir rehearsal and stuck around after the service for a while and chatted with people for a while which was nice. Then I came home and I've been in bed ever since. No cookie-making, no Christmas card writing, just been in bed watching TV and movies and napping on and off (and being hooked up to my various IVs all day).
So, that's been my day. Tomorrow I don't have anything I have to do so I'm planning on staying in bed all day and hopefully working on my Christmas cards. I've been having some computer problems so I better post this before it gets lost (*knock on wood*). Thanks for stopping by to see me and I hope you've all had a great weekend!
I just got back from an evening of hearing some of the local folk artists that we used to hear all the time at the cafe that my family was very involved in. It was a fun night, but I'm thinking I should have opted out of it and stayed in bed because I'm just not doing well now. This cold is taking a lot out of me. And I'm going to be up very late infusing my Primaxin since I started it about an hour late (didn't get home 'til about 11 and it takes about 2 hours to infuse).
Anyway, today overall was okay but I can slowly feel the dark circles under my eyes growing darker and larger - probably a sign for me to stay in bed much more and stay "no" more often. It amazes me how often people are unable (or unwilling) to see how tired my eyes look. I can feel completely awful, like I'm just going to topple over, and people are telling me left and right that I look great! It gets frustrating and sometimes you just wish you could show on the outside just an ounce of what you're feeling on the inside. But then I might scare people away!
So back to my day. I faded in and out this morning while doing my infusion but then made it up and got dressed in time to make it out to the post office and bank before they closed (whoever decided things should close at noon on Saturdays was just being unrealistic) and then to Wal-Mart to try to pick up a few things (somewhat successful) before heading over to work. Work was busy because it was the Marion House Tour, an annual thing where certain people's houses are selected and they spend weeks making them look all nice to have people traipsing in and out all day long looking at how nice things look. After work I came home to crash for a little bit before going out to the folk show and now I'm home and about to take a nap while the first bag of Primaxin infuses. Tomorrow I have to be up early to be at church at 9:30 for choir rehearsal before the service. And I kind of want to take a shower before I go since I haven't taken one in...well, let's just say it's been a while (it constantly amazes me how few showers a week I can get away with!) but that would require me to get less than 6 hours of sleep tonight or shower/bathe while infusing so I'm not sure if that will happen. We'll see...And as I said before, this cold is really getting to me - I'm blowing my nose all the time, my head is completely stuffed up, my sinuses are hurting off and on, I'm having bad headaches and this sudden sharp headache pain, but the worst part is the extra exhaustion on top of my normal fatigue. It's the kind of exhaustion that makes it difficult to open your eyes and move much at all, but you do it because you have to, it just takes 50 times more effort and wears you out just that much faster.
Thanks for stopping by. I'm seriously about to fall asleep here at the computer (haha, I'll pull a "Diana"!) so I'll say goodnight. I hope you all have a good night and a good second half of your weekend!
So I obviously didn't manage to get an update up last night after I got home - I was really wiped out and just needed to crash, barely staying awake through my Primaxin infusions. First the news on my appointment with Dr. Bock. It went well, at least partially thanks to my dad being there to give a more objective view on how I've been doing over the past month. I couldn't really tell Dr. Bock that I was feeling a lot better because I honestly don't feel a big difference but it's so hard for me to tell from day to day or month to month - the short-term changes are just too small for me to be able to feel. So, since I couldn't say I was feeling a lot better, Dr. Bock was going to let me finish the 6th week of Primaxin and then take me off it and if I got worse he'd push for another 6-week course. He acknowledged that he knew I didn't want him to take me off the antibiotics because I want to get better and that obviously his objective is the same as mine (to get me feeling better) but he can't support keeping me on something that isn't noticibly making a difference.
Then he asked my dad if he had seen a difference and my dad was able to say that he had in fact seen a difference starting with our trip to Baltimore last month. Apparently my dad thought I was going to spend the whole time in the hotel room feeling awful but he was pleasantly surprised to see that I went out walking around everyday and really was able to enjoy the trip. And since then he's seen more of the same. When I think about it I can see this as different from a typical period of pushing myself to do things I want to do because when I push myself, usually I reach a brick wall eventually and just can't go on anymore but this time, even though I've been really exhausted and obviously feeling worn out from doing so much, it's not quite the same. So, with that information, Dr. Bock said he took back what he said and he wants me to continue with the Primaxin.
He also supports me having a sleep study done because the more info he can get, the better (I'm quite the mystery). And in the car on the way home I got a call from my PCP's office that the sleep study is scheduled for Tuesday night so that'll be tons of fun (note the sarcasm there). Dr. Bock also says the Topamax that the neuro wants me on is fine so I started that last night and he said he'd be fine with the physiatrist giving me the dysautonomia med he talked to me about on Tuesday (Mestinon) but Dr. Bock isn't comfortable giving it to me since he doesn't know much about it and hasn't used it before. Other than that, no med changes or anything and I go back in three weeks.
Then on the way home my dad and I got to stop in to see my aunt and uncle which was great! It's so nice to see them, even if it was just for dinner. Their Christmas decorations are great (they have a HUGE tree (fake) with tons of ornaments and my uncle spends a long time putting up these little tinsel icicles one at a time and it just looks really nice. And this year they didn't even do everything they usually do but their house is still so cozy. We had a nice dinner and chatted for a little while and then headed home (I slept a lot of the ride home). It was a long day but pretty good overall. Today I was supposed to work but I'm exhausted, it's quite the blustery and awful day outside, and I officially have a bad cold so I called my boss and she told me to stay home. I'm glad I did because I'm just not feeling good - colds have a way of doing that. And when I get a cold it takes me forever to fight it off completely so I'll probably still be dealing with it well into the New Year and beyond. I'm just really hoping it doesn't turn into something worse than a cold, but it doesn't usually so I'll just do what I can to prevent it. So, I'm going to do just that and heat up some chicken soup (or maybe I should wait 'til after I finish my Primaxin infusion) and just snuggle up in bed for the rest of the afternoon. And I have thoughts of making some cookies later but we'll see if I'm up to it.
Thanks for stopping by to see me and I hope you've all had a good week!
Well, today was a very busy (and long) day but it was a good long. I'm continuing to struggle with my med schedule but at least it's not so much because of the nausea but more because of the lack of sleep. But I'm trying my best to adjust and get the extra sleep where I can. So, my day began with my usual 7am Zofran, then 8am hook-up to Primaxin, and then I went back to sleep while the first bag (the bigger, 500mg, bag) infused (gotta get that extra sleep where I can). After the infusions I took some time to straighten my hair before heading off to work from 1-5 (had to clean my car off first - haven't been out in my car since it snowed a few days ago). Work was okay but my afternoon Primaxin infusion was causing me problems because the tubing was kinking and I couldn't get it to unkink so I didn't get the whole infusion in but as much as I could before I had to leave (it seriously would have taken me hours and hours to finish the smaller 250mg bag).
After work I headed over to meet my friend, Megan, at the mall. We grabbed some dinner at the food court, talked for quite a while, and then headed over to the movie theater to see "Rent". It was really good but overall I like the play better than the movie. There were some parts that were better in the movie than in the play (or at least that I liked the way they were done) because they could do flashbacks and forwards that are obviously not possible in live theater, but there were parts during some songs when it just didn't go as smoothly as I'd have liked. But overall, a good movie and I'm really glad I got to see it. And it was so nice to get to hang out with Megan. We were roommates when I lived in Boston (well, technically Jamaica Plain) the year before last and we've known each other since 6th grade and were good friends through high school. We both live with our parents now in the same town and we hadn't seen each other in close to a year which is just crazy. Anyway, it was just great to get to hang out with an old friend and was really worth getting home late and being worn out.
On the health front, I think I'm getting a cold but I'm not completely sure yet. I hope it won't turn into a full blown cold because it takes me months to get rid of them. I'll just try to get rest and do what I can to keep it away. Other than that, nothing exciting or new to report on. Tomorrow is going to be another long day - going to New York for an appointment with Dr. Bock and then my dad and I are stopping in to see my aunt and uncle in Connecticut for dinner. I'm looking forward to seeing them since we don't see each other that often but it will be a long day and I just hope I can get some sleep in the car. I plan to bring a pillow and my wonderful blanket that I knit (did I ever mention that I finished it?) and just try to relax and rest. I'll report back about the Dr. Bock visit either tomorrow night or Friday morning, depending on when I get home tomorrow and how tired I am.
With that I'm going to get in my PJs and curl up in bed until my Primaxin is done infusing (almost done with the 500mg bag) and the hook up to my saline and get some shut-eye. Thanks for stopping by! I hope you're all staying warm (at least those of you in the northeast - it's frigid here!) and that you have a good day tomorrow.
