Hi Everyone,

Okay, time for a proper update on how things are going. First of all, the fevers continue, off and on, and I can't really see much of a rhyme or reason for them. They're usually not going up past 102* but there are still the occasional (usually middle-of-the-night) spikes up as high as 103.5*, and this feels even higher for me since my "normal" temp runs around 97.5*. I've been in touch with Dr. H (PCP), spoke to her yesterday after my test at Mass General (which went alright - more on that in a bit), and ended up turning around and going back to Newton (where I had just come from) for an appointment with her. It was good to sit down and try to rule things out and figure out what could be causing these weird fevers. She knows me pretty well (she's been my PCP for a while and is one who really listens) so she knows this is very unusual for me and she's concerned. So, the main things we're trying to do is figure out if it's my port which I really hope it isn't but given the fact that there's no other explanation and the fevers sometimes seem connected with when I infuse (start rising when I start an infusion) I'm pretty worried that's what it is. I went to the hospital and had blood cultures drawn along with a few other standard labs to see if they show anything. And Dr. H is also running a urine culture to see if anything's going on there (which she's pretty sure is not the problem since I have no symptoms of a UTI or kidney problem). So we're still stumped but at least the cultures have been drawn and now we have to wait it out and see if anything grows from it. If the port is infected, I'm looking at hospitalization for IV antibiotics to treat it and of course the possibility of ending up losing the port (please send some good thoughts that it won't come to that!). And Dr. H said that if we find no answer but the fevers persist, I may end up in the hospital for IV antibiotics anyway. Despite the fevers, I'm still going to work (the camp program at the preschool has started and I'm working there this week and next week - and commuting from home which means an hour and a half to two hour commute in the morning because of traffic) and so far no major fevers have happened at work. Yesterday early in the morning I had a really high fever (over 103*) but since I know now that they do go away, especially if I can stop them with motrin (they tend to not come right back when it wears off) I felt okay heading off to work with some motrin in my system and the cold air on in the car on the way up to work. And of course the fever was pretty much gone by the time I got to work and my temp stayed pretty normal until the evening when it went up just a little bit. Tonight, however, I'm dealing with a higher fever (not up as high as the other night but getting up there). I can tell when the fevers are coming on because I feel flushed, my ears get hot, and usually I get chills and body aches followed by feeling really hot. And now I'm carrying a thermometer with me everywhere and monitoring my temp closely. My stomach is still not good and my appetite just isn't there so I'm still eating very little but trying really hard to find things I want to and can eat.

Okay, enough about the fevers. The test at MGH yesterday went okay. The actual test was more unpleasant than anything else and I still have a sore throat from having the probe down my esophagus. But the testing apparently didn't show any major problems with my esophageal motility which is good but doesn't explain why I have trouble with things getting stuck in my throat and feeling things come back up. Oh well. I see Dr. R next Thursday (just a check-up after I start the low dose SSRI) so I'll find out some more details then and hopefully have a good visit with him.

In non-medical news...well, work is pretty good but I hate the commute. I kind of wish I hadn't signed on to do these two weeks of camp because it would be so nice to just have these two weeks off. But the extra money will be good (make up for missing three days last week which were unpaid) and it's kind of nice to see what the camp is really like. I may end up subbing at points in the summer, too, but not sure how much that will happen. And it looks like we (me and my future roommates) may have found a house to live in! It sounds great and Kat and Melissa are going to look at it on Monday (unfortunately I can't go because I'm at the preschool until 3pm and then off to the last day of swimming lessons) and hopefully it will all work out! One of the possible deciding factors will be if the move-in date is negotiable (it's down as July 1st move-in but we would like August 1st or at least mid-July) but if it looks as good as it sounds and the move-in date is firm, we'll probably still figure out a way to make it work.

Okay, I'm going to try to eat something and go to bed early tonight. It's nice to be (mostly) moved back in at home but my dresser still isn't in my room and there's a few more things I need to get set up before I really feel like I'm set for the summer. I just wish I could eliminate the traffic on the commute to work! Oh well, just 7 more days of that and then I have a nice break with vacations (to Connecticut, Maine, and Oregon) before my "real" summer jobs start. Thanks so much for stopping by to see me. I'll do my best to update when I have more news about the fevers and everything. I hope you're all having a great week! Oh, and if you'd like to get e-mail notifications when I update this page, please sign up through the notifylist link below.

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Monday, June 2, 2008 11:08 PM EDT

Hi Everyone,

Very quick update on what's going on. The fevers are coming back in the afternoons (except for today, but I had taken some Motrin for a headache earlier so that might have affected it) and there doesn't seem to be an explanation for it. My labs last Friday were fine - white cells normal which was a surprise, I figured they'd be high or low and give a hint as to what's going on. My liver functions are a bit high but not any worse than they've been occasionally in the recent past. I've talked to Dr. H (PCP) - well, talked to her through messages today - and the plan is to have cultures done of my port just to make sure it's not an infection there (which I really don't think it is) and possibly some other labs. I'll hopefully talk more with her about it tomorrow. My stomach is also still really not good, I'm not able to eat much and what I do eat tends to cause pain and more nausea than usual so I'm trying really hard to find things I can eat but it's hard. Hopefully that will get better soon!

Tomorrow I also have my esophageal manometry testing done tomorrow afternoon at Mass General so hopefully that will go well. And I'm officially moved out of my apartment and home at my parents' house for the summer although I still have to move some things in from the garage (where most of my stuff currently is). So this week and next week I'm commuting up to Newton to work at the preschool and it's going to be interesting but hopefully not too bad.

Alright, I need to get to bed, it's way past my bedtime and I have to be up by 6am to get on the road no later than 6:30am (it took me almost 2 hours to get to the preschool this morning - a drive that's usually only 1 hour - so I'm planning extra time for traffic). Thanks so much for stopping by to see me and I hope you all had a good Monday!




Thursday, May 29, 2008 11:56 AM EDT

Hi Everyone,

Okay, so whatever I had was really a nasty thing and hard to kick. I had a fever going up as high as almost 104* on Tuesday (or rather the equivalent of 104* since my normal temperature is about a degree below "normal") and I was pretty miserable. I was up in the wee hours of the morning on Tuesday throwing up which wasn't fun either but thankfully that was it for that and I was just nauseous and not eating until last night when that started getting a little better. Today my temperature is pretty much back to normal and I'm feeling much better so tomorrow I'm planning on being back at work (finally!). Just in time for the very last day of the regular school year. So now I'm going to just keep resting, get some extra fluids in, and probably watch some movies.

Thanks for stopping by to see me. I hope you've all had a great week so far!

Monday, May 26, 2008 10:00 PM EDT

Hi Everyone,

Just a quick update to say that I had a great weekend in Maine visiting my aunt and uncle but for the past 48 hours I've felt achy, more nauseous, and generally fluish. Came home to find that I have a fever (didn't have a thermometer with me in Maine - won't make that mistake again) so it's no work for me tomorrow which sucks because it will be an unpaid sick day. But there really wasn't any question about the decision. I just hope I'm feeling better tomorrow morning and the fever has at least gone down if not gone away! This all could be a herxheimer reaction (just started on the Primaxin (new antibiotic) on Friday night) but there was also a kid who got sick at school on Thursday with a fever and throwing up so we're hoping that's not what it is. In the mean time, I'm at my parents' house and will get lots of rest tomorrow and hope things improve for the rest of the last week of the school year!

Hope you're all doing well and had a great Memorial Day weekend.


Wednesday, May 21, 2008 10:40 PM EDT

Hi Everyone,

Boy, what a week I've had since my last update. The majority of the stuff has to do with the production of The Secret Garden for my advanced theater class this past weekend. First, one of the girls wasn't at the last rehearsal on Thursday night and the other kids said she had the flu (not specific with any details, just "the flu") so after the rehearsal I called her house to see how she was doing and found out that she ended up having appendicitis and had her appendix taken out and was in the hospital! They said it was possible she'd be up to being at the performance on Friday but it was very unclear. The back-up plan if she was unable to make the performance was that I would have to fill in for her with a script on stage as well as handling everything backstage. It turned out I had to do that because she wasn't feeling well enough to make it to the performance. I told her she was allowed to use the excuse of having her appendix out just once - she better not try it again! So this was already stressful but this isn't the end of the story. She was feeling better on Saturday and was able to make it to that performance. But it got to be 1:30pm (performance at 2pm, kids supposed to be there at 1pm) and the girl who was playing Mary - the lead - wasn't there yet and that wasn't like her. So I called her house - no answer. The director of the art center (Wendy - kind of my boss) went driving around looking for her after some of the kids said she has softball on Saturdays and maybe she got the time wrong. Wendy found her at her house and the message I got was that her whole family was really sick but she was okay and Wendy was bringing her to the art center. She got there and got ready but didn't look good. Apparently she wasn't okay, she has been throwing up all morning, and she said she almost didn't come but she put on a brave front and tried her best. Unfortunately it was short-lived and after 4 or 5 scenes she was crying backstage because she felt so sick so we took an early intermission, rallied in the kitchen, and figured out what to do. She was obviously really feeling awful so she decided she really needed to go home and Wendy took her home. I was about ready to cancel the rest of the performance but the kids jumped in and the girl who was assigned to be the understudy for Mary (but hadn't really learned the part) said she could jump in and play Mary with her script and the girl playing the Nurse said she could take the lines that the Doctor was supposed to say (the understudy was supposed to be the Doctor) and the play went on! Of course it wasn't the play it was supposed to be, but it went on and I'm very proud of the way the kids banded together and really rose to the challenge presented to them. And because neither performance was done the way it was supposed to be done - with the full cast - we're having an extra performance next Thursday with a rehearsal on Tuesday to refresh their memories. So it's not over yet! Hopefully everyone will be healthy and on their game for this final performance.

In other news, we had our art show at the preschool on Monday and everyone loved it - parents and kids alike. It was fun. Work is going pretty well and the school year is almost over - next Friday is the last day! Then I'm working the first two weeks of June at the camp there, then a week off with next to nothing scheduled, a few days in Maine, a little over a week in Oregon, and back in time for my summer jobs!

Health-wise I'm worn out and having some bad headaches but not crashing as much as I could be after the really busy few weeks I've had. I'm trying to catch up on sleep and keep up with basic things like eating and getting out to walk a little here and there. And trying to take some time to watch some DVDs I've had building up for a while. If only I could find my netflix DVDs! Oh well, in packing up my stuff I'm sure I'll find them. This week I'll be starting the IV Primaxin (switching from the IV Doxycycline) so hopefully that will go well. I saw Dr. H (pcp) yesterday and nothing much new to report there. Next week is my only week with no medical appointments for the next month. I go in for the esophageal manometry with Dr. R (GI) on June 3rd, an appointment with Dr. R on June 12th, and an appointment with Dr. B (Lyme) on the 16th.

Well, I need to get to bed. I'm overdue for posting some pictures so look for a picture-full update soon! Thanks so much for stopping by to see me and I hope you all are having a great week!

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Wednesday, May 14, 2008 8:42 PM EDT

Hi Everyone,

I'm finally getting around to writing a real update but it may be kind of short since I have a lot to try to get done tonight for the final rehearsal of "The Secret Garden" tomorrow. So I won't really go back and drag you through things that aren't really important. First I'll give a little health update. I'm wearing myself out but the end is in sight - after Monday I can breathe easier and rest and actually have my Tuesday and Thursday afternoons back and the end of school will be just around the corner. I can just focus on packing up and moving back home which will be nice since that's really not that stressful (easier moving out than moving in, I think). My labs are back to normal so I'm not sure what the deal was with my liver. I did take a little break from the IV doxy so maybe that made a difference, who knows. Just glad it's back to normal so I can breathe a little easier in starting the Primaxin next week once things calm down a bit. I was supposed to see Dr. H (PCP) yesterday but thankfully was able to reschedule for next Tuesday when I'll have a much easier schedule and not have to squeeze the appointment in between rushing from one place to another. I've been having more trouble eating - just not being hungry and feeling more nauseous whenever I eat almost anything. But I'm trying my best.

