|
||||||||||||
Click here to go back to the main page.
Friday, November 24, 2006 10:06 PM CST
Dear Friends,
It is with a heavy heart and moist eyes, that i must say, the most AMAZING Caitlin, went to Heaven on Tuesday. She WON a long battle, and her faith carried her so far. Caitlin, you are in my heart forever and ever and I know you are dancing around and playing with Ollie up in Heaven. I love you so much. You said once before, that if you could just stengthen one person's faith in God and life, you'd be overjoyed - well, I know you totally suceeded in strengthening my faith in God, and I know you have done the same to everyone who has come in contact with you! I also know that you would want me to let everyone know that you got many miracles along the way, your faith never wavered, and God's faithfulness never wavered! You're a survivor, Caitlin!
I have so much to say, but for now, i'll leave it at this: You are my hero Caitlin and you always have been and always will be. While i miss you terribly, and i just knew you'd pop up and be totally healed, i know that i can't miss you now because you are forever alive, forever in my heart, and you are TOTALLY HEALED! I'm glad you are not hurting anymore, and now you can do whatever you want! you were always an angel on earth and now you are a true angel! Fly, caity, fly!
Love,
Tara
PS-if you could leave some messages in Caitlin's guestbook for her family (and her..you know she can read them now better than ever!).
PPS- I am sorry that I did not post sooner. I wanted to give Caitlin's family the opportunity to let those close to their family know, before I posted online.
Tuesday, November 14, 2006 6:50 PM CST Aloha, again, Faithful Followers!
Monday, November 13, 2006 10:44 PM CST Hello Faithful Followers, Tuesday, November 7, 2006 8:37 PM CST Hello, Everyone! :)
Thursday, October 26, 2006 5:10 PM CDT
Wednesday, September 27, 2006 2:34 PM CDT First order of buisness...please stop right now and say a prayer for the amazing Tara (visit/tarabara). She was admitted to "th spa" and is having surgery tomorrow. Tara I love you and am sending you tons of prayers and hugs! Also say a prayer for Jake (la/jakeowen). His family got some bad news, and it is breaking my heart. I absolutely love this kid. Also Rachel (mn/rachelhansen) and Sam (visit/samanthacrowell) could use some prayers too. And Sarah (nc/sarahsmith) is having scans tomorrow. What a list....
Monday, September 25, 2006 2:45 PM CDT i'm not up to typing much but i just wanted to say hi, and let y'all know i'm ok. i know i owe a few people emails, specifically ashley and tara, hopefully i'll get to that tomorrow. also tomorrow around 11am, dr. fishbach is coming to the house to meet me and have the "big discussion" about what he can do. say a prayer for all the kids in need, there are lots lately. i hope everyone is doing well. hugs. Friday, September 22, 2006 1:24 PM CDT The World Needs Some Good News Wednesday, September 20, 2006 12:26 AM CDT Today is so bright and sunny and thankfully I am headache free right now and I am just enjoying having the curtains open and looking outside. Dad moved the pumpkins and some of the flowers to the porch off my room so I can see them. :)
Saturday, September 16, 2006 11:11 AM CDT Hopefully I can be done with these medical updates soon and be on to the important stuff! (And I hope this update makes sense, since I tend to ramble when I'm tired.hehe)
Tuesday, September 12, 2006 10:57 AM CDT Yesterday and today (hope I'm not jinxing myself here) have been pretty good. At 3:00 today it will be (drumroll please) a whole 72 hours without benadryl. *grin* Yesterday I was able to eat about 7 rice cakes throughout the day. Thats more than I've done all week. I don't know how I'll do today since what I kept down is still sitting in my stomach, but I'm going to try, since I know 300 calories every other day is not going to work. Even though my stomach isn't feeling great, cauliflower and brussel sprouts are sounding really good and so is cereal, so I will try something like that later this afternoon. Sunday, September 10, 2006 9:59 AM CDT Just wanted to check in...I'm hanging in there. Since the last update I went a whole (drumroll please) 35 hours without benadryl! *grin* Since then I have taken a few doses, one of them being 75 mg. But since 3:00 yesterday I haven't had any. I hadn't eaten in 4 days, except for two crackers, and I think the pain of trying to keep it down is what started that big reaction. So I'm going to take a break from eating again today, I just don't think my body is ready for it while trying to manage everything else thats going on. But plain rice cakes are sounding really good to me, so I think thats the plan for tomorrow. I'm working on drinking more today since I kind of slacked on that yesterday. I can't believe I have gone almost a week without any meds...how's that for the grace of God? I have just been laying flat, but I'm not feeling too terrible. :) Thursday, September 7, 2006 10:21 AM CDT "I know God won't give me any more than I can handle. I just wish he didn't trust me so much." - Mother Theresa
Monday, September 4, 2006 4:40 PM CDT Hey guys...just wanted to check in. I'm sorry if this is rambling or does't make much sense, I'm not feeling too great right now. I was trying to find a better way to say it, but I guess some things are harder to sugar coat thn others. On Friday morning I started with a mast cell flare up and had an allergic reaction to the med that controls my heart rate and blood pressure. fortunately Benadryl kept it under control until yesterday (I can no longer take solumedrol as I am now allergic to it). But today I had to go without my meds. I tried 3 new meds over the course of the weekend but had reactions to all of them.
Thursday, August 31, 2006 6:58 PM CDT It's me again! Not much going on around here. The house has been sooo quiet without my girls Lara and Liz here. It was funny, about an hour after Mom and Dad got home from dropping Lara off at school we all sat down to dinner. Dad said "Well, I just emailed Lara." And then I said "I just emailed her too!" And mom said, "Oh no, I just called her!" hehe. If the poor kid never comes home to visit, we'll know why! But I IMed with her yesterday, (which was so weird not to just talk to her in person!) and although she has a lot more school work than she's used to, she's really happy there. We've already mailed two packages of things she left at home, so I bet her room is pretty full. And I talked to Lizzi today, she made dinner all by herself tonight, and I'm sure it was good, although I've never heard of leaving chicken in a crock pot for two days...hehe.
Wednesday, August 30, 2006 6:44 PM CDT Hey guys! I'm not feeling up to doing a huge entry tonight, but I have a prayer request that can't wait. Please storm heaven with prayers for the Amazing Christi Thomas. It is just heartbreaking what she i going thorugh right now, and I can't imagine how hard it is on her family. The Thomas team could use a miracle tonight... no one should ever have to face this kind of stuff. Saturday, August 26, 2006 1:21 PM CDT To My All Grown Up Baby Sister
Thursday, August 24, 2006 2:42 PM CDT A Day Late and a Planet Short
Sunday, August 20, 2006 12:20 AM CDT It's All Fun And Games Till The Bouncing Castle Collapses Tuesday, August 15, 2006 2:44 PM CDT I haven't updated yet this week because, honestly, there hasn't been much to write about. Had I journaled, it would have looked like this: "slept, ate crackers, read, ate applesauce, slept some more, read some more.." hehe Sorry I'm so boring!
Thursday, August 10, 2006 3:21 PM CDT Robin Hood Stole My Mom's Credit Card
Monday, August 7, 2006 3:52 PM CDT Normal is Just a Setting on the Washing Machine
Monday, July 31, 2006 4:14 PM CDT Eight Below Monday, July 24, 2006 2:26 PM CDT Churchfolk, Nutritional Supplements, and the Garbage Bus
Thursday, July 20, 2006 1:21 PM CDT I apologize for my brief journalistic hiatus. I just realized that its Thursday already and I have gone all week without updating. Things have been quiet around here for me, although the rest of the world around me seems to have sped up. Between Lara and Lizzi there has been a lot of college shopping, apartment renting, more shopping, plane ticket buying, room cleaning-out, and more shopping. I seem to be the opinion of choice and have been consulted on for various issues including comforters, duvet covers, and twin extra long sheet sets. As much fun as all this is, I am trying to enjoy it while it lasts because soon enough the house will be empty again and the "tornadoes" known as Lara and Liz will be much farter away from home.
Thursday, July 13, 2006 10:02 AM CDT Sunday, July 9, 2006 2:58 PM CDT So much to update...so little room in the "journal message" box. Lara got home early Saturday morning at around 3 AM. I was so excited to see her, so I woke up for a little while and saw pictures of everything. Uncle Bill(Dad's brother) and Aunt Judy (Dad's sister) took her to Paris and London for her grauation present. She took tons of pictures but I don't have the camera with me to upload them, so all her adventures will have to wait until next time.
Thursday, July 6, 2006 10:37 AM CDT The good thing about the house being quieter (well I guess its a good thing) is that I can sleep a little later. Every morning I think its like 9:00 and then I look at the clock and its 11:30. hehe. So thats what I've been doing. Lara comes home tomorrow, late late in the middle of the night, or I guess its more like early morning. I'm really excited to see her, I miss her a ton. I'm sure I'll wake up when she gets home to her about some of her adventures. I talked to her for a while last night and it sounds like she's having the experience of a lifetime. She said she doesn't miss any of us except Ollie (Ha!). But Mom and Dad think she misses me too since she only talked to them for about 30 seconds and we talked for 15 minutes (until her cellphone battery died). Sunday, July 2, 2006 3:28 PM CDT It isn't as boring around here as I thought it would be with just the three of us. On Friday night Mom and Dad and I were just sitting around as I was like, "hear that silence? Thats how its going to be all year. hehe. But surprisingly the house hasn't seemed boringly empty since then. Today Dad came downstairs and gave this lecture on the gargolyes on the Cathedral of Notre Dame. Apparently one is called Dedo, becuase it has a funny looking toe, and one time a nun fell off the roof and landed on it...umm yeah. So Dad was going on and on about this Gargolye show on the history channel and I finally had to comment, "You fell asleep at all my dance recitals, but this, you can stay awake for?" He didn't really have anything to say about that, but Mom and I had a good laugh over it. So at least I won't be bored to tears next year. Friday, June 30, 2006 2:09 PM CDT It is actually quiet here now. After frantic last minute packing and phones call to the airlines about luggage weight Mom took Lara to Aunt Judy's house to meet the limo. When Lara heard that Connecticut Limo was picking her up she got pretty excited, which I thought was kind of odd. Apparently she thought a private stretch limo was going to pick up her and Aunt Judy and take them to the airport. She was a little disappointed to learn that "Connecticut Limo" is actually a "public bus from the airport." hehe. So ow my job for the next week is making sure her baby Ollie gets his much needed attention. I don't think that should be a problem, his head is sticky with lipgloss from so many kisses.
Sunday, June 25, 2006 2:44 PM CDT If you are on steroids, or have a kid on steriods, you will appreciate the following conversation that took place between my sister and me this morning: Friday, June 23, 2006 11:49 AM CDT The Graduation Update Sunday, June 18, 2006 1:19 PM CDT Today has been fun, woke up this morning and gave Dad his presents. I made him a "Phone Caddy". Let me explain... He has an old, falling apart, shoebox that he keeps his phones in (cell phone, buisness lines and house line). He carries this shoebox around with him and keeps it in his office when he's working. He calls it the "phone caddy." He talks about it so seriously, like if he leaves it in the kitchen, he come downstairs and say "Oh, I left my phone caddy down here." We all make fun of him, like "Dad its a cardbord box." So for fathers day I found a plastic bin, painted it with his company's name (Innotech, named from the movie Offive Space)hehe and decorated it with stickers. So now he has a plastic phone caddy. Which is a good thing because the box was just about ready to fall apart. hehe. So he's thrilled with it, and no complaints here, he's easy to shop for. hehe. Monday, June 12, 2006 2:30 PM CDT Monday, June 12, 2006 1:55 PM CDT
Tuesday, June 6, 2006 5:23 PM CDT Today started off rough, but it has been getting better as time goes on. The good thing about waking up sick is that things can only get better from there! hehe. I guess I sat up in bed too fast this morning without giving the midodrine time to get my blood pressure up. I don't mind passing out at all, really its one of the easier things I go through, but I wasn't too thrilled when I passed out and threw up at the same time. (Now that takes talent!). Speaking of talented I managed to puke all over my hair, which mom just washed before bed last night. Fortunately my amazing Dad cleaned it all up for me and got all the yuckyness out. I'm so proud of my Dad, he has really mastered the art of hair brushing and styling. His ponytailing skills have really improved. hehe. He'll be french braiding in no time. hehe. Other than that I had to go on Erythro (again) for aspiration sinusitis. But I have pelnty of Zofran and Promethazine so its not a big deal. I have learned to take Zofran an hour before and Phenergan an hour after each dose and then I can keep the pill down, which is good. I always think its funny that they treat the infection from throwing up with a medicine that makes me throw up more. Viscious cycle? hehe. Sunday, June 4, 2006 1:55 PM CDT
Tuesday, May 30, 2006 5:30 PM CDT Today has been sooo nice. Summer is finally here. I have literally been outside all day, rotating between the porch swing on the front porch, a lounge chair on the back porch and patio, the tree swing, and the bench in the back garden. I have finished a whole book today, The Bell Jar, well almost finished it, just have one more chapter. Its a good summer read, plus it has random musings written in the margins, I always love it when I get a library book that someone has written in. I spend half the time trying to figure out what the other person got out of the book. It was 90 here today...which I just love. Of course Dad turned on the air conditioning, one of the reasons I have been staying outside. Everyone else has been complaining about the heat, but for someone with temp. regulation issues 90 feels sooo nice. This is the first time since last summer that I have not used the heating pad all day and my hands have not been tinged blue. My temp usually hovers in the 93-94 range, which a nurse told me is clinically considered hypothermia (lol), so it makes sense that I feel better when its nice and hot. Of course just last week it was in the 50's, but thats New England for you. Its not at all muggy today, so I am really happy that I can stay out all day and not have to worry about having trouble breathing tonight...for some reason those muggy damp nights really are rough. Sunday, May 28, 2006 5:32 PM CDT I finally decided it's time to settle in for the night and do some quiet journaling. I have been on the go all weekend, well pretty active for me anyway. Yesterday I decided I couldn't be away from the piano any longer. It has literally been months since I played it. The keyboard on my lap on the couch is fine and lovely, buts it's not a full keyboard, and there's no way it could ever compare to an upright grand. So yesterday and today I have been parked at the piano. I substituted a chair with a pillow in back for the bench and it seems to work quite nicely. I am wayy out of practice but each time I go into the living room I play until my arms are shaking, so I'm hoping I can make up for lost time fairly quickly. Wednesday, May 24, 2006 1:42 PM CDT Over the past few days the family room has been turned into a little hospital. Thank God for nurse Mom! Ollie had another cardiac episode on Sunday. He just out of the blue started doing, the wide stance, panting to breathe, and of course the vet was closed so we brought him to the Shorline ER. He was a pretty sick little guy and had to stay in an oxygen cage over night with an IV for Lasix. He still wasn't doing too well in the morning so he went to stay the day at our vet. His Dr. said his heart ws really pretty enlarged and this is just going to keep happening, so we should think about putting him down, but we had a har time making the decision so when that vet's office closed he went to the Norwalk ER. The Dr. there (his cardiologist) wanted to give us some time with him and let us bring him home. He went back in the morning for an ech and was doing a little bit better, but they said there's really nothing else they can do for him, so the next episode is it. As much as I love the little guy, I have to wonder about quality of life and I'm sure he is ready to not be sick anymore. I told Mom that watching him suffer breaks my heart more than losing him would. He has a nitroglycerin patch on his ear that has to be changed every 12 hours, but personally I think everything they do to him just makes him cuter. hehe. Luckily we have tons and tons of gloves left over from my infusion company and when I was on home care so mom is using those to tape on the nitro patches (we're not supposed to come in contact with them) and clean off his ear. Praise God he seems to be getting back to his old self today and slept really well last night, so I am hoping he can continue to hang in there. Ok, who's CaringBridge page is this anyway? hehe.
Friday, May 19, 2006 3:14 PM CDT We're in the middle of a huge thunderstorm here, so I'm trying to get this entry in before the power goes out. The weather channel just issued a hail warning and the lights are dimming, so I hope the internet doesn't go out. Despite the icky stomach-full-of-anitbiotics feeling, I have been feeling much much better the past 4 days. Lately I had been having a huge increase in cardiac symptoms. Every time I threw up or laughed (which I'm usually doing one or the other, hehe) my arrythmia and tacchycardia would kick in. It got to the point where I was trying not to laugh and I was just saying "thats funny" instead. Of course after a few days of that my family found it pretty annoying and took every opportunity to tease me about it. My dad would say a joke and then ask, "Hey Cait, isn't that funny?" So of course that made me laugh even more. I was going to get a holter done but the I spent the night before catching up with my best friend, so I wasn't feeling up to making the trek to the Dr's office the next morning. (shh don't tell Dr. Sora why I didn't make the appointment.)hehe. But the episodes have gone from a few times an hour to once or twice a day if that. Which is really good since all I could do during an episode was lay down, so its nice to be a little bit more active. I'm thinking it was all dysaut. related since there's something called the Valsalva Maneuver, which basically happens when you tense your stomach muscles, and it can cause blood pressure drops in dysaut. patients.
Friday, May 12, 2006 3:03 PM CDT I don't know how smart it is to eat dried apricots while I'm journaling, my computer is getting a little sticky.hehe. This is one of those weeks where I'm wondering where the time went. My bestest buddy Lizzi graduates tomorrow, and in month Lara goes for college orientation. And I've been watching it all from my view on the couch and I've had plenty of time to think, and think...and think some more. First I though of how far I have come in the past six years too. I went from being that shy girl who spent lunch time in the library to the piano room to the girl who gets everyody in the O.R. laughing. Maybe I didn't ever get a chance to take the SAT's but I know enough medical terms to hold my own with any resident in the ER. But then theres the other side of the coin, and although I aboslutely refuse to ever throw myself a pity party, that what I've been thinking about lately. The National Honors Society ceremony I missed, the graduation parties, the High School I graduated from and actually set foot inside less than a dozen times, what college I would have gone to... I know I missed things and I guess I'm just wondering what would have been. There's a theory called Occam's razor that says "one should not increase, beyond what is necessary, the number of entities required to explain anything".It basically means the best answer is the simplest one. Once a nurse told me that what I'm going thorugh is a detour on the road of life. Yes, it has been a bumpy road, but in general the scenery is beautiful. With all detours though, I just can't help but wondered where I would have ended up if I had stayed on the main road. ok, enough rambling.
Sunday, May 7, 2006 11:01 AM CDT This morning everyone was home and we all had breakfast together, which doesn't happen too often. Usually Dad eats before I wake up, and Lara is sleeping over someones house. So Mom made chocolate chip panckaes and Latkes. (No we're not Jewish, but we'd be willing to convert for those potatoes). hehe. It has been so nice this weekend, Spring is finally here to stay. It was 81 on Friday and Mom bought some new cushions for the porch swing, so I've been glued to it. Wednesday, May 3, 2006 4:17 PM CDT I went in for my routine labs today and it turned out to be anything but routine. We usually go to the quest in Stratford, since the tech ther (Mary Jane) has become like family and she is the only one who can find veins without a big production. Plus that particular quest is right next to the beach, so I like to get out and sit ont he sea wall. But a new Quest just opened right around the corner from home and is a 10 minute closer drive, so with my current carsickness situation it seemed like a better deal. When the tech came in she of course was curious to know what was wrong with me. When I explained mastocytosis and dysautonomia, she started with the typical "oh you poor thing, you're so young." She said that I must feel sad that I missed out on college. I told her that I knew God had a purpose for all of this and I am just trying to trust his plan, and with that she got so excited and started sharing her faith. She told us about a book store where we could find healing scriptures on tape, and when she was done she took my hands and prayed scripture over me. She even gave Mom a hug when we were leaving.
Tuesday, April 25, 2006 4:53 PM CDT Its soo warm and sunny here today, which is really nice after having rained all weekend. I love the rain, but no as much as I love a sunny spring day. The main reason I am so happy for the nice weather is that no "wildlife" will be coming into the house seeking shelter from the rain. I had an uninvited house guest last night. I normally don't mind spiders in my room, i just pick them up and put them outside. Mom does it too and we call it the "catch and release program" hehe. But there was no way either of us were going near this spider that was in my room last night. It was absolutely HUGE. Here's a picture of it hanging out on the vertical blinds in my room. And no, I didn't photoshop the picture, it was that big.
Wednesday, April 19, 2006 12:04 AM CDT Today is one of those father/daughter days that I love so much. Mom took Lara to look at a college so its just me and Dad. And by the way I'm super proud of him - he just got one of his inventions patented. Its some kind of mad scientist surgical tool, so if you're having back surgery in the future, the surgeon might be using Dad's tool. I was having fun playing with the prototype until I learned that it had been tested on a cadaver. Ummm, yeah I put it down real fast when I heard that. Of course it had been sterilized since then, but still. So congratulations to my crazy mad scientist father, I know how much hard work went into that thing and it looks super cool. Monday, April 17, 2006 2:17 PM CDT I hope y'all had a happy Easter. Easter is probably my favorite holiday. There is just something about standing in chruch and saying "He is risen!" that gives me so much hope. A lot of people have asked me how God can allow so much suffering, and how I can still believe in Him. I think the only answer to suffering can be found in Christianity and the cross. Jesus suffered more on those hours on the cross than I have in all these years of sickness. If even God is not exempt from suffering, then what makes me think I have the right to be? In his message on evil and suffering, Ravi Zaharias said "The essence of the Christian message is found in the cross. It is not something Jesus wanted, but the purpose for which he came. Human will gone wrong academically raises the question of innocence and suffering but in actuality justifies it. The cross was the greatest trial of all time, and through this act man was reconciled with God. The cross is the most overwhelming aspect of Christian faith. Outside of the cross there is no answer for evil and suffering." And becuase of Christ's work on the cross I know that no matter what trials I face in this life I am promised a future with no sickness, pain or death. When Jesus said "It is finished", when the stone was rolled away and the tomb was empty, the sickness, pain, and any "prognosis" any doctor has ever given me has lost its power over me. Thats what Easter means to me. Hope, grace, mercy, promises fulfilled, and all that good stuff. :)
Wednesday, April 12, 2006 2:58 PM CDT Ever since I got sick Mom has said she wishes she'd been a nurse. Today she said shes glad shes not a nurse - she has enough paitents at home to worry about without having to go to work and take care of more people. hehe. Yes, it has been one of those weeks. It started around midnight on Friday morning when Lara brought Ollie downstairs and said he was breathing fast. He was awake sitting up the rest of the night and by 8 the next morning he was in full cardiac distress, rapid panting, tounge down practically to the floor, the whole bit. Luckily the vets office was just opening up and the doctors were just getting in so they rushed him over. They gave him a Lasix bolus and some oxygen. They were going to keep him for the day so they brought him out to say goodbye to Lara and the poor little guy got so excited to see his mommy that he needed more Lasix. Lara and I just kind of moped around the rest of the day, we were pretty upset. They had asked if we wanted them to do CPR if he stopped breathing, so we were expecting the worst. When they were closing they decided to transfer him to the doggie ER in Norwalk. (Yes, you read that right, doggie ER...only in Connecticut). They put him in an oxygen crate there for an hour and a half and then he was doing so much better that they said he could come home. His pulse ox was up to 99 percent (I wanted to know how you pulse ox a dog...aparently they shave a little spot on the tail and clip the thing on hehe). So now he's home and after 36 hours of straight sleeping hes back to his fiesty little self. So a lot of lasix, an oxygen cage, 2 vets, and $500 later (shhh don't tell Dad) it looks like he's going to be alright. Thursday, April 6, 2006 1:24 PM CDT Today has been busy busy...its amazing how much you can accomplish without getting off the couch.hehe. The Chronicles of Narnia finally came out on DVD after all these months of waiting and of course I had to rent it. C.S. Lewis was my absolute favorite when I was a kid and I have been waiting to see the movie forever. I have watched it twice so far...its becoming a favorite. I was amazed at how Aslan looked so strong and gentle at the same time...kind of like that feeling you get with God, so powerful yet so approachable. Funny that I got all that from a lion.hehe. Thursday, March 30, 2006 3:35 PM CST Its 67 degrees outside!!! *big grin* Tomorrow its going to be 70 so I have a big day planned outside. I have been having withdrawl from my porch swing, and I reaaalllly am hoping that I'll be feeling up to taking my telescope out on a warm night. Can you tell I just love spring? hehe. Not much new here, just the usual reading, movie watching and scrapbooking. The college correspondence course I was so excited about has a little glitch, they sent me the tapes for the old course that they don't teach any more. (meaning I can't get credit for it.) And the new tapes are (hopefully) going to be ready in three months at the soonest...so I was a little bit dissapointed about that. I guess God is teaching me a lesson in patience. But today Dad surprised me with some new sheet music, Grace, its Jim Brickman's arrangement of a bunch of hymns. I have been wanting it forever, it has the most beautiful version of Amazing Grace...so thank you Daddy! :) Needless to say I have been glued to the keyboard all day.