Really quick update tonight. I haven't had a great day today. The toll the Primaxin schedule is taking on me is becoming more apparent as time goes on and it's been rough to handle, mostly 'cause I'm not getting enough sleep and am just so exhausted all the time. And I've had a headache all afternoon that has gotten worse and worse until I finally took my migraine med for it (hopefully it will kick in soon so I can sleep) and I've been pretty nauseous all day. Plus a bad soret throat (probably thrush rearing it's ugly head so I'll try to take care of that with another med tonight). I had an appointment with the physiatrist today and to sum it up it was okay and I'm putting physical therapy off until at least mid-January when I go back to see him again.
I hope you all had a better day today than I did and that you have a peaceful ngiht!
Monday, December 5, 2005 8:10 PM EST
Hi Everyone,
Okay, so I promised to fill you in on my appointment with Dr. Hood's (my PCP) nurse practitioner on Friday. I'll just give a brief overview so this doesn't turn into a really long update. First of all, the NP had a student NP with her that day and the student ended up running most of the visit, which wasn't a good situation to start with because the purpose of me seeing the NP instead of Dr. Hood was so I could meet and get to know her in case I have a crisis and Dr. Hood isn't around (I'm seeing the other doctor in the office next month). So, anyway, most of the visit was the student doing exams on me for the disability papers they got from social security (about my disability application). They did a brief neuro exam (I did fine on that...which isn't the best thing since it would help my application to have something show up), checked my reflexes, checked my eyesight, and did a hearing exam. Everything was fine except for the hearing exam which showed decreased hearing in both ears, but more so in my right ear. I'm not convinced it was me and not their little hearing testing thingy but who knows. They're supposedly going to send me to an audiologist. They also want me to have a sleep study done based on the recommendation of my physiatrist (who I see tomorrow morning) and I'm not sure I'm going to do that yet. If insurance covers it completely or with a small copay, I think I'll do it, but if we're going to have to pay some large amount out of pocket I'll pass on it. I'm also going to ask Dr. Bock about what he thinks about it when I see him on Thursday. So, that's the gist of the visit with the NP on Friday.
Now on to the visit with the neurologist this morning. It went well, I guess, although I'm not sure what to think of him. I don't really know where he stands on chronic Lyme disease which is always tricky, but he at least didn't suggest that I don't have it. But at the same time he didn't seem to acknowledge the fact that my migraines are from the Lyme disease. He basically said that he thinks most of my headaches are rebound headaches from taking headache meds. The only problem with this theory is that I don't fit the "rebound headache" criteria - I don't take medication before the pain starts to avoid it, I don't take medication everyday, and I tend to have one bad week a month (that goes along with the Lyme bacteria's cycle). So...I just don't think he's correct about that and I don't think I was being particularly coherent about what's really going on because he just didn't seem to understand the above reasons why I probably don't have rebound headaches. But, in any case, he's starting me on Topamax everyday to try to prevent some of my headaches which I'm hoping will help. Other than that, nothing much came out of the visit and I go back in a month for a "med check" with the NP in the office.
So, that's those appointments. Tomorrow morning I see the physiatrist (I was planning on cancelling the appointment but forgot so I'm going to go and try to get some kind of report or order to possibly get physical therapy somewhere else other than the program he referred me to since that didn't work for me) and then on Thursday I see Dr. Bock. Busy doctor week for me! Other than the neuro appointment I haven't done much today. By the time I got home I was really tired so I got into my PJs and got back in bed for the rest of the day. My mom and I stopped at taco bell on the way home (at my request) and brought some food home which I did manage to eat but I was stupid and ate it before my afternoon Primaxin dose - apparently I didn't learn from the cookie incident last night (although it wasn't as bad today). I'm just tired and generally feeling run down but tomorrow I don't have anything but the physiatrist appointment so I can do a repeat of today and spend the rest of the day resting.
I hope you all had an uneventful day today! We're supposed to get snow tonight which I'm happy about but the garage isn't cleared out enough to put my car in it yet so I'm a bit worried about my car - a snowstorm won't be the end of it but it definitely shortens the life it has left. I'll try to take some pics of the snow tomorrow (assuming we do actually get some). Thanks for stopping by to see me! Oh, and check out yesterday's update for some pictures of my Christmas decorations in my room and the little snow we got yesterday (that's still on the ground now!).
First, a few pictures I took today:
Yes, it snowed! And some of it is still on the ground today! I love snow (especially around the holidays).
My IV pole heavily laden with my saline bag (the big yellow bag - the B-vitamins make it that color), and two bags of Primaxin (one 500mg bag, one 250mg bag). You can also see a little of the Christmas decorations I have on Roly Poly (the pole).
The corner of my room with my comfy chair and Edgar Allen Pole (one of my IV poles) all decked out for Christmas!
And the little Christmas tree in my room
Okay, now for a shortish update. I'm feeling a bit queasy now in the middle of my Primaxin infusion (still on the 500mg bag, haven't even hooked up the 250mg bag yet) but that may be due partly to the fact that I decided to eat a sugar cookie before hooking up (note to self: don't eat before infusing!). Today was an okay day. I went to church this morning and my dad and I were greeters. Oh, and before that I woke up to see it snowing outside and immediately turned on some Christmas music and spent a while hooked up to my morning Primaxin and lying on my stomach looking out the window (the window is at the head of my bed). So, anyway, after church I came home and managed to do quite a bit of school work - finished reading the chapter I was working on and after a break to make sugar cookies (the aforementioned cookies that made me queasy when combined with the Primaxin) I took the quiz the teacher made available for me to take late and did okay on it (don't know my final score yet because there was a short essay question that couldn't be graded automatically). So it was a pretty full day and I'm tired but hanging in there. Tomorrow morning I have a neurologist appointment and then the rest of the day free to do whatever I want! Yay! I'm thinking PJs, a movie, and maybe some popcorn if my stomach is cooperating. And I should do some more school work. But I won't over schedule myself on my day of resting!
Enough rambling. I'm going to swap my bags of Primaxin and curl up in bed and watch a "Friends" DVD on my computer. Tomorrow I'll update about my doctor's appointment on Friday with the nurse practitioner at my PCP's office and also the neuro appointment I have tomorrow morning. And maybe I'll take some more pictures if the snow is still around! I hope you all had a great weekend and have a peaceful night tonight. And thanks for stopping by to see me!
Peace and healing,
Annie
Saturday, December 3, 2005 7:29 PM EST
Hi Everyone,
Well, yesterday was certainly a hectic and tiring day (which is why I didn't update). It started out with some school work, then a bunch of errands, then a doctor's appointment (the nurse pracitioner at my PCP's office) which didn't go all that well but I'm not going to go into it (just not the greatest first meeting because there was a student nurse practitioner doing most of the appointment - not the way to get to know the NP), then I rushed home to do my afternoon antibiotic infusion and then rushed off to the art center to print out the programs and do the first performance of "The Wizard of Oz". The show went well and it turns out me and the other teacher/director got paid about twice as much as we were expecting which is always nice! The kids did a really good job last night, really pulled it together, and the audience loved it. Today's matinee didn't go as well becuase the kids didn't have the same energy level (the downfall of a lot of second performances - the energy just isn't there the way it is for opening night) but they still did a good job and impressed everyone. Now it's over and I can concentrate on my online class and pick up some extra hours at the art center this month.
Here are some pictures from today's performance and backstage beforehand (I played around with a new program I just found on my computer to make it look like the pictures are in a photo album):
The kids on the stairs before the play started (the stairs were their assigned seats when they weren't not on stage)
They were having a good time before the show started!
More pre-show backstage pictures (this is Dorothy on the far left, then Uncle Henry in the middle, and the Scarecrow on the right)
In the Wicked Witch's castle after she's been melted (with the flying monkeys)
Oz's throneroom while the Queen of the Winged Monkeys tells her story
Dorothy doesn't know how she's going to get back home once the Wizard flies away without her
The whole cast (not a great picture but the best of the two I got)
So, tonight I just need to rest and do some school reading (which I've been procrastinating about so far). Health-wise I'm hanging in there and I've survived this hectic week which is an accomplishment in itself. The nausea hasn't been awful in the last few days (at least not as bad as it could be) and everything else is about the same. On Monday I see the neurologist I've been waiting to see for a while and on Thursday I see Dr. Bock. And I'm working on Wednesday, Friday, and Saturday and going out to see "Rent" with an old high school friend on Wednesday night. Whew! Busy week coming up but at least it's more fun stuff that doesn't bring as much stress with it as this week has!
I'll stop there and just say that I hope you're all having a good weekend so far! Thanks for stopping in to see me and thanks to those who have signed my guestbook recently. It helps a lot to know that you're out there and I have that extra support when I need it. Have a good evening!
Thursday, December 1, 2005 10:00 PM EST Hi Everyone, Thursday, December 1, 2005 12:24 PM EST Just wanted to come on quickly to say that I changed the music on here. I was getting a little tired of the song I had up before ("Bless Us All" from Muppet Christmas Carol) so now you're listening to "Grown Up Christmas List" sung by Amy Grant. For the lyrics, scroll up the screen towards the top, they're in a reddish color under the music controls.