And kind of a big thing to report is that today for the first time I went into work at the preschool hooked up to my backpack. It was just getting to the point where it was necessary and it did seem to help me make it through the day easier. And the kids really weren't phased by it at all. They asked why I had a backpack on and instead of going through the whole explanation (like I do with my theater classes when they ask) I just told them, "Because I want to." And they really didn't ask anything more than that. I was surprised how few of them noticed the tubing from the backpack up under my shirt and the ones that did notice weren't really phased by it - they just accepted that it gives me medicine. Of course I had the few kids who ended up trying to hold on to the tubing without really noticing what they were doing but overall it all went well. And this is a big weight off my shoulders knowing that I can go into work while infusing and not have it be a big deal. Makes life quite a bit easier and less juggling to get all my infusions in!

Let's see...what else...well, I guess I've just been spending a lot of time working on the theater productions ("Jackie and the Beanstalk" went well last weekend) and the preschool art show, all of which will be over in less than a week. Tomorrow is the last rehearsal for "The Secret Garden" and then Friday and Saturday are the performances. All I have to say is the kids better be living with their scripts glued to their hands because yesterday's rehearsal was horrible with most of them having major issues with lines. So they better be better tomorrow and even better for Friday! This show will be a test of whether they can handle difficult plays. I want to do "Little Women" in the fall but if they can't handle this show, I just don't know if I should even attempt that. But I'll wait and see how they do during the performances and then make up my mind.

Okay, I need to go finish up a few things, finish up my infusions, and hopefully get to bed around 10pm. It's a goal anyway! I'll try not to let too much time go by before another update. Hopefully I'll have some pictures of the play this weekend to share and maybe some other pictures if the weather is nice. Thanks so much for stopping by to see me and I hope you all are having a great week so far!

---

Monday, May 12, 2008 10:40 PM EDT

"Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less."
--Marie Curie

Hi Everyone,

Sorry for the lack of updates in the last week. I have been so busy and stressed out and, frankly, exhausted that I can't take a minute to think let alone sit and write much of anything. My intermediate theater class had its performance of "Jackie and the Beanstalk" this past Friday and Saturday and did a good job. My advanced class is getting ready for their production of "The Secret Garden" this Friday and Saturday. My preschool class has its art show a week from today. And things are...well, difficult in some areas that I'm not going to get into right now. Maybe I'll feel I can talk about it later (at least I hope I can). Things at my apartment aren't great and I'm busy getting things packed up and starting to move out (thank goodness, although the moving process is going to be a pain).

Health-wise things are...well, I haven't really taken the time to figure out how things are health-wise. I'm seriously close to a meltdown but I'm keeping it at bay for a while at least. I'm just so exhausted, spending every free moment doing something for the plays or the art show and not really taking any time for myself. So I'm getting really worn out. And speaking of that I better clear my bed off and get some sleep. This is going to be a very long week. I'll post again later this week (or at least sometime soon) with some pictures, possibly including some of me with some beautiful face paint on that my friend (and fellow preschool teacher) Kat did when I helped her out by being a model for some pictures for her website. Forgive me if this update doesn't make as much sense as usual or isn't written as well as usual. I'm really tired.

Thanks so much for stopping by to see me. I hope you're all having a good week so far!




Monday, May 5, 2008 11:24 PM EDT

"Don’t walk behind me; I may not lead.
Don’t walk in front of me; I may not follow.
Just walk beside me and be my friend."
--Albert Camus

Hi Everyone,

It's late but I wanted to put up an update before the week got away from me. A lot has happened in the last week. I had an appointment with Dr. R (GI) on Thursday that went okay but I'm not entirely happy with the direction the treatment is taking - almost like he's changed his mind about what's going on and close to giving up on really fixing things. But I'll write more about that later if I feel like it. Then I had a very busy weekend with "Jackie and the Beanstalk" rehearsal on Saturday and many extra hours spent at the art center getting set pieces and props and costumes as ready as possible. Then I drove back up to my apartment Saturday night so I could head to Boston Common first thing on Sunday morning for the Walk for Hunger. The whole walk is 20 miles and I didn't expect to make it the whole way but I did make it to my goal of the major check point at 10.5 miles. I walked from Boston Common past my apartment and beyond by 3 miles - an accomplishment and one that I'm proud of but may be paying for for a while. I'm not as sore as I thought I might be but I'm definitely worn out.

With that said, it's way past my bedtime so I better get to sleep. This week and next week will be way too busy and stressful as production weeks always are for me with my theater classes but I'll make it through them somehow. And then it's so close to the end of the school year I can almost see that light at the end of the tunnel! And I just got my plane tickets to go out and visit my sister and brother-in-law at the end of June which will be so nice. But off to bed I go. Thanks so much for stopping in to see how I'm doing. I hope you're all having a great week so far!

---

Saturday, April 26, 2008 10:18 PM EDT

One of the greatest gifts
That life can give to anyone
Is the very special love that families share...
As years go by,
It's good to know that there will always be
Certain people in our lives who care.
For there are countless things
That only families have in common
And memories that no one else can make...
And these precious ties that bind a family together
Are bonds that time and distance cannot break.
How fortunate we are
When we have relatives to love us,
It makes the world a happy place to be...
Few gifts in life
Will last as long
Or touch the heart as deeply
As the very special gift
Of family.
--Craig S. Tunks

Hi everyone,

I don't know that I really have much to say but for some reason I felt a need to write something tonight. As school vacation comes to a close and I see the end of the year on the horizon (only 5 more weeks!) and I've had a few nice, quiet days at my aunt and uncle's house to relax, I've been thinking more about what I want to do and what I need to do to get there. So I'm writing my bit "to do" list so it's out there. Maybe not on paper but out there in the internet world. Because it's one thing to have our dreams and hopes and wishes and keep them to ourselves where it's somewhat safe if they never happen because at least no one else knew we wanted to do great things (maybe we just wanted to have the exact life we're living) and it's something completely different to put those big wishes out there into the universe in whatever way we may do it. This just happens to be the way I feel like doing it tonight.

So these are pretty concrete things, not the things like "I want to be happy" or "I want to make a difference". Of course both of those things are wishes of mine but they're not what I'm focusing on tonight.

My biggest and possibly most important wish is to be able to spend more time with my family over the summer - both the family I'll be living with and the rest of my family: my aunt and uncle, my sister and brother-in-law.

Then come the wishes that have to do with where I am physically in the world. I want to live in Maine, in this particular town (where we go on vacation for part of every summer) where I'll rent an apartment downtown in one of the brick buildings that overlook the river with the shops on the first floor. And I'll have a cat to keep me company and to wait in the window to see me walking home from work everyday. I want a simple life there. I was close to jumping into that life for the upcoming school year but decided to wait a year, partly for health reasons (to stay closer to my doctors) and partly for my theater classes and, to be perfectly honest, partly because I'm scared of making this dream a reality and finding that maybe it's not as great as it seems in my head. But I guess that's the danger of wishes coming true - they might be a disappointment but if we just accept things for what they are then how can anything really be a disappointment?

I want to be out in Oregon with my sister and brother-in-law when/if they have kids so I can see my nieces/nephews grow up and have them know their Aunt Annie. This is something I feel strongly about but I also feel torn because the rest of my family (for right now anyway) is on the east coast. But things can change quickly so who knows...

And then there are the other dreams that I just hope to do someday but maybe aren't what is most important in my life. I want to take a tap dancing class. I want to travel around Europe and go to Australia and many other places. I want to write a book - a memoir of my life (so far). I want to spend a summer on an island (Monhegan Island is the one that I have in mind, but really any small(ish) island would do). I'd love to learn how to paint. I want to drive across the country and see all the beautiful things there are to see. I'm not going to keep going because I could go on for a while about all the little things I have a desire to do, and some other big things that I don't think I can really write about right now. But I felt like I needed to get some of these things out in order to make them a possible reality. Some of this I know is coming from the "Day of Soulful Nurturing" I went to today but some of it is just coming from my muddled brain, overtired and not looking forward to going back to work on Monday. It's in these times when I'm wanting time to slow down a bit so I can enjoy it more that I tend to dream the most, create these wishful plans in my head and live in that world for a little while.

It's time for bed. If this doesn't make much sense to you or you think I've just gotten a little strange with all this, don't think much of it or read into it. It's there more for me (and the universe) than anything else. But maybe it will encourage you to think of your dreams and deepest wishes. And maybe it's about time I started making some real plans to make these dreams become reality!

---

Friday, April 25, 2008 5:15 PM EDT

"May every sunrise hold more promise, every moonrise hold more peace."
--Anonymous

Hi Everyone,

It's amazing - I'm back updating twice in one day! Things with Dr. B went well today. We're going to do what I figured we'd do. First of all instead of doing the IV Flagyl three times a day for three days every other week I'll be doing it twice a day for two weeks and then a four week break (confused?) because there's some evidence that one needs to do it for two weeks at a time to really get at the cyst form of the Lyme. (I tried to find a website with basic info on the cystic form but my tired brain couldn't find a good one.) I'll be stopping the IV Doxy because of the sun sensitivity it has (not good during the summer obviously) and I'll go back on IV Primaxin for a month. Only a month because of insurance coverage stuff, more than a month becomes very iffy as far as getting it covered well enough to be able to get. Then after the month I'll see Dr. B again and probably go to IV Claforan for the summer (not that the drug names mean much to the average reader). If you've been following my story for a while you might remember that Primaxin was kind of my magic drug - the one that brought me improvement when nothing else seemed to help. I'm hoping (and so are my doctors) that a month of it will be enough to give me a boost and then the Claforan (which I can get through my mail-order Rx program) will either bring more improvement or at the very least keep me stable. We shall see...

So that's pretty much all the important info from the appointment. I go back at the end of May (which will require a lot of driving but hopefully no missed time at work) and we'll go from there. Next Thursday I see Dr. R (GI) and then a few weeks after that I see Dr. H (PCP) so hopefully in the next month or so things will be under control! I just hope I can get to feeling better than I have been. Not that I've been really sick, but I want to see more improvement than I've gotten so far instead of just remaining stable. We all hope that someday I'll be able to stay stable without the antibiotics but in order for that to happen I have to be better than I am now and have a working immune system!

Thanks so much for stopping by to see me. And I hope you're all having a great week! I'll be back later this weekend or next week to post some pictures from this week.



Friday, April 25, 2008 8:15 AM EDT

"Don't walk behind me; I may not lead. Don't walk in front of me; I may not follow. Just walk beside me and be my friend."
--Albert Camus

Hi Everyone,

This won't be a full update, just a little one. I'm at my aunt and uncle's house and will be heading off in about an hour for my appointment with Dr. B. It's so nice to be here where it's quiet and beautiful and to have the chance to spend time with my aunt and uncle who are so supportive.

This week has been pretty crazy. I had some adventures trying to go into Boston on Monday (bad timing resulted in a long time on the T (subway) and not getting very far until I was just feeling so sick that I had to get off) as the Boston Marathon ended and the Red Sox game let out! Like I said, bad timing. But on Tuesday I managed it much better and got to spend a wonderful afternoon with Heather. I know I said this after we last got together at the end of October but it's amazing to be out in the "real world" (i.e. Faneuil Hall) with someone who has these same medical things going on and, even more amazing, has their own backpack with infusions going on and tubing coming out from under their shirt. It's something that I so wish could happen more often - seeing people that are like me and not being alone in getting weird looks and stares and giving me a chance to feel a little more "normal". I don't view all my stuff as that weird after such a long time of dealing with it (next month it will be 3 years since starting on the IV hydration and in July it will be 4 years since getting my port) but the rest of the world just doesn't know what to think of it. Anyway, I had a great time hanging out with Heather and her dad just walking around, window shopping, getting some dinner (we had the same thing we had back in October - chicken noodle soup and frozen yogurt), and just hanging out and chatting. I wish we could get together more often! But for now I'll just have to wait until her next visit to Boston.