Wednesday, March 22, 2006 11:44 AM CST Breaking news...I am now officially a COLLEGE STUDENT!! *huge grin*. I sent away for the video correspondence course from Charis Bible College in January and I got it about a month ago but I haven't really felt up to starting it for a while since a lot of the time I'm too dizzy to watch TV. But today that box was practically begging me to open it, so I did and I watched about 15 minutes of the first video. It comes with workbooks and tests and everything. I got the first installment (there are 4 installments in a term and 3 terms in a year) and its 12 videos. I have a lot of classes to watch hehe. They used to just have online classes and I wasn't feeling up to that but they just came out with the videos and they actually tape te classes. Its pretty neat, it almost feels like you're there. Going to college was #7 o my life's to do list, and it feels so good to actually be doing it. I have been trying to order the videos since September, but it took them longer than expected to get the program set up, and then I started with all my mast cell stuff and this got put on the back burner. I'm so happy to finally get it accomplished. So its official...I go to Charis Bible College.:)
Sunday, March 19, 2006 1:25 PM CST Today started out well, and for the most part has been a good day. Actually, any day where I can avoid a trip to the ER is a good day. Of course its not good when I could have avoided the almost trip to the ER if I had not been such a ditz. I woke up around 10 and was drawing/doing crafty stuff for about an hour and a half, which is way longer than I am usually active for, so when I started feeling bad I just assumed I had over done it. But then like 10 minutes later I was pretty tachy (around 230 bpm) which is usually when we start making plans to head to the ER in case I need adenosine. Then the right side of my body started shaking like crazy, something that has never happened before. So Dad called Dr. Sora to give him the head up that we were coming in. He said to take an extra dose of Atenolol right away and he would call ahead for us. Thank God it took us a while to get our act together and get out because by the time we were ready to leave the Atenolol had started working and I was down to around 160 bpm. And my blood pressure was a lot better, it had been 50/30 before the Atenolol and it came up to 70/40. We didn't rush to get down to St. V's because even though my numbers weren't great, I really didn't feel all that horrible besides the shakiness. So I'm glad we stuck it out at home because everything worked out. I have learned that although numbers are an idicator of whats going on, its much more important to pay attention to how I feel, because I can have some crazy numbers and still feel alright, and my numbers can change so quickly. Monday, March 13, 2006 11:25 AM CST I can't complain that nothing ever happens around here. This morning was anything but quiet. Spring is around the corner and with that all the little birds come back. One of my favorite things is laying in bed in the morning listening to all the little birds. Ollie doesn't seem to appreciate them as much. He has a habit of barking when the toaster beeps, and this morning there was a little bird on the porch that had the same pitch as the toaster. hehe. So every time it squeaked (about every 20 seconds) Ollie would start barking and then Frisbee would hear Ollie and start barking. They finally got quiet just in time for the bird to squeak again, and then they would start barking again. hehe. That was from 6 am on. Then around 8 I heard a car horn and then a crash. I didn't think much of it at first since there has been consturction work on the next street over and they are usually hammering or moving something in the morning. But after a few minutes I don't know why, but I got up and looked out the window. I didn't expect to see that there had been a car accident right in front of my house. Thankfully both people involved were ok, other than the fact that they were going to be a little late for work. I'm pretty impressed with my sleeping skills, I managed to sleep in despite the chaos. The tow truck is just removing the smashed up car now.
Tuesday, March 7, 2006 11:34 AM CST HOPE IS THE BEST MEDICINE
Friday, March 3, 2006 11:48 AM CST I know I haven't written much about my medical happenings lately...this page has just kind of turned into me rambling about my dogs and my scrapbooking projects. But my thinking is, if you're browsing CaringBridge, you already spend enough time thinking about lab results, CBC's and MRI's, doctors apoointments, and all that stuff. I have just been trying to focus on doing what I can to have fun lately. My latest revelation is that I DON'T WANT TO LIVE WITH DYSAUTONOMIA AND MASTOCYTOSIS, i WANT TO LIVE DESPITE DSAUTONOMIA/MASTOCYTOSIS. So I guess I've carried over my new thought proccess into my journal. It not really new, but I believe in it more now.
Monday, February 27, 2006 11:18 AM CST Really not much of anything going on here...just watching the olympics that mom taped for me last night. I just found out Uncle Bill is coming in from Atlanta next weekend for Aunt Judy's birhtday party. I'm really excited since I hardly ever get to see him. Today has just been a quiet day, I am laying around waiting for my midorine to kick in. I had to double up on it since I fainted this morning while Dad was pushing me to the bathroom. It was kinda funny though, after I passed out he sat me up in my wheelchair and after a while he got concerned that I wasn't waking up. When I came to my heart was squeezing so hard. I have no idea why he sat me up, that is like the last thing you should do to an unconscious dysautonomiac. lol. You're supposed to elevate their feet, if anything. But no worries, it all worked out ok. Thursday, February 23, 2006 10:31 AM CST Mom and I started the morning by sitting on the couch with my medication/symptom log and some lab results spread out all over the coffee table. We were putting in my update call to Dr. Rockwell (immunologist) and we were just going over my notes first. We were discussing H1 vs. H2 blockers and my norepinephrine in comparison to my other catecholemines. I just started lauging because we were going through all these notes and spitting out all this medical jargon. I said to mom "I feel like we're a bunch of doctors on rounds." haha. All this medical stuff gets so familliar that it just becomes part of the routine, but every once in a while I kind of see the situation from a different point of view. I don't want to say from a "normal" point of view, because I don't believe in the "N" word, but stuff like this would probably seem insane to someone who hasn't traveled this road. You all know what I mean. Monday, February 20, 2006 11:44 AM CST pro-cras-tin-ate (v): To put off doing something, especially out of habitual carelessness or laziness. To delay needlessly.
Monday, February 13, 2006 4:21 PM CST 27.6 - thats how many inches of snow are outside according to the weatherman. Its so beautiful too. Its one of those snows thats really sparkly and looks like it has glitter mixed in with it. Thats my favorite kind. Its perfect too because I was just thinking that we hadn't had a really big storm yet this year. I just love those snowed in, kids sledding in the street, snowmen and hot chocolate kind of days. Of course its easy for me to love it so much because I don't have to go out in it. I bet my Dad thinks differently being out there with the snow blower. I took some pictures of the storm but I still have to get the camera cord from the basement so I can download the pictures on here.
Friday, February 3, 2006 1:22 PM CST So I was organizing my pills yesterday,you know getting rid of all the old empty bottles and random meds I am no longer on, and I decided that the pharmacists just randomly slap those little yellow stickers on the bottles...seriously some of them just make no sense. The prednisone bottle says "take with food." I don't think that would be an issue for someone on prednisone...when you're on that you pretty much take everything with food. And then theres zofran - "Use caution when operating dangerous machinery." That one is actually good for me to have becuase I do tend to operate dangerous machinery from time to time...you know, forklifts, buldozers...hehe. And then there's the best one, tramadol, it says "take with or without food." What other option is there? I take all my pills with or without food. If you don't take your meds either with food or without it, then I'd like to know how you take them hehe. Saturday, January 28, 2006 1:13 PM CST First of all...CONGRATULATONS SAVANNAH ON YOUR NEW LIVER!!!
Tuesday, January 17, 2006 10:24 AM EST "For to me, to live is Christ and to die is gain." Philippians 1:21
Wednesday, January 11, 2006 10:10 AM CST Things have been quiet here...which is always a good thing in my book.hehe. My Uncle Bill got me Netflix for Christmas so that has been keeping me busy. I just finished watching Christmas with the Kranks and Its a Wonderful Life. I had so many Christmas movies on my list that I'm still watching them, but I think I've pretty much seen them all by now. So now I'm just waiting for the mail to come. :) Mom went out yesterday and got me some new pajamas. Before all this craziness started Mom asked Lara and I to start our Christmas lists and the only thing I could think of that I wanted were these lavender pajamas with darker purple scottie dogs on them. Well of course they were on backorder and no more were coming in so mom felt really horrible. I didn't mind, but mom went out shopping yesterday and she found them. Very cool. :) And she got me some green ones with pink and white snowflakes. So now I can be a couch potato in atyle. Wednesday, January 4, 2006 2:52 PM CST The One Where I Come Out of Hiding Thursday, December 29, 2005 1:25 PM CST Hi, its me. :) I'm not really up to updating yet but I just wanted to let everyone know I'm ok...had a bit of a scare with the feeding tube, developed rejection to it and got pretty sick...so sorry to leave you all worried but it was pretty intense here for a while. I'll try to be awake more within the next few days so I can update more. Thank you sooo much for the prayers. I love you guys :) xo Tuesday, November 29, 2005 5:52 PM CST The One With the Couch on the Porch Saturday, November 26, 2005 10:23 AM CST The One Where I'm Thankful Sunday, November 20, 2005 4:26 PM CST I can't believe how fast this weekend went by. The relatives are all gone as of this afternoon (my mom's sister and her husband flew back to Wisconsin and my cousin went back to California) and I can't believe how quiet the house is. It makes me think of that old "silence is deafening" paradox. We really weren't expecting anyone to fly in on such short notice but Aunt Marcia, Uncle Ray ad Cathy all showed up Thursday night. The service was at 11 on Friday morning. There was a picture on Nana when she was 27 sitting in the flowers on top of the casket and all I could think of was that she looked like a movie star. Really she was so gorgeous. The weather was really nice, a little cold and breezy, but it was so clear and crisp and sunny. The service really focused on the hope we have in eternity and all of Christ's promises and our the future glory that we will see. Some of the nuns who run the nursing home and people that had taken care of Nana came to the service too. It was so nice to see how much she was loved. When mom went to pick up her things, one of the nurses asked if she could keep one of Nana's shawls to remember her by because she loved her so much. Really, the staff were angels and its so nice to know that Nana was so happy there. Wednesday, November 16, 2005 3:32 PM CST Friday, November 11, 2005 12:01 AM CST The One With All the Smoke
Monday, November 7, 2005 4:52 PM CST I was planning on journaling earlier, but this morning was surprisingly productive. I went for labs this morning...the lovely Mary Jane was there which was nice since shes my absolute favorite "pleb" (thats what they call the blood draw people). Just my luck they were taking inventory and the chair you sit in to get drawn was covered with latex tourniquets, so she just drew me from my wheelchair to be safe. Next time I will remember to have someone put the brakes on first.hehe. We were causing all kind of trouble there...First I told the new tech that he looked like Anwar from American Idol (which he really did) and then he got embarrased. And then on the way out Mom accidentally pushed my chair into the bio-hazard box in the hall.hehe. Then when we got home we unpacked the new vaccum and assembled it all by ourselves. Move over Rosie the Riveter. I was the instruction figurer-outer and mom did the manual labor. It was pretty comical.
Monday, October 31, 2005 6:02 PM CST Happy Halloween!! I keep starting to update but then I get up to see the kids int thier costumes. The neighbors across the street are having hay rides that go down the street. They haven't gotten to our side yet, so we will probably get a ton of kids when the hay ride comes by. I just saw the most hysterical costume, two words - penguin jockey. hehe. Every time the doorbell rings the dogs go absolutely crazy. And then They each have to be the last one to bark so its pure chaos here. Plus I am wearing a baseball hat right now so and it is driving Ollie absolutely crazy. He doesn't recognize people in hats so he is sitting across the room barking and growling at me.
Saturday, October 29, 2005 4:51 PM CDT Today has been good, cold but good. I talked to Lizzi today and its snowing in Boston...only two and a half hours north of here...I can't believe its snowing already and its not even Halloween...I was planning on sitting out on the porch on Monday to hand out candy. I don't think my candy corn costume is going to work since I was just planning on wearing yellow capris and an orange t-shirt with a white hat. I'm going to have to come up with something warmer. I might just have to borrow the butterfly wings from the dog. hehe. Tuesday, October 25, 2005 6:26 PM CDT Where did this week go? I have been meaning to update for the past several days, but the crumminess has been persisting so I have been procrastinating. The day is broken down into two categories...zofran, tramadol, and midodrine working, and zofran, tramadol, and midodrine wearing off. hehe. During the "working hours" I have been busy catching up with all the packages I have been meaning to send out. So if you had a birhtday within the past 5 years and haven't gotten a present from me, it should be on its way soon. I also managed to figure out how to plug in a mic to the computer and, who knew, I have a recording program on here. So I have been atempting to record some piano stuff. Not really sure what I'm going to do with it...but its something to play with.
Tuesday, October 18, 2005 9:49 AM CDT Hello hello. I know, its been forever. I was crashing for a while and really didn't feel up to journaling but I think I'm feeling a little bit better today. I made it to the birthday party last weekend...actually I guess it was the weekend before. (When you're in the house for a while in the same routine, you tend to lose track of the days sometimes. But I guess all you CB people are all to familliar with that). Anyway I had a wonderful time, and I found a really comfortable corner bench so I was able to stay a while hehe. It was definately worth crashing for, so I don't mind feeling kind of crummy this week. Okay, if I'm being honest maybe I do mind just a little bit, but I have some good dvds to take my mind of the swollen lymph nodes and puking. lol. Friday, October 7, 2005 5:24 PM CDT Not much going on around here...Today was a lab day so I was up early and off to get counts done. Thankfully my counts are on a little bit of an "up cycle" this week. I was praying for them to come up and even my white count increased by .1 hehe. I'll take what I can get. Dr. Berard called to talk about the results and he said because of the cycles my counts are going in and the levels they have been getting to it is definitely not related to the dysaut. but a seperate blood/bone marrow process. I can tell he is dying to do that bone marrow biopsy but no one wants to put me under anesthesia again after what happened in August. I offered to get it done with out any meds but everyone looks at me like I'm crazy when I say that. I think I if they knew what my every day pain was like they'd know that I could handle it...but I don't want to argue.
Monday, October 3, 2005 4:15 PM CDT I made it to the apple festival!! Yes I know I get way too excited about the town fairs...yes I'm a geek. It was a slightly different setup this year, so it was a little bit of an adventure when we got there. They usually have all the socializing,games,vendors, etc. in the street and then the cider and all the tents of apple-related food are on the green. This year they had antique cars parked on display in the street and all the attractions were on the green. So mom got to push my wheelchair across the (lumpy) grass. I felt bad that she had to push me over all those tree roots but she said she didn't mind. I have the best mom...she would probably push me across the sahara desert if I wanted to go there. Ollie came with us and he was behaving so well until he growled at a little boy and made him cry. Poor kid. Thursday, September 29, 2005 5:43 PM CDT I have the most AMAZING friends in the world. Yesterday Liz's mom called and as hard as it was, I told her about the situation and that I couldn't make it to Liz's birthday. She felt so bad that she didn't think of that when she booked the restaurant. I didn't even think of it for goodness sake. The reservations had been made, the invitations had been sent out...but she insisted on moving the party to a different restaurant. I told her I would understand, since everything had already been set up, but she wouldn't even hear of it. Lizzi said she would never dream of having her party without me there. So a half hour later, the party was booked at a different restaurant. I am soooo BLESSED!!! I have the BEST "Shmunky" hehe. So...October 9, 12:00, Bertucci's - I will be there!!! hehe
Tuesday, September 27, 2005 5:44 PM CDT Today has been pretty quiet...I spent the morning sleeping while Dad took all our junk out to the curb for fall cleaning day. We finally got rid of the couch in my room. It was my Nana and Grampy's and it was over 40 years old...so time for it to go. Whenever anyone sat on it they would sink down to the floor.hehe. So now I get to pick out a new couch from the ikea catalog and dad will go pick it up.
Sunday, September 25, 2005 4:57 PM CDT ~*~*~*CONGRATULATIONS SEAN AND COURTNEY*~*~*~
Wednesday, September 21, 2005 4:08 PM CDT ~*~*~*LAST DAY OF SUMMER*~*~*~
Sunday, September 18, 2005 4:57 PM CDT Wow it only took me two days to update...that must be a new record. I'm trying to get all my little butterfly decorations back up...I lost my links to the hunger site and the animal rescue site, and my beautiful banner that Joanne made me. I will have to spend some time on it tomorrow and try to find them again. Honetly I think you have to be a rocket scientist to keep a caring bridge page looking nice. Some people like Diana's, Pam's, and Cheyenne's pages always look so nice and then you come to mine and it has those little red x's all over it hehe. Oh well. I'm thinking of just cutting out a step and putting up some red x graphics.hehe. Friday, September 16, 2005 5:25 PM CDT Sorry its been forever...my internet wasn't cooperating. Dad spent about 10 hours on the phone with the Belkin people over the past few days and now its working again. Of course I did my part and listened to the soft jazz elevator music while he was on hold waiting for the help people to pick up. hehe. I will need a catharsis if I have to listen to 5 more minutes of Kenny G.lol.
Wednesday, August 31, 2005 2:24 PM CDT Today Ranjana came for my OT eval. We are going to be meeting on Thursdays again and we made some goals that include playing the piano and painting again. :) She brought over a catalog with all kinds of OT/PT supplies and we picked out a new collar for me that velcros in the front. The one I have now closes in the back and it ends up pulling out sooo much hair every time it comes off. hehe. The new one will be really helpful, since I will have to wear it more to support my neck when I start sitting up more.
Monday, August 29, 2005 5:31 PM CDT Sorry its been so long since I updated...they moved me out of 10 East Rehab shorty after the last update and instead of going back to ISCU, they moved me to the regular medical floor, and my room did not have internet access. Saturday, August 20, 2005 6:39 PM CDT I'm all moved into 10 East. ITs sooo ncie over here. The staff is great and we are already starting to bond. My nurses from 10S still come to visit me on their breaks...everyone is soo sweet here. Its pretty quiet here compared to 10S, where they called my room the party room.hehe. In the course of 4 nights w had Mom, Dad, Lara, Liz, Gabe, Janis, Chelsea, Aunt Judy, Aunt Ronnie, Michele, Michaela, Susan and Dan all crammed into my room. Thursday, August 18, 2005 2:19 PM CDT Hi!!! I just wanted to let everyone know that I'm ok...I'm still in the hospital. It turned out I mostl likely had a reaction to the anesthesia they used in my tube change. I ended up with something called acidosis, which basically means there were high levels of acid waste in my blood that my body couldn't get rid of. But it is all better now...which can really only be explained by a miracle. They found the acidosis Monday morning and on Monday night a whle crew from Calvary came over and laid hands on me. We prayed hard and long and by the time they left the room we had become like family. The doctors were not giving me very good news but we perservered, knowing that God is bigger than anything a test or doctor can say. Well they were doing blood draws every few hours and arranging for blood gasses and all kinds of specialists. But...by that night the acidosis had gone down. My doctor couldn't believe it or explain it, and cancelled the blood gasses. I was expecting a miracle, but still I was really shocked at just how completely amazing God is. But it gets even better. By Tuesday morning the acidosis was completely GONE!!! The specialists were sent away, and Dr. Sora was completely speechless. He said he had never seen it just go away before. I knew God put me in this hospital for a reason, and now He has been glorified in front of all the doctors and nurses. hehe. Don't you just love it? I feel sooo blessed. Sunday, August 14, 2005 5:00 PM CDT This is going to be a quickie, I'm not up to much typing. I just wanted to let you know I may not be around for the next couple days. I am going into St. Vincents tomorrow...Dr. Sora is going to try to get a bed for first thing in the morning, he wants to get me back on the ISCU, mainly because the nurses know me so well but the telemetry is also a bonus. I used to have a card in my bible that said "Trials are not enemies of faith, but opportunites to prove God's faithfulness." I don't know what God has been planning to accomplish this week, but I know that is where "walk by faith, not by sight" comes in. Yes I am praying for healing but I really just want to see a big miracle right now. If that miracle is healing, wonderful. But what right do I have to have to tell the creator of the universe what is best for me? I am just praying that God will use this week and this hospital stay for His glory. Who knows...maybe there is someone at St. V's who needs to hear God's word...I am praying that he will use me and my life for something big, and His power will be undeniable. I think the patient rooms just got internet access so if I feel up to it I will try to update if I am not home by Wednesday, but no promises. Wednesday, August 10, 2005 3:08 PM CDT The past few days have been kind of rough, but this verse really describes how I feel: "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalm 73:26. I didn't mention it before, but the day after I came home my G tube vent stopped working. We can flush it, but it won't vent and when we try to draw back with a syringe, the tube collapses. Dr. Rosenblatt feels it is positional since we can get things in, just not out. He had us take out 5 and then 10 cc's from the balloon to see if that would work. He felt my stomach could have collapsed behind the balloon (not as bad as it sounds) and maybe if we deflated the ballon it would work its way back to normal. It helped a little bit at first, but now its back to not working again. The silver lining is that I feel better without the balloon. It would kind of tug when I throw up, it doesn't hurt, just feels like a little alien in my stomach, so at leat I don't have to deal with that any more.hehe. The bad news is I'm back to throwing up about every half hour since the vent isn't working. I've been going through those big red plastic cups like crazy. In the hospital its the pink bucket, at home its the cups.hehe. Of course I could stop drinking iced tea and eating jello, but I have to have some fun. :P Sunday, August 7, 2005 5:12 PM CDT I just wanted to check in and let you know I am alive and well. I got "paroled" on Wednesday, but wasn’t really feeling up to typing until today. The procedure actually went pretty smoothly. Dr. Sora met us in admitting on Sunday to make sure everything was arranged and brought me up to the room. I had a great phone call with Heather...really made the prophalaxis a lot more fun. Not much happened on Sunday. The nurses all know I have my own routine with meds so they just let Mom and I do our thing. Most of the nusrses on the ISCU know me by now so they don’t panic over low temps or low BP anymore. They know not to worry as long as I say I feel ok. The admitting nurse wondered why I was sent straight to the ISCU but then she took my blood pressure and was like "oh, now I know why you came to stay with us." By Sunday night I was in typical prednisone mode. I insisted on eating popsicles though but as soon as I finished swallowing the last bite everything was in the "pink bucket". It was like, "well that was productive." It was pretty funny. Despite the bone pain, the good thing was that my white count doubled in 3 days and by Tuesday it was 6.8! yay for side effects. Friday, July 29, 2005 5:03 PM CDT I just have to say that the mini chill with Heather and Lauren was sooo much fun! I haven't talked that much in a long time. hehe. We watched The Village, and it actually wasn't half as scary as I thought it would be. I'm very proud of myself for watching the entire thing...I am such a chicken when it comes to scary movies and I usually watch the first 10 minutes peeking out from under a blanket and then end up turning it off. However I have to admit I probably spent more time watching the cats than the movie...they are soo cute! Wednesday, July 20, 2005 2:32 PM CDT This week has been pretty uneventful, which is always a good thing. Janis came over on Monday with pictures from the wedding...I will never get tired of looking at wedding pictures. We were trying to think of a way for me to get into Chelsea and Guy's apartment (2 flights of stairs - eek!). The best thing we could come up with was putting me in a basket and attaching it to a pulley and bringing me in through the window hehe. Sunday, July 10, 2005 7:32 PM CDT I'm sooo very sorry to neglect my journal for two whole weeks! I apologize to anyone who was worrying about me, I'm okay! (You can't get rid of me that easily...hehe). I was having a bit of a crash but I got started on some new kidney meds and now I am feeling much, much better! I had a little too much sweet tea this afternoon, but this morning the swelling I had was sooo much better.I put up a new picture..its of me on the porch swing this morning - look, no chipmunk cheeks!hehe.
Tuesday, June 28, 2005 8:28 PM CDT Sorry, I know it has been wayyy too long. I just got over a pretty bad crash and I didn't want to have to update any bad news and upset aby anyone. But I'm much better now and thankfully the worst only lasted a few days. I was planning on going to the fireworks on Friday night. Its really not a big deal, just one of the small town celebrations, but I had not misssed a year since I was born. I was doing alright, not the best but still ok and I was standing in the kitchen talking to my dad when (I'm sure you can guess what happens next) FAINT. Unfortunatley blood pressure recovery took a little longer than usual and I ended up lying on the kitchen floor for a while. It was hanging out in the 55/35 range, which left there long enough, is just asking for tacchycardia. My HR got to 200, but it still felt pretty even so I decided I didn't want to go to the hospital. My parents are pretty great at respecting my dcisions, and we just doubled up on the betablockers and waited it out. I just didn't feel like going to the hospital and being told there was nothing that could be done except monitoring me on telemetry. I really was just more comfportable at home. Plus I didn't want to risk getting the on call doctor who would start with the adenosine flushes. So needless to say I missed the fireworks for the first time in my life...but theres always next year. And I could hear them while I was falling asleep, so God wouldn't let me completely muss out I guess.
Sunday, June 19, 2005 4:28 PM CDT I want to dedicate this update to the man who taught me how to find the big dipper, fly a kite, swing a golf club, and solve quadratic equations - my father.
Thursday, June 16, 2005 6:09 PM CDT Sorry its been a while since the last update. Lately I have been having a close personal relationship with the zofran bottle and "the bucket". I would have updated sooner, except I haven't felt much like uncurling and getting off the couch. I'm thinking this is just a phase since it seems to happen for a few days every once in a while. Hopefully I'll be back to "normal" in a few days. The good news is I had a few hours yesterday where I was feeling pretty good and I was able to get out with Lizzi. She took a babysitting job (11 hours a day - eek!)and yesterday we took the 4 year old to the discovery museum while her sisters were in school. I haven't really been through the museum since about 5th grade and I remembered it being a lot bigger. hehe. We ran (literally) through pretty quicky, but it was nice to be out for a while. I think my mom had more fun than any of us...it really brought out the preschool teacher in her.hehe.
Wednesday, June 8, 2005 12:52 AM CDT Wow its been a little while...sorry about that. Ranjana has been keeping me pretty busy with OT and by the time I'm done digging pennies out of theraputty, theres not much finger strength left to type. hehe. I have a lot of guestbook signing to catch up on too...so to all my buddies out there in CB land - I haven't forgotten about you! X's and O's!
Thursday, June 2, 2005 7:46 PM CDT
Saturday, May 28, 2005 3:38 PM CDT So it seems like summer has finally arrived in Connecticut. (or at least sring anyway) Yesterday it was 46 and raining and today it must be at least 75. The sun is shining and I have taken up residence on the porch swing. The clouds have cleared and I can't wait to get the telescope out..Saturn is in full view this month.