W, November 29, 2005 10:55 PM EST Okay, so today did not end up being a good day. I made it out to run my errands and that was fine. Then I made it over to the art center around 2:30 (an hour and a half early) to finish up figuring out the lighting and sound stuff for "The Wizard of Oz" and had rehearsal from 4-6 for that. Well, the rehearsal did NOT go well. It started out with someone coming to hang up the side curtains (so the audience can't see backstage) just before 4 and not finishing until almost 4:30. So we were already behind and we didn't make it through the whole play. So we still haven't run through the whole thing in one rehearsal and we only have one more rehearsal left. I had a bit of a nervous breakdown about it tonight and I'm still quite stressed and distraught because some of the kids just aren't putting the time and effort into it and they're going to ruin it for the ones who ARE doing what they're supposed to do. The way the young people's theater program is set up right now at the art center just isn't working and I feel like I'm fighting an uphill battle trying to bring it back up to the standards that it was at when I was taking the classes (my teacher really was amazing). I have a proposal to make to my boss tomorrow about how to bring it back up to par and actually be able to teach the kids things instead of having the whole class be focused on the play.
Sunday, November 27, 2005 11:22 PM EST Hi Everyone, Saturday, November 26, 2005 11:32 PM EST Hi Everyone, Friday, November 25, 2005 11:35 PM EST Hi Everyone,
Wednesday, November 23, 2005 11:50 PM EST
Monday, November 21, 2005 10:35 PM EST Hi Everyone, Sunday, November 20, 2005 9:52 PM EST Hi Everyone, Friday, November 18, 2005 10:44 PM CST Hi Everyone,
Wednesday, November 16, 2005 5:38 PM CST Morning Update
Monday, November 14, 2005 7:05 PM EST Hi Everyone!
I'm just doing a quick update now because there's a strong chance I'll be too nauseous to update later on (the increase in the Primaxin dosage has hit me hard today). Today wasn't a great day health-wise. I woke up with a headache but thought it might go away on its own so I didn't take anything right away - mistake #1. The morning Primaxin infusion went okay and took almost 2 hours since I'm careful to run it slowly. The afternoon dose didn't go so well because a) I only took my normal 4mg dose of Zofran ahead of time and b) I had to run it faster than usual so I could make it out to rehearsal on time. Big mistake which resulted in me lying on my bed and trying not to move at all for 45 minutes or so and spending a few minutes sitting on my bed with my waste basket feeling like I was going to throw up (usually it doesn't get quite that bad). The headache didn't help (by this time I had taken something for it but it hadn't kicked in). I managed to get dressed by quickly making it over to my dresser, grabbing some clothes, and coming back to bed where I got dressed very slowly. But I made it out to rehearsal and the nausea lifted (after a few doses of vomitusheel - homeopathic anti-nausea med).
Rehearsal went alright - we made it through the whole play for the first time and it only took a little over an hour and a half! Not too shabby, although the kids still have some work to do on their lines. But overall it was okay, except that one boy got yelled at for pretty much no reason (by the other teacher, not me) and his mom called me up later for a different reason but told me that he had been upset so I'll need to address that tomorrow before the show.
Other than that, I managed to get some schoolwork done this morning while feeling pretty sick. Only two more chapters to do before I take the quiz (by the end of the weekend). It'll be nice when the play is over and I can do a little more schoolwork and hopefully finish the class before too long. Okay, gotta hook up to the Primaxin. Thanks for stopping in to see me! Oh, and as you can probably hear, I changed the music on here. For info about the new song, scroll up towards the top of the page where the music controls are. Hope you all have a good night!
Wednesday, November 30, 2005 11:04 PM EST
Hi Everyone,
Well, today went better than I had thought it would. This morning after getting a call back from the father of the boy playing the Tinman in "The Wizard of Oz" saying he was available all afternoon for a rehearsal, I decided to try one last attempt to get a small group of kids together for an extra rehearsal and we did end up having an hour rehearsal with just Dorothy, the Scarecrow, and the Tinman. It wasn't as good as it could have been with the Lion (and possibly a few other kids) but it was better than nothing. So, I was at work from 1-4, then rehearsal from 4-5, then ran home to try to eat some dinner (I managed to make some frozen french fries and gag those down) and finish getting my Lyme info stuff together before running off to my Lyme info session at my church tonight. The info session went well, although it was pouring rain all day and I think that kept some people away (there were 9 people there including my parents and the tech guy who taped it so I'll have it on DVD). But the people who were there were very interested and asked some good questions (some of which I couldn't really answer very well) and I'm just glad it's over and I have it under my belt. Now I just have to get through this weekend of "Wizard of Oz" hectic-ness and I can finally rest a little bit!
This morning I also got a call from Dr. Bock's office (his secretary) saying that he'd really like to see me tomorrow instead of waiting 'til next week. So we went through the same thing we went through two weeks ago when I was there and I told her that I'm seeing my primary care on Friday so it got resolved. I also told her that my nausea is under control so if Dr. Bock wants to up my Primaxin dose it would be okay to do that now. So, they called my infusion company, they were really on the ball and sent out a delivery of bags of 250mg of Primaxin each to infuse after the 500mg bags I already have and I'm about to hang my first bag of 250mg (just waiting for the 500mg bag to end). I'm hoping the two bags is just because I have the 500mg bags to last me through Monday (or Tuesday). The extra bag will add another half hour to each infusion so that ups my IV time by at least an hour and a half each day and pushes my bedtime back even further! Oh well, I'm just hoping I handle this increase okay!
That's it for me for tonight. I hope you're all having a good week so far and enjoying yourselves the best you can! Thanks for stopping by to see me!
So, anyway, after rehearsal I went straight over to choir rehearsal and managed to eat some dinner (well, it was technically supposed to be my lunch, but that didn't happen) before the rehearsal. While there I also got a call from the mother of the girl playing Dorothy because she (the girl) is stressed about the play because many of the other kids don't know what they're doing or a lot of their lines! We talked about the options of how to handle it and unfortunately there's nothing that can really be done about it - can't push the play back to next weekend because there's other things going on at the art center, I tried to add an extra small rehearsal tomorrow with just the four main characters but the lion (the one we're having the MOST trouble with) is unable (and/or unwilling) to come. I feel so bad for Dorothy because she's put so much work into it and I really hate that the other kids are going to mess things up because they're not doing what they're supposed to do. Okay, enough about that. Anyway, as I said at the beginning of this, my day wasn't very good and I just want to go to bed and hope that tomorrow is better.
Tomorrow is day #3 in my marathon week: I'm working from 1-5 and then my Lyme disease informational evening starts at 7:30 but I have to be there early to set up (obviously). I also need to de-access for the morning, get a shower in, and access again before going to work. And hopefully get a chance to straighten my hair so I'll look okay for the info night (it's being taped and put onto DVD for me so I can make copies and give it to other people). And sometime in there I need to get some schoolwork done (maybe while I'm at work if it's slow?). I just want this week to be over! Thanks for stopping by and I hope you're all having a good week so far.
Tuesday, November 29, 2005 11:22 AM EST
Hi Everyone,
Sorry for no update last night. First the internet was acting up (or maybe it was just my computer) and then I just didn't feel much like typing an update. Yesterday was actually not a bad day for me. I don't want to jinx myself or anything, but I think maybe the Primaxin is making some kind of small difference. *Knock on wood* *Knock on wood* *Crossing fingers* *Knocking on wood some more* I really don't want to get my hopes up too soon but I do feel that there might be a small difference over the past few days.
So, back to yesterday. I did my morning routine with Zofran and Primaxin and then actually spent time cleaning up my room a bit and finishing to put up the Christmas decorations in my room. I have multi-colored Christmas lights all around the room and it's nice to just be able to turn off all the real lights and just have those on. I'll take some pictures later today and put them up tonight. Then I managed a shower (it's amazing how few showers I can get away with!) and finished up my PowerPoint Lyme disease presentation for my informational night at my church tomorrow (yikes!) and printed out some handouts I want to have for it. And I did some school work which I struggled with a bit but wasn't that bad. I need to do some more today. Then there was an extra "Wizard of Oz" rehearsal added for a small group of kids (five of them) to practice a scene that was just awful last week. Well, two of the five kids showed up so we just ran lines with me, Michele (the other teacher), and one of the parents reading in the other three parts. I'm trying to not be stressed out over the play and I think I'm doing okay with it but it could change after the rehearsal today.
I spent my evening online checking up on people and just generally relaxing. Today isn't going to be as busy as yesterday (which is a change) but I do have to get out to shop for the two kids I'm a Green Santa for (the green santa program is for kids with Lyme or who have parents with Lyme who are in need of help for Christmas presents) and then make it to rehearsal way early to finish up the lighting and sound effects and then I have choir rehearsal after the play rehearsal. I should still be standing at the end of this but I may be wobbling a little bit! I'll update again tonight if I have the energy.
Thanks for stopping by! I hope you're all having a good week so far!