Okay, other than that, I've run a lot of errands this week, had a somewhat disasterous Secret Garden rehearsal on Wednesday (in one hour of rehearsing we got through 9 pages because some of them just didn't know their lines for big parts of it - not good at this point), ran more errands, spent a few minutes at the beach (I have some pictures which I'll post once I'm home on my own computer), drove to Connecticut, and now I have to get ready to head off to Dr. B's in a little bit. I finally think I've found a good backpack to fit all my infusions (now that I have more hydration (2 liters instead of 1) I've had trouble fitting everything into my backpack) - a Starfish hydration pack that I found at the L.L.Bean outlet nearby. Seems to be perfect so I hope my search for a bigger backpack is over (although I'll probably always be on the lookout for others).

Okay, I'm off to get dressed. I'll try to post a quick update tonight with the details of my appointment with Dr. B (among other things we're going to be deciding which antibiotic to switch to for the summer) but if not tonight, then later this weekend. Thanks so much for stopping by to see me. I hope you're all having a great week!



Tuesday, April 22, 2008 11:15 PM EDT

"Only after the last tree has been cut down,
Only after the last river has been poisoned,
Only after the last fish has been caught,
Only then will you find that money cannot be eaten."
--Cree Indian Prophecy

Hi Everyone,

HAPPY EARTH DAY!!

Just posting with some pictures from Maine on Saturday. An update will come later this week about everything else going on.


At the cottage


Pemaquid Point Lighthouse






The waves


And me (I played around with the picture a little so it's not really that grainy - I made it look like it's on sandstone)

That's it tonight! Hope you're all doing well and thanks so much for stopping by to see me!

---

Tuesday, April 15, 2008 10:25 PM EDT

"When I find myself fading, I close my eyes and realize my friends are my energy."
--Anonymous

Hi Everyone,

Very quick update to let you know that I am now officially on vacation until Monday the 28th! So happy to have made it to April vacation in one piece and looking forward to the next week of sleeping in (well, what I consider sleeping in now isn't what I used to consider sleeping in, but it's still great!), taking some fun little trips, relaxing, watching some movies, and just having a nice break from work! I did end up scheduling a rehearsal for The Secret Garden on Wednesday afternoon but I think that will actually reduce my stress level rather than add to it because I'll just feel better about the state of things with the extra rehearsal. Other than that my week is looking pretty good. Tomorrow I'm going to Maine with my dad for the day (he's picking me up at 7am which means getting up around 6am - yikes, I better get to bed SOON), Sunday is church and Annie rehearsal, Monday I'm either getting together with Heather or just vegging out with nothing to do, Tuesday I will possibly go to a training thing at the YMCA in the morning, then a meeting with my (hopefully) future roommates and current co-workers in the afternoon and choir rehearsal in the evening, Wednesday is The Secret Garden rehearsal in the afternoon, Thursday I'll drive to my aunt and uncle's in Connecticut, Friday I go to see Dr. B (Lyme doctor), Saturday is "A Day of Soulful Nurturing" with my aunt, Sunday I relax a bit at my aunt and uncle's and then head back home. Seems like a lot when I write it all out but it will be much more relaxed than my week when I'm working and rushing around from place to place all the time!

I just got back from a wonderful dinner with Kat, one of the other teachers in my classroom - her birthday is on Sunday so this was a birthday dinner at a wonderful sushi restaurant. I don't like fish but I love vegetable sushi and they have a great selection at this place. Really good! But I'm very full and will probably have a stomachache tomorrow, too, but it will be worth it. Now I need to get myself to bed (not bothering with my evening infusions since I'm too tired - I'm not even going to bother accessing Winnie (my port - haven't called it that in quite a while) until the morning because I'm too tired to feel competent doing that. So it's off to bed with me! I'll post this weekend with some pictures from my trip to Maine tomorrow!

Thanks so much for stopping by to see me. I hope you've all had a great week!



Tuesday, April 15, 2008 10:25 PM EDT

Just had to come on and ask for good energy and thoughts for my wonderful friend, Lexie who has an MRI tomorrow. We're hoping for STABLE! So think some very good stable thoughts for her tomorrow! I'll get on here and do an update sometime later this week. Oh, and Happy Tax Day (a little sarcasm there, I'm not a fan of tax day).

Saturday, April 12, 2008 8:57 PM EDT

"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."
--Oriah Mountain Dreamer

Hi Everyone,

I'm having a bit of a rough time these last few days. It's like I've reached that point where I know I can't keep pushing and pushing and my body is starting to show me that it can't handle everything without a break. This happens sometimes and I feel worse, and exhausted, and just feel like I'm dragging myself around (and sometimes my liver isn't happy as reflected by my labs this week). I just have to nip this in the bud and stop it from becoming a full crash. I just wish I had more time to rest! This past week seemed really long and tiring, maybe because I didn't have Wednesday afternoon off to rest and recoup like I usually do. Instead it was the appointment with Dr. H and then the meeting at the Y, both good and important things but still things to be out doing instead of home resting or catching up on things. Then Thursday I had my usual long day with the preschool and theater classes with dinner at home afterwards (I did actually get an early start back up to my apartment which was good). And on Friday I had preschool with a lot of cleaning afterwards (I didn't leave the preschool until about 2:30, but on Fridays I'm technically done (with the kids anyway) at 1pm), a quick break for a little snack and snower, and then my Friday swim lessons. Only one more Friday of lessons left! Although I do have to admit I'm going to miss my Friday kids, even if I don't know that they'd be the same next session. I took myself out to dinner last night just to reward myself (in a way) for making it through the long week. I just went to the diner I like down the street but it was nice, nice to just sit and have someone else make food for me and enjoy being out of my apartment (where one of my roommates happened to be having a get together - I hate when I come home and am surprised by a lot of people there). And on Thursday night I also had to be making phone calls to reschedule the extra Secret Garden rehearsal that was originally scheduled for Sunday afternoon but had to be changed to Saturday because of a band thing that half the class would be at (which was later rescheduled for sometime in May but that didn't happen until yesterday afternoon so it was too late to schedule it back to Sunday). So instead of having a nice Saturday off to catch up on errands, go around collecting props and costume pieces, and just having some time to relax I had to squeeze in a lot of errands (mainly Salvation Army and Savers this morning to get as many costume pieces as possible) and get down to the art center for rehearsal from 3-5pm (and have time beforehand to organize things). Then I ran more errands afterwards and got some nice clothes (I don't seem to always fit into my current size of jeans because my belly doesn't seem to always be the same size based on how well my stomach is working so I got a new pair of jeans that fit and a few spring-y things - a skirt, a pair of capris, and a pair of shorts). So needless to say it's been a very long and tiring day. Partway through my errands this afternoon while I was in Target I felt like I just had to get out of there and needed to lie down. From time to time I've been having dizzy spells where I just kind of feel like things spin but they haven't been too bad, they just surprise me when they happen.

So, my body is exhausted and believe it or not I'm going to head to bed right after I finish writing this (hoping to be in bed by 9pm). Tomorrow I have to be at church at 9:30am for choir rehearsal and then more errands probably and then Annie rehearsal from 4-6, a quick dinner (or maybe not depending on how my stomach is doing), and back up to my apartment to prepare for the last week of school before vacation! Yipee! I can't wait for that week off even though I'll still have things to do (including at least one or two mornings of training at the Y which I hope will help me feel more confident in my swimming instruction). It will just be good to have a break from work, be able to sleep in, be able to do some serious work getting together the rest of the props, costumes, and set pieces for the plays (can't believe I'm currently involved in 4 plays, maybe that's too many at one time!), and maybe have a little time to do some fun things! I know I'll make it through this week, it will just be long and I'll have to do a little more work on balancing things.

Health-wise things don't seem too bad. My labs the past few weeks have shown some elevated liver numbers but when I saw Dr. H on Wednesday she said she's not concerned about them right now. When I saw her I also found out that my vitamin D levels are great now after being on high dose vitamin D for the past 3 months so now I can go from taking it twice a week to just once every other week (yay! less pills!). As I said before we're also trying to figure out what to do treatment-wise for the summer since I can't stay on the doxy while I'll be out in the sun so much. Unfortunately one of the strongest possibilities is one that is infused three times a day which is harder to manage with my busy schedule and days spent (de-accessed) at the beach. But the good news is that I can get the vials of it from my mail order prescription pharmacy so I know the drug itself will be covered and not cost too much to get! But I'll have to see what Dr. B says when I see him in 2 weeks (at the end of April vacation week).

Okay, I'm off to hook up my hydration and head to bed. I'm so exhausted that I just wish I could curl up here on the couch and go to sleep but my bed (even if it's an air mattress) will be more comfortable. Looking forward to being able to get 10 hours of sleep! Yay! And I'm hoping to be feeling a little better tomorrow. Thanks so much for stopping by to see me. I hope you've all had a good week and have a good weekend!

---

Wednesday, April 9, 2008 10:23 PM EDT

"It is good to have an end to journey toward,
but it is the journey that matters in the end."
--Ursula K. LeGuin

Hi Everyone,

Just a really quick update to say I recovered from my flu (although not entirely) and only had to take one day off of work (unpaid unfortunately). I didn't have any more fevers after Sunday night but the weekend was pretty rocky, having to push through feeling awful and do what I had to do. Things have been very busy with work, theater classes, swimming lessons, Annie rehearsals, extra theater stuff, and of course sleeping and eating and those basics that sometimes just seem to get in the way of everything else! I saw Dr. H (PCP) today and we're trying to come up with a good game plan for the summer since I'll have to switch antibiotics because the one I'm on has sun sensitivity as a side effect (not great when I spend at least a few days a week babysitting at the beach!) but we have some ideas. I'll discuss them with Dr. B in 2 weeks. And there was a staff meeting at the YMCA about the next session of swim lessons. I made the decision to continue teaching but to drop the Friday afternoons and just teach on Mondays which I think is a good compromise between continuing with so much and dropping it completely. So now I'll have part of my weekend back! Yay!

Okay, I need to sign off and head to bed (it's getting too late and I'm getting into the bad habit of staying up quite a bit later than I should). I hope you're all doing well and having a good week. And thanks so much for stopping by to see how I'm doing!

---

Monday, March 31, 2008 7:57 PM EDT

"Come to the edge", 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,

Well, I'm sick. This time it went from what seemed like a cold to the flu. I had been fighting off the cold for a little while and then on Thursday night I started having chills and those telltale aches and pains but I was hoping it was just because I was overtired (which I was and I'm sure didn't help anything). I didn't feel great on Friday but managed alright with work and swim lessons. Then on Saturday morning I thought to take my temperature and found I had a fever, surprise surprise. I still went to a CPR training class with two people from work (required for the preschool), drove home, and crashed for the afternoon. I tried going out to see a play with a friend from the art center but the play was sold out so I just crashed some more. And yesterday was church (where I was a greeter, sang with the choir, and started teaching the spring session of Religious Education - yikes!), crashed for a while at home, went to Annie rehearsal, and then crashed for the rest of the day. Because of the flu and the fever and everything I stayed home sick from work today and I'm feeling better overall - less chills, less aches, my appetite is coming back a little bit but I still have a bad headache, stuffy nose, horrible coughing fits, exhausted, etc. I'm planning on going back to work tomorrow. I'm still running a bit of a fever but it's low-grade and I don't really feel feverish (most of the time) so I should be able to manage work. So, needless to say I'm struggling a bit health-wise right now. It seems like this whole school year has been one cold after another, I've never really been cold-free, which I know is to be expected when starting out working with little kids so closely and I know having a compromised immune system just makes it worse but I really didn't think it would be this bad! And I'm planning on doing it again next year! I just hope we can get my immune system in a little better shape so I'm not constantly sick for another year.