Tuesday, May 24, 2005 5:04 PM EST I thought I would change the song for this entry since as of today I am Miss Independent, on account of (drumroll please)...I HAVE BEEN RELEASED FROM HOME HEALTHCARE!!! My nurse Olga came for one last official visit to get everything squared off. There was a lot of paperwork to go through because Dr. Sora had set up VNA care for the long haul. When I had the potassium crash and the muscle enzyme crisis he had not expected me to recover so nursing care was set up as a permanent thing. But this is me we're talking about...and you know how much I love to prove doctors wrong. :)So once again I have dotted the i's and crossed the t's and am officially off VNA care. That means along with the nursing visits ending, I don't have to have aides anymore. Olga and I decided that as much fun as we have together, we do not want to see each other for a very long time. Dr. Sora has left it open so I can go back on homecare again in the future if need be, but I hoping to prove him wrong again. I might still have to get a skilled nursing visit once a month, but thats just a technicality for the insurance to cover PT and OT coming out to the house. Tuesday, May 24, 2005 5:04 PM EST I thought I would change the song for this entry since as of today I am Miss Independent, on account of (drumroll please)...I HAVE BEEN RELEASED FROM HOME HEALTHCARE!!! My nurse Olga came for one last official visit to get everything squared off. There was a lot of paperwork to go through because Dr. Sora had set up VNA care for the long haul. When I had the potassium crash and the muscle enzyme crisis he had not expected me to recover so nursing care was set up as a permanent thing. But this is me we're talking about...and you know how much I love to prove doctors wrong. :)So once again I have dotted the i's and crossed the t's and am officially off VNA care. That means along with the nursing visits ending, I don't have to have aides anymore. Olga and I decided that as much fun as we have together, we do not want to see each other for a very long time. Dr. Sora has left it open so I can go back on homecare again in the future if need be, but I hoping to prove him wrong again. I might still have to get a skilled nursing visit once a month, but thats just a technicality for the insurance to cover PT and OT coming out to the house. Sunday, May 22, 2005 12:46 AM CDT Guess what? This message is coming to you from my very own laptop! Dad gave it to me last night. It came at just the right time, I was really starting to miss being able to sit up and instant message. If any of you want to chat my AIM is centralperky24. Now that I have a laptop, I'm thinking of taking a class or two online this summer. I want to get all my electives and requirements out of the way so when I get better I can go straight to nursing school. Yes, it is going to happen someday! :)I'm thinking of starting with something fun and easy to see how it goes. I'd really love to try an astronomy class. I bet you saw that one coming. hehe.
Tuesday, May 17, 2005 9:46 AM CDT Wow its been forever since my last update...still waiting for that laptop. hehe. I have really been thinking about the IVIG lately. I have been praying about it and just asking God to make his will obvious to me. I hate to say it but I'm not very good at listening to God's voice and direction. I always seem to overlook the little signs and things he does just to say "I'm here!" and then a month or so later it will click. I always tell Him...I'm not the brightest crayon in the box, if you're going to send me a sign you have to shout at me. hehe. God is so good it amazes me. Every time he answers a prayer I am in awe that He could care so much about every detail in the life of one litte person. He has done so much for us, we can do nothing for Him and he still cares so much its amazing... Since I haven't been able to go to church I watch Charles Stanley every Sunday night (hes on at 8 on INSP from the First Baptist Church in Atlanta Georgia.) Well he just happens to be doing a series on knowing the will of God for your life. And this weeks message? How to tell if a decision fits God's will for you. Coincidence? I don't believe in them. He gave 7 questions to ask yourself when making a decision... Friday, May 6, 2005 8:42 AM CDT I bet you're all looking at the time at the top of my journal and wondering what in the world I'm doing up at 10:10. My mom went out shopping this morning and Dad just left so I got up early to have some time to myslef. With both parents home and a team of nurses, aids, and physical and occupational therapists coming in, it's not very often I get the house to myself.
Saturday, April 30, 2005 7:06 PM CDT I had quite a nice surprise yesterday...I got a surprise visit from my best friend Lizzi. :) She called me, and I assumed she was up at school in Boston and then right after we hung up there was a knock at the door...my mom opened it and guess who it was :). It was sucha nice surprise! I hadn't expected to see her until school was out in 2 weeks. We played the piano and sang for a while and it was so nice to get out all our old worship songs again!We're already planning our adventures for this summer. :)
Tuesday, April 26, 2005 4:21 PM CDT Today has been a good day so far. Actually I believe each new day is a good day...its just that some are better than others. hehe. But this is one of the better ones. I tried a microdose of the marinol and so far I'm not allergic to it. The next step is to try 1/4 of a pill to make sure it doesn't set off my arrythmia. I'm so happy to possible have a new pain med. It will really make life so much easier. I'm looking forward to getting off the couch and sitting at the piano or painting or taking my telescope out for a while. Thursday, April 21, 2005 3:40 PM CDT I'm sorry its been sooo long since my last update but its been hard to do PT 3 times a week and sit at the computer to journal. My dad is going to be giving me his old laptop within the next week or so and once I get that going I will be able to update from the couch...so you should be hearing from me a lot more often. Things have been going well here...no news is good news. In Pt Caryn and I have been planting flowers. We will have the front garden fillend pretty soon. hehe. So far we have planted evening primrose, scarlet bee balm, and some oregano. Yesterday she brought her dogs over to garden with us...she has a pug so needless to say I'm in love with it. I just love pugs! Tomorrow she is bringing her 6 year old daughter over to give me a manicure. She brought her over on Monday too and we played piano together. I am going to be giving her lessons this summer. :) This is the first time that I have done PT without ending up in the hospital or backsliding. Caryn is so great, we know that I can't push it and do really intense exercising so we just walk around on the porch or play piano...its still activity but it doesn't make me as sick as walking back and forth across a pool. Plus its a lot more fun!
Tuesday, April 12, 2005 5:58 PM CDT Just call me pothead! Dr. McAllister said there is one pain med left that I haven't tried...get ready to laugh - its medicinal marijuana. But don't get any ideas of me walking around smoking a joint...it comes in pill form and its called Marinol...so I feel a little better since its not exactly the garden variety. The pharmacy just called saying it came in, they wouldn't let the doctor call or fax it in, Mom had to deliver the actual perscription and then it had to get cleared...getting drugs is very offical buisness. hehe. Of course I am probably the last person on the planet that anyone would expect to take marijuana, so everyone has been making fun of me. Mom, Dad, Lara, and Lizzi and Chelsea have had some fun with it too. Tomorrow will be the day that I try it...at this point I don't care what it is as long as it helps the pain. Of course with the pain better I will have no excuse to get the princesss treatment in PT anymore and I will actually have to work. After my massage yesterday my therapy consisted of walking from the couch to the porch and then sitting in the sun. :)
Friday, April 8, 2005 3:35 PM CDT Sorry this update has taken a while to get done. I turned on my computer this moring with every intention of jouraling but first I checked on my friends (who have really become more like family) like I always do. I had planned on telling you about my PT visit this morning which got turned into a spa day instead of an exercise session. Sunday, April 3, 2005 7:21 PM CDT The father daughter weekend is almost over...but it was great! My dad and I had so much fun just the two of us. He doesn't do too well with the night flush and med schedule, there were some moments that we were both half asleep and I can't honestly say that I got the right meds at the right times but so far I seem to be ok...knock on wood. hehe. He played the meanest April fools joke on me. He came into my room on Friday morning and told me Frisbee and Ollie got in a fight and Frisbee was at the vet getting stitches in his tail. He said it was a good sized bite. I got just a little bit upset as he kept going on about the fight but finally he said "just kidding April fools!" I DID NOT think that was funny. So of course I had to get him back. While he was in his office I hollowed out a chocolate macaroon cookie and stuffed the inside with lunch meat. (salami to be exact.) When he came downstairs I offered him the cookie, and of course he took it. The look on his face when he got to the salami center was priceless. It tasted so bad he thought I put dog food in it. (Which actually gives me a good idea for next year! hehe. Wednesday, March 30, 2005 5:56 PM CST Did anyone notice the new banner on my page? It was made by the one and only Joanne! Isn't it beautiful? Thanks so much Joanne! Its just what the page needed!
Saturday, March 26, 2005 2:51 PM CST Ok so what has happened lately? Well a better question would be what hasn't happened lately? I got a little bit of an Easter miracle! On Tuesday I had another blood draw. The agency always knows to send Karen out when they see my name on the draw list. They know by now that she is the only one who can find a vein. We have a routine and we have found the "magic vein" that she can access every time. haha. She's the only one that can find it besides me. She showed me how to start my own IV...I guess we know by now that anything involving my body is going to be a challenge. Dr. Sora called back that night with the results. My muscles were breaking down even faster, the enzymes were up to 1900 and my potassium dropped to 2.5 even though we incresed the supplements. He ordered a draw for the next morning but suggested we get me to the hospital ASAP. I asked if I could stay home one more night since it was already 8:00 and just wait until the morning results came back in. He warned us of all the potential risks (honestly all I heard was "blah blah blah..." hhaha.)But in the end he agreed since there wasn't much to do in the hospital except put me on telemetry. He said he would expect the next test results to be the same and then we would admit me. While my mom was packing I got my dad to call the church office and get my prayer team on it. Well Dr. Sora didn't call back the next morning. You know what they say, no news is good news! My mom put a call in and he finally got back to us around 2. He sounded absolutely shocked. He said I have never seen an improvement this dramatic...My muscle enzymes are down to 1200 and my potassium is up to 3.0 - almost normal!!! Believe in the power of prayer! We are doing another draw on Tuesday to make sure the enzymes continue to come down. He was still a little worried that they are 12 times normal but it is a lot better than 19 times normal!
Monday, March 21, 2005 11:18 AM CST Sorry there hasn't been an update in a while...things have been crazy around here. But guess what? I'm sitting up! For the first time in a week! It feels sooo good to be out of bed. hehe. I saw Dr. McAllister on Tuesday and he did some tests to find out what was causing the sudden onset weakness. He did and EMG in his office (always fun. hehe) and found muscle and nerve involvement typical of a primary dysautonomia. He did some blood work and found that my muscle enzymes were 1100 (normal is 100)so that confirmed that my muscles are breaking down pretty fast.
Monday, March 14, 2005 4:19 PM CST I was looking over my past entries and I noticed that my journal is starting to sound like the weather channel. haha. So I promise this time I won't mention the white stuff. :) I talked to Dr. Glassman today and he wanted to try increasing the erythro to 100mg this time and see if it helps more. The pills we have are 40mg capsules so between splitting the dose and all my other meds and flushes that get mixed my mom is starting to seem like a pharmacist. haha. Thursday, March 10, 2005 8:29 AM CST SPRING IS IN THE AIR!!!
Saturday, March 5, 2005 7:40 PM CST I had every intention of updating earlier but we have been without power all night. Finally the lights(and heat!) are back on. I apologize for not updating yet this week, but things have been kind of rough around here. Honestly I was procrastinating because I really hate to be the bearer of bad news. I really have a hard time saying that things aren't going to well because I always try to be so optimistic. (Don't forget I'm the girl who said I was fine when I was in the middle of anaphalaxis. hehe)
Monday, February 28, 2005 4:00 PM CST I apologize for not updating sooner but I have been in a pretty constant midrin schedule, so it hasn't been as easy to sit up at the computer. Guess what? Its snowing!!! I know this shouldn't be news by now...I have lived here all my life but I still get excited at the first sign of a snowflake. I guess theres just something about everything being all sparkly and white. :)
Wednesday, February 23, 2005 12:58 AM CST Unfortunately the birthday party didn't happen on Sunday. I just wasn't feeling up to it so we thought it would be better to call it off and rest than to overdo and end up in the hospital. But at least all my cousins were healthy and germ free! We still picked up the cake, and I think my dad has been enjoying it a little too much. Its the best smelling cake I've ever had...my goal for next birthday is to eat some. I guess you can't have your cake and eat it too. :) Saturday, February 19, 2005 9:54 AM CST Today has been a good day so far. :) Our little gathering was postponed from last week. Unlce Michael had a cold so he wasn't allowed to come into the house. So everyone is healthy and coming over tomorrow. I get to pick what kind of cake we're having...Its kind of hard to decide since I can't remember what cake tastes like. hehe. I'm thinking of going with the usual millefiori so my Italian family doesn't get mad a me. hehe.
Monday, February 14, 2005 2:34 PM CST Things have been going well here. Its snowing right now, but tomorrow is supposed to be a beautiful 53 degrees! Get out the sunblock. hehe. I might try to go to the park and feed my geese if I'm feeling up to it. Its like they say, if you don't like the weather in new england, wait a minute. Thursday, February 10, 2005 3:38 PM CST Theres not much news to report here. I'm still recovering from the celebrations...I'm still getting quite a few cards in the mail everyday.lol. Thanks for all the encouragement...I feel so loved! I got a mystery letter last night from someone in Pennsylvania, maybe a Calvary missionary? I'm really not sure, but it was the sweetest piece of mail anyone has ever sent me...whoever wrote it has a big heart and an ever bigger love for the Lord. Sunday, February 6, 2005 10:01 AM CST Its official...I'm 21!! As Nana put it, thats going to send my father into "oshkosh". lol. This was the happiest birthday yet and I wanted to thank everyone for their outpouring of love and kindness.(It definitely was an outpouring!) On Wednesday Janis came over with a beautiful song that she WROTE for me. It was about my testimony and seeing God through the pain. The chorus started with Job 42:5...it was absolutely the most beautiful thing I have ever heard and it brought tears to my eyes. We passed the box of tissues around quite a few times after that song.
Monday, January 31, 2005 12:24 AM CST Obviously no one wants to be in the hospital, but I feel like I put so much effort into avoiding going there that I forget to be thankful for the medical care that I have an opportunity to recieve. Trinity Broadcasting Network is laying the foundation for a children's hospital in Haiti. One one of their visits there,the missionaries found sick children lying in a hut, using newspaper for blankets. Hearing this made me feel so priveleged to have access to the medical care we recieve in this country. So even at out bad times, there is still something to thank God for. Thursday, January 27, 2005 9:11 AM CST Sorry its been so long since the last update!As of yesterday I have a new cousin,her name is Hannah, 7 pounds 2 ounces. I'm just waiting for her to come home so I can go see her.
Friday, January 14, 2005 12:18 AM CST The snow from last night is absolutely beautiful...looks like God threw some glitter down from heaven. :)
Saturday, January 8, 2005 12:16 AM CST I realized I have been journaling mostly about all the excitement of the holidays for a while and I haven't mentioned the medical aspect of things for a while. Someone must have been praying for me because my all of my liver enzymes except my BUN have returned to normal. So whoever was praying...THANK YOU ! This week has been pretty low key, we have just been trying to get the bone pain under control. Dr. Sora referred me to a pain specialist, since the pain increased and wasn't responding to oxycontin. The new drugs in my pharmacy are neurontin and hydromorphone (for breakthrough pain). I think that brings it up to 14 meds lol. We are just working on adjusting the hydromorphone dosage so it kills the pain without affecting my breathing too much. Dr. Carruth has us starting with micro doses and working up so my blood pressure doesn't drop too drastically. He was concerned that it was 60/45 in the office, and of course my mom and I were excited that it had gone up. You should have seen the look he gave us. lol. We will be repeating my bone scans soon to see if there are any changes, but Dr. Sora is thinking the cause is most like my blood counts. Otherwise, not too much has gone on around here. Everyone has gone back to school, so it has been pretty quiet with me and my parents. My poor father must be sick of watching the Princess Diaries and the Wizard of Oz...maybe I should let him pick the next movie. ;)
Monday, January 3, 2005 12:34 AM CST HAPPY NEW YEAR!!!
Monday, December 27, 2004 6:46 PM CST I had a wonderful Christmas...and although I didn't get a white Christmas, we have a white December 27th. I didn't make it out to the family gatherings but Dad stayed home with me and we watched Christmas movies all night and had tons of fun on our own. Santa was generous this year, I got a digital camera, The Princess Diaries 2, The Little Mermaid (gotta love it!), some new shoes (how did he know I wore out my mary janes?) ;) and tons of pajamas. The dogs got new collars and toys, and played so much on Christmas that they have been sleeping since. This morning I discovered that Ollie fits in Build a Bear clothes...so I think I will be doing some shopping in the near future. :)
Monday, December 27, 2004 6:46 PM CST I had a wonderful Christmas...and although I didn't get a white Christmas, we have a white December 27th. I didn't make it out to the family gatherings but Dad stayed home with me and we watched Christmas movies all night and had tons of fun on our own. Santa was generous this year, I got a digital camera, The Princess Diaries 2, The Little Mermaid (gotta love it!), some new shoes (how did he know I wore out my mary janes?) ;) and tons of pajamas. The dogs got new collars and toys, and played so much on Christmas that they have been sleeping since. This morning I discovered that Ollie fits in Build a Bear clothes...so I think I will be doing some shopping in the near future. :)
Wednesday, December 22, 2004 11:17 AM CST ** MERRY CHRISTMAS EVE!!! I hope everyone has a blessed holiday. I just wanted to share this little devotional:
Saturday, December 18, 2004 2:23 PM CST "The best way to spread Christmas cheer is singing loud for all to hear!" ~Elf
Sunday, December 12, 2004 1:00 PM CST New Update~ Thanks for the prayers, the radiologist was able to adjust the tube anf get the bleeding under control and Caity was doing ok at home. But you know the saying, when it rains it pours. A little while later the dysatuonomia acted up and she passed out and her dad couldn't get her to wake up. They brought her into the ER Thursday night and she was admitted because she was having trouble maintaining her blood pressure and had a fever. They found that all her counts are low and some liver enzymes are high. She is awake now and doing a little bit better. Thankyou to everyone who is praying...keep it up, its working :)
Monday, December 6, 2004 11:50 AM CST "Announced by all the trumpets of the sky, arrives the snow." ~ Ralph Waldo Emmerson
Friday, December 3, 2004 1:27 PM CST The Post-Thanksgiving Update Thursday December 2, 2004 2:37 PM CDT For all you CHONY people who have been begging me to make a caringbridge page...here it is! At first I wasn't sure if I was ready to share my journey with dysautonomia (try saying that 3 times fast.) I am the type of person who could be in the hospital on a PCA with one of those lovely throw-up buckets, being flushed with adenosine, and tell people I'm feeling fine. But then I realized that sharing my story also gives me an opportunity to share my faith, even when I can't leave the couch. So with that said...check back for updates soon!
Tuesday, November 23, 2004 6:00 PM CDT This page has just been created. Please check back for additional updates.
Click here to go back to the main page.
I spoke with Caitlin's mother a little while ago. Caitlin is hanging in there and and still fighting, as always! Yesterday, her mom got some different body oils and soaps that Caitlin is not allergic to from a health food store, so Caitlin got lots of massages today! Her skin and lips have been so dry, so it was a great change to find some other ways to soothe her skin and body! We're all still praying for that miracle. Caitlin's faith is as strong as always and her mom said that they can definitely feel the prayers being said for them from all across the world - the prayers bring them peace, which is SO important. I mailed Caitlin some photos of nature and sunsets and such that I've taken, with some descriptions so her mom has been reading her those, and posting them all around, which she said they've all been enjoying. When I was telling Caitlin hi and how much I love her and how much I know she's going to get that miracle and how I'm praying for her always, her mom said she was blinking, which means that she agrees. See what I mean? Caitlin Rose is AMAZING and each day I live off of the faith she has given me!!! Please keep those prayers coming so our amazing girl can get that miracle!!! One way or another, she will! Remember, Caitlin has always said that when she gets sicker, it just means she will get a bigger miracle; what a great way to look at it. But of course, what would you expect? This is Caitlin we're talking about!!! And i must add that i know Caitlin would say that this way, she'll have proof that God has healed her, not some medicine or hospital!
Thanks for checking in and leaving the kind, caring, and funny messages in the guestbook! I will be faxing Caitlin and her family the guestbook messages as often/soon as I can! Please keep those prayers coming, and I know Caitlin would want me to ask you all to keep saying prayers for everyone out there in need! And to be grateful for all of the ways you are blessed! I love you all!! Thanks again!
God bless,
Tara
I'm updating to let you know how the AMAZING CAITLIN is doing. I spoke with her father earlier today. While we are all still hoping for, praying for, and expecting the miracle Caitlin has always known will occur - her healing here on Earth - Caitlin is really sick. She has basically been able to hold down nothing more than water in 8 weeks (because of her mastocytosis, she developed severe allergies to her GI medicines) and she was struggling with getting to 90lbs even before this latest flare. Currently, she is basically asleep all day long and, in her father's words, listless. She cannot lift up her head or even really open her eyes. She cannot see anymore. At first it was just blurry, then she could see colors only, and now she cannot see at all. Obviously, this is a very difficult time for her and her family. I could clearly hear the pain in her dad's voice and it just breaks my heart. Of course, it breaks my heart that Caitlin has to suffer so much, but her faith is oh so strong! In my conversation with Caitlin's dad, we just kept on talking about her faith and he repeated so many times how, he would be so terrified in her situation but she is not scared at all. She's at peace and her faith is unwavering. Oh, I love this girl, brings tears of joy to my eyes thinking about how amazing she is! She means the world to me! So many people around the world are praying for Caitlin and are inspired by her strength. I cannot even begin to tell you how much this means to her family and her (although she is not really alert, her father says she can sense what is going on. and i know when i've sent extra prayers her way in the past, she's told me she felt like she was getting extra prayers before i even told her about it!). Anyhow, the pain in her father's voice was a bit lessened when we were discussing all the prayers being said for Caitlin.
And, Caitlin has always reminded me that, even if it's to our initial dismay and confusion, God's decisions are all perfectly timed and He has the perfect plan - plans so great that none of us could think them up. So, while it hurts me to no end to know one of my best friends is so sick, I'm just following her faith, learning from it each and every day, and BELIEVING! Because, that's what Caitlin is all about. I'm so blessed to have her as a friend! Anyhow, her parents and family and friends are right by her side showering her in love and just knowing how faithful she is and how much peace that is bringing her brings me peace too.
To Caitlin: you're gonna get that miracle, I know it. You're my hero and I'm lifting you up in prayer and love and good vibes. I'm sending you strength and good gi vibes. I have your favorite movie, wizard of oz on the tv while doing my homework. I'm with you..i'm right there with you and remember He's holding you and never letting go. You're my life, Caitlin! Love you forever!!! And i always believe.......Xoxoxoxoxox
Love,
Tara
ps- for those of you wondering why Caitlin is not in the hospital or are asking what can be done - she is allergic to basically everything in the hospital. She gets anaphylactic reactions/shock when she comes in contact with these plastics and other materials, which is why it is better for her to be at home. She is more comfortable, and safer, at home than she would be in the hospital. And, as she always reminds me, God is keeping her safe! As far as what can be done...well, good vibes and thoughts sent her way, messages for her and her family, and lots and lots of prayers! thank you all so much!
I am so sorry it has been so long between my updates on Caitlin! She wanted me to let you all know that as much as she'd love to, she won't be able to update regularly for a while. But, have no fear, that's why I'm here :) Anyhow, I spoke with her mom a bit earlier today and here's the latest: The medicine (to treat the mastocytosis) that they were waiting for from Canada finally arrived last week. So far (knock on wood) Caitlin has been on it a few days and has not reacted to it - praise God! She is still on a small dosage as she has to start out at tiny dosages and then go up gradually. But regardless, this is huge. KEEP THOSE PRAYERS COMING!!! The hope is that this medication can stabilize her enough to possibly get back on some of her GI motility meds (without reacting to them) and the other mastocytosis medication(s). Currently her stomach is a mess and she's gone quite a while without any nutrition, really. But she has been going on like this for a while so, as her mom says, it seems that her body is used to hanging onto every calorie that manages to sneak its way in! I think I might know a certain Someone who is helping with that ;) But, Caitlin really needs your prayers. She is very uncomfortable and weak and has very low energy - she can't keep down food and she's trying her best with juices but without her motility meds it's rough. Also, of course she can't take anything for the neuropathy pain, so that is not pleasant. The nighttime is the most miserable for her, because, as her allergist told them, at night, the immune system tries to take a break (when you are supposed to be sleeping). So like, for the same reason why colds get worse at night, etc, her mastocytosis flares up at night. Her mom got some cd's of nature songs to try and make the nightimes more bearable and Caitlin is sleeping in the family room with her mom close by! :) So, I know between her family and God, she is getting taken care of very well! :) But, through all of this, Caitlin's still her sweet and faithful self - she is SUCH an inspiration to me and to the whole world. This girl is just purely amazing and makes my each and every day so much better!
NOW...what can you do, you may ask? PRAY, PRAY, PRAY, PRAY (please)!!!
Please pray that she will NOT have any mast cell reactions to this new medication from Canada and that it will successfully treat her mastocytosis. Please pray that this medication will allow her to get back on whatever medications necessary to stabilize her more (gi motility meds, other mastocytosis treatments, cardiac medications, etc). Please pray that she will be able to keep nutrients/calories/fluids down either by not reacting to her motility meds or food, or just because God is in the miracle business! Please pray that she doesn't have any bad cardiac events either! And, finally, please pray that she will just feel much better overall and not have to be constantly reacting and dealing with puking and neuropathy pain. And most of all, please pray for her comfort! Caitlin has taught me that NOTHING is impossible and that when God is at the wheel, things will turn out perfectly. So while she is pretty miserable now, I know that she is surrounded by her family's love, by God's love, by all of our love, and that that miraculous faith that is so strong inside of her is just getting stronger. Because, as Caitlin always says - the sicker you get, the bigger the miracle you get! OH, how I love this gal!
So let's do our thing and PRAY PRAY PRAY, so Caitlin can get her miracle that she has always known will come!! So please add Caitlin to any prayer lists you know of and spread the world so we can get our favorite gal feeling better! :) Oh, her dad is going to print out the guestbook messages for her, so PLEASE PLEASE PLEASE keep those coming!!! And next time you are outside or moving around or just caught up in the hustle bustle of everyday life, send some of the feelings from those moments over Caitlin's way (even just the feeling of sun on your face or snowflakes touching your tongue hehe). And as Caitlin says, please pray for all of those in need and remember that even through hardship, there are so many things to be grateful for!