Today was an okay day overall. This morning I went and sang at my mom's church, I spent the afternoon finishing up my PowerPoint Lyme disease presentation for the Lyme info night I'm doing at my church on Wednesday, and then started setting up the Christmas decorations in my room. And this evening my brother and I went out to see the new Harry Potter movie - it was good and of course missing some things from the book since the book was insanely long. Now I'm doing my evening Primaxin infusion (and feeling a little nauseous from it, but I intend to lie down after I finish writing this so that should help) and I'm really tired so I need to get to bed soon. This upcoming week is going to be rough - "Wizard of Oz" rehearsals Monday, Tuesday, and Thursday; working and Lyme disease info presentation on Wednesday; "Wizard of Oz" performances Friday and Saturday; and greeting at church on Sunday. Whew! I better get to bed and try to conserve my energy for the week!
Thanks for stopping by to see me. I hope you all had a great weekend!
Today was...okay but I'm not feeling great now. I've been having more and more trouble getting myself up to hook up to my morning (8am) Primaxin infusion and this morning was no exception but once I was hooked up I curled back up in bed and the next thing I knew I woke up two hours later! The infusion was finished, of course, and it wasn't a big deal that it had been finished for a while and I hadn't unhooked as soon as it was done. And it was nice I slept through the whole thing and got those few extra hours of sleep.
Anyway, I went into work around noon and it was a very busy day. Last night was the official opening (a big deal) of the holiday shop and today was a special event - "Felicity's Thanksgiving Tea Party" (as in the American Girl doll Felicity). So, it was busy with lots of people in and out and I was kept pretty busy for most of the afternoon until after we were supposed to be closed because there were some stragglers and then I had to spend a few minutes with Michele, the other theater teacher, trying to figure out how to hang the Wizard of Oz backdrops and stuff. Anywho, I got home just before 6:00 and have been hanging out since then, just finishing up my Primaxin infusion and then I'll hook up to my saline and call it a night.
I've been really tired lately, probably because I've never had time to recover from one thing before having to go full swing into something else. Right now I'm full swing into "The Wizard of Oz" which is Friday and Saturday. After that I'll be able to take some time to regroup and try to rest but I'll also be working more in December (gotta have a little extra cash to buy Christmas presents with!) and I'll have to spend time trying to finish my online Cultural Anthro class (I have a feeling an extension will be necessary since I have basically not been able to get much of anything done since the mid-term a few weeks ago and the class is supposed to end soon!). I do plan to be serious about resting and getting more sleep and all that stuff so I can hopefully recover enough to let the antibiotic do it's work. Since I've gotten the nausea under control with a good Zofran schedule, I added the tinidazole (anti-infective) back in tonight but just a half a pill once a day. Hopefully I'll be able to get in touch with Dr. Bock's office next week to tell them it's okay to increase my Primaxin dose before I see him on the 8th.
That's it for me tonight! I'd like to ask that you keep my uncle in your thoughts as he's been dealing with some health problems lately and will be having surgery this week (I think it's this week) but I won't go into detail about that. And as always thanks for stopping in to see me and I hope you're all having a great weekend so far!
Just a very quick update tonight because I'm really tired and almost done with my Primaxin infusion so I can go to bed soon. Today was an okay day considering that I spent it in bed. I watched "THE" Christmas video in my house (it has "Garfield Christmas", "Claymation Christmas Celebration", "Charlie Brown Christmas", "Frosty", "Muppet Family Christmas" and a few other things and pretty much everything on it was taped off TV in 1990 or sometime around there). It's the video that we watch every year and all of us know the words to most of the shows on it, especially "Garfield Christmas" and I even know what commercials come when! Kind of sad, I know, but when you consider that I've been watching this video for more than half my life every year multiple times, it's not that surprising.
Overall I'm just really tired today. It was good that I stayed in bed and rested, although I could have used a few naps and didn't get any because I was occupying myself on my computer (Heather, if you're reading this, I spent hours on the D.E.B.S. forum). Other than that, nothing exciting to report. I obviously changed around my site to make it Christmasy - hope you all like it! I'm going to stop there and head to bed very shortly. Thanks so much for stopping by and I hope you all have a good weekend!
Afternoon Update
As you can see, I've Christmas-ized my site today. It is the day after Thanksgiving so it's officially the Christmas season! I hope you like the changes. The song I have playing now is "Bless Us All" from "A Muppet Christmas Carol". I'll do a "real" update tonight, just wanted to do a quickie right now!
Peace and healing,
Annie
Thursday, November 24, 2005 11:46 PM EST 
Hi Everyone,
I just got back from my aunt and uncle's house in Connecticut about a half hour ago. Thanksgiving was good and I held up alright but I'm exhausted now after a long day of eating, talking, and having to stay upright! I do have some good news (well, sort of) - basically a sign that the saline is helping me. On Easter this year (before starting the daily saline infusions) I had a few glasses of wine with dinner and had to spend the rest of the evening and night flat on my back with my blood pressure quite low (for me at least). So, I basically haven't drunk much at all since then. Today I had some champagne, though (a few glasses) and I did pretty well with it! No need to lie down, not feeling dizzy or really sick when I tried to sit up or walk around, just basically handled it as well as I used to! (Just so you know, I really don't drink very often at all but I like to have some wine or champagne at special dinners or family gatherings which aren't that frequent.) I was also able to handle eating a pretty normal size plate of food (normal for me, anyway - I've never been a big eater so it wasn't piled high or anything) and not feel too sick from it! It helped that I was scheduled to take my Zofran right before eating so that probably played a part in the lack of nausea.
Anyway, it was a nice day and I wish I got to see my aunt and uncle more frequently. They're not that far away (about 2 1/2 hours) but we only see them 3 or 4 times a year, and at least one of those times is when we're handing off the cottage in Maine! My aunt was able to tell that I wasn't feeling great because she said she can tell by my eyes - it's very rare to have someone be able to see that I'm not feeling good even though I look good overall. I found it difficult to try to talk about Lyme with one of the people there because she just didn't understand that I've been dealing with this for a long time and know what I'm doing (usually) and that I really didn't need her suggestions to go on a vegan macrobiotic diet to cure the Lyme and just forget about the antibiotics. It also struck me that it was hard for people (mainly this one woman) to understand that just because I'm not sleeping all the time doesn't mean I'm not exhausted and feeling sick. But, she didn't mean any harm, she's just a little...different and hard to take in large quantities (she's my aunt's cousin's step-mother so she's not really related to me). But, overall it was a good day and I'm hoping to see my aunt and uncle in a few weeks on my way back from seeing Dr. Bock in Albany (they're kind of on the way home, which is nice).
Thanks so much for stopping in to see me and I hope you all had a great Thanksgiving!! HAPPY THANKSGIVING TO YOU ALL!! Have a great weekend (and don't get trampled by the crowds out at the malls and department stores! I plan to stay in for as much of the weekend as possible!).
Today was a pretty good day overall but very tiring. It started out with me waking up to do my morning Primaxin infusion and not wanting to get up for it at all but I was very happy to see that there was a dusting of snow on the ground! Somehow that just brightens my mood. It's all melted now but we're supposed to get more tomorrow, just in time for our drive out to Connecticut and the drive back home in the evening (I'm bringing extra medicine and supplies in case we get stuck at my aunt and uncle's overnight but I don't think that will happen).
I was basically in the kitchen baking/cooking for most of the day and I successfully made cranberry sauce, rolls (from scratch), and snickerdoodles to bring tomorrow to my aunt and uncle's house. All the baking and standing up and everything really wore me out, though, so I'm just going to leave it there for tonight and get some sleep.
HAPPY THANKSGIVING!!
Tuesday, November 22, 2005 11:13 PM EST
Hi Everyone,
Today lived up to the name I've given it - Tiring Tuesday. It started out alright although I really didn't want to get up to do my morning Primaxin infusion. I hate the early mornings and would love to be back on my twice a day schedule of IV meds but, oh well, guess I don't have much of a choice but to drab my butt out of bed and hook up and then snuggle back under the covers and hope it doesn't make me sick (still not making me sick, knocking really hard on wood). Anyway, after that I stayed in bed for a while before getting up and getting dressed so I could go out and run errands before work (theater classes). The classes did not go very well. It was supposed to be a full run through of "The Wizard of Oz" but many of the kids don't know their lines well enough to have anything near a run through of any part of the play. It was pretty bad and I was quite disappointed with the kids. I know they can handle this stuff and I just feel there wasn't enough structure and direction for them to do their best. Hopefully they will take their scripts with them wherever they go for Thanksgiving and work really really hard on them so they'll know them backwards and forwards for our last two rehearsals next week. It's just all frustrating and I feel like the Young People's Theater program is going downhill without challenging the kids to do harder plays, and instead just settling for what's easy. I don't feel like I have that much power in the situation (I mean at the art center) to make changes but I'll put in my two cents wherever I can.