Last week was alright. I had my evaluation at work on Friday which went well and I'm definitely staying on for another year but hopefully with a slightly different schedule (8am-1pm M-F instead of different hours each day) which will allow me to either have some afternoons off (when I don't have theater classes) or find something else to do in the afternoons and have a little more flexibility with what I can do. I've decided to stay on with the swim lessons until the end of the school year at least. I'm finding I do enjoy them, it's just the rushing around and crazy hours that I don't like so maybe I'll be able to handle it better next year with a different schedule at the preschool. This past week I also found out that my theater student that I had been working with one-on-one did really well at her audition and an agency in Los Angelos wants to represent her! Very exciting!

Well, I'm feeling pretty crummy now after getting myself together and driving back up to my apartment. It was nice being at home and having my mom there to make me something to eat when I just couldn't handle getting out from under the covers and just being in such a comforting place but it is nice to be back in my own bed now (sleeping on an air mattress, while not entirely uncomfortable, is definitely not as comfortable as a real bed). I'm going to finish my doxy infusion, hook up my fluids, give my boss a quick call to let her know I'll be at work tomorrow, take some NyQuil, and call it a night. Thanks so much for stopping by to see me! I hope you all had a great Monday!

---

Wednesday, March 26, 2008 9:57 PM EDT

"They may forget what you said, but they will never forget how you made them feel."
--Carl W. Buechner

Hi Everyone,

This is going to be very short. I meant to update sooner but just didn't manage to. So...HAPPY SPRING! HAPPY EASTER! I'm managing alright most of the time but struggling a bit this week just to make it through. My labs are pretty good but some of my liver numbers are a little elevated so we'll keep an eye on those (they tend to fluctuate and as long as they don't go higher it's probably okay). And I'm starting to make plans for the fall with some good changes (apartment-related) and some hopefully good things that will be staying the same (job-related). I'll write more about all that later when I have a chance and as things are becoming more definite.

I'm really enjoying the spring days we're having from time to time. Today after work I went to a workshop with some people from work (I needed to attend a special needs workshop to meet my requirements for the preschool) and had a good time with Melissa (the lead teacher in my classroom) who has become a good friend this year. I probably see her more than anyone else in my life after all! (And I will be living with her (and possibly Kat, the other teacher in my classroom) in the fall although nothing is written in stone yet.) The workshop was good and it's always nice to get to spend time with friends outside of work. It made me so excited and happy to know that in the fall I'll actually be living with people I like and can hang out with and enjoy being around (not that the people I live with right now are bad, they're just not good matches for me). And when I got back to my apartment it was still bright and sunny out and a warm day so I went for a nice walk. Just being out in the sun and fresh air was so nice (especially after not being able to go out all day - it was picture day so there was no outdoor time knowing the kids would get messy if they went outside). The walk wasn't anything out of the ordinary - just around the block and to Walgreens to pick up a few things (they had a great sale on supplements so I stocked up on some of those) and back home - but it was nice being out there in the spring sun and warmth. And as I was walking back home I went by an ice cream place and when I got to the corner and turned around there was one of my preschoolers with her dad and younger sister popping out of the ice cream place to say hi to me. Apparently she saw me go by and just wanted to say hi which was really nice.

And that brings up a...I guess it's a concern of mine. When I'm out there for a walk or running errands in the neighborhood/community (in other words, outside of work) and I'm hooked up to infusions with my little backpack on, I have concerns about running in to "my kids" in case they notice the tubing and ask questions. I've already had kids ask about my port when they catch a glimpse of the dressing or the needle and I never go into it in detail (why bother when it's really not necessary?) but it's harder to just brush it off if they were to see tubing coming out from under my shirt. So far it hasn't happened, but living less than a mile from the preschool with most of the kids living pretty close by it's bound to happen at some point. I know how I deal with it with my theater classes with kids that are close to the age of my preschoolers (although I don't have any kids in kindergarten this term, I do have one preschooler in my youngest class and I had kindergarteners in the fall) but somehow being in a different setting makes it easier to know what to do. And it probably helps that at the art center (where I teach my theater classes) I feel more comfortable and in charge with more flexibility about what I do and talk about with the kids. I guess in some ways I'm afraid of what the directors of the preschool would think about me having a conversation with one of our kids about how I get special medicine through a needle in my chest. This is all just turning into ramblings, not what I intended it to be when I started writing but it's getting late and I'm getting very tired so I guess it's not too surprising.

Perhaps I'll write more about this later. I need to call it a night. I'm so glad it's almost Friday! But this weekend won't be that restful with a CPR class on Saturday morning, probably going to see a play on Saturday night, church on Sunday (choir is singing, I'm a greeter, and I'm starting to teach religious education for the spring session - yikes!), and Annie rehearsal in the afternoon. Hopefully I'll have a little time in there to rest and get some things done! Thanks so much for stopping by to see me and I hope you're having a good week!

---

Sunday, March 16, 2008 9:35 PM EDT

After awhile you learn
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,

This will be a really quick update because I'm falling asleep here and really have to go to bed asap (I'm staying at home ("home home") tonight because I was too tired to drive back up to my apartment so I have to get up at 5am to head back up by about 5:30am - ugh). This past week has been really tiring and I'm definitely feeling the affects of being so busy. Too busy as I'm realizing. I haven't been getting enough sleep and it's all catching up with me. Just a few more weeks until April vacation at least and at that point I can cut back or eliminate the swimming lessons if I decide it's too much (I'm sure I'll at least be cutting back - probably to only 3 classes on Mondays and keeping the 3 classes on Fridays but we'll see, maybe just Mondays with 6 classes would be good, allow for a better schedule of being de-accessed). So a quick re-capping of the week. Well, first of all, after reminding all of you to turn your clocks ahead last Saturday night, I forgot and that resulted in my not making it to church but that was okay - I had a more relaxed morning. The week was full of preschool, swimming lessons, theater classes, choir rehearsal, a nice breakfast out at the diner down the street yesterday (yummy french toast!), resting when I had the time, and just general crazy busyness. I managed to get some laundry done at my apartment for which I'm pretty proud (I haven't done much laundry at my apartment, mostly I bring it home with me just because it's easier to do it at home). Health-wise I'm run-down, tired, having headaches, my knees are bothering me, my stomach hasn't been great - I guess just overall I'm not at my best. But my labs this week were good. I had an appointment with Dr. H (PCP) on Thursday which went well. We're talking about switching around how I do my IV Flagyl, changing it to 2 full weeks on and 4 weeks off instead of just doing it 3 days every other week. She says there's some evidence that it's needed for at least 2 weeks at a time to be affective against the cyst form of the Lyme bacteria. But I'd be able to just do it twice a day instead of three times which would make it easier to tolerate. I'll talk to Dr. B about it next month and go from there. We're not changing much, but Dr. H (as many other people) is concerned I'm overdoing it.

I think a lot of the time I work so hard trying to convince everyone, including myself, that I can handle everything I want to do (or need to do in some cases). I work so hard to act the part, to push through and manage with everything, and it's catching up to me. I'm realizing just how much I'm struggling and how hard this year has been. I'm fighting to keep up with everything and I know I'll be able to do it just because I'm so stubborn. But even stubbornness won't help me if I crash and burn. So I'm going to be working on some things and trying to figure out how to balance things better and be good to myself while still doing what I want/need to do. And right now I need to go to bed to take care of myself (I really should have gone to bed a while ago but I can't go back and change it). Oh, and I won't go into it now but I'm having issues with my roommates (again) but I know I'm only going to be there until the end of May when I'll move back home until at least the beginning of August. I'm going to be finding an apartment with at least one of the other teachers from the preschool (who will probably not still be working at that preschool in the fall) which I'm really looking forward to. Imagine living with someone you actually get along with and like hanging out with!?! A novel idea! I can't wait and I just have to tough it out and make it through the next few months living with these people I really am having trouble sharing the space with right now.

I hope you all had a great weekend! I can't believe a week from today is Easter, it's so early and seems to throw me off a bit but I'm looking forward to having a (somewhat) long weekend with no preschool on Friday (although I still have swim lessons).

---

Saturday, March 8, 2008 5:35 PM CST

"Healing may not be so much about getting better as about
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,

Sorry for the lack of updates this past week. I always have the intention of updating more frequently but I am so exhausted when I finally get home that there is no energy left for much of anything. A lot of the time I simply feel like I am doing too much and I have a feeling I'm going to have to seriously think about whether I can continue with the swimming lessons after this session is over in the middle of April. I'd like to continue with it because it's fun and something different and it's nice getting into the pool (even if I'm not really doing a whole lot of real swimming) so maybe just cutting back on the number of classes or spreading them out over more days would be good. I'll just wait and see how the next month goes and make some kind of decision when it comes time.

So, let's see...first of all - Happy March! I can't believe it's March already but I guess February really is a short month, especially considering there's a week of school vacation in there. This month will be long - only one day off of school (Good Friday) and I still have to teach swimming lessons that day so I really don't have any days off (other than Saturdays). The past week has been pretty busy and it started with a busy weekend (which I'm now having trouble remembering). Oh, now it's coming back to me. On Saturday I had a great time. I went out to breakfast and to the Garment District with Kat and Melissa, the two other teachers in my classroom. It was a great time and breakfast was so good - I had blueberry and banana pancakes which had real slices of banana in them and some excellent turkey sausage. And I found two skirts (well, a skirt and a skort) and a cute cardigan sweater at the Garment District for cheap so that was great, too, and it was just fun to spend some time with friends from work outside of the preschool. After that I rushed off to see Peter Pan at the Wheelock Family Theater with my advisor (well, she's not my advisor anymore since I'm a graduate) and then out to dinner with her. It was a lot of fun, Peter Pan was great, and dinner was really good. We went to a Cambodian/French restaurant near Wheelock that I'd been to once before but I think I enjoyed it more this time since I've become a less picky eater since I was there last (probably about 7 years ago). So that was a very busy day and I was still fighting off the two colds and had very little voice and a really sore throat. On Sunday I decided to attempt to sing with the choir at church and I managed pretty well for not having much voice but I definitely wasn't able to enjoy music Sunday as much as I would have liked. We had a lasagna lunch after the service to raise money for the choir and music which was good.

And this past work week was busy, too. Long day on Monday with preschool and swimming lessons. Long day on Tuesday with preschool and theater class (I opted out of choir rehearsal and came back up to my apartment early so I could get some rest). Not-so-long day on Wednesday with just preschool until 3pm and then errands and such in the afternoon. Really long day on Thursday with an appointment downtown with Dr. R (GI) first thing followed by two theater classes, "theater tutoring" with one student, a quick dinner with my sister (eaten at the desk at the art center), and then taking tickets for and seeing the "grown-up" play (that's how I refer to it to my theater kids to differentiate between their plays and the ones that are put on by and for adults more than kids) which was good but by the time it was over I was totally exhausted. I stayed at home ("home home") and got up early yesterday (Friday) morning to drive back up and go to work at the preschool. I also had an appointment in the afternoon and finished up the week with my last three swimming classes and opted to go out for dinner since I didn't want to fix anything for myself but felt I needed to eat more of a real meal than I could throw together. So I went down to the diner down the street and had a great turkey burger but ate too much and felt sick afterwards. Sometimes it's hard to know if it's worth it when I know I'm going to feel sick but I guess that's a question without a real answer. Today I've been doing some serious resting (but can resting really be casual? hmm...) and I've been in my pajamas in bed all day which has been nice. I'm going to pop a movie in when I finish this and probably make some dinner in a little while (I have some veggies and turkey so I'm thinking I'll make a pasta salad thing that I like to make and eat - mmm...I just have to work on feeling less exhausted and nauseous before I go for making and eating dinner). I've opted to not go home (again, "home home") tonight as I had been planning since my brother is home for the weekend (although I hear everyone is a little under the weather) and there's something at church tonight that I wanted to go to but I'm just too tired and it's been pouring rain all day so I think I'm just better off staying home in bed and resting some more.