I'll try and update sooner next time! My apologies for the delay!
Hugs and much love headed your way!
God bless,
Tara :)
The One With all the Prayers
In the words of our most wonderful Caitlin, ALOHA!
I spoke with Caitlin's mom earlier today and wanted to update you all! Caity's been pretty sick but she and her faith are as amazing as ever! Anyhow, she had a mast cell reaction to the one medication to treat her mastocytosis that Dr. Fishbach (her oncologist) tried her on. Bah! They are now waiting on the only other drug that Dr. Fishbach and the mastocytosis specialist he is working with feel can be used on her. Also, because Caitlin either hast mast cell reactions to her gi motility medications or they worsen her tachycardia and arrythmia, food/calories have been pretty hard for her to keep down (plus she reacts to many foods). So, as Caitlin always says, "I don't mean to sound all grim," but she could use lots of prayers! Which means, *drumroll, please*, there is A LOT we can do to help! Let us lift her and her family up in prayers!
Please pray that she will NOT have any mast cell reactions to this new medication that they are waiting on from Canada and that it will successfully treat her mastocytosis. Please pray that she will be able to keep nutrients/calories/fluids down either by not reacting to her motility meds or food, or just because God is in the miracle business! Please pray that she doesn't have any bad cardiac events either! And, finally, please pray that she will just feel much better overall and not have to be constantly reacting and dealing with puking and neuropathy pain. You see the quote up on her page from Alice in Wonderland about believing in so-called impossible things? Well, Caity has taught me time and time again that NOTHING is impossible and that there is no hurdle that is too high for the power of prayer to overcome! In fact, I had a dream last night that Caitlin was all healed! So let's do our thing so Caitlin can get her miracle that she has always known will come!! So please add Caitlin to any prayer lists you know of and spread the world so we can get our favorite gal feeling better! :)
I will update when I know more! Thank you so much for reading! I also would really appreciate it if you could leave Caitlin a bunch of guestbook entries; I'll call her and read them to her as soon as I can! When she listened to me on the phone this morning, her mom said she was smiling, so I know that she'll be smiling ten times more if I can share messages from you! :) As Caitlin always says, remember to keep all those going through rough times in your prayers and remember to be grateful for what you do have! :)
Love way more than lots,
Tara :)
Thank you to everyone who has been praying for me. The appointment with Dr. Fishbach was wonderful. I love love love him. I wasn't able to get to the office, so he came and chatted with me in my bedroom. He ate some biscotti and we discussed all our options. He feels that time is important and wants to get me on treatment asap. Wow...I'm shocked, he didn't call me a "complicated case" or say there was "nothing more he could do" or back out of my room...he actually wants to help me. There are a few restrictions with these drugs, and I just need to do a 24 hour urine collection and some CT and bone scans before treatment can get started. The scans are tentatively set for Friday morning, and mom is currently out picking up the famous brown bottle, which by the way, was defintiely invented by a guy. hehe. Dr. Fishbach also said that these are strong meds, with the possibility of allergic reactions, and there is a strong chance that my body won't tolerate them. But that also means that there is some chance that they might work. So I am praying like mad that I could beat the odds. We all know how good I am at doing that. ;)
House-call humor: When Dr. Fishbach was leaving, I thanked him for coming and told him to take some biscotti. I meant take some home, but he thought I was asking him to clean up his plate lol. He apologized and walked back to get his dirty plate and bring it into the kitchen. LOL! That's just how down to earth he is.
Other than that I have just been watching movies. Mom and I have been watching Stick It, and The Way We Were. hehe. My netflix queue needs some serious work. And Dad and I have discovered the international channel, and spent yesterda afternoon watching a variety show that ivolved a guy in a sombrero with a stuffed chicken perched on top, and a girl in a lime greem bathing suit and leather boots dancing around a pair or sea lions. Becuase of the language barrier, we had no clue what it could have been about, but it was pretty entertaining. **And did anyone see the new Gilmore Girls last night? What did you think of the new writers? Mom and I definitely noticed a difference. We were a little disappointed by the shortage of Gilmore-isms. But still good.
Healthwise things are still rough. I haven't been able to eat for the past few days becuase my body is just in full blown reaction/pain mode. I don't normally ask for prayers for myself when there are so many other people in need, but if you could please pray that my body will accept some rice tomorrow, the reactions will stop, treament will work, and the scans and tests will give Dr. Fishbach the conclusive results he is looking for to start treatment. Thank you sooo much. Many hugs.
God bless,
xo Caitlin
This has really been one of those weeks in the Caring Bridge world. I recently learned that Christi Thomas went home to Heaven this week. Part of me is rejoicing that after four years she is finally free, but the other part of my heart is broken for her family that she left behind. Being dealt this hand in life is one of those roads you just can't walk alone, and so many people have become like family along the way. The Thomas Team were like that for me, and I know a lot of other people. Christi left such a mark on the world in nine short years, I can't imagine what she could have done if she had a hundred years. Some things are just not fair.
Then this morning loss hit a little closer to home. Ollie passed away around 11:00am. I feel silly even writing about a dog when there are parents mourning the loss of their children, but Ollie was a good friend, and I don't feel right letting his passing go without remembering him. He started a cardiac episode around 2am, and Dad didn't bring him into the vet, since he wasn't honestly that bad and was resting for a few minutes at a time. He got extra Lasix and Mom just sat with him all night. This morning he was still struggling to breathe so we decided it was best to bring him to our vet (a 5 minute drive) instead of driving him 30 minutes to Norwalk. We didn't know if he would make it or not and we felt funny making the decision to put him down without Lara's input, since he is her dog. So Dad brought Ollie to the vet, and they put him in oxygen right away. The vet didn't even want to do xrays until he was breathing easier. Fortunately Lara was planning on coming home tomorrow morning and spending the weekend here anyway, so she just missed her last class and Dad picked her up early. So Dad was on the road getting Lara, and Mom got a phone call from the vet. She said that she went to check on Ollie, ad he just curled up in a little ball and closed his eyes. She said it was very peaceful and he wasn't struggling. They left him like that so Lara could see him. The receptionist called a few minutes later and said she walked by and stopped to look at him for a minute because he just looked so precious and peaceful. I can just picture him rolling in the grass in heaven and chasing butterflies.(his favorite things to do).
Mom said I better watch out because now that she doesn't have Ollie's little round head to kiss, she'll be kissing mine all the time. Those will be hard shoes to fill, he had the most perfect little tennis ball-shaped head. :)
I talked to the most wonderful Tara yesterday, which made my day. Who knew I'm not the only one who likes brussel sprouts? hehe. I also talked to Lizzi, probably about 6 times. She called in between errands and spare time at work. The last thing I want is for her to be worrying about me when she has such a full plate, but its kind of hard to avoid my best friend. hehe. And Heather, I was so bummed when I saw that I missed your IM, I fell asleep on my computer...becuase I'm cool like that. I really want to talk to you though, it's been way to long, so hopefully I'll catch you soon. If not, give me a call.
Dr. Fishbach (oncologsit) will be talking with the mast cell specialist today and we should hear from him this afternoon. With everything going on I completely forgot about that until Tara reminded me. I am really hopeful about this. I just can't wait to get started on treatment, because honestly, the world needs some good news.
In the medical news, I am still hanging in there. Last night was rough, but my bone pain is finally under control. And as much as it hurts, its easier than mast cell symptoms because pain can't really do any damage. This morning my urine tested positive for acidosis and 160 mg/dL ketones. When it was at 60 in August 2005 Dr. Sora wanted to start dialysis, but then a few days later it started going down on its own which he said he couldn't explain why and he was shocked. But of course I know who did it. ;) God has proven he is in the acidosis healing buisness, so I know it will be taken care of this time too. And honestly I'm loking at this as a good thing. No, I'm not crazy but this could mean that some of the yuckiness is from the acdosis and hopefully not all from the mast cells. :)
Dr. Rockwell gave me the option of being admitted, but he also said that there's nothing he could offer me at the hospital, and if I'm more comfortable at home he doesn't blame me for staying here. In a perfect world I could get dialysis, fluids, and TPN...wait a second, how is that a perfect world? hehe. Honestly I'm not the least bit worried about all of this, its just one more detour in the road to recovery. Someone has to be that one in a million miracle that gets cured, so why not me? Heck, it will be me. I've been told sooo many times by the medical community that "there are no options left" or "you can't survive" that I just kind of laugh it off now. The first time my parents and my sister and I sat in the hospital all night crying and now I'm just like "Yeah, thats what you say. Just wait and see." hehe. God has been faithful with the miracles and I trust Him to bring me through this just like everything else. Ok enough medical drama, now on to more interesting stuff. Unfortunately I slept through Gilmore Girls last night...and Mom and I totally don't remember the finale where Lorelai ended up with Christopher...we can't wait till next week!
Good news of the day:
1. I can sit up on my own today. (Last night I tried to and kind of just flopped over and Mom had to help me) Not so today.
2. I spent the morning eating. I ate a whole bowl full of rice, which is more than I have eaten in the past 4 or 5 days.
3. Ollie came on my bed and cuddled with me for a little while. We both needed it. I missed him soo much, but with the bone pain I couldn't have him running around on top of me. Not so today.
4. I felt up to playing a few minutes to the Bible Challenge DVD game with Mom. Haha its pretty funny, whenever I play a board game with someone they aways say "I don't know why we bother keeping score, you always win." Its true though, I don't know what it is but since I've been really little I have a reputation for winning board games. It doesn't matter what game...kinda strange.
5. The mast cell doctor will be back in her office on Friday and Dr. Fishbach has a phone appointment set up with her for that morning. I think Dad just emailed him with an update so hoepfully treatment can get started soon.
So thats whats been going on around here. I haven't felt p to checking in on any friends, but I know there are several kids that need to be remembered in your prayers. And I'm wayy behind on my gurstbook signing, please forgive me. I should have done that first, before my finger strength ran out. Hopefully I'll get to that soon. And I will really try to update again either tomorrow of Friday.
"This is the day that the LORD has made. Let us rejoice and be glad in it." Psalm 118:24
Mom met with Dr. Fishback on Thursday. She tape recorded the conversation and he sounded really nice. He knows enough about mast cells to treat me, and he is willing to contact a specialist to work with. He said ideally we could do bone marrow testing, liver and spleen biopsies, and all that stuff, but in reality the tests would have a greater risk than benefit. He said all my bloodwork gives us enough information to possibly just start treatment. He thinks that since the case is pretty severe, Gleevec (a leukemia drug) might be the best choice right now. But he wants to talk to the experts and see me before we start any treatment. Mom said he's fresh out of med school, but looks more like fresh out of high school. lol. A couple of his masto facts were wayyy off, but he knows more than anyone else around here. He seemed really nice, even said hi to me in the tape recorder and introduced himself. So Dad emailed him the name of a specialist so we're just waiting on that.
I have been stable enough without benadryl. *grin* Dr. Rockwell said I could take it around the clock to stay comfortable, but since I'm already up to 75mg, we don't want me getting any more resistant to it. I'm pretty much just in a constant state of what he calls pre-anaphylaxis. Its mostly blood pressure swings, a little bit of throat/tounge swelling, and what a friend calls "the gonna hit the floor feeling." The best way to describe it is that feeling you have right before you pass out, accompanied by a hot flush. Its not progressing beyond that, so as long as I can learn to deal with that I'm staying off the benadryl. Yesterday I developed reactions to brussel sprouts and cauliflower so I am officially on a diet of....rice and water. mmmmm. lol. But no complaints, Although I will definitely be glad to get this rice taste out of my mouth. There is a definite relation between my tachycardia and throwing up, I feel silly saying I miss the feeding tube lol.
Mom has been feeling pretty bad that there's nothing she can do, so yesterday she went out and bought some pumpkins and chrysanthemums to decorate the back porch that I can see from the couch. And today she went to the library, I don't feel upto reading, but she's making sure I have everything I could want. :) We both want me to get better for the Apple Festival. We can't miss that and its coming up! At least it gives us an excuse to buy pie. :)
I know things don't sound that great here, but I know God didn't bring me this far to leave me standed now. This really makes me thankful for all the little things, like the squirels that I'm watching right now, all the moments that I feel good, all the incredible people I have supporting me...
This week I got to talk to the wonderful Tara (visit/tarabara) which completely made my day. Seriously this girl is amazing, and she could use some prayers too. And I went on AIM for a few minutes with my amazing friend Heather, which also made me feel tons better. What would I do without friends? There are soo many kids that need prayers right now...what is it with this week? Both Jake (la/jakeowen) and Rachel (mn/rachelhansen) had not-so-great scans, my friend Diana (tx/diana)and Jaye (ok/champbear) are in the hospital, and Christi (christithomas.blogspot.com) is putting up an incredible fight. Well this is turning into a small novel, I'll try to update again in the next day or two and not leave you hanging. Thank you sooo mcuh for all the prayers and guestbook messages!
God bless,
xo cait
I have my appointment with the oncologist, Dr. Fishback (yes mom and I love the name) on Thursday. I don't know if I'll be able to go since right now I can't sit up long enough to get out to the car. Mom is thinking of going and giving the history and getting things started at least. He probably wouldn't start treatment right away anyway, and its probably best that I don't start any new meds until I'm out of the woods with the reactions.
I talked to Lizzi yesterday...she got a job at home depot. hehe. She's the last person I would think of working there. I have been trying not to talk to her too much because if she figures out that I'm not doing great, knowing her she'll be on the next plane to Connecticut. Mom and I are having fun. We got tonnns of DVDs. Yesterday she rented Fiddler on the Roof, I've never seen the real thing, only Dance Company and community theater productions. hehe. And we have the original Pipi Longstocking up next on our Netflix queue, so we're pretty excited about that. Being home with her all day is a killer though. We usually laugh about every 10 seconds, which my body is just not up for right now. hehe. And then when we try to stop laughing of course we just end up laughing more. Throughout the day funny little things happen, and I'll think "I have to blog about that." But by the time I get to the computer I forget them. If my brain worked this journal would be a whole lot better, but unfortunately you're stuck with my ramblings. :)
Please say a prayer for Christi and her family, they are so amazing. And the super cool Tara. Thank you sooo much for all the prayers and guestbook messages. When things get tough its soo nice to know that so many people out there are praying me through this.
God bless,
xo Cait
I have decided that my mom needs to be sainted. I'm so glad I have such a great family, they are making this so much easier. I'm trying not to laugh too much, since it gets my heart rate up, but it's hard not to. Last night Mom and I were trying to find something on tv and there was nothing on. We were joking that we would have to choose between the granny style underwear special on QVC, "the journey of the human fetus" on the Discovery Channel, and "the biography of Joseph Stalin" on the history channel. hehe. We ended up watching a Gilmore Girls DVD. Those always make us laugh too since they are soo much like us. A lot of the lines are even stuff we've said. We think it's kind of creepy, so when I get better we're going to find a diner to frequent. hehe.
Frisbee has not left the side of the couch this week. He puts his head on the couch and licks my arm. Yesterday I sat up for a few minutes, trying to get in the wheelchair to get to the bathroom, and Frisbee stuck his nose up my pants leg and and started licking my leg. I guess I'm all set in the bathing department. hehe. I haven't been up to cuddling with Ollie so Mom picks him up and makes an "I heart you" sign with his paw and then I make it back at him. This morning I made the sign at him and his ears perked up and he wagged his tail. Cuteness.
Thank you soo much for all your prayers. You are all such a blessing. Please also say a prayer for Tara and Christi, who are having rough times now too. Look forward to an update saying I'm all better! :)
God bless,
xo Caitlin
That quote pretty much sums up how the last two days have been. I didn't want to update until I had a bunch of good news, but I know people would be worried about me if I didn't update. So if you just want the happy news, check back in a day or two. :)
Tuesday actually wasn't a terrible day, until that night. I took a sip of water and started going into anaphylaxis from in. Who can be allergic to water?? (We're thinking the mast cells didn't like it because it was really cold). I didn't have too much swelling but I tured a kind of pinkish shade and was having blood pressure changes and that awful feeling you get from anaphylaxing. It took 75 mg of Benadryl to get it under control (max dose is 50) and then mom just kind of hugged me until it was over.
Yesterday I just stayed on bendaryl all day just so it would not happen again. I didn't feel much like eating yesterday or today, so I'm just taking sips of water trying to stay hydrated. I'm officially off all my meds, since I have reacted to all of them. So now it's just God keeping everything working...which I think is pretty cool. Last night was better as there were no reactions, but my pain was pretty bad, and without pain meds it took a while to finally get comfortable. Mom sat on the end of the couch rubbing my legs for hours. Have I mentioned what a great Mom I have? She even wshed my feet yesterday, which really made my day. Talk about unconditional love. hehe.
Now on to the GOOD NEWS:
I am actually feeling a little better today. I still have the pinkish coloring, but my bone pain is milder. I was taking benadryl every four hours, but right now I have not had any in me for about an hour!! :) I can't wait to come on here and post that I have been without it for 24 hours. :)
So keep the prayers coming. I can feel God's hand at work in this and I know he has good things coming. The pastor I listen to on TV, Charles Stanley, once gave a message about "The greater the trial, the bigger the blessing." I'm ready for the blessing now! hehe. I just know I am going to get better from this, so all the worriers out there...stop it! My cariologist also found a new med that will help my heart. Now I just need to not be allergic to it. Thank you for all the prayers, and also pray for Tara and Christi who are also having rough times.
God is good...All the time. :)
xo Caitlin
So now the quest is on to find something to keep my heart rate down. Dr. Raza will be talking with the cardiologist at Columbia who treated me for three years, diagnosed the arrythmia, and mapped my heart. So if anyone can come up with a solution he can. Dr. Rockwell (allergist/immunologist) said there isn't really anything he can offer me other than benadryl to treat the mast cell crisis. But the good news is I'm feeling fairly stable today. As long as I lay down and don't move much I can keep my heart rate under 150 and my bp about 60/40. I can feel the arrythmia, but its not too uncomfortable as long as my heart rate doesn't go over 220ish, which only happens when I sit up. Gosh, thats a lot of information, it sounded better in my head, I just am trying to assure all the worriers out there that I'll be alright. So stop worrying!
hehe.
Now on to the GOOD NEWS. I have an appointment to see Dr. Fishback on the 14th. He's an oncologist and although he has never treated mastocytosis, he is familiar with it, and he has done some work with mast cell leukemia, so he's familiar with the best drugs for mast cells. Only 10 days to go!
Its funny, yesterday in the midst of all the drama of doctors and mast cells, everything just seemed so peaceful. Like I just know its going to be ok. Its like in psalm 46 when God says, "Be still and know that I am God." And laying here, just knowing that is enough. Sounds cheesy, but its true.
Ok enough rambling, please say a prayer for Christi, and for the crocodile hunter's family. My heart goes out to them. And if you don't mind, maybe you could say a prayer that God will work out all this mast cell stuff. Even if you don't believe, just try praying...becuase I have a feeling you'll be surprised. :)
xoCaitlin
I was planning on going to the farmers market today with Mom but I always forget that it is a pretty big ordeal to get me and all my stuff to the car. After I got all dressed and ready my meds all had to be packed up in my travel bag, and then I had to get pillows and a bucket and then get the wheelchair and all my stuff and me out to the car...So after I got dressed I just decided to change back into my pajamas and stay home. That has been happening more often than not lately. By the time I get dressed I am too tired to go out so I end up just staying home. But it was a good thing since Ollie was in desperate need of some attention and I ended up cuddling with him for about 2 hours while he slept on my chest. Of course he wanted to be in the corner of the loveseat facing away from the TV, so I balanced m portable DVD player on the arm of the loveseat while we cuddled.
In the medical front, this week has been...interesting. I called Dr. Sora's office for a perscription refill and his nurse said he was at the hospital and she would leave the message for Dr. Raza. Well, it never got called in and three days later I called back and the nurse said he was at the hospital PERMANENTLY. He left the practice to become a hospitalist. Umm yeah. I just talked to him a couple weeks ago and he said nothing about it. So now I have to find a new primary doctor. Lovely, huh? I know one who I almost went to before who is willing to take my case (thank God!)so I am trying to get an appointment with him. Theres a log wait to get in, so now I'm just trying to get all my records together to make things a little easier for him.
Today hasn't been the best day symptom wise...the 2 H's - heart and headache, but hopefully tomorrow will be better!
Please say a prayer for Christi, who is facing what no one should ever have to go through, she is strong beyond her years!
I hope everyone is doing well with this storm coming up. Thanks for checking in!
God bless,
xo Cait
Prayer Requests
Jaye - in the hospital
Jake - pray for healing and a miracle
Sharon - recently diagnosed with cancer
Sean - healing for his arm
Rebecca - guidance for doctors and seizures to stop
Mary - beginning life without her daughter
Tara - she needs to be healed because she's just the best!
Pam - successful surgery and healing
Nikki - safe travel
(email me if you have a request you would like added to the list)
I'll do more of an update tomorrow...in a nutshell, its quiet, and we're bored! hehe.
xo Caitlin
Prayer Requests
Jaye - in the hospital
Jake - pray for healing and a miracle
Sharon - recently diagnosed with cancer
Sean - healing for his arm
Rebecca - guidance for doctors and seizures to stop
Mary - beginning life without her daughter
Tara - she needs to be healed because she's just the best!
Pam - successful surgery and healing
Christi - needs a miracle!
(email me if you have a request you would like added to the list)
Dear Lara,
How did 18 years go by faster than an afternoon in Sephora? I remember the day Dad took me to the hospital to meet you. Mom yelled at him because he lost my hairbrush and hadn't brushed my hair in three days. And he also put the same outfit back on me every morning. And even though I look like I've been living on the streets in those first pictures of us together, the only thing I notice is that huge grin on my face. And I don't think I've stopped grinning since then.
We spent so many years playing servant girl, space aliens, ninja turtles, and daring each other to eat bullion cubes, that the house just seems wayyy to quiet this morning. It going to be a big adjustment living in a different zip code than my partner in crime. You brought me out of my shell, introduced me to Abercrombie, and taught me that eyeliner is cool, and pink overalls are definitely not.
I never asked for a little sister, but you have been the best gift I ever recieved. I promise to take good care of my nephew Ollie, and I'll try to keep the 'rents in line. But don't be surprised if you come home and find me walking around in Keds and a skirt thats 2 sizes too big, because I can't promise that my outfits will always match without you here.
Love ya "to the moon and back times infinity"
KK
-----------------------------------------------------------
If you didn't figure it out from the letter, Mom and Dad are dropping Lara off at College today. Its so quiet here, you could hear a pin drop. hehe. Aunt Ronnie is staying with me and we're having lots of fun. This morning we watched Stepmom and The Sisterhood of the Traveling Pants. And of course The Soup. I looove that show. hehe. Now its nap time, but I slept pretty late so I'm awake now. I learned from Aunt Ronnie that pickle cravings run in the family. I have an uncle who eats a whole jar at a time.And my Dad used to do the same thing. Who knew?
Lizzi's mom is coming back from Missouri today...so that means that Lara and Liz are both being unleashed into the world on the same day...and I don't think the world is ready! hehe. So if there is some kind of implosion or natural disaster, you know why! hehe. I hope everyone is doing well and having a great weekend!
Hugs and God bless,
xo Cait
Prayer Requests
Jaye - in the hospital
Jake - pray for healing and a miracle
Sharon - recently diagnosed with cancer
Sean - healing for his arm
Rebecca - guidance for doctors and seizures to stop
Mary - beginning life without her daughter
Tara - she needs to be healed because she's just the best!
Pam - successful surgery and healing
(email me if you have a request you would like added to the list)
I meant to update yesterday but I turned on my computer to find a lovely surprise of 9 trojan viruses. After the lecture from Dad I'm still not quite sure what a Trojan is, but if its anything like it's namesake, the wooden horse, I'm glad Dad got them off.
Then today I clicked on the MSN news link and saw this article. What kind of crazy world do we live in where scientists can just decide that Pluto is not a planet anymore? Hehe. Now we can vote to take away something's status because it's small? Hmmm...not liking that one. lol. At least I'm glad I saw it while it was still a planet. And its still listed in my star's and planet's book as a planet, so I'm still calling it a planet.
Not much else going on around here. Seriously I need to start doing something interesting so at least I have something to journal about. Yesterday I played the piano for quite a while, I actually played until I was shaking, so I was pretty pleased that I was able to keep going that long. And then this morning Mom and I happened to notice that the china pattern on our kitchen dishes is called "Hooker's Fruit." Lol. How classy. And this is one of the sets that I have the option of inheriting when I get my own house someday. I think I'll pass on those. hehe.
Healthwise I have been feeling "alright". This week has been really up and down mast cell wise. One minute I'll feel pretty good and then 5 minutes later I'll be sprawled out on the couch. I seriously can't wait to get to see this new oncologist and get on some stabilizers. Seriously - Can. Not. Wait.
I am overdue on some thank yous...I want to thank Nikki for the amazing CD...I loove it! Its the perfect thing to get me in a fun mood when I'm not feeling well. And I want to thank Ashley for supporting me in everything mast cell related. You are a wealth of information and I am so glad to have someone who understands all this craziness! Thanks for passing on all your knowledge and bearing with my crazy questions! So thats whats happening in my little corner of the world. If you have a chance stop by Christi's site and say a prayer for her, she has scans coming up.