Anyway, after that long and stressful rehearsal I was thinking I'd skip choir rehearsal but in the end I went and it was good but everyone seemed quite punchy and I didn't have the energy to be punchy so I mostly just sat there and laughed at everyone else. And I'm going to be singing a solo on Christmas Eve (I just have to figure out what I'll sing - any suggestions? I'm a soprano). So now I'm just exhausted and still have about 15 minutes left of my Priamxin infusion before I hook up to my saline and head to bed.
I was supposed to have physical therapy tomorrow afternoon (I think I talked about the PT situation before, but just to catch you up the PT program I was put in isn't working for me and I'm not well enough to really put myself full swing into the kind of program they have in mind for me so I'm putting it on hold but when I called to cancel my appointment on Friday I felt guilty and ended up rescheduling for tomorrow) but I called tonight and left a message cancelling it saying I'm really not doing well right now and I'm not sure when I'll be able to reschedule. It was much easier to cancel to an answering machine than it was to cancel straight to my physical therapist on the phone. So, tomorrow will just consist of lots of baking. I'm planning on making rolls and cranberry sauce and hopefully snickerdoodles or some other kind of cookies, all of course to bring on Thursday to Thanksgiving dinner at my aunt and uncle's house. Hopefully I'll hold up while baking all that and maybe get some school work done in the process! (By the way, my online professor is really great and has been checking up on me and really being supportive and understanding. I can't say enough about how much of a difference that makes!)
That's it for me. I hope you're all having a good week and feeling good!
Today was an okay day but I didn't spend enough time resting so now I'm really exhausted. I have to say that the inconvenience of waking up at 7am to take my morning (double) Zofran so it will be working in time for my 8am Primaxin infusion is totally worth it because I haven't had a bad nausea morning since Thursday (knock on wood). And the rest of my Zofran schedule seems to be working well. I know I keep saying it but it's just a relief to finally seem to have that under control. But now I'm running into the problem of being hungry and then trying to eat and ending up feeling gross from eating so I'll have to figure that out, now. So far, I seem to be tolerating food a little better than I was but I need to stick to the things I know I can usually handle to avoid that gross feeling.
So, back to my day. I had a dentist appointment (for a cleaning) this morning which went well and I was in and out in about a half hour - pretty quick! It was nice to get to chat with the hygenist who I've been seeing since I was really little so she's interested in hearing how things are going each time I go in. After that I stopped in at the library to get a few things and then went over to work for a few hours to help get the holiday shop set up (see my update from yesterday for more about the holiday shop). Then I came home and crashed, spending the rest of the afternoon hanging out in my comfy chair. I did manage to get a little reading done for my online class but not nearly enough so hopefully I'll get a little more done before I call it a night.
Oh, and before I sign off for the night, I just have to say one more thing. If anyone (in the U.S.) has seen the Food Network special "The Secret Life of...Thanksgiving", at the beginning of the show where he goes to Plymouth Plantation (by the way, that's about 20 minutes from where I live) and talks to a pilgrim there who mocks his clothing and later on leads some guests in the Thanksgiving meal, that's my church friend and dinner theater director, Michael!! He plays Gov. William Bradford at Plimoth Plantation and his wife, Jill, works there on the costumes and other behind-the-scenes stuff. When I saw the show and saw that Michael was on it, I was shocked and so excited! If you haven't seen it yet, try to catch the first 10 minutes of it sometime (it's only on a few more times so you'll have to be quick!).
That's it for me for tonight. I'm going to do some knitting while I finish my Primaxin and then head to bed (maybe do some more school reading, too). Thanks for stopping by to see me!
Sorry for the lack of update yesterday. I've had a bit of a rough weekend and updating has fallen down on my list of things to do. And I'm really exhausted tonight so this will be brief. Yesterday I worked from 10-2 (actually it was more like 2:30) and basically had to start getting the holiday shop set up. The holiday shop is basically things by a bunch of local(ish) artists who make various kinds of crafty things (jewelry, stained glass, ornaments, cards, purses, doll clothing, etc.). The holiday shop is always my favorite time of year because it's a nice change from the usual art shows of paintings and photographs and it's great to see all the different things that are available (and I try to do some of my Christmas shopping there, too, although I don't get a discount or anything). After work I basically spent the rest of the afternoon resting. This morning I had a long day at church - choir rehearsal before the service, then the service, lunch with some of the other choir members, more choir rehearsal, choir rehearsal with the other Middleboro choirs, and then the Middleboro Music Guild Thanksgiving Concert. In the midst of all this I had to do my afternoon Primaxin infusion during the first afternoon choir rehearsal which was interesting but everyone was great about it and asked some questions but generally weren't phased by it (or at least didn't let on that they were). Needless to say I'm quite exhausted now from the long day. I left the house at about 9am and got home around 5pm - much longer than I probably should have been out but, oh well!
This morning at church I was having some heart palpitations and just happened to check my pulse while they were happening and it was weird (and kind of cool) that I could feel my pulse miss a beat when my heart would feel weird. I hadn't ever been able to catch it before and really tell what was happening because usually they're sporatic but for a while they were happening once for every 4 or 5 beats so I caught a few. I've also been having these sudden dizzy spells but so far it's only happened a few times, but it's still kind of scary. I won't go on and on about everything, though. I have figured out my Zofran schedule pretty well so that I haven't had a bad nausea spell (the kind that just makes me need to curl up in bed and not move) since Thursday morning! Yay! If this keeps up I may call or fax Dr. Bock in a while and say that I could try going up to the higher dose of Primaxin he wanted me on. We'll see how things go this week, though.
That's it for me tonight. I hope everyone has had a good weekend and is feeling good! Thanks so much for stopping by and I'd love it if you took a minute to sign my guestbook.
Sorry for no update yesterday - I wasn't doing too well when I got home from New York, although I did manage the trip pretty well and ended up sleeping pretty much the whole way there and back (I just put on my headphones and listened to Harry Potter for the whole time - gotta love mp3 players!). First of all, I didn't go to the auditions on Wednesday night. I lay down for a little while and just didn't seem like I was going to be able to get up again so I opted to skip this play. The decision actually came down to me thinking about how likely it would be that I'd be up to making it out to rehearsals a few nights a week and the more I thought about it the more apparent it became that it would be a lot for me to try to do right now. It really sucks to have to make decisions like this, to pass on things you really want to do and that you enjoy so much in order to accommodate fatigue and pain, but I guess these kinds of decisions are just what they are and there's no way around them.
Yesterday my appointment with Dr. Bock went alright - nothing much new to report on. He gave me some powder nutritional stuff to hopefully increase the protein in my diet and just generally keep my diet a little more balanced (I guess the few things I'm able to eat don't make up a balanced diet!). I have found that peanut butter and jelly sandwiches are fairly easy for me to handle so I think I'll start making that a staple. Anyway, Dr. Bock said that he was really hoping to increase the Primaxin to 750mg three times a day (I'm on 500mg three times a day right now) but with the nausea being as bad as it is, neither of us thought it was a good idea right now. Unfortunately he didn't have any new suggestions on what to take for the nausea besides the Zofran so I'll just have to try to be stricter with my Zofran schedule so he can hopefully increase the Primaxin dose when I see him next. He's also going to call some colleagues to ask about a supplement he's heard about for nausea so hopefully that's something that could help. He said we'll give the Primaxin six weeks to start working and if I haven't noticed a difference by then he'll take me off it and he's not sure what he'd do at that point. He mentioned trying high-dose IV vitamin C and IV glutathione and I think there were a few other possibilities but nothing to really get at the Lyme, just mostly to try to help my immune system. I go back to see him in 3 weeks (for some reason he wanted to see me in 2 weeks but that's the last dress rehearsal for "The Wizard of Oz" and I'm seeing my PCP that Friday anyway so I pushed it back a week).
Today I spent the day in bed watching DVDs on my computer (Heather, if you're reading this, I can't seem to stop watching D.E.B.S.!) and generally taking it easy. Then this evening I went out with my dad (and mom) to my mom's church to see our friend, Art, play (he's a folk artist...sort of - he does pretty much all covers and he's great) and I actually managed to get a shower in before going out! But that wore me out so I'm going to cut this short now. I need to get some rest while I finish my evening Primaxin dose and then hook up to the remainder of today's saline and hit the sack. Thanks so much for stopping by to see me and I hope you all had a good week and are feeling good!
P.S. As you can hear (I hope), I changed the music on here. You're now listening to "I Wonder" by Chris Isaak. Here are the lyrics if you missed them further up towards the top of the page:
When I was younger I believed that dreams came true.
Now I wonder.
Cause I've seen much more dark skies, than blue.
Now I wonder.
I keep on praying for a blue sky,
I keep on searching through the rain.
I keep on thinking of the good times, Will they ever come again?
Now I wonder.
Now I wonder.
I keep on praying for a blue sky,
I keep on searching through the rain.
I keep on thinking of the good times, Will they ever come again?
Now I wonder.
Now I wonder.