To back up a little bit to my appointment with Dr. R on Thursday - this was a long overdue appointment (I was supposed to see him 4-6 weeks after my botox injections at the end of October - oops!) and basically at this point we're trying some new things to try to help with my stomach and mainly with my nausea. What we're going to try first is Periactin, a medication that's mainly used for allergies but has also been found to relax the stomach and allow for better food intake. What I'm unsure about with this is whether I'll just end up having more food sitting in my stomach for a long time if my stomach isn't emptying at a normal rate but Dr. R says that won't happen (not sure why, but I'll just hope for the best!). If this doesn't help then we move on to trying low-doses of SSRIs (antidepressants) and see if the nausea might be because my nerves are either overly sensative to the sensations or sending the wrong messages to my brain and making me more nauseous than I should be. So we have a few things to try and right now I go back to see him at the beginning of May but if this medication seems to be working I can push that appointment into the summer. We also very briefly talked about the possibility of needing some other kind of intervention to help with my reflux if we can't help it by working on my stomach. But we'll cross that bridge when (and if) we get to it. Overall it was a pretty good appointment.

Health-wise I'm hanging on but I worry that a crash may not be too far off if I keep going like I'm going. I just have to force myself to rest more when I have the chance and get to bed early. It's hard, but if I don't take care of myself it's not going to be good. I'm having more headaches which aren't much fun and they bring extra nausea with them but with the help of IV Zofran and oral phenergan I'm managing to keep it relatively well controlled most of the time. My legs have been bothering me with quite a bit of pain in my knees and thigh muscles but that's not really too new, just worse the past few weeks than usual. My voice is back which is good but I'm still fighting off the ends of these colds so I'm coughing a bit, sniffling and blowing my nose a bit, and just feeling run down. At least my throat doesn't hurt much anymore, that was pretty bad for a while and swallowing was really painful. I don't know what my labs were this past week (one person is out of the office at my infusion company where I get my lab results faxed from and I think she's the one who faxes them so they're not making their way to me) but I see Dr. H (PCP) on Thursday so if anything is off I'll find out then and we'll figure things out.

Alright, well I'm going to put on a movie, curl up in bed (maybe with a cup of tea if I feel like going downstairs to make one), and enjoy this rainy day! I have another busy week next week but I'll manage. I'll try to update during the week if I have the time and energy! Thanks so much for stopping by to see me and I hope you're all having a good weekend. And don't forget to turn your clocks ahead tonight! (I hate losing an hour.)

---

Friday, February 29, 2008 11:18 PM EST

"Happiness can be found, even in the darkest times,
if one only remembers to turn on the light."
--Albus Dumbledore

Hi Everyone,

I apologize for the lack of updates for the past week. I've started writing updates numerous times but only get a few sentences into it (if that far) before I either decide I don't have the energy or get distracted doing something else. Let's hope that doesn't happen this time. I'll keep it short.

First off, I not only have the cold I've been fighting off for the past 3 weeks but now I have another cold on top of it. I was okay on Tuesday night and then woke up Wednesday morning with a bad sore throat which is usually the first sign for me that something is brewing. And then I realized that I also didn't have much of a voice! I have to say having no voice and working with kids don't mix very well. Kids don't tend to really respond to croaking or whispering when they're busy having fun and being generally crazy. So on Wednesday I tried to take it easy and after work I ran a few errands and then rested. Yesterday (Thursday) I had work and then two theater classes plus the one-on-one tutoring with one of my theater students so it made for a long day and a lot of talking so my voice wasn't doing too well by the end of the day. And this morning it was almost completely gone and really didn't get any better for the rest of the day. The hardest part was teaching three swimming lessons (more on those in a minute) with no voice but I managed alright, just had to struggle a bit to talk loud enough for them to hear me. So now I'm trying to rest my voice as much as possible, drink a lot of fluids (including lots of tea with honey), and almost continuously sucking on some kind of cough drop or hard candy to keep my throat lubricated. All in all it's not fun and I guess I never realized how much I rely on being able to talk loudly and clearly until I suddenly couldn't!

Okay, backtracking a bit - my appointment with Dr. B on Friday was good. He's happy with how things are and isn't changing anything for now. It's so nice to go to an appointment with him and not have a new thing to figure out or a new wacky something-or-other to try to balance out. The only thing that he's having me do is take vitamin C (kind of a mega-dose) and taurine before going in the pool to teach the swimming lessons which I completely forgot to do on Monday but remembered to do today. Getting to see my aunt and uncle was really nice. And the day of skiing with my brother was a lot of fun and we're definitely going to go skiing/snowboarding again soon, probably to a different place since the one we went to was kind of small but good for us since neither of us had been skiing or snowboarding in quite a while. Neither of us had any bad falls, just some small spills, so it was a pretty successful afternoon on the slopes. And it was great spending the day with my brother. I miss him and I know he's been a little lonely at school as he tries to settle in.

Let's see, that brings us to Monday - my very long day. Going back to work after being on vacation for a week was kind of rough and I think all of us felt the same way. But we settled back in and I was glad to see the kids again. I left work at the preschool at 3pm and headed over to the YMCA for my first afternoon of teaching swimming lessons. I had six half-hour classes split up with three, then a 45 minute break, then 3 more. They went alright but I really felt like I didn't know what I was doing. But now I'm slowly getting the hang of it and it's getting easier. By the time I got home after stopping by WholeFoods for some milk and a few other things I was really exhausted. Mondays are going to be interesting. Tuesday was a long day, too, with work, my advanced theater class, and choir rehearsal. And Wednesday was when this second cold hit so that wasn't a fun day but it was my short day of work (it's interesting how now 7:45am - 3:00pm is a short day!) so it wasn't too bad. Yesterday (Thursday) was pretty long with preschool, two theater classes, and my theater student followed by a quick dinner at home and then heading back up to my apartment. And today was a long day and I really wasn't feeling great for most of the day. Sometime in the late morning a headache started setting in that Frova (my migraine medicine) doesn't seem to be helping so now I'm just hoping I'll feel better when I wake up tomorrow.

This weekend will be busy but a lot of fun. Tomorrow (Saturday) morning I'm meeting up with the two other teachers from my classroom for breakfast at a supposedly wonderful place in Somerville (just outside Boston) and to do a little browsing in the garment district. Then I'm meeting Maya, my advisor from Wheelock, to go see Peter Pan at the Wheelock Family Theater and then go out to dinner. So I have a full Saturday with lots of fun stuff! And Sunday is Music Sunday at church and the choir is singing (although it doesn't look like I'll be singing - I can barely talk and if I were to try singing I would most likely hinder the choir more than help it) followed by a luncheon to raise money for the choir/music at church and then the plan is to work with my theater student but it looks like I forgot about the play going on at the art center this weekend so we're going to have to reschedule or something (wish I'd realized this sooner).

Well, it's late and I need to get to sleep! I was close to going to bed at 9pm but got distracted with one thing or another. Now I'm really exhausted and just need a good night's sleep. I hope I wake up feeling a little better, at least without a headache! Thanks so much for stopping by to see me and I hope you've all had a great week!

---

Friday, February 22, 2008 8:46 AM EST

"We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.
Through the unknown, unremembered gate
When the last of earth left to discover
Is that which was the beginning;
At the source of the longest river
The voice of the hidden waterfall
And the children in the apple-tree
Not known, because not looked for
But heard, half-heard, in the stillness
Between two waves of the sea.
Quick now, here, now, always—
A condition of complete simplicity
(Costing not less than everything)
And all shall be well and
All manner of thing shall be well
When the tongues of flames are in-folded
Into the crowned knot of fire
And the fire and the rose are one."

--T.S. Eliot, "Little Gidding"
from Four Quartets

Hi Everyone,

I just wanted to do a quick update since it's been a while since my last one (time certainly has been slipping by quickly this week). I'm doing alright overall. Still fighting off this stupid cold but having the week to rest has been good. My car is out of comission right now awaiting a part to fix the rear control arm that basically holds the wheel onto the axel (not good when it's broken) so I'm using my dad's car which is really nice but I miss my little green frog (what I call my car). So this week has been somewhat occupied with talking to the garage, figuring out what was wrong, trying to find the part, etc. - extra stress that I really didn't need much. But this week has been nice - a nice break from work and an opportunity to sleep in and do a lot of nothing when I have the chance. But I've still had things to do.

On Monday I got together with my wonderful friend Alice (Lexie's mom) which was really nice - it's been such a long time since we got to sit down for a little while and just chat. And then on Tuesday I had a little session with the theater kid I'm kind of tutoring, getting her ready for a big audition in March. And on Wednesday I had to pop up to my apartment and back and get ready for going away for the weekend. Yesterday I drove to my aunt and uncle's house in CT and today (Friday) I head to NY to see Dr. B (Lyme doctor) which should be a good, relatively easy appointment. Then back to my aunt and uncle's for tonight and tomorrow (Saturday) I'm heading up to Amherst to my brother's apartment and then we're going skiing! I'm looking forward to that and having some time to spend with my brother. Hopefully the skiing won't completely wipe me out! But I have Sunday to recover before heading back to work on Monday and starting up my new job of teaching swimming lessons that afternoon. I can't believe vacation is almost over!

Health-wise things are okay except for this cold and everything that it's doing to me. My stomach is a little bit better and I'm able to eat a bit more but still not back to my "normal". And I've been having some more headaches but I blame the cold for those, too. So hopefully once I get over this cold I'll start feeling better overall. But, really, even with the cold I've been doing alright.

I'll update again tonight when I get back from my appointment with Dr. B. I don't have this week's lab results yet to see if they've improved from last week (I guess I didn't post about those but my white cells were low (to be expected with a viral infection), and my liver is apparently not happy since my AST and ALT numbers went up a bit, but hopefully it's just all due to the cold). Thanks so much for stopping by to see me! I hope you've all had a great week.

---

Friday, February 15, 2008 9:32 PM EST

"Nothing happens by itself... it all will come your way, once you understand that you have to make it come your way, by your own exertions."
--Ben Stein

Hi Everyone,

This week has seemed very long, probably due to a combination of me being sick with this stupid cold/flu and knowing that February vacation would be here when the week was over which always seems to make time tick by even slower. But of course once vacation actually gets here it will just go flying by. So now I'm on break from work until a week from Monday and I fully intend to take advantage of the vacation. I don't have any major plans - sleeping, watching movies, I'm going home from Sunday until Tuesday night or Wednesday morning, then back up here until Thursday, then to CT to my aunt and uncle's before heading to NY to see Dr. B on Friday, and skiing with my brother to finish off the week. I'm sure it will go flying by but it will be so nice if I just focus on the moment and getting some things done, like getting my car fixed (it goes into the shop on Tuesday) and getting the plays for my theater classes squared away.

Today was pajama day in my preschool classroom which was a lot of fun (and my kind of special day!) and we had a diner set up with one of the teachers making pancakes for the kids. It was a lot of fun and I got to be the waittress and serve the kids the pancakes, syrup, and drinks (chocolate milk seemed to be the most popular). And getting to be at work in my PJs was great. And then this afternoon I went and shadowed three swimming lessons at the YMCA where I'll be teaching swimming lessons right after school vacation is over. It's exciting but a little scary since this isn't something I've done before and it will require me to juggle my infusions around to allow for me to be de-accessed on Mondays and Fridays. More than anything else I just hope I can handle the extra hours spent working. I'll have very long Mondays - going from 7:45am when I go to work at the preschool pretty much right up until 7:30pm when I'll finish with my last swim lesson, but of course I have some breaks in there to eat and take a little rest. It will be interesting seeing how things go as I adjust to the new schedule. One thing I know for sure is I have to be strict about getting to bed early - 9pm is my bedtime now on work nights so we'll see how well I do with that!