God bless,
xo C
Yesterday I went to my cousin Michaela's birthday party. And I think I had more fun than all the six year olds. It was soo good to get out,the weather was perfect and I really enjoyed sitting outside catching up with all the family. Although it was pretty funny when some guy came up to me anf gave me a huge hug, and kissed me all over the top of my head. He was saying stuff like "Great to see you! You look so good! How are ya kid?!" And of course I said stuff like "Great to see you too! Its been soo long!" And I had absolutely no clue who he was. hehe. After he walked away I turned asked Lara if she recognized him and she said to me "Who was that guy?" Apparently she didn't have a clue either. hehe. Don't you just love it when that happens? lol.
It was a pretty fun party, Luau theme, kids running around in grass skirts with water ballons, parents yelling "Keep the water away from the adults!", a pinata, and a huuuuge jumping castle that looked like a giant elephant, complete with a palm tree slide on the side. It was the hit of the party until it blew a fuse, spontaneously deflated, and collapsed on about a dozen kids. Fortunately they all got out in a panic as it was going down. But then one of the neighbors said there was still somebody inside. Then I saw Aunt Judy clawing her way out. She dove in as it was collapsing to make sure no kids were trapped. So, she pretty much saved the day. hehe. However she did say it was reaaallly heavy, and pretty scary. Fortunately the fuse was fixed and the thing re-inflated itself in less than 10 seconds. And the kids didn't seem to care, as they were back in it the second it went back up. So that was the drama for the day.
Healthwise I did really well. I only had to go lay down on the couch once while I was waiting for my midodrine to kick in. And I didn't mention it on here but last week I had a mast cell reaction when I took my prednisone. Yeah. Big, big problem. Dr. Rockwell said it's pretty unlikely that someone would be allergic to prednisone, but then again with me, you never know. But he switched me over to solumedrol ,which is basically the same thing, just a little stronger, and I tried a microdose of that and it seems to be working well. I'm just hoping/praying that it will still be alright when I have to take a whole dose.
So that was my weekend in a nut shell. I realized when I redid my page I never put the prayer list back in, and I have been kicking myself about it for the past week. So here it is at the bottom of the journal. I hope everyone's having a good weekend.
God bless,
xo Caitlin
Prayer Requests
Jaye - in the hospital
Jake - pray for healing and a miracle
Sharon - recently diagnosed with cancer
Sean - healing for his arm
Rebecca - guidance for doctors and seizures to stop
Mary - beginning life without her daughter
Tara - she needs to be healed because she's just the best!
Pam - successful surgery and healing
(email me if you have a request you would like added to the list)
However yesterday was quite the busy day. I officially said goodbye to Lizzi, as she's moving out to Missouri tomorrow. I was afraid it was going to be one of those super sad, emotional, sob-fest kind of goodbyes, but we had soo much fun, other than watching her drive away, it really was the perfect day. We hung around here for a while while Lizzi ate her last hot dog (she has a hot dog for lunch almost every time she comes over) and then I gave her a framed scrapbook page I made with pictures of us over the past 8 years. Surpisingly, we made it through that without crying. hehe. Then we decided to go "galavanting" (our word for driving around doing nothing) one last time. So we hit all the beaches. We started off at Pennfield Beach, there is a vacant lot at the end of all the summer-rental beach houses, and w like to park there and just look at the water. We rolled down the windows and the beachy smell and misty breeze came in, it was just perfect. We staye there for quite a while and it was just one of those moments that even when you're living it, you know you're going to remember it for the rest of your life. It sounds cheesy I know, but its true.
Then we did a drive by of Jennings Beach and Compo Beach. Compo was our old hangout in highschool (before we discovered the vacant lot at Pennfield) and we hadn't been there in sooo long. I had definitely gotten a lot more popular since we;d been there. It used to be practically empty and now they have lifeguards and bike paths and everything. All our beach bumming took about two hours, so after that we headed home since I was pretty tired. We made our goodbyes pretty quick, just a few tears and a buch of hugs. I'm pretty proud of myself, I only cried one tear lol. But it was pretty hard to watch her drive down the street knowing I won't see her again for a looong time.
I'm so blessed to have a friend like Liz, after I got sick my other friends couldn't even stand to be in the house with all the medical equipment, and then there was Liz, who wouldn't leave. hehe. She has pushed my wheelchair on the side of the highway, taken me to a diner at 3:00 am so I wouldn't miss prom night, and braved the hospital cafeteria so she could stay with me instead of going home for dinner. (side note: if you're ever at St. Vincent's do NOT get the chicken marsala.) I could go on for days about how great she is and how much I'll miss her...but I'll spare you the tangent. hehe.
This morning I have just been resting up and working on a painting. I am absolutely in love with watercolor pencils. I used to be an acrylics girl but they are just to messy to deal with when you're not feeling well. But watercolor pencils come out almost identical to watercolor paint, with virtually no mess. Which means...perfect for painting in bed. hehe. So thats what I've been up to.
I haven't had a chance to check on any of my friends today but please say a prayer for Jake, and Diana, as she gets ready to move in to college. :) I'm sure this week will be more interesting and I'll update again soon. I hope everyone is doing well!
God bless,
xo Caitlin
Not much going on here these past few days (sorry I'm so boring). Healthwise I'm doing alright, my kidney function is finally pretty close to normal after that execrable virus. Other than that I'm in a holding pattern with my meds until I get in to see the new oncologist. This guy is actually willing to work with the mast cell issues, for which I am eternally grateful. Mastocytosis is so rare, its hard to find a doctor who will be in the same room with "such a complicated case". The only problem is that there's a heck of a wait to get into this guy. I'm waiting for a call back from his scheduler to see when I can get in.
On a happy note, Lizzi comes back from her mission trip in Virgina on Saturday. On a sad note she moves to Missouri on Tuesday. I just can't believe that I will only be seeing her one more time before Christmas break. We've been inseperable since I got sick, and this long distance friendship is definitely going to be an adjustment. Friends like that just don't come around too often. I'm not saying we still won't be close, it's just that there is going to be a capacious Liz-shaped hole in Connecticut.
I was going to go to the Farmer's Market today with Mom, but after I got my hair washed I just felt more like going back to bed than going out. But I have been having tons of fun laying on the porch swing reading. I got a new book, Blue Like Jazz, and its pretty good. It's completely impossible to describe, its kind of like a testimony, or as the cover says "non-religious thoughts on Christian spirituality. If that makes any sense. hehe.
Funny story of the day:
Yesterday I did some shopping online. I made a donation/ordered stuff from St. Jude, and got a chronological bible and a few books from ChristianBook.com.
Today the credit card company called mom to say there had been some suspicious activity on her card. They said "Charges were made to St. Jude Children's Hospital and Christian Book Distributors. We want to verify that those were made by you and are not identity theft."
I had to laugh at that one. Really laugh. If someone stole a credit card do you seriously think they would use it to donate to a children's hospital and buy a Bible? Suspicious activity? Thats like the least suspicious activity there could be on a credit card. hehe. Unless Robin Hood stole my identity...like a "steal from the rich and give to the poor" type of thing.
Please say a prayer for all the kids who are in need...expecially my wonderful friend Tara!
God bless,
xo Cait
Sorry for the delay in updates. I have finally beat that nasty GI virus (which also ended up affecting my heartrate and kidney funtion.) But since there was really nothing to do for it except wait it out, with some groveling, begging and pleading, I was able to handle everything outpatient. :) And the best news is...The power is back on! It went off on Friday around 7 and was out until Saturday night. Mom, Dad, and I went to Aunt Ronnie and Uncle Michael's house while Lara and Ollie went to a friend's house. I always love staying at Aunt Ronnie and Uncle Michalel's, seriously it's like a resort. While I thuroughly enjoyed eating my cereal out of Lenox china, under a giant chandelier (Mom and I looked for less fancy china, but couldn't find any, so I was super careful since the darn bowl looked oh-so-delicate), Dad and Uncle Michael spent the evening in the hot tub. I personally thought they were crazy since it was a hundred degrees outside. The only bad news was we couldn't bring Frisbee. I begged Mom to let him come, but we were "guests", and I hate to say it but Frisbee's housetraining skills have become less impressive in his old age. And since the whole downstairs of Aunt Ronnie's house has marble floors, and marble floors are near impossible to clean (they have to be buffed)...that meant my little critter had to stay home. I was real worried about him, but he was fine. We let him out before we left and he fell asleep on the sidewalk, where it was hot enough to fry an egg. hehe. Aparently he's not too intelligent in his old age either.
August 4th marked six years that I have been sick. Six. I used to feel like the same person I was before I got sick, and I guess in some ways I still do, but the farther out itgets, the more "before dysautonomia" seems like another lifetime. Maybe even someone elses lifetime. My old normal has been relpaced by a completely different normal. And it seems so normal to me now, that I didn't even realize that other people don't see it that way until a friend of Lara's came over and stared at our drinking straw receptacle with a strange look on her face. Do you mean to tell me that you don't have one of these too?
And then I realized that I had become so used to looking at things like this:
and this:
that they seem more normal to me than "normal" does. I honestly can't remember what it truly felt like to not have a house full of medical supplies or IV poles or wheelchairs. Maybe thats because I never really stopped to appreciate life before I got sick...
My old normal consisted of running from school to dance class to choir to church, to animal care at the Audubon Society... Yes, I was happy as a clam, yes I was thankful for everything I had, but I never realized how good I had it. I can remember one day when I was at tutoring, the bus came late to pick up the kids, which in turn made me 15 minutes late for dance class. I remember frantically trying to stretch in the car, worrying that I had missed the whole warm up. Now I realize how crazy that sounds. I would give anything to be late to dance class, because that would mean I would be strong enough to dance. I remember staying up until 1:00 AM working on a theme paper for school. I was so frustrated with it at the time, but now I would give anything to be able to stay up that late. Why am I saying all this? Because I have realized one of the most important things I have learned over the past 6 years is to count your blessings. Some may not think I am as forunate as I was August of 2000, but I am just as happy. I don't need to sing at Carnegie Hall to feel like I have accomplished something. Being able to sing without passing out feels just as good. I don't need to be at the dace studio 5 days out of he week to be happy. Feeling well enough to sepnd an hour at the park is just as rewarding. My point? Normal is just a setting on the washing machine. It's all a matter of perspective. Maybe you think I'm crazy, but sick as I am I am happy. I am thankful for every second of every day. And I have realized that there are just as many blessings in my new "normal" as there were in my old "normal."
God bless,
xo Caitlin
Sorry for not updating yet this week, but I have spent most of it curled up in a ball. hehe. The Fireman's Carnival was over the weekend and Mom, Dad, and I were planning to go, but by Saturday evening it was just so darn hot I didn't feel like being out in that weather. Plus this week has been kinda crummy GI-wise anyway. Mom and Lara had a virsu, so we're hoping thats all I have. I went to get scans done today, but to make a long story short there was some medical red tape (don't you just love that? grr) between the doctors office and the insurance that didn't get worked out. We waited for about 3 hours in the radiology department but the scan never happened. Personally after three hours in the sub-zero waiting room temperatures (seriously it was like eight below in there) I was ready to leave. Thankfully my super amazing Dad didn't mind rubbing my legs the whole time to help keep me warm, since cold really makes the neuropathy pain worse. So we're going back at 3 tomorrow and hopefully everything will be all figured out by then with insurance. We're just hoping its not an appendix problem, just a nasty GI virus. I think today was the first time I got stared at in the waiting room not for looking sick, but for what I was wearing. Since I wasn't really feeling up to getting dressed I went out in my pajamas, which consisted of blue pants with cherries all over them, a bright green shirt with different color words and flowers embroidered on it, and my pink Northeastern baseball cap. hehe. Thankfully I decided to change out of my Napoleon Dynamite "Liger" T-shirt. LoL.And I also left the rhinestone sunglasses in the car.
Well I'm going to get going, since I feel the need to curl up again. Don't forget to stop by Diana's Page, and send her some prayers and get well wishes, as she had shunt surgery today. I hope everyone is feeling good and having a great day!
God bless,
xo Caitlin
The FedEx truck pulled up Saturday afternoon with my Ambrotose!! yay! Can you tell how excited I am to start taking those glyconutrients? hehe. Actually its more hopeful than excited. If I can tolerate the Ambrotose, the benefits would be amazing. I had to wait until today to try it since Dr. Sora wasn't on call over the weekend. Now I'm kind of putting it off until I am feeling a little more like my baseline, I just have soo much riding on this that I want to give it every possible fair chance to work. And if I take it during a crash, I am more likely to have a reaction. So I think tomorrow will be the day!
The party at Janis's was everything I hoped it would be and more. It was so good to see so many old friends again. No matter what happened, it couldn't ruin the day. When it started downpouring during the afternoon, I was soo glad we didn't have it at the beach. And I took prednisone beforehand so I wouldn't have problems with mast cells there. It was kind of funny, because about half an hour after I took the prednisone, I got a dizzy, hot, funky kind of feeling. I thought it was a mast cell attack at first, although it felt similar but different, and I was pretty annoyed because that was the last thing I wanted to happen. It was the same feeling I got on the way to Aunt Judy's picnic after I premedicated. I was getting pretty annoyed, thinking that every time I try to prevent a mast cell attack I end up having one. So I took more prednisone. And a half hour later it happened again. So after that dose I figured it out that it is just a weird temporary reaction I get when the prednisone starts kicking in. Which crazy as it sounds, was a huge relief. I'd much rather feel sick from meds, as opposed to actually being sick. Because that means the meds are working and I acutally kept them down, as opposed to the meds not working and me heading for a crash. If that makes any sense at all. hehe.
So on to the party. The time we spent together as a youth group was just so compeletely blessed, and honestly, after that time was over, I didn't know if it could ever be recreated. Sure a few people were made conspicuous by their absence, but for those of us who were there, we picked up right where we left off. It was really funny, after 5 minuted we ended up socializing in the same little bunches we used to break into. We didn't even start singing until 8:30, we got so busy talking. There wasn't one specific thing that stood out, we were just really enjoying all being together again. It made me realize that being worn out from all the phone calls and planning was totally worth it. I stayed out 3 1/2 hours and had a really hard time making the "responsible" choice to go home. I was all cuddled up in an armchair with my purple pillow, and Liz kept saying she could really tell that I needed to go home. But of couse I pushed it up until the last possible second, and I got to stay for two songs. I just wanted to be there for a little bit of the worship. The party ended up going on until after midnight. I felt a little bit like Cinderella having to leave early. Nobody wanted to leave in fact, so we are thinking of making this a bi-annual thing. I'll spare you any more rambling, since a picture's worth a thousand words:
God is Good...All the time.
The Dads hanging out in the kitchen
How could you not be happy when you have cake and Jesus?
Some things never change.
So that was my weekend. I'm just resting up now...the napping has been nice since Mom and Lara have been out college dorm shopping, so it has been quiet here. I know pretty soon though I will be thinking its too quiet! hehe. This morning Lara stopped at the front window and I could tell she was completely in awe. Then she said, "You have to come see this! There's like a garbage bus outside!" Mom was like, "ummm Lar...thats the recycling tuck. Don't tell me you've never seen one before." Haha! Gosh I'm going to miss that kid!
Don't forget to say a prayer for all the kids in need, and THANK GOD for you blessings!
xo Caitlin
Lizzi came over yesterday and we exchanged some of our stuff back that we had amassed over the years. I had quite and interesting collection of her parafinalia, including a graphing calculator, a small Christmas tree, and a 7 year old bottle of blue nail polish that supposedly changes color with your mood. We worked a little bit on our party planning, we decided what sandwiches we are going to order, and then I made some calls to people who didn't RSVP. Its not going to be a huge crowd, but there are definitely enough people coming. There's a few who I would really like it if they could show up, but they really don't seem very enthralled with the idea. I might have to resort to groveling...
For the medical news, Dr. Sora decided that I could try a prednisone decrease today. What he doesn't know is that I took it upon mself to start my taper last week. Which would mean that I will only be on 10mg by Saturday, so I'm praying thats enough to hold me over through the party. I guess this is a good thing, better to get off them before I have cleaned every grocery store in the county out of pickles. Last night I was sitting at the counter with my "Economy Size" jar of Kosher Dills, when Dad came down and made a remark about how many pickles I had been eating lately. He looked at me suspisciously and proceeded to ask me if I was pregnant. Real classy huh? (And this is coming from the guy who implemented the 'no dating until you're out of high school' rule).
Now on to the super exciting news. My nurse care manager, D.C. called this week all excited. She found a product called Ambrotose, it is a form of glyconutrients that, if I don't react to it, is almost guaranteed to put some weight on me. It is made by the same company that makes a suppement for brain tumors that a few CB kids have taken. The ambrotose has even been used sucessfully in end stage cancer patients and they have been able to avoid feeding tubes because of it. Why is this so exciting? (well besides the obvious reasons)... If I can gain some weight we might be able to get more proactive with my mast cell treatments. There is a drug that is supposed to be super good for stabilizing mast cells, and its the next logical phase in my treatment. The only problem is Dr. B (oncologist) said it is not directed for use in people under 100 lbs. (theres no pediatric dose). He knows its unlikely for me to gain 20 pounds off tube feeds (hey you nver know). But if I could at least get close to 90 he would be willing to start this drug. Which would be great since I have just been in a holding pattern with the steroids for a while and if this drug works, I would only need prednisone for premedication before procedures. *Happy Dance!* So I'm watching the mail for my Ambrotose.
Other than that I have just been busy knitting. I am working on a sweater (first one) and I already have the back done. Plus this morning I cleaned out a whole big book box full of random photos, so I'm feeling productive. I better go, Dad is on the phone. He's driving past the music store and he wanted to stop in and get me some piano sheet music. Not that the two foot tall stack next to the piano isn't enough. I guess I haven't been feeling very musically inspired or playing much this week and I think he wants me to take a hint. hehe.
If you have time, please stop by Jared's Page and offer his parents some encouragement. Jared passed away earlier this week. Things likethis just shouldn't happen, but unfortunately they do all too often. It doesn't feel right talking about my nondescrpit week when his family is dealing with sooo much. But I guess thats all we can do...keep on going. I guess the best way to fight these things and to honor kids like Jared is to keep living even in the face of tragedy. I hope everyone has had a blessed week so far. I normally don't like to ask for prayers for myself but I would really appreciate it if everyone could say a prayer for good weather and GOOD HEALTH so that I can get to this party on Saturday and enjoy this precious time while all the people I care about most are in the same area code.
God bless,
xo Cait
A few picture before I get to the juicy gossip...
Lara, Uncle Bill, and me at Aunt Judy's picnic
This is not very exciting, but I thought it was amusing. This is a tree that was on the marshes behind Aunt Judy's house. Aunt Ronnie pointed out that it looked like an ostrich and we all agreed.hehe. 
And here is my favorite picture from Paris. There are tons more to go through but I haven't put them on my computer yet. And then of course there are the wax museum picutres, some of which are too "classy" to share at the sake of publicly embarassing my relatives. 
Fist of all this morning I got a few emails from concerned friends, and I wanted to let everyone know we were NOT hit by the tornado. I didn't even know it was coming until Lizzi called me and told me that she was getting in the basement. I called Dad downstairs and turned on the news. Aparently it touched down in Westchester and a building collapsed and people wer trapped inside. I got a little worried when I heard that because Mom and Lara were shopping in Westchester. Thankfully though, nothing happened at the mall. Except Mom said she was nervous when they were leaving because it was like a mass exit, and she thought something might be going on. There were some rocks down on the highway, so there was lots of traffic, but other than that they were fine. The news said the tornado was coming through my area of Fairfield County and they were encouraging everyone to get in the basement. I was wondering how Dad was going to get me and all my meds and stuff plus both dogs into the basement, poor guy. But just as we started collecting everything together, the weather channel canceled the tornado warning as it had moved out to Long Island Sound. To quote Alice in Wonderland, "Things just keep getting curiouser and curiouser.."
So before all the tornado drama I spent the morning talking to Heather and looking at pictures from the DYNA Summer Chill. It looks like everyone had an amazing time, and I can't imagine what its like to be in a place where all this dysautonomia craziness is the norm. And after that Lizzi came over and we went over the song selection for the beach party (which has now been changed to a party at Janis's to accomodate me and the weather. How sweet is that?!) We picked like 20 somgs that just have to get narrowed down. Liz brought her guitar and I played the keyboard for a while. We always have so much fun doing that. I won't be playing or sining at the party though, I'll be content just to make it there. I told Liz I wish there was such a thing as a Perfect Day Pill that you could just take and get better for a day when you have something really important that you don't want to miss out on. hehe. Now that I look back on it the storm was pretty bad then, and we didn't even hear it over the music, good thing the tornado didn't crash into us. hehe. But as far as the party goes, the invitations went out a few days ago so I'm really excited to start getting everyhting together. I got all 40 invitations out all by myself (except for the trip to the post office). So while I'm pretty tired from that, its good to feel productive.
I haven't checked in on anyone else yet (power has been on and off for the last 2 days). But I know there are lots of kids in need of prayers. And I know I don't say it often enough but THANK GOD for everyone who is doing well right now. Because it is such a blessing to be enjoying life without medical stuff hanging over you head (or at least not hanging as close). I hope everyone is having a great week, I almost said weekend, but yes it is Thurdsay. Don't you love it when you don't know what day it is? hehe.
God bless,
xo Cait
Yesterday Aunt Judy had a picnic for my cousin Sean and his wife Courtney, since they're moving to Oregon in a few weeks. I'm really going to miss them, they're six years older than me, so they were the "cool kids" I followed around when I was little. It was sad, but we didn't say goodbye, we just said "see you later." hehe. At the same time though it was really good to see everyone, especially Uncle Bill, since he's in Atlanta I only get to see Him a couple times a year. Plus I got to play with my little cousins, Simon, Gavin and Hanna. Simon is four and he thought I was just about the coolest thing. So I went along with it. Its pretty rare that I find somebody who doesn't think I'm the biggest geek in the world, so I had fun hanging out with him too. I have some pictures to put up, but I haven't uploaded them yet. Lara has the digital camera in her car and she took off to a party somewhere, so I probably won't see her until tomorrow. I was so glad I was able to get out. Since this wasn't the best week I decided to take 10mg of prednisone before I left just as prophylaxis. Then as I started getting ready I felt pretty lousy, and I really knew that I should probably stay home. Then by the time we were pulling out of the driveway I noticed a huge hive on my lip so I took another 5mg. Then about 10 mintues into the drive I got that super dizzy, heart pounding thing and I couldn't tell if it was a mast cell attack or just a dysaut. blood pressure drop, so I took another 5mg of prednisone and some Benadryl just to be safe. (Can you tell I was not going to miss this thing? hehe.) Then I felt ok, but a few minutes later it happened again. I really should have told Mom to just take me home. I know it was really stupid to risk going out on the verge of a crash, but I guess we all have to throw caution to the wind sometimes. And I'm really glad I did. Because I really felt ok after that and I was able to stay a while. I just laid down on Aunt Judy's couch so I was able to stay out two hours. I did get a little sick on the way back home again, so I think most of the problem before was just car sickness. I got a little pukey on the way home (no fault of Mom's, shes actually a really good driver.) But I just put on my Switchfoot CD and went to sleep and I was ok after that. It was so good to get out and be around all my favorite people, I wouldn't have missed it for the world.
So today I'm just resting. I coordinated with Lizzi and we got all the plans finalized for the MYF beach party. Of course shes traveling all summer and only available one weekend, which just happened to be the only weekend that the beach pavillion was unavailable. So I had to choose between a bonfire and my best friend. Hmm tough choice (just kidding!). So tomorrow after I're rested a bit I have to print out the 40 or so invitations and get those in the mail. I'm so excited about this, its our last big party before we all go off into into the world. I know the chances that I'll actually make it a slim, but I'm just going to walk by faith on this one. I don't usually ask for prayers for myself, but I'd really appreciate a few prayers for good weather and GOOD HEALTH!!!
Then I got the best surprise on Friday, the most beautiful balloon boquet from the most absoultely amazing Tara. They were so perfect, one of them has a puppy on it, and best of all, none of them were Latex! hehe. I'm so glad to get balloons I can keep in the house! lol. (I know I sound like a broken record, but pictures are coming soon.)
I've written a short novel already, so....please say a preayer for all the kids in need, especially Sarah who relapsed. I hope everyone had a wonderful weekend! Everyone coming home from the chill, I hope you have safe and sickness free travel!
God bless,
xo Caitlin
On Monday I got out for a little while with Liz. We were planning on going to the beach but it was super hot and humid so we just went to Fairfield center and walked around (or rode around I guess) for a few minutes and then drove by the beach and just sat in the car and looked at the ocean. I had to roll the windows down because I just adore the smell of the beach in the summer, salt water mixed with barbeques and sun block. I guess I probably shouldn't have gone out since I have been having mast cell/cardiac issues since then. I guess thats the hard part. There is so much in life that I want to be a part of but then theres always the "What if" that I have to consider every time I go out. I don't want to live in fear of getting sicker, I want to get off the couch once in a while and see the world. But then if I'm going to end up on the verge of an admit thats definitely not worth it. But I'm glad I went. Of course part of the problem last night was that Mom bought some new curtains for my room from Target, and as she was ironing them, they gave off a really chemical-ish smell, and I think whatever it was triggered a mast cell reaction. But I am feeling better this morning. Which is good because I have some scrapbooking left to do.
The exciting news is that when I talked to D.C., my nurse care manager, she told me about a new product that could help me put on weight and help my cells communicate better. Its called glyconutrients. So I'm going to reasearch that a little bit as soon as I'm done journaling. I hope everyone had a wonderful 4th...Please say a prayer for Sammi who had surgery yesterday, and Jared, as I can't imagine what his family is going through right now. I hope y'all are feeling good and having a great day!