When I was younger I believed that I could win.
Now I wonder.
There was a time when you and I, Walked hand & hand.
Now I wonder.
I keep on searching for the old me,
I keep on thinking I can change.
I keep on hoping for a new day,
Will I ever feel the same?
Now I wonder.
Oh I wonder.
Now I wonder.
Hi Everyone,
I'm writing this on the train (I just got on in Baltimore) on my way back home, but I won't be able to post it until I get home this afternoon. Sorry for no update last night but I was so exhausted and just not feeling great so I opted to just rest (plus the internet was being difficult and not always connecting). Yesterday I got to go up to Pennsylvania to see my DYNA friend, Heather. It was a really nice day and it was so nice to see Heather and her son, Ashton. Ashton is just about to turn 2 (his birthday is tomorrow!) and he does have a cranky streak which made our lunch out a little difficult but it wasn't that bad and I didn't really mind (the people around us might have minded but it didn't really bother me). After lunch we went back to Heather's house and just hung out and talked for quite a long time (I didn't head home until about 6:00pm and I had arrived at noon). It was just a really nice day.
My visits with Kim and Heather on this trip have really made me appreciate my DYNA friends and all my friends who have chronic illnesses because there's just such a level of understanding there and no need to explain anything. If I didn't feel like I could stand, it wasn't a big deal for me to just plop myself down. And if sitting up had become too difficult I'm sure it wouldn't have been a big deal for me to lie down. It constantly amazes me at the bond that can be formed just by having lived with a similar condition. So, if any of my DYNA friends or LymeNet friends are reading this, thank you for supporting me and helping to make things easier to deal with!
So, anyway, after I got home (it wasn't a bad drive at all, although I kept second-guessing myself on the drive home and almost turned around a few times when I was in fact on the right road) I told my dad about the day and we watched a little TV before heading downstairs to the restaurant for dinner. The restaurant had good french fries, but I'm not sure I really liked their other food. There was a very limited selection and a lot of the things on the menu were different hamburgers, which I don't eat. But, I found something to eat both times we ate there for dinner and the breakfast was really good (I got a belgian waffle the one morning we went there for breakfast).
Now my trip is over and I just have this train ride to enjoy. I wasn't sure I was going to be able to handle the train ride at all a few hours ago. Yesterday afternoon I opted to skip my Primaxin infusion since I was at Heather's and didn't feel like feeling crappy for the rest of the afternoon. I had previously planned to skip the dose this morning but I didn't want to skip two within 24 hours so I did my infusion this morning and it could have been disasterous because it made me feel really really sick. I didn't take Zofran before the infusion and that was a mistake. So, I spent about 20 minutes after the infusion quietly curled up on my bed and wondering how I was going to get up, get dressed, finish packing up my stuff, and manage a 6 hour train ride feeling so awful. But, after a few doses of vomitusheel (my homeopathic nausea med) I felt a little better so I dragged myself into the bathroom with my clothes to get dressed and managed that by sitting down with my head between my legs while I got dressed most of the way. Anyway, to shorten this a bit, the Zofran had kicked in, I've eaten a granola bar, and I think the train ride will be just fine and I'll be able to enjoy things. I have my computer (obviously) and I have quite a few DVDs so I'll probably pop one in when I'm done with this and maybe do some knitting when my arms get a little strength back (the nausea from the Primaxin leaves me feeling really weak).
This is getting long, but I'm not done yet. The trip is over but I want to just say how glad I am that I went. I got to see Baltimore and I got to spend time with my dad. My dad and I are a lot alike, and because of that we get along really well. He's the person I go to if I really need to talk because he listens better than most other people around me and he really does try to understand how things are for me. I don't even think I can explain it all very well but my dad and I are kindred spirits and it was just really great to get to spend this time with him. I wish I didn't have to leave early (stupid doctor's appointment) but I'm just glad I had the time with him that I did this past week. And I hope I'm able to tag along on his trips more often.
Okay, that's the end of my update. If you've made it to the end, congratulations! If you didn't make it to the end...well, you're not reading this now, are you? I'm really tired from a busy week but it will be worth the major crash I have when I get home. I just have to have enough energy left to stir up to make it to Albany and back tomorrow for an appointment with Dr. Bock. Hopefully the appointment will go well! I mostly just need orders for my weekly labs (apparently with the switch from Clinda to Primaxin the lab orders weren't renewed), get the correct orders for the hydration called in to Coram, and talk to him about this nausea and possible solutions for it (although I've kind of figured that out for myself to some extent). I hope you're all having a great week and feeling well!
Evening Update
I made it home safe and sound, although the train was a half hour late getting in. I spent the train ride watching DVDs and knitting mostly so it was a good ride but I probably should have taken some time to sleep - I'm exhausted. I was planning on going to auditions for "Steel Magnolias" tonight at the art center (where I work) but I'm not so sure about it anymore. I'm just so tired but I have a sneaking suspician that I will drag myself out to the auditions. I'll let you know about them (if I go) tomorrow when I get home from Albany. I'm going to take a little nap now and hope I'm feeling a little more energetic in an hour when I'd have to make the decision of whether or not to go to the auditions!
Well, today was a very busy day and I remembered my camera so I have lots of pictures to show you! I did make it to the aquarium (a very big and very cool place but no penguins 
). (To see how the rest of my trip to Baltimore has gone, check out the journal history.)So, here are some pictures from the aquarium (some didn't come out that well since I was taking pictures through the glass a lot and not using the flash):
Lots of fish (in the big tank)
A sting ray (a little hard to see)
A turtle (I don't remember what kind of turtle, there were quite a few throughout the aquarium)
A parrot in the rainforest part of the aquarium
Another rainforest bird (looks kind of like a flamingo)
A cool camouflaged fish
Big fish in the tank with the sting rays
Alligator
After the aquarium, I met up with my dad and we went out for lunch (well, I ate lunch and he just had a shake because he had just had lunch with some people from the conference). Then I went to Barnes and Noble and spent too much on books (but one is a Christmas present so it wasn't all for me). Overall the day was good (although the weather wasn't quite as perfect as it was over the weekend). I did way too much walking today and yesterday and my legs and joints are quite sore but it was worth it because I had a good time. I don't think people who don't have chronic illnesses can understand how sometimes you just need to push yourself so you can do something fun and it's worth the crash afterwards because you feel like you've had a little bit of a life. The crash I get after this trip (and as residual effects from the retreat) will be worth it...at least I hope. At least I'll have a little more time next week to recover since it's Thanksgiving week and I'm not working as much (just Saturday, not Wednesday, too).
Okay, I'll leave you now with a picture of me in front of the Inner Harbor with the aquarium behind me on the right (your right) and the Hard Rock Cafe and Barnes and Noble on the left (your left).
Sunday, November 13, 2005 9:25 PM EST
Hi Everyone,
Just a quick update today (sorry, no pictures - I forgot my camera in the hotel room). Today was the day that my DYNA friend, Kim, came to hang out which was a lot of fun. We roomed together at the DYNA Summer Chill in July but hadn't talked much since then so it was great to catch up. So, in order to get the most out of the afternoon and not interrupt things with my afternoon infusion, I got up extra early this morning (6am to be exact) to do my morning infusion so I could do my afternoon infusion at 1pm and be done by the time she got here at 2pm! It worked out well. But before she got here, my dad and I went downstairs to the restaurant for breakfast which was good. Then I hung out in the room for the rest of the morning and after my dad left around noon.
Once Kim got here we walked down to the Inner Harbor (where my dad and I went yesterday) which was great - it was a gorgeous day (although you'll have to take my word for it since I didn't have my camera). We walked around, went into some shops, walked some more, went over to Little Italy (but didn't end up eating there), walked back, and ended up eating at an Italian place at the harbor. It was a lot of fun but lots of walking so I'm going to try to go to bed early so I'll be up to some more walking tomorrow! Tomorrow is the day I have to myself - my dad's in meetings all day and I don't have any friends visiting or to be visited. So my plan is to get up fairly early and make it out to the aquarium around the time it opens (10am) so I'll have as much time there as I want. Then I'll spend the rest of the time hanging out at the Inner Harbor - there's a huge Barnes and Noble with a Starbucks inside that I'm sure I could pass a few hours in. So that's the plan! I hope it's a nice day, but the weather report says a chance of showers so we'll see. Now I'm just going to knit for a while and then hook up to my Primaxin and then my saline for the night before heading to bed.
I hope you all had a good weekend!