Health-wise I'm not doing so great due to the cold/flu (I can't really figure out which it is because I have all the achiness that would make me think it's the flu but no fever (thank goodness) and lots of congestion and coughing). It also seems to be affecting my GI system so that I have very little appetite and significantly more nausea. I don't know if it's from something on top of the cold or if it's related to the cold, but whatever it is it's not making for much fun. I've been sticking mostly to oyster crackers/saltines, gingersnaps, toast, mushy bananas, sorbet, and occasionally something more abitious but nothing too great. I need to take it easy over the next few days and hope I start feeling better soon!

On a more contemplative note, it's amazing to me sometimes the things that have come across my path in the past year and the way these things have changed my direction, offered me new opportunities, and created an ever changing new life. I have learned more than anything else that it's important to leave myself open to new possibilities that I may not have originally thought of. Like this job teaching swimming lessons - I would never have thought to apply for something like this but I went out there and posted on Craigslist looking for child care opportunities a few afternoons a week (for extra income, not because I need to be spending my little bit of free time doing more work!) and got a reply from the YMCA swim director asking if I might be interested in a job there. And now I'm doing this new thing that is new and exciting and could lead to more other opportunities - who knows! Maybe this will lead to another place to teach theater classes or maybe it will just lead to a few sessions of teaching swimming lessons and then I'll move on. But the fact that I didn't just shut off to the possibility of doing this thing because it's different is important. I'm trying so hard not to make my mind up about things before I've really allowed myself to be open to all the options. It's certainly made for an interesting year so far and who knows what else lies in store for me!

With that, I will say goodnight and switch over my infusions to my hydration and head to bed. I hope you've all had a good week and have a great weekend! Thanks so much for stopping by to see me. And Happy (belated) Valentine's Day!

---

Wednesday, February 13, 2008 8:24 PM EST

"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,

Just a quick update tonight. This cold is really getting the better of me. The worst of it is the cough which has been pretty bad and makes me short of breath at times. My stomach also doesn't seem to be handling it all that well (or else hasn't recovered from whatever the stomach problem was over the weekend when I threw up) - I'm having more nausea that is thankfully somewhat controllable with zofran and I don't have much of an appetite so for the most part I've been snacking on oyster crackers/saltines and ginger snaps and trying to get in some soup and other things when I feel up to it. At least I'm able to drink a bit better now than at the beginning of the week when I was hardly drinking anything but a few cups of tea through the day. So I'm not happy about this cold but I'm trying to ride it out. It will be interesting to see what my labwork looks like this week (I drew them today).

Otherwise the week has been going alright. I was sent home from work at 1pm on Monday to get some rest since I wasn't feeling well at all (and must have appeared to be really worn out). And then that afternoon I had a meeting at the YMCA with the swim director about getting a job there teaching some swim lessons. It looks like it will work out well and I'm looking forward to doing something different (and the free membership to the Y is a great bonus). So I go in on Friday to shadow some classes and then start after February vacation! Yesterday was a long day with preschool, theater class, and choir rehearsal and then driving back up in the beginning of a snow storm. But we had a 2-hour delay this morning which was nice. It poured rain all day and I had to go out a few times, ending up very wet but I accomplished what I needed to and I'm home warm and dry now. Tomorrow will be a pretty long day - preschool, two theater classes, a quick break and then a one-on-one meeting with one of my theater kids to work on a monologue (she has a big audition coming up that is pretty exciting), maybe a stop at home and then back up here for the last day of preschool before February Vacation! I'm so looking forward to the break.

Well, it's early but I'm exhausted and need to go to bed so I'm going to turn in. I think my body is struggling to deal with this cold but hopefully some extra sleep will help me get through the rest of the week! Please continue to keep one of my preschoolers in your thoughts - he's recovering but still in the hospital and probably will be there for a little while longer. Thanks so much for stopping by to see me and I hope you're all having a great week!

---

Sunday, February 10, 2008 5:41 PM EST

"Have compassion for everyone you meet, even if they don't want it.
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,

Well, I'm sick. Bleh. I have a cold, hacking cough, I'm exhausted and spent most of today resting/sleeping on the couch (I'm at my parents' house), and last night I was up in the middle of the night throwing up all the nothingness that was in my stomach. It seems like I go through bouts of vomiting every few months, it happens once (in the middle of the night always) and then my stomach is more sensitive for a while and eventually gets back to my "normal". So today I had to skip church (I was croaking pretty badly when I got up and as much as I wanted to be there for Jazz Sunday I knew it wouldn't be much fun to be coughing and unable to really sing). I spent the day on the couch, sleeping on and off, watching TV on and off, sipping at some Coke and nibbling on saltines and ginger snaps. And I just have to say I'm so grateful now to have my IV zofran. I think that helped a lot in the middle of the night as I was sitting on the bathroom floor sure I was going to keep dry heaving and throwing up stomach acid (sorry if that's too gross for some of you, I'm so tired that my mental filter isn't working to full capacity). I wish I had more sick days because I'd call in sick to work tomorrow but unless I'm violently ill I'll still be dragging myself to work. It just might be a difficult day. And I've made it a longer day than usual, I have to go over to the YMCA after work, but let me explain that a little bit.

I posted an ad on Craigslist looking for afternoon/evening childcare opportunities and got an e-mail from a woman at the YMCA asking if I might be interested in teaching children's swim lessons (after being trained). The schedule works great with mine (I can work Monday and Friday afternoons and Wednesdays, too, if I want to) and while the pay isn't amazingly good, I'll get a free Y membership, too, which is perfect since I've been wanting to join a gym for a while! So it seems like a great opportunity. The only issue I'll have is trying to schedule my de-accessed days and infusions around the teaching (since I can't teach swim lessons while my port is accessed) but I'll manage that alright, especially if it's just Mondays and Fridays. So I have a meeting with the director tomorrow afternoon and I'll watch a few swim lessons and then we'll decide whether it seems right for me or not. That will make for a long day tomorrow but I think it will be fine.

Other than that, let's see what's going on. I found a bigger mini fridge (also on Craigslist - it's a great site and has been wonderful for me) and my brother went with me to pick it up yesterday and bring it up to my apartment. I don't know how I would have gotten it up the two flights of stairs to my bedroom without him. I got it plugged in and turned on so it will be ready for me to put everything in it when I get back up there today and be able to unplug and defrost and get rid of my smaller fridge (I'll possibly give it to my little sister if my parents are okay with that - mostly because of the extra electricity it uses). My new bigger one turns out to be exactly the same one that my brother has which is neat. It will take a little while to get everything changed over and moved around but hopefully I'll be up to doing that tonight. I'll have to see when I get back up there. Now I'm packing up my stuff and finishing up watching a movie on demand that is really good. It's called The Doctor and if you ever get a chance to watch it I recommend it, especially to people who have dealt with doctors a lot.

Okay, I'm off to finish packing up (I don't have that much stuff, mostly laundry to get folded and put together). I have about a half hour left of the movie so I'll probably be heading out soon. I hope you've all had a good weekend and have a great upcoming week! I'm really looking forward to having my February school vacation next week and being able to rest and relax more. Thanks so much for stopping by to see me!

---

Friday, February 8, 2008 10:17 PM EST

"Never believe that a few caring people can't change the world. For, indeed, that's all who ever have."
--Margaret Mead

Hi Everyone,

Just a quick update tonight. I had a great dinner tonight with all the teachers from the preschool - the directors took us all out to a really nice dinner and I have leftovers to last me at least a few more meals! It was great to get to spend some time with all of them, although about half of us are sick with colds of various varieties (I'm one of them). Apparently sharing is something we take very seriously in preschool, I just wish it didn't include sharing germs! So I'm fighting off a cold, in the early stages of it after waking up with a bad sore throat this morning with a cough that doesn't sound great and my head has been hurting pretty badly off and on. So I'll try to rest up over the weekend. Just one more week of school until February vacation! Yay!

In health-related news, I got my first shipment of the new bags of hydration (which are now being referred to as TPN by my infusion company because they include the saline, amino acids, and vitamins) and I have to say the bags are really big and I'm scrambling to get a bigger mini fridge to hold them all (I don't keep any medical supplies in the main fridge in my apartment because...well, I don't feel comfortable doing that and don't really trust that they'll stay as separated from food as I'd like them to be). I have my mini fridge stocked full of them and it only holds about a week's worth - I'm getting two weeks at a time so I have the rest of them still in the cooler box they were shipped in with lots of ice packs. I believe I have found a fridge through craigslist that I can pick up tomorrow that will be big enough to hold the "TPN" (it's weird referring to it as that) and hopefully also a few drinks. And that will mean I can give my current mini fridge (which is pretty small) to my younger sister who I'm sure will appreciate it. Anyway, hopefully it will work out or else I may end up going to buy a new bigger mini fridge this weekend because I really don't know what I'll do otherwise! I'm going from not having to refrigerate more than the bags of amino acids and syringes that hold the vitamins/minerals that I add to the hydration to now having to refrigerate 14 two liter bags at a time! Oh well, it will all get figured out.

That's it tonight. I'm exhausted after a very long and tiring week (not to mention the cold my body is struggling to deal with). I'm going to curl up in bed while I finish my evening Flagyl infusion and then go to bed with the rest of my "TPN". Before I go, though, I'd like to ask for you to keep one of my preschoolers in your thoughts. He is currently in the PICU with some kind of pretty serious infection and, while he's expected to be fine and out of the hospital within the next week, I'm sure it is very hard on his family and a very difficult thing for him to be going through. I won't give more details to keep the confidentiality but please send some healing thoughts, good energy, prayers, whatever you do to this little boy.

Thanks so much for stopping by to see me. I hope you've all had a great week and hope you have a wonderful weekend!



Wednesday, February 6, 2008 8:15 PM EST

"The winter's cold
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,

Well, today was a very busy day at work. It was "Beach Day" which meant one classroom was set up as the beach with sand on the floor, one room (our room) was set up with pools for the kids to go swimming in, there was a room for "fishing", and it all entailed a lot of set-up and clean up and a lot of craziness with all the kids together for much of the day. So I'm very worn out and had to go to bed for a few hours after work and anticipate an early bedtime tonight (hopefully). But it was fun and the kids had a blast. The rest of the past week has been busy with my theater classes getting underway and lots of other things to juggle. On Saturday I got out for a long walk/jog and ended up going almost 5 1/2 miles! I walked to Dr. H's office (about 2 1/2 miles away) and around in a loop back home. It was nice but my knees don't really like it since they have been pretty painful this week (although the rain we've been having may be part of the problem).

Health-wise things are a little rocky with a little more nausea and just being worn out but I'm managing alright. I think the fatigue is at least partially due to having to juggle everything with the theater classes starting back up again which is a lot to handle. It was nice having my Tuesday and Thursday afternoons free but I do really enjoy the classes, I just wish I could eliminate the hour plus drive each way! I've been working with my infusion company to figure out the extra hydration and fortunately they've been able to combine my hydration and amino acids and vitamins all together into one 2 liter bag which will reduce my overall number of infusions everyday, but of course the bag will be bigger and heavier (and unfortunately I can't start the bag before going to bed and let it run half or more of it overnight to make it lighter for during the day since I'll have to start it when I get home from work and finish it up overnight). I'll get my first shipment of the 2 liter bags on Friday so hopefully it will work out well. My labs from last week were good so things are remaining stable there and I'm taking everything else in stride.

Well, I'm not feeling great (probably from the tiring day at work today) so I'm going to forget about trying to have dinner (it seems like a losing battle at this point) and go curl up in bed with a movie or something until my amino acid infusion is done and I can go to bed. Thanks so much for stopping by to see me. I hope you're all having a good week so far!