God bless,
xoCaitlin
Last night I tried to take the telescope out. Tried being the operative word. I kind of wore myself out with problems with the battery in the little laser in the star-finder. So then by the time I got everything set up I probably should have decided to call it a night, in which case I would have avoided crashing, but I'm stubborn like that. By that time I was so tired that whenever I stood up to look at anything, I got really dizzy and couldn't see anything, so then I would have to sit back down until my blood pressure came back up. After about a half hour of this Mom was begging me to come inside, so I tried to get up the stairs and twisted my leg...and then after I got inside I fainted, and then Dad said no more telescope until I'm less symptomatic. And by that point I was pretty darn frustrated with the whole string of events and the night ended in a few tears. But I think it had more to do with the fainting than actually being upset, lack of oxygen to the brain or something. hehe.
So today I have been feeling better and keeping myself pretty busy. I literally spent all morning scrapbooking an I'm almost done with Lara's graduation present. I just basically have some gluing to do. And then I watched Proof, which is actually really a good movie. I usually don't watch Anthony Hopkins movies...I saw a trailer for Silence of the Lambs and have been creeped out ever since...but I liked this one. Thats about all thats going on around here. I haven't had a chance to check up on any of my CB family yet, but I know there are a lot in need of prayers. I hope everyone has A wonderful holday weekend!
God bless,
xo Caitlin
PS - I just love how creative everyone is with that little "draw on me" board...I had a good laugh over the halo someone drew on me...hehe
Healthiwise this has been a pretty good week. Yesterday I went to Janis' house for another Mary Kay party. I just watched since I have tried every product a bajillion times by now. Janis has this big fluffy anazingly comfy chair, so she pulled it up to the dining room table and I curled up there while everyone put on make-up. It was really nice to get out and I didn't want to come back home. I was out an hour and a half, and I managed to stretch the outing until 9:20 but by then I was definitely getting over tired and needed to get home. But I love driving around at night (as long as its not to the ER!) and looking at all the stars.
Not much else going on here, I've mostly been doing crafty stuff, knitting, scrapbooking, some drawing. Yesterday I noticed that crayons seem to trigger a mast cell reaction. I thought it was strange, but I have had reactions to wax before so maybe it has something to do with that. Not that it really matters much. I didn't get sick enough to stop coloring. hehe.
This weekend is the concert for the dance studio that I used to go to. I definitely don't feel left out this year, because I wouldn't be dancing there anymore and all my friends are graduated. It just brings back a lot of memories. Its funny, I can't even stand on my toes anymore but I still feel like a dancer at heart. Maybe its because I never got to finish and graduate...I kind of had to stop before my time I guess...hehe. I was going to go watch the concert, but its not the show I miss, its more being on stage, and living off wendy's french fries on the auditorium floor during rehersal week. Plus it is hours long, and I didn't really feel like sitting through lots of loud music. I bet it was a good show though. It always was, but then again I'm partial.
I hope everyone is having a good weekend, I'm sure I'll be updating again soon, I'll be looking for something to do. Please say a prayer for all the kids who aren't doing well right now.
God bless,
xoCaitlin
me: (eating raspberry sorbet with crushed pineapple on top)
Lara: (looking disgused) Whats that on your ice cream?
me: Pineapple. (At this point I'm wondering why she's asking because I was actually eating something semi-normal for a change).
Lara: (looking relieved) Oh good, I thought it was sourkraut.
Sourkraut?! I know I've come up with some weird things, but I'm not that bad...yet. I have come up with a new prednisone food-craving this afternoon and it was actually pretty good. White rice with cooked pineapple mixed in. I don't know if this qualifies as prednisone food or Chinese food...we'll just say its Chinese food. At least its better than pickles and cereal.
I was super excited all weekend because Heather from DYNA was supposed to come over today. (Shout out to Heather!) But unfortunately it didn't happen. I still had the cold/sinus thing yesterday and I thought I could deal with it and I really didn't want to cancel so I just hoped I'd be better this morning. But unfortunately during the middle of the night I started with a fever and when I woke up this morning I felt generally cruddy. I didn't want to share my germs, so I had to cancel. (I porbably wouldn't have been very good company today anyway.) So I'm a little bummed about that. But it will be ok, we're planning for next weekend...and I am not going to crash before then hehe. It was nice since we got talk on the phone for a while this morning (while I was eating my pickles and cereal), so that was fun. So by next weekend I will be all better...and I have learned my lesson...always be armed with Purel.
So basically today I have just been laying around watching movies. I have Hoodwinked, Proof and Aquamarine from Netflix. Lara made fun of me for getting Aquamarine, bot we both actually really liked it. LOL. Its a nice day for movies since it has been pouring all week, and its supposed to keep raining for the next 7 days. Its crazy, the patio is already flooded and the basement is starting to get puddles. I'm trying to stay out of the way since Mom is busy shopping, washing, and packing like crazy. Lara has a super big trip coming up this week (her graduation present from Uncle Bill). I'm not going to say where she's going, this is the internet. But after she gets back I'll let you know all about it.
I'm going to get going, Dad is transferring movies off the video camera so I'm going to go watch. Its the most random stuff, Lara's graduation, my little cousin's Christmas play, and footage of my late hamster. hehe. I haven't had a chance to chack on anyone else yet but there are lots of kids who needs prayers, like the wonderful Tara and Bailee who is finally back home after two years in New York for treatment. I hope everyone is feeling good and having a great day!
God bless,
xo Cait
aka The Really Long One
CONGRATULATIONS LARA!!!
I can't believe my little sister is out of High School. Mom came home and did a happy dance while singing "I'm done! I'm done!" And then Aunt Judy said, "oh please Deb, you are anything but done." hehe. But it didn't seem real until I saw Lara in her cap and gown. She looked so grown up. It really worked out perfectly because the graduation is going to be televised on the public access channel, so I will get to see the whole thing. And Dad and Aunt Judy both took videos, and we have tons of pictures, some of which I will try to post later when I get them downloaded from the camera. The only part I felt bad about missing was the dinner, because all the girls took a picture with their brothers and sisters, and Lara had to borrow her friend Ana's little sister since I wasn't there...so it looked kind of weird to see this picture of Lara with a substitute sister, but she seemed to be having fun, so no worries.
I had a really fun time, Aunt Judy came over around 5:00 so we got to visit for a little while. And then at 5:30 Janis came over to stay with me while Mom, Dad, and Aunt Judy went to the school. It was good that they left early because graduation actually started at 6:00, not 6:30 like one of the many notices said. I had so much fun with Janis...she was my Sunday School teacher and youth group leader in high school, and I always went in her van on camping trips and retreats. Plus her Daughter and I did church, school, and dance class together, so Janis is really like my second mom. I hadn't seen her in a couple months so it was nice to have a whole night together. We spent the majority of the night planning an MYF (youth group) reunion, and then I thought it might be fun to make it a beach party, so that is what we are planning. I'm doing the organizing part and then Janis is going to do all the stuff that I'm not up to, like shopping and setting up and everything. We came up with about 35 names,so I am going to start looking up everyone today. I never remember youth group being that big, but I guess over the years we really had a lot of kids. That is going to be sooo much fun.
Then we did devotionals together and prayed and read some scripture. When I went to bed I even got tucked in, hehe and we both agreed that we felt like we were on a retreat again. We both had so much fun.
And then yesterday Lizzi came over for a while. She workd for Mary Kay now so Mom and I got the whole make-up presentation and makeover.There was a little card with different eye shadows, and it showed you where to put the different colors, so I did that. I guess I am going to start wearing make-up now since my best friend works for Mary Kay.
Healthwise things are pretty good. Mast cells have been kind of flaring up so I'm currently on prednisone, but I'm already going through the taper so I'm only on 30mg today.(However this is aparently still enough to make me choose cereal and a whole jar of pickles for breakfast.)Nothing like toasted oats, rice milk, and kosher dill pickles at 10:00 AM. yumm. hehe. I'm hoping to get off the prednisone by early next week, but it might have to hold for a few days, since I have the tiniest bit of a cold. Not surprising though since there were more people than usual in and out of the house. And since its not flu season, we weren't real careful about squirting purel on everyone.
I've written a novel, so I hope I haven't bored anyone to tears. If you have a chance, stop by Jake's Page and offer him some encouragement, he just got off his vent and could use some prayers. Thanks for stopping by, I hope is feeling good and having a great day!
xo Caitlin
I've just spent the better part of the day reading. Mom went to the library yesterday and got me three new books, Ella Minnow Pea, The Sun Also Rises, and Out of Africa. So I'm on cloud 9. Doesn't take much to make me happy. But seriously I love library books, you never know where they've been. But bot in the sordid sense, like when a little kid picks up money off the ground and the mom says "Honey, don't touch that, you don't know where it's
been."I just mean that you never know what crazy person's margin notes you'll find in a library book. I've been reading inside since its over 90 degrees outside, and as much as I love the heat, its that stuffy, opressive kind of heat where the air kind of sizzles over the pavement. Ok, enough rambling. Kudos to anyone who read that whole paragraph.
Lizzi came over on Friday and we played the keyboard and piano for a while. We both wanted to play so we got the keyboard out too. Except when we played them both together we realized how painfully out of tune the piano is. We sounded like a really bad band, so we ended up each playing one hand on the keyboard. Liz is now selling Mary Kay products so she had a big make-up party yesterday. I was really looking forward to going, (even though I don't wear make-up).But it didn't work out that way, so Mom and Lara went and they had fun. And Wednesday is the big graduation. I don't know what I am more excited about, that my sister is graduating, or that I get to spend the whole night with Janis! hehe.
I haven't had the chance to put the prayer list back up since I redecorated the page, but there are lots of kids in need of prayers, especially Jake, and Jaye who are both still in the hospital.
God bless,
xo Caitlin
If this sounds like a pity party read to the end...
Not much to report here...still just trying to kick this infection in the pants. Its still hanging around, so Dr. Sora switched me to a stronger dose of Erythro. Of course this is me we're taling about, so what would things be like without a few surprises? hehe. The stronger dose set off my heart arrythmia, so now I am back to the lower dose, and just staying on it longer. Dr. Sora said the next step if this doesn't work is giving the antibiotics IV, since I might be able to tolerate them better that way than orally. Of course that would really be a problem since with the masto. the longest I can keep an IV in is 2 hours without starting to anaphylax. See what I mean? I guess I'm just Caitlin with a capital "C"...for complicated. hehe. Dr. Sora thinks I'm getting resistant to the erythro. because I use it so much for infections plus I'm on low doses ever 6 hours for GI motility. I really don't think I'm getting resistant though, since all this started when I went to Denise's house. I really just think that was a little too much for me since I have had a migraine that came on there that I have been trying to kick for the last 12 days. So I think thats whats making me feel a little worse. And I know this lowered erythro dose is going to work. Hear that infection? Its going to work. I don't blame everyone for being so cautious though, it would be a bit of a delemma if it went into pneumonia. But I can tell it is nowhere even close to that point so no worries.
So needless to say I am NOT going to the graduation dinner. Lara and her group of friends are renting a room at a restaurant and all of the families (about 80 people total) are going to go celebrate after the ceremonies. I knew there was no way I could go to the actual graduation and sit on the bleachers for 3 hours. So I wanted to go to the party, just so we could all be there as a family for Lara. But oh well. Cest la vie.
Which brings us up to today...I talked to Dr. Sora again. He was wondering about taking me off the long term Erythro. so it would be available to me for ifections when I really need it. But Hillary at Dr. Glassmans said no way to that. The main point in reducing anti-emetics is they don't take you off them unless you're not throwing up or nauseous. So then Dr. Sora got into the conversation about vomiting. He went through the whole "Bile? Blood? Keeping meds down?" List of questions and I answered " Yes, sometimes, and trying my best." His answer was "Hmm this is a problem."
**Here's the part that's a perspective changing slap in the face. I asked him if he had any suggestions and he said. "I honestly don't know what to do. I didn't expect you to survive this long without enteral feeds." (Insert speechless Caitlin here). I mean, here I am being all mopey about missing the graduation party... But SO WHAT if I'm not going, so what if my meds aren't doing the best job, so what if I'mnot having the best week. It really is a good week because I'm ALIVE. Not because of anything the doctors have done (no offense doctors), not because of anything I'm doing, but I'm here typing this by the grace of God. I awlays wake up in the morning and thank God for the day but today I've been stopping now and then and saying "thank you God for that breath." Doctor's can't explain it, I can't understand it, but God has a plan for me. Now thats worth celebrating. If only I could rent out a restaurant for me and 80 friends...hehe.
But I guess what I'm trying to say is no matter what you are going through (and chances are if you're here your probably going through a lot) today is a gift. No matter what has happened or what is coming enjoy this moment. And be glad that God is bigger than any prognosis that any doctor can give you. I'm LIVING proof. hehe. If you have a chance say a prayer for Rachel who didn't have the best scan results, and Jake, because that miracle is on its way.
God bless,
xo Caitlin
This afternoon was really fun. Mom went out to the mailbox and found a turtle in the driveway. She wheeled me down to see it and I brought some blueberries to feed it. I identified it as a snapping turtle, I used to rehabilitate those all the time at the Audubon Society, and feeding our little visitor the blueberries brought back memories from my animal care days. There's a stream running through the woods about two houses down, so I'm guessing thats where it came from. I took a bunch of pictures, so I thought I'd post a few of them.
I'm going to go rest, still recovering from my outing on Friday. If you have a chance say a prayer for Rachel...she needs some clear scans! and Jake, his family is expecting a miracle! Thanks for checking in!
Hugs and God bless,
Caitlin
And on the seventh day she rested...It's been one of those whirlwind weeks, or at least the past few days. My sister had prom on Friday so her and mom were on the run all week with hair, makeup, nails, dress fitting appointments. I was actually quite happy to just be a spectator and stay home in my pajamas. hehe. Unfortunately it rained most of the night. I had been watching the weather all week and at first it just said overcast, and then as Friday got closer it changed to scattered thunderstorms, and then rain becoming steady in the afternoon and night with scattered thunderstorms. I felt really bad for them (and I was a little bit bummed because I had been planning on sitting outside and watching them all take pictures at Lara's friend Denise's house. I decided rain or not, I was going to go and just sit in the car and watch everyone walk in. There is a full flight of stairs going to Denise's front door so I didn't think I could make it inside. So I was sitting in the car reading when I noticed that the front yard was only on a slight incline from the curb to the front door. So I doubled up on atenolol and midodrine and decided to try going in. It felt like climbing mount Everest but I was sooo glad I made it. Everyone looked soo gorgeous, and I got to sit on the couch and watch the whole time. There were about 80 or 90 people there total between all the kids, parents, and siblings. So it was really busy, and after being cooped up at home for soo long it was really nice to be out with so many people. I saw a girl I used to know from middle school (her brother and Lara are friends) so that was nice. I did get a little bit symptomatic when I got in the thick of the crowd, but I just went to the kitchen, took my headache med, and prayed that I wouldn't pass out in front of everyone. hehe. But it only lasted a few minutes. The good thing was that although it was gray and damp, it didn't actually start raining until around 9. I actually did really well and surprised myself, I stayed out an hour and a half, so now I am planning on going to the graduation dinner party for a little while, its in two weeks and I'm thinking I can handle it. The secret is my increased dose of midodrine, taking it every two hours. I didn't want to be so dependent on a med, but I realized that its better than trying to function with my BP at 50/30.
Lara looked beautiful of course. And I'm not just saying that becuase she's my sister hehe. As soon as she walked in from her hair and makeup appointments I told her she looked like Eva Longoria. And mom was like "I can't believe you just said that, I was thinking that the whole way home!" I didn't download the pictures off the camera yet, but I'll try to put one up when I do. (Can't you just tell I'm going to be one of those parents thats constantly bragging about their kids? )hehe.
Of course Ollie couldn't let the weekend end without getting his share of attention. Yesterday Mom and I thought he was "tummy breathing" and he was standing with his legs really far apart (both signs that he's going into a cardiac episode.) We called the Norwalk vet and they said it wouldn't be a bad idea to practice preventitive medicine, so we brought him in for a shot of Lasix. Better to handle it and be able to bring him right home before he got critical and needed oxygen.
So he's okay now and he and I are just resting and watching movies. I'm just spending the weekend on the couch which is fine with me, it was beyond worth it to go out and see everyone in their gorgeous dresses. Like I said to Mom, "I've been saving up since Deember for this!" hehe. Anyone who knows the "spoon theory" can definitely relate! I haven't had a chance to check on my friends yet, going to do that next, but say a prayer for Diana who's hopefully getting out of Club Med today, and
Jaye, who's still spa-bound. I hope everyone is having a wonderful weekend!
Hugs and God bless,
xo Caitlin
PS - When I checked my page I noticed that it is taking forver to load, If you're having the same problem with it drop a note in the guestbook...I may have to take some of the "cutesy" stuff off. And I know the graphics are all messed up, I'm going to try to fix that right now.
My best friend Lizzi came over for a little while today, she just left. We sat on the porch and ate popsicles. We were going to go to the park/playground down the street but by the time we got in the car and drove there, we realized that we hadn't thought to bring the wheelchair, and the walk from the parking lot to the park isn't within my limits. So we just drove a mile or two down the road and turned around and came home. We used to drive all around, past the beaches, but since gas has gone up to $3.15 we are trying to find a more economical way to spend our time. That plus since I have been using my stomach to get nutrition instead of relying on tubes, the carsickness factor is more of an issue to work around. I just don't want to ride around in a car any more than I have to. I didn't say anything but I was a little nervous because I felt pretty nauseous and just about two miles from home I realized I had forgotten to bring a bucket. hehe. Fortunately though we arrived home uneventfully. I would have felt really bad about puking in my best friends Lexus...what are friends for? hehe.
Ok I just realized I'm really rambling, if you're still reading this, kudos for staying awake. I'm just sitting here enjoying the birds and the smell of Mom and Dad's barbeque on the grill. I think I'll go get back to my book. If you have a chance, Jaye could use some encouragement, as she's still "Spa bound". I hope everyone has a lovely evening, thanks for checking in!
God bless,
xo Caity
PS - I really want to know who wrote "Tutor Girl" on my message board thingy...I need to get my revenge in your guestbook. hehe.
I also really wanted to drive the tractor around today, since I haven't been able to since I've had the J tube for the past 3 years. (With all the bouncing it was a risk of the tube getting displaced). I had been waiting for a really nice day to drive it around for a while and today seemed perfect. Unfortunately as soon as Dad got it started up the gasoline smell made me super nauseous so I decided to forfeit the ride. Oh well. But instead I sat on the porch swing and did some drawing for a while, it was 79 out today so it was nice to sit out.
Then a little while ago Aunt Ronnie and Uncle Michael came over. (Such a nice surprise!) Our air conditioner wouldn't start, something about a compresser, so Uncle Michael helped Dad fix it while us girls sat inside and chatted. So needless to say I'm tired, but rightfully so. I always find it easier to be symptomatic if I at least get something out of it first. hehe. As long as I don't push it too far, I know I'll recover with a little down time.
I have gotten so many messages from people who said they were praying for Ollie, and I wanted to thank each and every one of you from the bottom of my heart. I know the average CaringBridge family's prayer list is over a mile long and it really amazes me that people will go out of their way to offer up a prayer for my little guy. He is doing sooo much better, a new person...err dog. He's running all over like he doesn't know he has a heart conditon. We're trying to get him to slow down! He started a new low sodium dog food (vet's orders) and it looks like ground up wet cardboard. Mom opened the can and we were both thinking "Wonderful...how on earth are we going to get him to eat this?" He is normally so fussy but wouldn't you know he inhaled this stuff, plain with no cold cuts mixed in! So thank you thank you for your prayers. I hope God blesses each and every one of you today!
I haven't had a chance to check in on any of my friends yet, but if you have time please go congratulate the wonderful Diana. She graduated from Highschool on Friday and worked super hard to earn her diploma. I just love GOOD news! hehe. I hope everyone is having a blessed weekend!
Love and hugs,
xo Caitlin
Of course with all the craziness around here we haven't been as careful as usual with my stuff. When I was getting ready for bed last night Mom ate some cookies with walnuts in them. This normally wouldn't be a problem, but I was too tired to get all my 8:00 meds together before bed so mom gave them to me. Well just that little bit of walnuts that was left on her fingers transfered to the pill and started a mast cell attack. At least it only took 30mg of Prednison to stop it, so it should be a fast decrease. I felt fine alright once it started working, its just that first hour before it kicks in where I'm doing the wheezy-chokey-trying-to-breathe thing thats a little bit rough. I felt even worse for Mom though, she just felt so horrible about the whole thing and kept apologizing every 10 seconds. But no worries. I'm surprised that nothing like this happened sooner with a kid taking 30 pills a day, one dog getting 6 pills and a patch and another dog getting 2 pills. I'm just waiting for the day when Ollie gets midodrine and Zofran and I end up with the nitro patch on my ear. hehe.
Other than that today has been very nice and quiet. I found a whole bag of books in my closet that I got at the library's used book sale last year and compeltely forgot about, so I'm on cloud 9 with all of them. I just finised soaking my feet which was super nice too. American Idol finals tonight...yay! I was really hoping that Katherine would win but I'm betting Taylor will. I was too tired to call in and vote last night, oh well, they both really deserve it. If you have time stop by and say a prayer for Jake who's had a rough couple of days. I hope all is well with everyone else!
Hugs and God bless,
Caitlin
Today Mom got these things called grow kits that were on clearance at Target. They're little tiny pots that come with flower seeds and (my favorite) a "dirt pellet" that puffs up into a big clump of dirt when you add water. (hehe I am way to easity amused). I got Cosmos, Forget me nots, and Morning Glorys. I planted the Forget me nots today. I have always been in love with planting things, I love making things grow, its like you get to help make a little miracle. (Wow that sounds reallly cheesy. hehe). But anyway I had fun.
So thats all thats been going on around here. Nice and uneventful, just the way I like it. Don't forget to say a prayer for Tara so she can beat this anemia, and the adorable Eden as she starts her second round of chemo. I better get going, the storm sounds pretty close and I am guessing it is not a good idea to be using a computer three feet away from the sliding glass doors. The doctor who diagnosed me up in Boston said it is more likely for a person to get struck by lightening that to get dysautonomia. I don't want to tempt fate here. I wonder what are the odds of both happening? hehe.
God bless,
xo Caitlin
P.S. Jaye Bear, thank for the huggers! I'm sending you some too!
Medically this week has been "alright". Better today at least. After a chat with Dr. Sora on Tuesday we came to the conclusion that I have something called "aspiration sinusitis." (Skip this next part if you're squeamish). Its basically a sinus infection that I got from puking so hard that the puke went up into my sinuses and got infected. Lovely. hehe. So I'm on antibiotics now and its all good. Its actually erythro, the same antibiotic I take for motility, and it always amazes me that 80mg can help my stomach and has antiemetic properties, but 300mg drives it crazy and makes me puke more. So we're giving me meds that make me puke to clear up an infection that I got from puking. Does anyone else see a viscious cycle? hehe.
Anyway today is nice and rainy, the perfect day for reading. Seriously, its an absolute downpour out there. Last week it rained so much that the town got flooded. I didn't notice anything except for about an ince of water on the patio, but the newspaper was full of pictures of flooded cars and people in rafts. I thought it was kind of funny that a whole flood happened and I was oblivious to it. I feel kind of bad for whoever cleaned it up because they are just going to have to do it again this weekend. This is long enough, don't forget to say a prayer for all in need, and if you have a chance, stop by and wish Christi a very happy birthday, as she turns 9 today. Happy Birthday Christi! And Diana is stuck in Club Med, so she could use some prayers and get well wishes. Diana, I'm sending you lots of hugs and prayers and I hope you feel better soon!
God bless,
xo Caitlin
I could feel some prayers at work on Thursday, I had what must have been the shortest fever ever. It started aroud 6 when I felt really hot and my face was bright red...the thermometer said 102.6. That is the highest it has been since I got sick, my temp usually is like 94, and with my heart rate around 180, Mom put a call in to Dr. Sora just to be safe. He knows how much I protest about the hospital, so he let me stay home (and by doing so, earned some extra coolness points with me). We were just supposed to keep an eye on it over night and check in again in the morning. Well by 10 that night it was completely NORMAL. I didn't even feel sick anymore. Janis's bible study was around that time and she tells me that every week the kids ask to pray for me. That whole day I had been so achy it even hurt to lay on the couch, but after some good intercessory prayer, I was completlely fine. It was like the 4 hour flu. hehe. I guess by now I shouldn't be surprised when something outside the norm happens, it is ME. hehe. At least this time it was something good.
Yesterday I got out for a little while. Mom had to drop Lara off to meet up with some friends (they were going to a concert) so Ollie and I went along for a ride. It was so nice to get out and ride around in the sunshine, although driving around is probably not the best passtime when gas is $3.11. How crazy is that?! But we didn't go far, we just drove by the farm at the high school, since we were at the school anyway. Ollie like it too, once he realized he wasn't going to the vet. We we started out he was so stressed, poor thing. He only leaves the house to go to the vet or the doggie ER, so this summer I am going to try to take him out for more fun things.
Thats about all thats going on here, sorry for the boring update. Please say a prayer for all the kids who are going through rough spots right now. I hope everyones having a great weekend!
God bless,
xo Caitlin
Thats one of the blessings I have recieved on this journey. I have met so many wonderful people. From the random people who hold the doors open and help us with the wheelchair to the saleslady at Macy's, there are people who I have met once who are praying for me. I mean, people are actually talking to God about me. Its really mindboggling how many wonderful people there are out there. And how many people, some of whom I have never even seen face to face, are impacting my life.