Saturday, November 12, 2005 7:55 PM EST
Hi Everyone,
Today was a nice day but I'm not feeling all that great this evening (mostly the usual stuff - tired, headache, nausea, etc.). After my morning infusion of Clinda I did some stuff online and then managed a shower (gasp!) before heading out to check out the Inner Harbor with my dad. The walk down there wasn't bad and it was a really nice day so it was nice to get out. We walked around a bit, went in a few stores, and then got some food at the very large food court before going outside to sit and listen to a cool music group playing music from the Andes (in South America). There was also a guy making balloon animals and stuff for kids which was cool and fun to watch. Then we headed back and I've spent the rest of the day online, watching TV, and just hanging out and resting. I think we'll probably head out for some dinner soon (my dad had a reception thing to go to tonight but he's back from it already). Just wanted to let you all know how things are going and what I'm up to! And here are a few pictures (I didn't get any of the guy making balloons or the musicians, unfortunately):
Dragon paddle boats on the harbor
The aquarium (it looks huge!)
View from my hotel room window
My hotel room (yep, that's Roly Poly there by my bed)
And, because I have way too much time on my hands, here's a picture of the drawer in the hotel room dresser devoted to all my medical paraphernalia with labels of what everything is:
If you think I'm really weird, check out Diana's page with her diagram of her injection bruises and other scars. That's it for tonight. I hope you're all having a good weekend so far! My plans for the rest of the time here in Baltimore have changed slightly (mainly cutting out the plan to go into D.C. for a day in an effort to conserve energy and because I can find plenty of stuff to do here in Baltimore!) but tomorrow I'm still getting together with my DYNA friend which I'm really looking forward to. And I'm getting together with another DYNA friend on Tuesday. Yay! I'll update again tomorrow with some more pictures!
Friday, November 11, 2005 11:29 PM EST
Hi Everyone,
Just wanted to let you all know I'm in Baltimore, safe and sound, but it was a loooonng day in the car (just over 9 hours from pulling out of the driveway to getting to the hotel, and then a while longer to figure out where we could park). We were stuck in traffic going through New York City for two hours (to go 20 miles!) so that wasn't much fun, but I wasn't the one driving. And I had a first today - first time infusing antibiotics in the car! It was interesting - I hooked the bag on the clothing hook in the backseat and it worked pretty well and didn't go in too slowly so it only took the usual hour. It was definitely interesting and it's nice to know that it's possible to do that if I need to!
I'm feeling really really tired and pretty nauseous, thanks in part to eating real food for dinner. I should learn that me and real food just don't mix very well! Oh well, I have my pretzels and chex mix and banana bread and pumpkin cranberry muffins (I made both of those last two things at home yesterday) along with some containers of jello and mini cheese things to get me through most of the time I'm here. It's rough to try to eat food away from home but I'm sure I'll manage somehow. Plus I brought lots of propel and gatorade so I'll be well hydrated at least! I need to go lie down - my Primaxin infusion is making me feel pretty crummy and I'm just so tired from the long day. I'll write more tomorrow and keep you all updated about what I'm up to on this trip!
Thursday, November 10, 2005 10:43 PM EST
Hi Everyone,
Sorry for no update yesterday. I've had days lately where I just haven't felt like writing or talking or anything. Yesterday was one of those days. Getting used to the Primaxin and dealing with the worse nausea after each infusion is taking its toll on me. It's just been rough to handle. I don't like to complain or whine but sometimes it just gets to be too much.
And yesterday morning I had what was supposed to be the second half of my physical therapy evaluation and ended up not being an evaluation at all. They just stuck me on the stationary bike for five minutes (without monitoring my bp and pulse as they said they were going to) and then taught me leg strengthening exercises and stretches. I am not happy with the way they're handling my PT - the program I was put in is a cookie-cutter program where everyone gets the same plan and it's based around pain. I'm not there for pain but for general weakness and I'm not trying to build my muscles back up but keep them from getting weaker. It's all just not working for me and I'm going to cancel my next appointment and either just stop PT altogether now (and maybe try it again when I'm doing better) or try to transfer over to a PT program closer to home where they might individualize my program a little better. So, all that was kind of upsetting yesterday and I was just feeling awful to start with.
Then I had to go to work (I tried calling my boss to see if she really needed me or if it would be okay for me to just stay home but I couldn't get in touch with her) and that was rough to handle but I managed alright. Then I just spent the rest of the day in bed resting. And today I stayed in my PJs all day (thought I might have to go out to meet with the other theater teacher to talk about "Wizard of Oz" stuff but we ended up just talking on the phone). I had to pack since my dad and I are leaving in the morning for Baltimore (he has a business conference and I'm tagging along). I'll be there until Wednesday when I have to take the train back (we're driving down) because I have to be back for a doctor's appointment on Thursday.
Now I'm finishing my last Primaxin infusion of the day (it's interesting how I can feel myself get paler and the circles under my eyes getting darker as I infuse) and then I'll head to bed. Tomorrow will be a long day in the car but it will be a fun trip (I get to see two of my DYNA friends!! Yay!!) so it's worth it. My goals are to make it into D.C. one day to see the Holocaust Memorial Museum and National Gallery and go to the Baltimore Zoo (to see the penguins!), and of course see my two DYNA friends. And hopefully get to see my dad every once in a while (he'll be really busy with meetings and stuff). That's it for me, I need to get some sleep (and sign off before the nausea gets worse). I hope you've all had a good week so far! I'll be updating while I'm gone since there will be high-speed internet at the hotel. And I'm bringing my camera cable so I'll be able to get some pictures up here while I'm gone, too! So check back soon!
Tuesday, November 8, 2005 10:03 PM EST
Hi Everyone,
I'm leaving yesterday's update on the main page (below this one) since it was such a long update and fills you all in on all the...excitement of the weekend.
Today was not a very good day for me. The Primaxin (IV antibiotic) has really been rough for me to handle and it doesn't seem to be getting easier the longer I'm on it as I had hoped. It's only been just over a week, though, so we'll see what happens in the next week until my appointment with Dr. Bock. The infusion this morning went as well as could be expected (the usual nausea but it's gotten better since I started doubling up my Zofran dose first thing in the morning). I spent the morning in bed and managed to take a nap from about noon until 1:30 while watching "Muppets From Space" on my computer (my DVD player won't work because I left the connecting cord at the retreat center this weekend. I have to get a new one tomorrow.
Anyway, so after the nap I had to get up and do my afternoon infusion which did not go well. I was just feeling gross and nauseous and so I curled up in bed and watched some Friends on my computer. My mom came in after a little bit and did a little reiki on me (at least I think that's what she was doing - either that or she was just rubbing my back). After the infusion I got myself together enough to go to work and teach my theater classes but apparently I didn't look too good. The kids and my co-teacher said I looked pale and had big circles under my eyes. In a strange way it was good to hear I looked bad because it helps people see how bad I'm feeling. The classes went okay and I came home for a little bit before going to the first half of choir rehearsal at church. now I'm finishing my hydration infusion (I started it this morning but had to stop for my afternoon antibiotic infusion - makes me wish I had a double lumen IV line so I could do both at once) and I have to do my last Primaxin infusion before heading to bed.
Tomorrow morning I have the second half of my physical therapy evaluation (I had the first half yesterday which showed my flexibility is fine (except my hamstrings) and my muscles aren't that bad but definitely not where they should be). After that I'm going to go exchange the DVD wire I picked up yesterday (got the wrong kind) so I can use my DVD/VCR again. And then I have to work from 1-5. It's going to be a trying day and I just hope I'm feeling a little better than I was today.
That's it for me tonight. Just about done with my hydration so I better get my Primaxin all mixed up and ready to infuse. I hope you all had a good day today! I want to leave you with a great quote I got off of Julianna's CB page:
"You can't give up hope just because it's hopeless. You gotta hope even more,
and cover your ears and go 'bla bla bla bla bla bla bla bla!'"
--Philip J. Fry, Futurama
Monday, November 7, 2005 10:40 PM EST
Hi Everyone,
Okay, I'm finally recovered from the retreat weekend enough to get in an update (I'm exhausted so this may be a bit of a ramble). The Lyme Out Retreat this weekend went well overall but not without some very major and stressful bumps in the road. This weekend will not be easily forgotten by anyone who was there for the first 24 hours of the retreat (some people got there late - on Friday evening or Saturday morning). So, here's the short(ish) rundown of the weekend.
I arrived at the retreat center on Thursday at about 3:30pm, an hour and a half later than I had planned but I had a doctor's appointment with Dr. Hood (my PCP) that morning and then had to run errands and finish packing. Keep in mind that I told people they could start arriving at 4:00pm so I was already cutting it close. So, when I got there at 3:30pm I was horrified to find the doors locked. Yep, all the doors were locked up tight and there was no way for me to get in. I called my contact (Kelly) and she came over and unlocked the building but it took her about an hour to get there so I just had to sit there and wait in my car (thankfully only one person showed up during that time and she was a commuter and just showed up to drop a few things off). I was flustered that evening because of the locked doors but I recovered and did okay the rest of the day. But that was just the beginning. Friday was the really "exciting" (and stressful) day.