---

Wednesday, January 30, 2008 9:34 PM EST

"Have you been half asleep? And have you heard voices?
I've heard them calling my name.
Is this the sweet sound that calls the young sailors?
The voice might be one and the same
I've heard it too many times to ignore it
It's something that I'm s'posed to be...
Someday we'll find it, the rainbow connection,
The lovers, the dreamers, and me."
--Kermit the Frog

Hi Everyone,

I can't believe that January is almost over! It feels like the month few by but at the same time New Year's seems like such a long time ago. It's certainly been a busy month, although I'm just now getting back into my full schedule with my theater classes just starting up. The past few days have been alright overall but very busy with a lot of rushing around. Yesterday (Tuesday) I actually had a good morning - got up with more than an hour before I had to leave for work so I had a "real" breakfast (oatmeal) and got to just kind of relax for a while. After work I stopped at my apartment quickly and got my stuff together for my theater class before heading over for my appointment with Dr. H (PCP). The appointment was good and more or less uneventful. My thyroid test was okay so for now no thyroid medication but we'll keep an eye on it and probably re-test every few months. We talked about the added hydration and since it seems to be helping me I'll be continuing with the 2 liters per day (and I'm hoping to be able to get 2 liter bags instead of having to switch between liter bags and arrange my sleep schedule around it somewhat). And the other thing we discussed came up when we were talking about my hypoglycemia and how that seems to be. I told her about an "episode" (for lack of a better word) that I had last week and have had before where I get really shakey, dizzy, nauseous, and just feeling awful after having to use a spurt of energy for something like carrying a box up the stairs (which I have to do every 2 weeks with my heavy saline/IV antibiotic shipments). When this happened last week I had to lie down for a while after carrying the box upstairs, I tested my blood sugar and it was okay, my blood pressure was relatively okay, but I was feeling really sick in a way that would make me think I was either hypoglycemic or hypotensive. Anyway, the biggest possibility that Dr. H brought up is something with my mitochondria. I have had this suspicion in the back of my mind for quite a while now that I could have some kind of underlying mitochondrial disease that could explain a lot. So with this conversation with Dr. H, I think I'm more compelled to go forward to see a specialist and get further testing. Just what I need, more doctor's appointments to try to schedule around my already busy schedule, but I feel it is important for me to do. Oh, and today I got the shipment of IV Zofran from my mail-order prescription pharmacy but can't use it quite yet because I need to get syringes for it from my infusion company. It's weird - the IV Zofran (well, generic zofran) actually has a lower co-pay and supposedly costs less overall than oral (generic) zofran. Doesn't make sense to me but I'm not about to question it if I can get it in IV form! I just hope it proves to be a little better for me than the oral, and at least provide faster relief when I need it.

And now it's almost 2 hours after I started this update and after getting distracted by various things, I need to call it a night so this is ending up being a short update. I'm looking forward to a later morning tomorrow morning (Tuesdays and Thursdays I don't have to be at work until 8:30am versus 7:45am the other days) and the second meeting of my intermediate and beginner theater classes in the afternoon. I was really enjoying not having to drive so much but I do enjoy teaching the classes so it's worth it (and the extra income is pretty much necessary). I'm still struggling with choosing what to do for the fall but that's a whole other post that maybe I'll explore more at some point, but not tonight.

Thanks so much for stopping by to see me and I hope you're all having a good week!

---

Monday, January 28, 2008 8:42 PM EST

"You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island of opportunities and look toward another land. There is no other land; there is no other life but this."
--Henry David Thoreau

Hi Everyone,

I can't believe it's been almost two weeks since my last update (okay, more like a week and a half). I think of updating pretty often but never seem to manage to do it. And it doesn't help that my computer has been giving me issues lately. Anyway, the past week and a half has been busy but okay overall. I had a good weekend visiting a friend in Connecticut the weekend before last for the long weekend. We didn't do much but it's nice to just have the chance to hang out and do nothing but have company doing nothing (if that makes sense). It's just nice being with someone who understands everything and there's no explanation required for being foggy or tired or nauseous. And then on Tuesday I got together with Elizabeth, the former intern minister from my church, which was really nice and we'd been trying to get together since I moved up here so it was long overdue. And then on Saturday I went home to help move my brother in to his apartment on campus at UMass Amherst where he's starting as a transfer student (he completed his Associate's Degree at a community college in May). It was nice to see where he's going to be and getting to help settle him in and say goodbye but it was kind of sad to leave him off there and know I won't see him for at least a few weeks, probably longer. My brother and I have been really close basically since I got sick which was when I went back to homeschooling (not because I was sick, I made the decision before that happened but it was amazingly lucky that I was homeschooled since I would have missed a ton of school that year otherwise). We've definitely been through our ups and downs but now that we're both adults (although I use the word loosely) I feel like we appreciate each other more and it's definitely going to be strange having him living so far away. And I'm sure it will take some time for him to settle in and adjust to being so far from home but I hope that he's happy there and feels at home soon!

Health-wise things are mostly okay but still dealing with worse headaches and having some trouble getting to sleep as well as various other issues but nothing too bad. Doing the extra liter of saline everyday has been helpful overall, I think, although I hate the increased time hooked up to infusions (basically from the time I get out of work until I get up and go to work the next morning I'm hooked up to fluids and various other things). But when it comes down to it, if it's something that will help me feel better and keep me more functional I'll do what I have to do. I got my vitamin D prescription filled and started on that twice a week (just one dose so far). My labs have all been fine and tomorrow when I see Dr. H (PCP) again I'll get the results of the thyroid tests I had done last week which will help determine if I need to go on some thyroid medication and what kind might be the most helpful. Not much else to report there.

Well, I guess that's it for me tonight. I'm going to have a little something to eat and then curl up until my infusions are done and I can switch over my hydration and go to bed. I hope you're all having a good week!

---

Thursday, January 17, 2008 10:05 PM EST

"It is by going down into the abyss that we recover the treasures of life.
Where you stumble, there lies your treasure."
--Joseph Campbell

Hi Everyone,

Just a quick update on my appointment with Dr. H (PCP) today. I got the results of my vitamin D level and it's very low so I'll be starting on prescription vitamin D when I can get the script filled. It will be interesting to see if it makes a difference in how I'm feeling and if so, in what way. My CD-57 (a specific type of natural killer cell that has been linked to Lyme disease infection) is also really low and really not much better than it was 3 years ago when I had it tested last - not what I was hoping for but with the length of my infection it's not entirely surprising how low it was. Nothing to do for that but wait and hope continued treatment helps get the infection lower and bring the number up. Something else on the testing I had done also shows borderline iron deficiency even with the 30mg I take daily but at least it's not bad enough to do anything about right now, just shows I have to be on the iron or else I'd be in pretty bad shape. For the next little while we're also increasing my hydration to 2 liters a day to see if it helps with GI stuff, autonomic nervous system problems, energy, and various other things. While I do hope it will help with these things, I'm not entirely sure how I'll fit the extra liter into my schedule on the days when I work until 3pm but I'll figure it out one way or another. And I may have to increase my neurontin dose if my headaches continue to be increased and I keep having more trouble sleeping but I'd really like to avoid that because I think it's responsible for making me more tired in the mid-morning. Oh, and I'll be getting my thyroid re-tested when I do my next labs because it has been low and I'll probably end up going (back) on some kind of thyroid med when I see Dr. H next in a few weeks.

I think that's about it from the appointment. I'll update again soon and post some pictures of the snow from the other day. Thanks so much for stopping by to see me and I hope you're all having a good week (and tomorrow is Friday! Yay!).

---

Wednesday, January 16, 2008 6:49 PM EST

Life is an opportunity, benefit from it.
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(ish) update tonight since it's been a little while since my last one. I keep having the intention of updating sooner but I get busy doing something else or I'm just too tired or I sit down to write and don't really know what to say. That last one is probably the most frustrating - brain fog at work I guess. I have words floating around in my head but somehow when I try to write them down they get all messed up and I can't figure out how to say what I want to say. But I'm writing other things sometimes when that happens so at least words are coming out in one way or another. So let's see, what has been going on since my last update on Saturday. I made it home for church on Sunday and then went out to dinner with my family to celebrate my younger sister's 18th birthday (which was officially Monday). I can't believe she's 18 now. She's the baby of the family and it's just strange to think that we're all so grown up! I'm sure it's strange for my parents, too. Monday was also my older sister's birthday (don't know if that's come up before but my two sisters were born on the same day 11 years apart) so we all talked to her on Sunday night. She's 29 now - almost the big 3 - 0! I didn't end up leaving to come back up to my apartment until after 10pm but it was okay because around 9pm I got the call from one of the preschool directors that Newton made an early decision to close schools for Monday because of the snowstorm moving in! A great call to get! So I slept in on Monday, stayed in my pajamas for most of the day, went for a little walk (in the snow, yes), went out to dinner at the diner down the street, and just had a relaxed day which was so nice. I could use a few more of those! But of course everyday can't be a snow day (and those few snow days or delays we have make me happy to be a teacher - definitely not a perk other professions get!) and it was back to work yesterday but it was a short day for me - out of work at a little after 1pm. Then we had a music workshop at the preschool in the evening so after being home for a few hours it was back to work I went and I was really tired by the time I got home but the workshop was fun. It was also interesting to go there hooked up to my IVs (necessary given my IV schedule). Some people asked what the noise was (my pumps are a bit noisy) but other than that they didn't seem weirded out by it, or at least they didn't say anything that made me think they were. They also didn't ask any questions about it but that's okay, I think they were just trying not to make me feel self-conscious about it. I was glad to have the opportunity to have them see what it's like when I'm hooked up to my IVs so that they know a bit more about what my life is like when I leave work. And today was a long day. I had trouble getting myself up this morning (I haven't been good about going to bed early lately - shame on me) and was half-asleep for most of the day. I'm starting to think that one of my morning meds makes me tired because about halfway through the morning I just feel so foggy and exhausted and just like I need to curl up and take a nap (and that I could fall asleep at any moment if I had the chance). But I managed and went for a walk this afternoon down to the WholeFoods to get a few groceries. I'm exhausted now and debating whether making some food (and eating it) is worth the energy and very possible nausea and pain as a result of eating it. I'll give it a little while longer and probably curl up and watch a little tv, maybe sleep a little bit, and then figure out what I want to do about that.

Health-wise things are okay - not fantastic but really I can't complain much about things. I'm mostly just really tired, more tired than I had been, but it's okay, I can handle it if at least part of it is the kind of tired you get from being busy with things. I've been having more headaches lately, too, and my reflux has been pretty bad but I can partially blame myself for eating things I shouldn't (like minestrone soup for lunch today that was tomato-based - big mistake). I did finally call and make an appointment to see Dr. R (GI) who I was supposed to see back in November but at least I finally did make the call, although the appointment isn't for a month and it will require me to figure out something with my Thursday theater classes (it's for a Thursday afternoon) but I'll manage with it somehow. And today I was having some bad neuropathic pain in my left foot but it seems better now. Anyway, overall things are okay.

The rest of the week looks busy but I have a long weekend to look forward to (Monday holiday). Tomorrow after work I have an appointment with Dr. H (PCP) and I have a bunch of things to talk to her about. Then I think my brother is coming up to have dinner with me but I have to talk to him about that to confirm. And on Friday after work I'll get my stuff together and head to Connecticut to spend the weekend with a friend there which will be really nice. My theater classes start next week so I have to gear up for those, too, and get out a mailing to all my theater kids (just a matter of addressing and stuffing envelopes and getting to the post office - which I'll hopefully manage to do tomorrow). And I'll also be doing some one-on-one work with one of my older theater kids because she was chosen from a whole big group of kids to go to a two-day session with casting agents from big companies (Disney, Nickelodeon, etc.) and she has to have a monologue to perform for that. It's really cool that she's doing it but a little nervewracking for me to feel the pressure to help prepare her, and it's kind of bringing up my insecurities when it comes to teaching acting (that I'm not that sure I know what I'm doing even after having been invovled in it in one way or another for 17 years!) but I'm sure it will be okay and give me something fun to work on. But for now I have to find a monologue at least so I'll be spending some time looking through my books of monologues and trying to find a few to give to her to consider.