So I have been challenging myself to see people as God sees them. Before I got sick I never thought about how each person you pass on the street has their own story. Before I went through it myself, I never thought that the pushy driver behind you on the highway might be rushing to get their child to the ER. And even now I realize that while I'm sitting here dealing with my medical problems, a whole bunch of my friends out there are dealing with theirs too. Since I have gotten sick, I have been out less and less, but my world feels considerably bigger. Its amazing how self-centered our lives are until we really need other people. And then when something like this happens you get the realization of how connected we all are. I guess I've just been in one of those "thinky" kind of moods you tend to get into sometimes when you're sick. I think I have too much time on my hands. hehe.
So I just wanted to say, to the friends I talk to every day, and the ones I don't even know I have, I see the numbers on that little counter go up everyday, and I know people are praying for me and taking the time to care. So thank you for being the glue that holds me together.
Other than that not much else is going on here. Labs tomorrow. I'm hoping potassium is way low because that would explain the recent increase in cardiac symptoms. It would be nice to have something that could be so easily fixed. How crazy is that? I never imagined I'd be praying for an electrolyte imbalance. hehe. Ok, enough rambling from me, If you're feeing yucky feel better, and if you're feeling good, stay that way. ;)
God bless,
xo Caitlin
Dad was very brave and managed to get it into a plastic container (with a lid of course) and he was even nice enough to poke some holes in the lid so it would have air. Its still in the container on the porch. hehe. We haven't decided what to do with it. I want to let it go, but Mom doesn't want that thing in our yard. I feel bad killing it, so I think we are going to let it go on the corner of the street. Theres a nice little strip of trees on the corner and about a 10 foot deep strip of property that doesn't belong to anyone. So thats what was going on here at 11:00 last night. After hopping up out of bed and standing there staring at that darn spider for 15 minutes I'm not surprised I needed an extra boos of heart meds. Dad was teasing me that it was because the spider was so scary, but it was really just from jumping up so quickly and standing upright for so long. hehe.
Other than that theres not too much new here. I just got the perscription for my H2 blocker so I'm really hopeful about starting that. Then I just need to get on a leukotriene blocker and I will be on a really good treatment plan for keeping the mst cells under control. The best and most effective treatment is chemotherapy, and although I do have some decisions to think about regarding that, it is not something I am planing on rushing into, at least until later on in the summer. So right now this seems like the easiest treatment option for now and I am really exicted to start. I am hoping that this will be the key to feeling a little bit better and getting back out occasionally.
Tomorrow is Frisbee's birthday, he is going to be 12. Every year he and I have a tradition where we go to McDonalds and I feed him a happy meal. I know he is one spoiled doggie, but I love him to pieces and I can't help it hehe. I can't believe I have had him 11 years already. As hes gotten older he has developed a limp and has to take a few pills, so I joke that he's the perfect dog for me because we can really uderstand each other. We just kind of limp around the house together. hehe. He really is "girl's best friend."
I hope everyone is having a good week. Thank you sooo much for all the prayers, they are what keep me going every day. My prayer is that God will bless all of you, because I really don't know what I'd do without such wonderful friends. ;)
xo Caitlin
I had planned on starting the steroid taper today but of course last night the dose got doubled. Not really a big deal, I'd rather be on prednisone than have swollen lymph nodes so its okay. If all goes well I am going to try to start the taper this weekend. So I have something to look forward too. I'm sure Dad will be happy to get me off steroids too, he had to make me pasta with brussel sprouts for breakfast. hehe.Isn't it strange how prednisone makes the strangest things look good? It doesn't really make me more hungry, I just eat the randomest stuff. Last night I was standing in front of the fridge eating plain mustard...I completely grossed Lara out.hehe.
I don't really have anything planned for today, other than getting some perscriptions straightened out. Mom picked up my potassium refill yesterday and the dosage got increased to 60 MEQ per day, which seems like a bit much. lol. So I'm curious to hear Dr. Sora's explanation on that one. Other than that I've just been busy doing crafty stuff. In fact I scrapbooked so much that I passed out...hehe. Perfect timing too- right in the middle of Dad's buisness conference call. I woke up to a bunch of guys on speaker phone and Dad trying to explain to them what happened. Just a little embarassing.hehe. Lara's on spring break this week which of course just translates to an excuse to go shopping every day. She and Mom have been looking for the erfect prom dress so Dad and I have been hanging out together all week. And of course now that lent is over I have been watching my Gilmore Girl's DVD's like crazy.
Thats just about everything thats going on in my little corner of the world. Don't forget to day a prayer for everyone going through a rough spot.
God bless,
xo Caitlin
Easter was quiet but good here...I just layed around and watched a few church services on TV and then 3 movies. You just need a day like that every once in a while. This was the first time in my life that I didn't go to church for Easter, so the morning felt pretty empty. I know that you don't have to be in the actual church building to celebrate Easter, but I wait all year for the Easter service so I was a little bit pouty about missing it. But what I saw on TV was beautiful so it was still nice. The bunny brought me pajama pants, which I can never have enough of, and they were actually ones that I had wanted and "the bunny" just happened to get them without even knowing I wanted them. hehe. Lizzi was home for Easter and she had wanted to stop by 3 days in a row but I had to tell her I wasn't up for visitors. I'm sure she appreciates not having to hand aroung with the Prednisone poster child. hehe. But she'll be coming home every weekend, bringing her stuff home before she graduates, so I'm sure I'll be tapering the steroids and ready for some galavanting soon. Only 5 more tapers to go until I'm done! *Happy Dance!* I'm probably going to be starting 2 new mast cell drugs this week so that will hopefully have me feeling much more stable too.
I haven't had a chance to check in on anyone else yet, but I am sure there are a lot of kids who need prayers. And don't forget to thank God for everyone who has been blessed with feeling good too. I better go do Dad a favor and take Ollie out. It seems like between the two of us all he does is transport us either outside or to the bathroom. What are the chances of having a dog and a kid on diuretics? hehe.
Have a great week...If you're going through a rough patch, feel better soon, and if you feel good, stay that way! hehe.
Hugs and God bless,
Caitlin
Of course then after 12 hours of our dog being in caridac distress, the day couldn't end without me putting in my two cents and I had to go and pre-anaphylax. I think it was just from so much stress and worrying about my little buddy since there wasn't any trigger that I could figure out. (thank God). Although its scary enough when its happening it wasn't anything we couldn't handle at home with a little prednisone. Its annoying having to decrease from a shock dose, but I realize its a necessary evil and I'm thankful that there is a drug that can help within an hour. Since getting Mastocytosis I have learned to be thanful for every little option I have available to me, no matter how unpleasant, because its just that - an option. I have seen how quicky the simplest things like an IV can become a huge ordeal when plastics are a trigger. I am thankful for every time I can get through an episode with prednisone. Even though it brings on a bunch of nasty cardiac symptoms, it spares me from needing the epinephrine that could be life threatening. So yes, I hate steroids, but I love them more. Does that make any sense? hehe.
So now Ollie is on the love seat and I am on the couch and poor Mom is passing out all the heart meds and monitoring everyones cardiac symptoms. Ollie needs to stay under 50 breath per minute and I need to stay under 200 heart beats per minute. hehe. Uncle Michael had wanted to stop by yesterday but Dad had to tell him he couldn't come in. lol. Too much stress for "his majesty" Ollie.
Thats about all from my little corner of the world. Don't forget to say a prayer for all the kids in need. I haven't had a chance to check up on any of my friends so far but I'm thinking of you all and sending lots of hugs. Only 4 more days till Easter! I have so much to say about that...there will probbly be a sermon up here by Sunday, but just remember that not matter what you are going through today we have HOPE because Christ has the final victory over death, sickness, suffering, and every trial you are going through. I hope you have a wonderful week!
xo Cait
I just had a nice long chat with my nursing care manager, DC. She's so sweet and she helped me get a bunch of stuff straightened out with my meds and insurance. Fun stuff. Aparently some of my dosages are higher than the med has been approved for, but with mast cells, they get resistant to meds after a while so you have to keep upping the dose. So she helped me get all the forms that I need to explain everything to insurance. And my BFF Lizzi came home last night for a last minute visit...which is always such a nice surprise. She's on her way home from a job interview in Greenwich and then she's coming over. I haven't seen her in 3 weeks and thats 3 weeks too long. :)
This morning I've been completely obsessed with this stuff called Wadda Juice...its grape juice in little sippy bottles. Last night I had a craving for juice and then mom went grocery shopping this morning and found this stuff without any sweetners added so that means less nausea...although I think the real reason I like it is the little sippy bottle. hehe. I am wayyy to easily amused. I've been refilling it all morning and now I'm just sitting here with my sippy bottle and my bucket. hehe.
Medically I've been doing ok-ish. Over the past few weeks it had gotten really hard for me to swallow stuff like strawberries, grapes, brussel sprouts (yes I like brussel sprouts)...I was kind of choking on stuff either going down or coming up (sorry for the grossness), and I felt kind of self conscious about it so I have just been sticking to crackers and cereal and stuff like that. I'm hoping its just a phase and I'm thinking that it might be the muscle wasting acting up becuase whenever I get my muscle strength tested the neurologist always asks a bunch of questions about swallowing. But anyway, leave it to Mom to notice that I was only eating crackers and rice and stuff like that, so she had the brilliant idea to put the fruit on in the blender. It kind of makes like a smoothie. So today I had strawberries again which was nice. I'm hoping this is just a phase and it will pass. But for now this works well.
Don't forget to say a prayer for all the kids who are going through rough times right now, especially Diana who is stuck inpatient and feeling crummy. And don't forget to thank God for everyone who is doing well! I hope you're having a happy thursday...only 10 more days until Easter!
Hugs and God bless,
xo Caitlin
I was looking through my guestbook today and I noticed that "Fred Savage" left a note on March 24. hehe.How random. I doubt it is the real Fred Savage, but it made me smile anyway. I would email him back but I doubt FredS@wonderyears.dude is an actual email address.
Well enough rambling...not much new on the medical front. Except for one thing, on my labs this week my phosphorus came back pretty high. I googled phosphorus and it is a chemical that is used in matches, fireworks and bombs, and it glows when exposed to oxygen. Nice, huh? When Dad got the fax with the results he said,"You're positively glowing today!" hehe. too funny. Dr. Sora called and said he's only seen one other patient with levels this high and theirs was from complete dialysis. He said he has absolutely no idea what this means and has never seen it before. (Are we surprised? This is me we're talking about hehe.) We'll retest in a week or two, hopefully its just a "red herring", but it doesn't seem to be doing any harm so whatevs.
I haven't had a chance to check on any other CB kids yet, but I know Emily needs some prayers, as she is preparing for her BMT tomorrow. So don't forget to pray for her and everyone else going through a rough patch. I apologize for not getting around to guestbook signing this week, I have been pretty wiped out but maybe tonight or tomorrow I will get to it. I am thinking of all of you and praying too...I hope everyone has a good weekend!
God bless and much love,
Caitlin
Not much else going on around here that can top that...I did a little scrapbooking for Lara's graduation present today. Just one page, but I'm working on it a little at a time so I don't get over tired. A lot of the pages that I haven't finished yet need pages from the sacred baby books, so I'm going to have to send Mom out to Walgreens to copy some pictures.
I just got off the phone with my best friend Lizzi, she got a dog! Its a real cute little black and white scruffy thing that they found on the side of the road by Moehegan Sun. I have no idea what a dog was doing roaming around by a casino but its real cute. I guess this is just the day for good news.
Other than that I'm just trying to eat little bits. It gets frusterating at times when I work so hard to eat and then it just comes up. I pulled a muscle in my side this morning from throwing up so hard so now I really don't want to eat, because if I get sick again, it really hurts. But I know I have to. I'm thankful at least for the Reglan, Zofran, Phenergan and all that stuff because I know it would be so much harder without it. You know how it feels on those days when it just feels like you are at war with your body. To bad bodys aren't like cars where you can just lease a new model when the old one doesn't work. hehe. But I'm working on one of those little cups of applesauce and hopefully my stomach is happy with that. I'm not complaining, if Jesus could give his life on a cross for me then I can find the strength to do this. I guess if everyone was healthy there would be no need for caringbridge and DYNA and then I wouldn't know so many of my wonderful friends.
I'm going to go take a nap, but don't forget to say a prayer for all the CB kids in need, especially Lenzie who is going to be needing surgery, and Emily who is being admitted on Friday for a BMT. I know we have so much to pray for but there is so much to be thankful for too, so don't forget to count your blessings today! Much love and God blessings,
xo Cait
So then I started trying to figure out why that little episode happene. I had really overdone it with the crafts, but I didn't think that would make that big a difference. So then just like 5 minutes ago I realized that Mom had bought some cherry coke this morning ( something new for me) and I drank a can. I saw the can sitting on the island and realized it wasn't decaf. I had never had caffeine since I got sick and I always wondered how it would effect me. My electrophysiologist always said to "avoid caffeine at the plague." Now I guess I know why.hehe. Needless to say I felt pretty dumb for not reading the can first... I can't believe I almost caused myself a trip to the ER, I'm still kicking myself over it. But no worries, thankfully it all worked out ok.
I am still sleeping on the couch, and I'm really trying to work up the motivation to get back to my bed soon. I've been out here since November, and its really the only place I'm comfortable. But Mom and Dad said I could get a couch for my room so I can still sleep sitting up, but I won't keep getting disturbed sleeping in the family room. I don't mind being disturbed, but I feel bad that everyone else tiptoes around whispering at night and in the morning so they don't wake me up. So I think I'm going to try to get setteled in my bedroom this week.
Now I'm watching Just Like Heaven. I didn't want to see it at first because although Reese Witherspoon is my absolute favorite, I thought it was kind of weird that she was a ghost for the whole movie. But I watched it anyway, and it was the cutest thing I have seen in a long time. Theres a twist in the plot that makes it really good.
I'm going to get back to my movie, but please keep all the other caringbridge kids in your prayers, there are so many who are going through hard times. Like the amazing Diana, who I'm sure would love to get her walking papers. Diana, you are such a fighter and I know you will pull through this, I'm sending you lots of prayers and hugs! I haven't had a chance to check on everyone else yet, but I am sure there are a lot of others out there who could really use some prayers. I hope you're having a great weekend!
God bless and much love,
xo Caitlin
There was a medicine that I had been getting through my J tube for a chronic digestive tract infection. I stopped taking it when I got the tube out because we thought that the tubes were harboring the bacteria and it might clear up once all that plastic got out of my system. Well it turns out I needed to go back on it so I started taking it about a week ago. I didn't expect it to taste good, but this stuff is downright nasty. Its the consistency of elmers glue, slimy, and the most bitter thing you could imagine. Every time I took it my eyes watered and I ended up gagging because it was so gross. Finally yesterday Mom saw me drinking it and when she realized how bad it actually was she looked at the bottle. I'm glad one of us had enough sense to do that. It said "Concentrated. For enteral use only. Not for oral consumption." So when she was in the pharmacy this morning she casually asked why it couldn't be taken orally. The pharmacist told her they concentrated it and took all the flavoring out so it would be easier to flush through the tube. He said, "Its not going to hurt you to take it orally, its just going to be so awful I don't think anyine could get it down." haha. And I had been drinking the stuff twice a day. Everyone in the pharmacy had a good laugh over that one. This morning I mixed it with raspberry sorbet and I could hardly even tell it was in there. I'm sure glad we got that straigtened out.
Other than that things are good here. I'm going to run, I have to give Frisbee his meds. Hes on 2 for his brain tumor, Oliies on 4 (1 just got added this week because he camme down with bronchitis). Add that to my 16ish different meds and we have more drugs than the pharmacy. Mom has all the dog's bottles color coded since Frisbee's bottle got mixed in my pill basket and we don't need to risk me taking doggie pills. I've been trying to help with the dog meds as much as I can since mom is getting pretty sick of splitting pills.
I haven't had a chance to check on my CB friends for a few days, (my computer crashed on Saturday and Dad just got it fixed and back to me.) Please say a prayer for everyone going through bumps in the road, especially my most wonderful Tara at Mayo. Tara - I hope you're tests are over and you're feeling better soon. Love you way more than lots!! :)
Thank you for the prayers...they mean so much to me and give me something to wake up each morning feeling thankful for. :) Love you muchly!
God bless,
xo Caitlin
Well I didn't get out to make my snow angel and snow cones, but I still had fun this week. I have noticed that lately I have a lot of good ideas, like the snow day, and driving by the beach, and a bunch of craft projects that I have been working on. The only bad thing is I never get from formulating the plans in my head to actually feeling up to doing them. I guess in all honesty I know I'm really not up for a lot of that stuff, but I have come to realize that planning is actually as much fun as doing. (well almost). Dreaming gives me that all-important HOPE, which in my opinion is even better medicine than laughter. When today is hard, the best thing you can do is plan on a better tomorrow. In the words of the Famous Banana "WITHOUT HOPE THERE IS NO HOPE". So I'll just keep hoping and then I'll have a ton of stuff to do when I get better. And as long as I keep hoping to go to the beach and the park and all that fun stuff, then I still have the hope of getting better. Amen to that!
I slept really well Sunday night, for the first time since I switched my pain meds. It was the first night that we doubled up on my H1 blocker and I took my usual dose in the morning and then another one at night and I slept for probably 16 hours...hehe. So needless to say I was feeling really well rested yesterday. So well rested in fact that my the changes we have noticed in my neuropathy over the last few months were improved. Actually my balance was so good that I could put on my slippers standing up, just holding onto the arm of the couch. I have to laugh when I'm tripping over my own two feet. Everyone at the dance studio would be dissapointed.hehe. I used to do heelstretches and all kinds of spins and sometimes I wonder how on earth I used to be able to do that stuff. hehe. But even my hands were less shaky after such a good nights sleep. I did some doodling and I was actually drawing like I was before the nerve damage. I even got adventurous and did some ink drawings, which is something I hardly ever do anymore since, well, you can't erase mistakes in pen. So needless to say I was about as happy as a pig in a mud puddle.
Don' forget to say a prayer for the amazing Tara as she is having a few important days at Mayo. Thank you for all the prayers for me and everyone else going through tough stuff. Don't forget to count your blessings too. No matter what you're going through, theres always something to be thankful for, even little things like listening to your favorite song on repeat on your ipod, hospital vending machines that have an endless supply of coffee to keep our devoted moms going...hehe. Well, thats about it...I hope everyone is having a happy Tuesday!
God bless and much love,
xo Caitlin
Don't you love it when you type a whole page and it gets deleted? hehe. I just finished eating my 2 sandwiches for breakfast I came up with this new recipe thats like a hamburger but not. I substitute a portabello mushroom for the burger.lol. And Mom got me a new kind of cereal, puffed Kamut, its like the ancient Egyptian cousin of wheat. lol. And I have puffed millett which is a type of birdseed, but people can eat it too. So yeah, my diet is...interesting.
Today is Dad's birthday (I don't even think he remembered) But we got him some new pants that he needed and Mom is going out to the bakery to get cannolis. Its not an Italian party without canolis. I was planning on making him a scrapbook page with pictures of us and framing it, but I wasn't feeling up to it this week and never got around to it.
Last night I had some mast cell issues. Its like a burning/squeezy feeling in my heart and all my muscles. I have had these little "attacks" for about a year and always thought it was related to my dysautonomia but after mentioning it to the allergist/immunologist last week I learned that it could actually be a build up of mast cells in my tissue. It was getting to the point where every few minutes I had a wave of that dizzy/lose consciousness feeling so I turned off American Idol and just went to sleep. My best mom in the world actually thought to tape the last half for me, and then Beauty and the Geek, so I didn't miss any of my Thursday night TV. When I woke up for my 11:00 meds I felt so much better. I always knew that rest made the mast cell issues better, but I didn't realize I could avoid a major attack by going to sleep. This is such a good thing to know, and I'm thinking that now that I'm aware of it I can hopefully avoid pushing myself so hard that I end up taking prednisone all night.
So now I'm just watching the tapes mom made last night. My latest TV obsession is Beauty and the Geek. This weeks episode is hysterical the girls have to read maps and give directions. they remind me so much of my sister and me. We get lost going to the Y 5 miles away but we can get to Bloomingdales in NY. hehe. But seriously I can't find my way out of a paper bag. Dad is hoping my sense of direction will get better when I get m drivers lisence and actually have to pay attention to where I'm going. We'll see. hehe.
Yesterday we had a little snowstorm, its melting but we still have about 4 inches. Lizzi came home yesterday, and today shes going to come over here. We want to make snowcnes and flavor them with jello.hehe. I haven't played in the snow in sooo long. I want to make snow angels and forts and snowmen...maybe if I'm feeling good I'll try a snow angel. Haven't done that in years.
Ok...now I'm really rambling...Please say a prayer for everyone facing difficult times, Jaye in the ICk-U, Emily going to St. Jude, and the wonderful Tara getting ready for Mayo.
God bless,
Caitlin
Ollie has taken to fake choking when he wants attention. If you're in the room but not sitting with him you'll eventually hear this little "cough-wheeze...cough-wheeze". Spoiled? Maybe just a little. But I can't really say anything since I'm starting to think my parents are spoiling me just a little bit too. I felt like toast this morning, we had one piece of bread left, and I put marmalade on it that made me feel nauseous. So mom insisted on running ot to the bakery to get more bread. So she drove a mile to the bakery so I could have toast without marmalade. lol. Spoiled? Just a little bit. Princess treatment? Maybe just a little bit.
Not really much else going on here today. I hate to say it but the plain toast made me nauseous too. (Don't tell mom!) So I'm going to leave this short today. Please continue to pray for all the CB kids facing hard times, especially Jaye. And praise God for Rachel and Savannah's improvements. Much love.
God bless,
xo Caitlin
Today Lara and Dad went up to Massachussetts to look at a college she got into. I feel bad for them, it is supposed to be rain changing to snow this afternoon, and they have and outside tour scheduled. Ollie usually sleeps with Lara but they left early this morning and he wasn't eady to wake up yet so he snuggled up on the couch with me. He loves to burrow under the blankets and squish right up against you. Then he gets so happy he starts making furby-like noises. Its very hard to describe...kind of throaty mmmmm-type noises followed by little squeaks. hehe. I never realized he gets so warm under all those balnkets. Seriously I think he was hotter than my heating pad.
I'm still sleeping on the couch. I just like it so much more than my bed for whatever reason. I think with the open hole in my stomach, it leaks less when I sleep half sitting up and leaning against the back of the couch. My bed is a day bed, so it has a back and I could probably make it work by propping some pillows up against it. I'm going to try to be back in bed within the next month or two. Its not a problem on weekdays since Lara leaves so early for school and Mom and dad just hang out upstairs. But on weekends and weeks like this one with school vacation, everyone is ready to be up and in here by 9ish at the latest, so I feel bad making them be quiet because I'm sleeping.
I better go take advantage of the time today. I'm making a scrapbook for Lara as a graduation present. I don't want to work on it while shes home and it takes a lot of time to get done since I have to do a little bit and then rest. I'm collaging the inside covers with pictures and magazine cutouts representing all our inside jokes from over the years. I didn't realize we had so many...I'm having a lot of fun doing it, it brings back memories of so many crazy things that I have forgotten about. Anyway I'm rambling now, so I'm off...Please pray extra hard for Rachel, who had some problems after her scans, and Tara who is getting ready to go to Mayo.
God bless,
xoCaitlin
^ Thats what I've been up to...that and eating. This week I noticed that I'm trying so hard to keep my weight up that all I do pretty much all day is eat. Really I could get a gold medal in food consumption. For instance yesterday I had my formula, cereal, sorbet, grapes, carrots, 2 bowls of rice, 5 pieces of toast, and 4 bowls of pasta. No thats not a typo, 4 bowls of pasta. And no, I'm not on steroids at the moment. I honestly don't know how I could eat so much and not look like a sumo wrestler let alone be losing weight. I knew it doesn't all stay down, but I wonder how much actually is staying down. But I'm used to the routine, in fact Dad was laughing at me this morning. I was in the bathroom feeling sick and I was singing show tunes(specifically Adelaide's Lament from Guys and Dolls) in between dry heaves. I didn't even realize it until Dad knocked on the door and asked 1)If I was okay, and 2)Why was I singing while I was throwing up. lol. I guess you can take the girl out of the musical theater but you can't take the musical theater out of the girl. hehe.
I finally solved the mystery of the bruises I have. probably going to have to get my counts checked either today or tomorrow...the sides of my legs are covered in bruises and I was wondering why its only the sides. But I figured out that I sleep on my sides and the bruises are exactly where my leg puts pressure on the couch. There's a quilt down on the couch so I thought that would be soft enough to stop me from bruising but I guess not. I don't mind bruises though, I'm wearing flannel pajama pants anyway so no one's going to see them and think I've been to war.hehe. But I hope that when I get counts done I will feel up to going out to the lab, and as long as I can sit up long enough to ride in the car we can drive by the beach. :)
On Friday I got the most wonderful package from the most wonderful Tara . It was the sweetest handmade card, a CD (Carrie Underwood...yay!) and my new best friend Buddy the groundhog. A stuffed groundhog...how great is that! He has taken up residence on my bed...normally that spot is reserved for Tony Maurice (no idea how I came up with that name) the purple glow in the dark bear I've had since kindergarten. But Buddy is so super cool that Tony had to move over a little.hehe. It was the nicest package, Christmas, my birthday, Groundhog Day, and Valentines Day all in one box. So I guess it was a Chrisbirhogtine's Day present. New holiday for Hallmark to monopolize on! hehe.
Mom and Lara went shopping in Westchester today. Uncle Bill gave her a gift certificate to bloomingdales so they are going to go have fun with it. Dad is home with me today, we have so much fun on days when he works out of the house. We're going to watch Sahara in a little while.
Please ontinue to pray for everyone in need, especially Pam, who is trying to find a cat-friendly apartment, Rachel who has scans today, and Jaye, who haf a setback. And don't forget to count your blessings too...no matter what road you're on, theres always something to be thankful for. xo and much love.