I should backtrack a tiny bit back to Thursday night to set up the scene for Friday's problems. On Thursday we (my brother (aka the cook for the weekend) and I) noticed that the kitchen was in pretty bad shape and the building was a bit dirty and disheveled so we weren't sure the building was cleaned before we got there. We also couldn't get the oven to work, kind of a big deal when you're planning on making dinners for 20 people for the weekend! Back to Friday. A wonderful woman at the retreat had a go at making the oven work. She's a chef and is familiar with kitchen stuff so she knew what she was doing. Apparently the oven's pilot light was not lit but the gas was not turned off, meaning that a small amount of gas was constantly being produced and put out into the room. I should note that the stove/oven was extremely old and not in very good shape. In trying to get the oven to work, the screw that adjusts the release of gas broke (or crumbled) since it was so old so once the oven was lit there was no way to turn the gas down, resulting in flames shooting out of a hole in the oven. If there had been instructions by the stove of how to shut off the gas, it wouldn't have been too difficult to deal with, but there were no instructions and no shut-off for the gas. We used a fire extinguisher to put out the flame but then there was gas pouring out of the hole in the oven. My mom pulled the fire alarm, we got everyone out of the building (a lot of people were outside already because it was a beautiful day), I got out with Roly Poly (my IV pole) in tow, and two people called 911 on their cell phones. Meanwhile, the woman who had been trying to fix the oven was running around the building trying to find the place to shut off the gas, which she finally found by running around the back of the building and up onto a fence to the gas tank.
So, the fire department showed up, made sure the gas got shut off and cleared the gas out of the building. A woman from the company that acts as caretakers for the retreat center also came and we found out that they had no idea we were going to be there this weekend, which explains why the building was locked when I showed up on Thursday. After a half hour or so we were able to go back in the building but now didn't have a working stove or oven and had to wash everything in the kitchen because of the stuff from the fire extinguisher that shouldn't be ingested. We weren't sure we were going to be able to get the stove replaced that day (and therefore that weekend, since it was Friday) but the caretakers got on top of it and within 3 hours they were back with a new stove and a new microwave. Granted, it took another 4 hours or so before it was installed and ready to go and we didn't have dinner until 8 that night but at least we were able to cook. If we hadn't been able to cook for that night (or the rest of the weekend), the church association that owns the retreat center was going to reinburse for us to order in food or go out to eat. That was only necessary on Saturday for lunch because there was a cleaning crew that came in from about 9am until about 2pm and we weren't able to get into the kitchen for most of that time. Everyone found somewhere to eat, though, and there were minimal stresses that day (except for not being able to be in the building for most of the day).
The rest of the weekend went better, but there were two calls to AAA (one for a car that wouldn't start and one for keys locked in the trunk of a car) and various things left behind when people left (including IV antibiotics (not mine) but they were able to be replaced). And the consolation for the stresses of the weekend is that the rental fee is being fully refunded and we've been invited back for another weekend at no charge (if we aren't all too traumatized from this weekend there). If they weren't offering a weekend for free, I wouldn't even consider going back, even though it's a beautiful location and overall a good building (minus the kitchen). But with a free weekend I will plan to go back and either have another full retreat there or just have a relaxed weekend with some (or all) of the people from this weekend's retreat - haven't decided about that yet. And there will certainly be another formal retreat somewhere else in the spring. I have a few places in the same area to look at and one of them is owned by the Ballou Channing District (the Unitarian Universalist district that my church is a part of) and it's right down the street from the one we were at this weekend.
Whew! Quite a bit more than I intended to write but I figured if I didn't write it all now I'm not sure it would all get written. Now for a very quick update on how I'm doing. I'm not that great right now and I have a feeling it will take me a while to recover but I'm trying to take it easy. I'm just completely exhausted, trying to adjust to my new medicine schedule (which is rough going), nauseous most of the time but managing to eat some semi-real food everyday, my joints are more painful than usual, and I just feel so weak and exhausted all the time. I don't attribute all this to the stress of the weekend because I did get so much out of the weekend and met some really great people and got some great support, but I'm sure the stress didn't help anything. I tend to crash after the retreats, mostly because of the crazy week I have leading up to them with tons of errands and everything. I'm able to see a downhill slide in my health over the past year since the first retreat and it honestly scares me to see it so clearly, but I'm remaining hopeful that the Primaxin will begin to make a difference soon and I'll start to feel some effects.
I'm going to stop there because I've already written a novel and I'm sure many of you are nodding off and just hoping I'll come to an end. I want to leave you with some very kind words one of the returning retreat participants wrote to me in an e-mail this morning (her name is Janette, pronounced "Yanette" not "Janet"). Janette, if you happen to be reading this, thank you so much for your kind words. They really mean a lot to me:
"You are a very brave lady. I am constantly amazed to watch you going about your duties with an IV bag above your head and a smile on your face, choosing to keep moving forward through life because standing still or moving backwards is not a choice that you will consider. You already inspire so many of us, and you will continue to inspire more. Your lovely energy will feed yourself and those around you. You are a gift to us all."
Peace and healing to you all!
Wednesday, November 2, 2005 10:44 PM EST
Hi Everyone,
I'm quite scatterbrained and exhausted tonight so this will be brief and may not make complete sense. But I wanted to get on to put in an update before the retreat this weekend (I won't have internet access there so there won't be any updates until I get home on Sunday).
The first thing I have to say is that this 8-hour infusion schedule is not working for me. I was up until after midnight last night finishing the 11:00pm infusion and then up again at 7am to do my morning infusion. After that infusion I drew my labs, de-accessed, and managed to fall back asleep for another hour or so before I woke up for good and eventually got up, took a shower, and went out to the grocery store to get some more of the food for the retreat. It was a busy morning and that was just the beginning of my day! Then I rushed home, accessed Winnie (my port), and took off for work with all my supplies for my afternoon Primaxin infusion as well as my hydration so I could hook up to that after the Primaxin. Infusing at work was fine and no one noticed (although there really weren't many people in while I was infusing). My boss didn't even notice it when she came in towards the end of the infusion! Oh, and we finally have DSL internet at work - I installed it all today and we're up and running. It's soooo nice to not have to deal with dial-up. After work I came home and started packing up my stuff for the weekend - I'm really worried I'll forget something but my brother will be going back and forth each day (he'd rather sleep at home than at the retreat center) so if it's anything really important I can always have him bring it.
So, tomorrow I have to be up for my Primaxin infusion, then I have an appointment with Dr. Hood (my PCP) at 8:45am (ugh, I hate early appointments!), I have to stop to get the last of the food and a few arts and crafts supplies, then come home, finish packing, pack up my car, and hopefully leave for the retreat center around 1:30! Whew! I hope I'm still standing by the time I get there! At least my mom and brother will be getting there not too long after me so they can help me unpack and get things settled. Oh, and I updated my blog yesterday. It's a bit random but take a minute to check it out!
That's it for me for now. Just a little while longer 'til my last infusion today and then I can finally get some sleep. I'll let you all know how the weekend goes when I get back on Sunday (or maybe not 'til Monday depending on how long it takes me to feel up to writing). Thanks for stopping by to see me. If you have a minute and could go over and visit my DYNA friend, Diana, I think she'd like to get some nice messages in her guestbook because she's in the hospital right now. And keep all the other Caringbridge kids and adults in your thoughts, too!
Tuesday, November 1, 2005 11:21 PM EST Hi Everyone,
Well, my first day of doing three doses of Primaxin went okay but the nausea is definitely an obstacle. This morning it was really bad, probably partially because I didn't take the Zofran too much before the infusion and I had nothing in my stomach. So, after the infusion I just curled up in bed and watched a movie with a rice pack around my neck and my hand on my head (I find that helps with headache pain). I did find that taking Zofran 15-30 minutes beforehand makes it not quite as bad, but it's still definitely unpleasant. I'm hooked up right now for my last infusion and the nausea is kicking in so this will be brief. So, the infusions went alright except for the fact that I SET my alarm to go off at 7am but didn't turn it ON, so it didn't do much good. But I woke up at 8am on my own so I did the infusion then.
Other than that, my day was a pretty normal tiring Tuesday except that I didn't go to choir rehearsal and instead went out to dinner (yes, I ate a little bit) and grocery shopping for the retreat with my brother. I can't believe the retreat starts on Thursday! Ahhh! We went to Ninety-Nine for dinner and then to BJs to buy a lot of the food but not the refridgerated stuff, I'll get that on Thursday morning on my way home from my appointment with Dr. Hood (my PCP). My theater classes went alright today, too, but were quite tiring since I wasn't feeling great to start with and I forgot I had to run a parents' meeting about props and set stuff. Oh, and earlier this afternoon I took the mid-term for my online Cultural Anthropology class - I got a 96% on it so I'm happy with it. The tests really aren't as hard as I keep thinking they'd be.
Now I just want to go to bed but the infusion still has a ways to go. I think I'll just curl up in bed to finish it up and hopefully not fall asleep before it's done. Thanks so much for stopping by and I want to especially say thanks to everyone who signed my guestbook with congratulations and support. It means a lot to me to know you're all there for me! I hope you're all having a good week so far. (Bleh, nausea's getting worse, gotta go!)
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