Alright, I'm going to go take some meds, rest for a bit, and hopefully get a few things done before I completely crash tonight. I hope you're all having a good week!

---

Saturday, January 12, 2008 7:09 PM EST

"All in all I fare the same
Wishing on an airplane
As calling stars by name
A lonely song of freedom rings
In hope of someone listening and
So I send my feeble flare
Through the silent arctic air
Heading anywhere
Until at last I've finally found
A place to lay my anchor down."
--Anna Nalick

Hi Everyone,

I keep trying to start writing something and get distracted by something. But now I'm finally getting to sit down and write. It's only been a few days since my last update so things haven't changed much since then but I am dealing with some kind of intense things and struggling a bit with them. I don't want to go into detail on here because I'm never quite sure who will read this but suffice it to say it's not really fun but very necessary.

This past week was kind of a long one - maybe it felt long because it was the first full week back at work after the winter break (only one more full week before the long weekend). It was a relief to get to Friday but it turned out to be a very chaotic day at work with just a lot of things happening to cause changes in plans. I guess it just goes to show how important flexibility is, especially when working with kids. In the end, though, it was an okay day despite the rain pouring down and the chaos at work. Life has a tendency to throw chaos at us at weird times, maybe to remind us not to get too stuck in our ways and leave room for changes when necessary (and sometimes when not entirely necessary but needed). Last night I had trouble getting to bed and ended up staying up until after midnight which used to be a normal occurrance but since starting my "real" job I'm usually in bed long before then. So it was kind of a rough night and I let myself sleep in a bit this morning - until 9am when one of my pumps woke me up with the French ambulance beeping (if you've ever had a CADD Prizm pump you know what I'm talking about) because the battery was dead. Of course it wasn't sleeping straight through until 9am, I had to wake up at 6am to hook up my morning dose of Flagyl, and then again an hour later to switch to the morning Doxycycline dose. Thankfully I got back to sleep pretty easily after waking up each time. It's frustrating to have to juggle the schedule of IV stuff and try to get enough sleep in around it all. And it's hard to know that the people I'm around on a daily basis now know little or nothing about this whole aspect of my life. The other teachers at work don't realize that when I leave the preschool I come home and I'm basically hooked up to various IVs until I get up and leave for work the next morning. My roommates don't really know anything about my health, which is not too surprising considering I see them so rarely and when I do see them it's for very short periods of time so we don't really talk. But when it comes right down to it, I don't really mind that much that none of them really know what's going on. I mean, in some ways it's uncomfortable to feel like there's a whole aspect of my life that I really don't talk about but after 10 years of dealing with it and talking about it a lot and it being such a central part of my life, in some ways it's freeing to not have it be a big thing in some aspects of my life. I don't really know what I'm trying to say here but maybe it will make sense to some of you. I'm feeling like I'm rambling here so I'll cut of this train of thought.

Today has been a pretty good day and I feel like I've accomplished a lot. This morning I rested a while, stayed in bed and watched some DVDs, and then I got up and went out for a walk/jog - yes, that's right, I actually managed to jog for short spurts and in total I walked/jogged (maybe I should make a new word? wogged?) about 3 1/2 miles which is quite an accomplishment for me. It felt so good to be able to do so much but of course I was pretty wiped out by the time I made it back home. But I didn't rest (maybe I should have 'cause now I'm feeling pretty zonked and foggy), instead I did some cleaning in my room, reorganized some of my IV supplies, put up a little shelf I hadn't had a chance to put up yet (or just wasn't sure where I was going to put it), unpacked some pictures and things to put on the shelf, and finally took a shower and accessed my port to get hooked up to my amino acids (which are running now). It was quite a day but it's nice to feel more and more like I'm settling into my room here. I'm enjoying being here, I like spending the weekends here and having time to just relax and go out and do things if I want to. I was considering going out for lunch or dinner at the diner down the street that I've come to really like (they serve breakfast all day which is really nice) but seeing as it's 7:00pm now I don't think that's going to happen. So now I need to go make something to eat and probably watch a movie or something tonight (I'm being pretty good at watching my Netflix movies quickly for a change!). Tomorrow I'll get up and go to church and then my family is going out to dinner for my sister's birthday (which is actually Monday). She's turning 18 which is strange - she's the baby of the family so I guess we're all pretty grown up! I'm toying with the idea of getting up early to go out for a walk before going to church but I'm not sure that will happen. It seems when it comes right down to it sleep wins out over a lot of other things. Oh, and my labs this week were good (better than last week). I find I'm always waiting for things to suddenly go downhill and get nervous about my lab results each week but I guess I should just get it through my head that things are stable right now and that I should stop worrying!

Thanks so much for stopping by to see me. I hope you're all having a great weekend! And I'd love it if you took a minute to sign my guestbook.

---

Wednesday, January 9, 2008 8:07 PM EST

Refuse to fall down.
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,

Sorry for the lapse in updates but a week between them isn't too bad. This past week has been...long I guess is the word that comes to mind. I can't believe that just one week ago today was the first day back at work after vacation - it seems like such a long time ago. But at least now that we're into the second half of the year it's more evenly broken up - just one more full week after this week and then a long weekend, then just three full weeks before February vacation, and then eight weeks until April vacation, and then we're in the home stretch with just five more weeks until the preschool is done for the year! Okay, it's still a long time, but at least there are more breaks in the second half of the year than the first half which will be nice. Work is going well but it's been tiring. I can say one thing, I've realized that I actually end up being MORE tired (or at least a different kind of tired) when I'm on a wacky sleep schedule like I was when I was on winter break - going to bed whenever and sleeping until whenever - than I am when I'm on a more regular schedule of going to bed around 10pm and getting up by 7am. Ideally I'd be getting to bed closer to 9pm, and I do some nights, but usually even if I'm in bed at 9pm I'm not asleep until at least 10pm as it seems to take me about an hour to wind down and for the meds to kick in that help me sleep (perhaps I should try taking them earlier?) and I'd love to get up a little earlier to have time to have a cup of coffee before heading to work instead of grabbing some on the way (or not).

I'm happy to say that I've been walking to work most days which is really nice and I love being able to do it. I've only drive twice since going back to work - last Wednesday and today - and in addition to walking to work I've also been walking other places and just walking around. I've gotten in the habit (well, I don't know if it's a habit yet, it's only happened two or three times so far) of walking about a mile down the road to the Whole Foods Market to do a little grocery shopping and then walking back with a backpack of food. It's nice to be able to do that, both because of where I live and because physically I feel up to it. It's been wonderful discovering that the extra ankle support of my snow boots or ankle braces makes a big difference when it comes to walking so that I'm able to do more of it!

Health-wise I'm doing alright. I've been having a number of headaches recently but they're not too bad, I'm tired (which isn't anything new), having aches and pains and stuff like that, but overall I'm pretty stable. I've had a cough for a little over a week which isn't horrible but it's the kind of cough where sometimes I'll go to take a deep breath and there's rasping and rattling in my lungs and I just have to start coughing and it doesn't sound great. But I'm not coughing all the time or anything so it could be worse. My labs last week were okay - everything in the normal range at least so nothing to really be worried about. I'll just wait and see how they are this week (it's always a kind of watch and wait thing and I'm never confident enough to feel like they'll stay normal but I guess I should realize they're pretty stable lately and that I can stop worrying!). My stomach hasn't been great for the past week or so and got worse on Monday. In the morning I started having abdominal pains that would come in waves every 5 or 10 minutes and were pretty bad but they let up for a while in the afternoon only to come back that evening and keep me up off and on throughout the night. So I've been more careful about what I've been eating and I've been sticking to mostly liquids (having a stockpile of Ensure and other liquid nutrition drinks comes in handy and tonight I'm enjoying a tasty smoothie from Fresh City) and hopefully it will get better if I just take it easy for a while.

One of the areas of my life right now that isn't great but that I'm kind of learning to deal with is my living situation. My apartment itself is nice, I love the location I'm in (being able to walk most places is so great), but I'm having issues with my roommates. I don't see them that often, I don't really know them very well, and there seem to be some issues that maybe are just me being weird about boundaries but things have happened like other people putting their toothbrushes in my toothbrush cup which is just not cool with me. Maybe if they knew more about my health situation and the fact that I have (to some degree anyway) a compromised immune system they'd be more aware of things like that, but I just don't want to make things a big deal. Other things have happened like my food disappearing when I know I didn't eat it and again I don't want to make it a big deal but it bothers me. Anyway, I'm not sure why I'm mentioning it here, just to mention it I guess since it's on my mind. I'm trying to decide what I'm going to do in the fall but I know one thing for sure - I need to live on my own without roommates. That unfortunately means that I don't have the option to stay in this area since I could really never afford to get an apartment here on my own but maybe that's a good thing as it will push me to really make a change. The most likely thing to happen right now is a move up to Maine and most of the time I really know that's what I want to do but then every once in a while I waver and have doubts. But the other teachers at the preschool are urging me to just go for it since this is the time to go live wherever I want to and if I wait I may never get to do it. So it'll be interesting to see what I decide in the end.

Okay, I'm going to watch a little TV while my infusions finish running and then hopefully head to bed early. Just two more days 'til the weekend and tomorrow and Friday are short days for me (get out of work at or close to 1pm) so hopefully I'll get some extra rest in and maybe some nice walks if the weather holds up. We've had some rain but unusually warm temperatures which is good because the snow that we've had for weeks and weeks has finally mostly melted away (it was getting pretty gross and annoying piled up on the sides of the road and blocking parts of the sidewalk) but bad because my autonomic nervous system doesn't like big swings in temperature and was making that known last night when I was running a low-grade fever off and on. Today it's been okay but it's best for me to avoid too much time outside when the temperature is going all over the place (I actually prefer to take walks when it's colder out).

Thanks so much for stopping by to see me. I hope you're all having a great week!

---

Wednesday, January 2, 2008 10:11 PM EST

Year's end is neither an end nor a beginning but a going on,
with all the wisdom that experience can instill in us.
~Hal Borland

Hi Everyone,



Okay, so I'm a day late on that happy new year (well, almost 2 days late) but it's still the new year, right? This will be short as I'm heading to bed in hopes of getting back on a semi-decent sleep schedule (vacation was wonderful but brutal on my somewhat well established sleep pattern). Vacation is over which is good and bad. I loved having the time to just hang around, rest, sleep, knit, watch some TV and movies, and just hang out at home and do all the things I wish I could do more often! But being back at work means something to focus on, something to get up for each day which is kind of cool, and getting to see the kids again, although today I seriously wanted some of them to just disappear (they seemed a bit wound up after the long vacation, not what I was expecting). Health-wise I'm doing alright. I'm really tired (go figure, tired out from all the resting I did) and having headaches and more dysautonomia issues but I'm getting my IV fluids overnight so hopefully that will be a bit better in the morning. My labs last week were good - everything in normal range so I'm happy!

Alright, I'm off to bed now. I'm tired and I have a worsening headache so I hope it will go away by the time I wake up. I'm so glad this is a short week (one day down, two more to go until the weekend) and there isn't that much time until the next long weekend and then a week-long school vacation and before I know it I'm sure it will be the end of the year and I'll be asking where all the time went! But for now, sleep is in my near future. I hope you all had a wonderful new year celebration (mine consisted of watching movies all night and flipping to watch the last 15 seconds of the ball drop with my mom and dad - not too exciting but it was fine) and that you're having a good week so far. And if you're in the northeast (or elsewhere in the country that's getting a chill) stay warm!

---

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