God bless,
Caitlin
Healthwise I have been out of commisson for a little while again. LAst week I had a reaction to my pain meds and had to stop them cold turkey, which is aparently not good to do. They are normally tapered slowly. For those of you on opiates/narcotics I reccomend the taper. hehe. I never ever would have guessed that I would be going through drug withdrawl. I am the girl who didn't want to go into the pool hall to use the bathroom.lol. Definitely not the druggie type. So besides getting used to being in pain all the time again I have been up at night with the shaky/sweaty/itchyness going on. Its really not too bad during the day, just keeps me (and poor mom) up all night. When it gets annoying I just try to remind myself that I have been through stuff that was way less fun, I mean yes, itching all over is annoying but its nothing terrible, one of those things I can definitely deal with. The silver lining (and isn't there always one) is that theres a ton of good stuff on tv this week. Yay for the Olympics! :) I had to write a tv schedule out (partly for OT partly so I don't forget to watch anything. Tomorrow there is Gilmore Girls, the Olympics, the Westminster Dog Show, and American Idol all at the same time. And then Beauty and the Geek. I'm going to have to tape something in the other room...and the basement...and borrow one or two more VCR's. hehe.
Thank you to all the wonderful people who sent me birthday wishes/presents. You made my day super special. It was quiet, but a good quiet. The kid of day thats full but not so overwhelming that you pay for it later that night. My Dad even put a candle in a jello cup. hehe. The amazing Katie sent me the cutest bead bracelet...that girl is very talented with beads. :) Its super cute. And then my parents got me The Price is right DVD game. I know...how perfect is that?! I was almost tired from grinning when I opened that one. And then I got the book that the movie the Princess Bride is based on. I have been wanting that for literally years. And Lizzi sent me a Friends mug and a shirt that says Friends on it in rhinestones. Now I just need to get out so I can wear it. So it was a perfect day. I even happened to wake up for meds at 9:40 and Mom and I counted down until 9:42 (the time I was born). And then mom took a picture to commemorate the moment. I'll get that on here soon too.
Don't forget to say a prayer for everyone in need. Tara , Katie , Sarina , and Pam could all use some prayers and cheery messages. I know I always request prayers for various people to, but I fail to mention don't forget to count your blessings...despite whatever road we are traveling we all have so much to be thankful for in life. To those who are snowed in, stay warm!
much love and God bless,
xo Caitlin
I hope everyone had a happy Groundhog Day. My mom taped the groudhog on the news for me...I have always thought Grounfhog Day was fun...everyone needs some kind of pointless holiday. Theres enough bad stuff going on in the world, once a year everyone needs to get all that out of their heads and watch a groundhog stand in the sun. Personally, I think its brilliant. Mom and I had our own little ceremony too. Ollie was the closest thing we had to a groundhog, so we let him out into the backyard and he saw his shadow. So according to him its spring hehe. I took a video and some pictures and I'll try to get some of the pictures up here as soon as I can find the cord that connects the computer to the camera.
Yesterday Mom went to A.C. Moore and got me a ton of yarn. I got some white chunky wool that I have already started maing into a scsrf with little wavy stripes. And then I got some yellow yarn that changes from white to yellow, and then the same thing in pink. And she got me some in purple too. So it was like Christmas yesterday morning. Actually it was an early birthday present so I don't get too tired out opening everything tomorrow. Yup, tomorrow is the big day. I really don't hae anything planned, maybe I'll try to go to the park or something, just to get out. But I am just staying quiet today so I don't get too sick from everything tomorrow. I am kind of excited though, after everything I have been through this winter it feels really good to think about 22. It sounds like such a good number. hehe. I think I am the most excited that I can ever remember being for my birthday, not so much excited as blessed feeling. After having doctors tell me that this day wouldn't happen it just feels so good to think that as long as the sun comes up tomorrow morning I'll be 22. Just saying it makes me feel so grown up...it definitely feels like an accomplishment.
Ok I'll get off my soapbox now. I hope y'all had a Happy Groundhog Day. hehe. Please say a prayer for Pam who is still in the hospital and Savannah who is recovering from her transplant. Lots of Love!
God bless,
xo Caitlin
I'm baaack. :) I got my internet card fixed on Thursay and I have been meaning to come and update but every time I ended up taking a nap instead. hehe. My mom has a stomach flu that has been making her really tired, so its possible that she shared the bug with me. Its kind of hrd to tell when I get a stomach bug since I usually throw up anyway. My guess is that I'm probably tired from low counts. My legs have been covered in bruises this week so I'm guessing I'm low on at least platelets.
Lizzi went back to school on Monday so now I'm just trying to adjust to not haing my best friend here all the time. And she really was here all the time. Sometimes she would stay and hang out with my mom and Lara after I went to bed. hehe. But she called me last night on te way to youth group, the pastor got sick last minute so she needed help coming up with a lesson plan really fast. So that was fun to plan. We ended up with a setion on the elements of prayer and then leaving time to start a prayer journal (and of course play the third day cd hehe).
Yesterday I was feeling up to playing the piano, but not up for sitting up in the living room so Dad brought out my keyboard and put it on my lap on the couch. When my grandparents bought that keyboard when I was 8 I bet they had no idea how much use I would get out of it. I never appreciated it much when there was an upright grand in the next room, but now that I don't feel up to sitting up much it is such a blessing. Its nowheres near a full keyboard but its light and fits perfectly across my lap. Ok, enough rambling about my keyboard...hehe.
Thats about all from my little corner of the world. Please say a prayer for all the kids in need, there are so many, especially Savannah who just got her liver transplant.
God bless,
xo Caitlin
I remember Pastor Dave reading this verse to me several times back in December, and at the time I was comforted by it and I remember thinking after he read it "So what ever happens, it is going to be good". But today this morning I was looking over all the scripture that my prayer warriors left for me and I saw that verse in a whole different way. The dictionary defines gain as:
To come into possession or use of; acquire: gained a small fortune in real estate; gained vital information about the enemy's plans.
Gain(v.):
1. To attain in competition or struggle; win: gained a decisive victory; gained control of the company.
2. To obtain through effort or merit; achieve: gain recognition; gain a hearing for the proposal.
3. To secure as profit or reward; earn: gain a living; gain extra credits in school.
4. To manage to achieve an increase of: a movement that gained strength; gained wisdom with age.
5. To increase by (a specific amount): gained 15 pounds; the market gained 30 points.
6. To come to; reach: gained the top of the mountain.
While each of those sounds like a wonderful thing, I would rather lose everything and still have Christ. Now I know Why I had the strenght to fight for so hard and so long. For me, there is nothing I could gain that could compare to knowing Christ. :)
Speaking of gaining, I really need to do some. I was down half a pound this morning, which I know really isn't much but when you're 81.5 every little bit counts. And of course the pajamas that mom got me don't have drawstrings in the waist, which we didn't realize until after she cut the tags off and washed them. I tried them on anyway but they fell right down.hehe. Today I'm going to try to put a ribbon in them so I can cinch them up.hehe. But other than that healthwise I am doing okay. I actually had a few minutes yesterday where I felt really good and I actually thought of going over to the piano for a little while but then I didn't want to overdo. So maybe if I feel good later this afternoon I will have Dad bring my keyboard out to the couch. I tend to get out of practice pretty quickly with my neuropathy, which I really don't want to happen. Plus Frisbee looks bored, he loves to sit under the piano when I am there and he definitely has favorite songs. He comes over when I play certain songs and leaves at others. He tends to like jazz. It's real cute. And then of course theres little Ollie who just barks at anything. I'm sure sometimes he thinks he a German Shepherd instead of a Chihuahua.hehe
Dad had to go into his office today and Mom is out grocery shopping. Yes, they finally decided I can stay home alone for an hour! It feels so good to have freedom! hehe. I woke up at 9:30 when Dad left so I could have the house to myself for a little while. Of course I am just laying on the couch journaling...but when Mom comes home I'll tell her I had a wild party.hehe.
Well thats about all thats going on here at the North Pole. (Really it is freezing outside. Mom's car doors had been frozen shut for the past 2 days). I am going to go read Utopia...Dd went to the library for me the other day. :) And I still have some knitting projects to finish for Christmas presents. I had planned on having the whole month of December to finish them and then well...so I'm a little behind this year but I don't think anyone will mind too much. I will try to update again in a few days but we have been having internet problems, so if I don't get on again this week that is why. Thank you all so much for the prayers, that is what keeps me going. Please keep praying for all the other caringbridge families, there are some people out there who really need miracles right now! I hope you all have a lovely Tuesday!hehe
God bless,
xo Caitlin
It has been working out so well and it really is such a blessing that Dad works at home. ow that I'm not "critical" anymore Mom can get out a little bit. Its hard enough being stuck at home when you feel sick, but she has been stuck here and she feels good...I would go crazy! hehe Plus Dad and I really have fun together, we watch tons of cheesy on demand movies, and God bless him, he's really trying hard to get my med schedule memorized. lol. He's even learned all the generic names that some of my meds go by.
An old friend (Sandy) from elementary school called last weekend which was a really nice surprise. I haven't seen her for about 3 years but she saw my mom in the mall and shes home for a while, so she called and asked if she could come over. She was supposed to come today, but last night wasn't the greatest for me and I don't want to overdo, so we are going to try for next week. So now I have something for next week to look forward too. Lizzi came over last night and we watched more Gilmore Girls and Friends, but I ended up needing to go to bed so she went downstairs with Mom and Lara to watch project runway. I'm still sleeping on the couch, I feel bad taking up the room with the good tv, but I kind of need to be able to lean against the back of the couch to breathe better. But the swelling and wheezing is definitely tons better, and thats with me being off the maintenence meds so I'm hoping I'll get back to my bed soon. I better get back in my room soon before everyone else turns it into storage again. Last time I went from the hospital to the couch my telescope ended up in the garage behind a mattress.hmmm.
I hope everyone has had a good week. Thank you so much for all the prayers and wonderful messages you guys have been leaving for me...it is such a blessing to know such wonderful people! I couldn't do this without you!
Love you muchly,
xo Caitlin
Sorry to keep y'all worried about me, but I'm back and I'm ok now...well at least ok-ish.hehe. I was kind of hesitating to share the whole story of what happened since I didn't want anyone to be worried about me,(I promise I will be ok!)but everyone has been wondering where I have been so I guess I better tell.
I think it ll started on November 30, after my morning feeding I felt really sick but I didn't really think anything of it, but then after my flush that afternoon I had an "allergic" reaction so we gave me benadryl and I was just resting. By 11 that night I was in preanaphalaxis so we called Dr. Sora and he said to go into the ER. My tube surgeon Dr. Rosenblat met us there and he had talked to my allergist/immunologist and they felt I developed an allergy to the tube since I have so many plastics sensitivites and I have tested positive to all the other brands of tubes except this one. So they admitted me to the SICU and put me on benadryl and it really didnt seem to be a big deal. But the next morning I started with stridor and aving a hard time breathing. They started with EKGs and all that stuff and my heart went into arrythmia. So at that point the ICU team came in and started talking to me about what kind of tubes I could be inubated with. I really did not want to go on a vent so it was perfect timing when Pastor Dave and the Reens (awesome prayer warriors) came in and they just stood in the coner and prayed while everyone was working on me. Then Dr. Sora had the brilliant idea of putting me on high dose steroids and upping the benadryl to every 2 hours. An hour later I was breathing better and I ended up not having to go on the vent. Answered prayer! :)
So I stayed in the hospital a while just being monitored since I was in arrythmia to begin with and the steroids do that to me anyway, but they didn't even want to leave the telemetry stickers on me since I was having a plastics reaction. They did some tests and found out that I have mastocytosis, which is a disease where my bone marrow produces to many mast cells, and one of the things the mast cells are doing is starting all these reactions. They are also the reason why my blood counts are so low. So pretty soon I am going to be starting treatment for that. The most effective treatment is chemotherapy but no one is crazy about stating that now so I am probably going to try some different meds first. After a while in the hosptial they said they couldn't really do much more and gave me two options. They said we could leave me on the steroids and see how long my heart could tolerate them or we could take the tube out and see if I could sustain myself. All the doctors wanted to leave the tube in since they were pretty sure I couldn't eat enough without it. So I decided to go home on the meds and see how it went. I hosently don't remember much from those 3 weeks...I could only stay awake for like 10 minutes at a time. But I remember that between Pastor Dave, Pastor Randy, the Davidsons, the Reens, and the Shouvlins, it seemed like every time I woke up there was someone there praying for me. Calvary people, all I can say is God bless you all...you are angels.
The good news was I got to be home for Christmas. We didn't put up a tree this year with everything going on but Lizzi came over in a Santa hat and brought me a little tree with lights and ornament and everything. And I was awake for a little while in the morning to open presents...well actually mom opened most of them for me but it was still fun.
After 3 weeks of the meds I was getting really weak so my doctors decided we didn't really have a choice and we had to take the tube out and get me off the meds. So I went in to short stay and got it out. I couldn't have anesthesia so I was a little curious as to how they were going to take it out. Dr. Rosenblatt offered me lidocaine but since I'm allergic I didn't want to take the chance of having a reaction so I did it without any pain meds and it really wasn't as bad as I thought. Although I was really surprised at how huge it was. It was about the thickness of my index finger and 48 inches long.
So now here I am 2 weeks later and my steroid dose is down to 2.5mg and I am going to try bringing in down to 0 today. :) I am soo hapoy to get off these meds. I am pretty much awak all day now with the exception of 1 nap and I can stand up and even walk a few steps by myself. It feels sooo good to be making progress and see a light at the end of the tunnel. The eating thing is definitely going to take some work but I'm trying my best and just having faith that God will do the rest. In the words of Dr. Santilli, "its time to eat and pray." hehe. So thats what I'm doing. Thank you all for your prayers and I'm sorry I haven't been signing any guestbooks but I have been thinking of ad praying for each and every one of you.
The Counter is about to hit 10,000 soon!! :) yay If you are the 10000th visitor, drop a note in the guestbook and let me know and I will make a donatiion to DYNA in your honor. I hope every had a blessed holiday and I hope 2006 brings you a year of health, happiness, joy and peace.
xo Caitlin
The snow melted. :( But thats okay, I know there will be more soon enough. On Sunday the church had a social at the missions house for all the college kids who were home on break. I love these socials because its one of the few times a year where everyone is in one place. I was feeling up to going and I actually stayed until 9:30. The bible study group was making fun of me for that because I always leave the Pitts' house by 9, and our joke is that I turn back into a pumpkin at 9. So yeah, the last half hour I was at the social was full of glass slipper jokes and such. Dad drove me which was really nice. Since I haven't been going out as much now thats its cold, we haven't been able to have our little "car talks" in a while.
Other than that I got a new couch for my room this weekend. My Aunt and Uncle's friends are moving back to Italy and only taking one suitcase each, so they were selling their furniture really cheap. Its white with an embroidered flower pattern and think pink stripes and wooden legs. It really matches nicely with the girly theme in my room. Now for the bad news - with this bone marrow junk my immune system is so vulnerable that it is fighting anything new in my environment. Thats how I got the nylon/spandex allergy, and the sterilized plastics allergy... So we brought the couch in last night and after sleeping in the room with it for a few hours my throat started getting swollen. grrr. So now the couch is on the porch outside my room. I felt really bad that Mom and Dad had to carry it outside at 3 in the morning. And now its sitting right outside my window looking really comfy and cute. I think its mocking me. :P
March of the Penguins came out on dvd today and my wonderful mommy went out and got it for me. I have been waiting forevvver to see it. I just looove penguins. I have been counting down the days until it came out on dvd. I always do that. I see a trailer for a movie and I can't wait to see it. The only problem is sitting up for 2 hours in the theater. So then I have to wait for what seems like forever for the movie to come out on dvd. So when it finally does I get really excited. Well I better go...the penguins are waiting. hehe. (although I'm getting cold just watching). Don't forget to say a prayer for Rachel, she has scans coming back this week...and Pam got the results of her scans so she could use some prayers too. Pam - I think Ollie has a Christmas present for you. hehe. Thank you all for signing my guestbook. I know I don't say it enough but every little message cheers me up. :) God bless!
xo Caitlin
I know its a little late....but Happy THanksgiving! The way I see it, why pick one day out of the whole year to be thankful when you can count your blessings every day? So here is my 2 days late thanksgiving entry. I got the best Thanksgiving present - the first snow of the year! *grin* Mom woke me up at 4am on Thursday and we watched it snow for a few minutes. I wanted to go outside in it but it was a little too cold. But it was sooo beautiful and white in the moonlight. Theres just something about the first snow of the season that seems so pure and white and magical. Ok, now I'm starting to sound like a greeting card. hehe.
My Thanksgiving was quiet but good. Dad's family was kind of scattered this year so we stayed home just the 4 of us. Originally we were going to go out to eat with my Aunt at the restaurant where my cousin is the head chef but I wasn't feeling up for it so everyone stayed home with me. How absoultuely wonderful is my family? They're the best! We had stocked up on movies so we watched War of the Worlds, the Polar Express, and of course the parade and the dog show. Then Lizzi came over and we watched Mean Girls (so fetch!). hehe. So it was a fun day, even if it was a little untraditional.
In the spirit of the holiday, heres my list of what I'm thankful for. Actually I was thinking about it and theres not much I'm not thankful for. This list could go on for pages and pages. I am sitting here trying to decide what to be thankful for, and thats just the thing, I can't decide. I just feel so unbelieveably blessed right now. I'm thankful for faith and hope, and all the many examples of his faithfulness and grace that God has shown me. Theres my family, not just my real family, but my DYNA family, my church family, and my caringbridge family, and my friends. The wonderful people who have stuck by me even at the times when it would have been easier to walk away. I'm thankful for all te little things like snow and good books and snuggly pajamas and the little birds that are hopping around outside the window. I know this is going to sound crazy, but I'm thankful for dysautonomia. Don't get me wrong, if I could get rid of it, I would send it away in an instant. But I am thankful for the stronger, wiser, more appreciative person it has made me. If you had told the healthy 16 year old me that I could make it through all this I never would have believed you. But here I am, still going strong. I have learned things I never would have known if I hadn't been down this road. Because of dysaut. I can be thankful for the little things that I would have never noticed before. I can be grateful for sitting on the couch being bored becuase it means I feel good enough to be bored...
I could go on, but this is turning into a novel, so I will let you get back to your leftover turkey sandwiches. If you could please say a prayer for Lizzi's mom Darlene who had surgery on Wednesday and is still recovering. I hope you all had a wonderful Tanksgiving and feel as blessed as I am feeling right now. :)
much love,
xo Caitlin
After the service a bunch of the family came back for lunch and ended up staying until 10. My cousin is going to med school, so were picked each others brains for a while and she thinks she might be on to something with this bone marrow stuff, so I am going to be getting my mast cells tested in the next few weeks. Last night a bunch of cousins came over that I really hadn't seen in a while. They are 13, 10, and 6, and they have grown up so much since the last time I saw them. Actually they only live two towns over, but we just don't get to see each other that often. Well 30 seconds after they got here we were all caught up and acting like we had never lost touch. We had sooo much fun. They really are the sweetest girls. And I liked the fact that they happened to think I was pretty cool. The two little oes were copying everything I did...if I got a sprite, they got a sprite. It was really cute. Its not very often that someone thinks I'm cool, so when it happens I'm all for it.hehe. After a while I went to lay down in bed and they played twister in my room while I did the spinner. They didn't want to leave but we are going to get together again over Christmas break.
Healthwise I am crashing of course...last night my blood pressure was 61/36, so I have just been staying in bed all day today and it feels pretty good to just be quiet and space out with my one tree hill dvd's. As long as I stay on tramadol and zofran, the yucky feeling is tolerable and it was wayyy worth it to have all the family together again. It was such a blessing. God is amazing, in the face of death we had one of the most joyous celebrations ever. Only Jesus could make that possible. Thank you all for your guestbook entries, support and prayers.
much love and God bless,
ex-oh Caitlin
ROSALIE JULIANN WHEELER
septmber 4, 1915 - november 15, 2005
I have been procrastinating doing this update today. Nana passed away last night. Around 8:00 the fever got the best of her and mom got the call that she was having trouble breathing. Mom got to go be with her, and sat with her for a while. When Nana was really uncomfortable mom told her that Jesus was waiting, and to run to Him. Right after that she took her last breath. As much as I miss her, I feel so much peace and I am so sure of where she is.
It still seems so surreal, Nana has been nicknamed the energizer bunny, she just keeps going. I just can't believe she didn't wake up this time. Thats what Nana does - she dies and then she wakes up. This is the 4th time she's died...she was even officially pronounced dead when she was 2. Last night I asked mom is she was sure Nana wasn't still breathing...even the nurses stood there for a few minutes waiting for her to take another breath. But after 90 wonderful years she was finally ready to go home.
So what is there to day about Nana? Her nurses said she was their favorite patient, she was so sweet that if they were having a bad day they would always feel better after taking care of her. But she had plenty of spunk too...I think my Grampy's most used phrase was "Oh Rosalie." hehe. I will always be able to hear his voice saying that. I'm laying here trying to think of a favorite Nana memory, but in the words of the potato chip commercial, "you can't have just one." Theres her flowers, her african violets, her cactus garden, sewing doll clothes together, the way she said the St. Jude's novena every night...she always had bonbons and eskimo pies in the freezer and individually wrapped slices of american cheese in the fridge. And although I have no idea what they mean, I will always remember the Yugoslavian songs she used to sing to me. So today I will be watering my african violets and singing in Yugoslavian. I LOVE YOU NANA!!!
xo Caitlin
This morning turned out to be somewhat...eventful. Aparently dad hasn't been keeping up with changing the smoke detector batteries, so I guess its a good thing that I tested them this morning.hehe. Mom was out visiting Nana. I woke up around 10ish and decided to do some cooking. I have no idea why I wanted to cook, but I just felt like experimenting with some of my Aunt's old recipies. So I put a pot of vegetbles on the stove, and turned it up to high to get it started. Thats around the time that I passed out. I usually wake up within a minute or two but for some reason I was out for a little bit longer this time. I guess its a good thing no one was home, I'm glad I didn't scare anyone. At least since no one was here I avoided a trip to the ER. hehe. I must have been out for around 40 minutes, snce when I woke up it was 10:48. So the vegetables cooked on high for 40 minutes...yeah. When I woke up all the water had steamed out of the pot and the vegetables were all black and smoking and burnt onto the pot. The entire downstairs was filled with smoke...gray air and all. The smoke alarms never went off and the dogs slept through the whole thing.lol. Mom came home and was teasing me that I must have been smoking and made up the vegetable thing as a cover.hehe. Now we decided I should only use the microwave when I'm alone and wait until someone is home to do any cooking or baking...just in case. At least now we know the smoke alarms aren't working. And there's even more good news...the pot was salvaged. :) After I got some fresh air I felt soo bad that I ruined mom's favorite pot. So at least its ok. :)
The neighbor who lives behind us just called..she made me some heating pads. *grin*. She knows me well.hehe. She puts scented stuff in them so when they heat up it smells like lavender and different herbs. Nana is feeling better this morning. She's not back to 100nd not talking much yet, but shes eating and her fever is better. So its been a good day.
Not much else going on here...I hope everyone is feeling good and having a great day! Please say a prayer for Bailee, shes still in the hospital. Thanks and God bless you!
xoxo Caitlin
Unfortunately my Nana is sick again. She has another infection/virus...we're not really sure which one. She has a fever and is not talking..just like last time, but at least she is drinking by herself so she can stay off the IV. The one thing they did find is her potassium is low. Now I know where I get it from. :P She woke up at the mention of chocolates yesterday, so I think thats a pretty good sign. Although the world could be coming to an end and Nana would be sitting there eating chocolates. I feel bad for Mom, shes running between Nana at the Manor, and me here. I've been on couch arrest for the past few days. I don't mind, except that it makes it hard to type while I have my legs and my head elevated and I'm sitting in a little hole surrounded by pillows.hehe. My blood pressure is "up" today though...65/50 laying down. Yes I consider that up. hehe. Dad called Dr. Sora on Friday and he said "get in bed and be quiet. Don't go to the ER or they'll put you on life support." I thought that was hysterical. I was running 90/65 for a little while last night and I told Mom it was high. lol.
The best news of a very long time - I got the brochure today for Charis Bible College. They were switching their correspondence program from videos to DVD and are almost done. So the first term should be starting in a few weeks. I will officially be a COLLEGE student. Honestly, a bible college starting a distance learning program is answered prayer. When I put "go to college" on my to do list 5 years ago I was expecting that I would get better in a few months and go off to school like everyone else. After waiting so long and praying so hard, I think I am even more excited now than I would have been if things had actually worked out that way. God found yet another way to let me know that he always answers prayers, even if its in a different way than we would have imagined. He is so faithful.
I hope everyone is having a good week. Please pray for Diana who has been having a rough week in the "Spa". Diana, you are an inspiration to so many people. "Some people walk in the rain, others just get wet." You are proof that you can not only walk in the rain but dance and splash in the puddles. I'm praying for you and sending you lots of HUGS!! Hope you feel better real soon!! Also, Rachel is having scans this week, and Jacob could use some prayers too.
God bless,
xo Caitlin
Last night someone came and toilet papered Lara's car for mischief night. Whoever it was did a really cute job. hehe. They spelled out her initials with squares of toilet paper on the hood.
Today I had a doctors appointment, and while we happened to be in the Westport/Norwalk area (yes, where Martha Stewart lives) Mom and I decided to go to Stew Leonards. We were going to go in the cheesy haunted house together. Unfortunately it ended up being in a cornfield...so considering my psychotic corn allergy we decided to skip it. But I did get two pumpkins to decorate. And the cool thing was we met Stew Leonard. He said hi to us when we came in, and I didn't even know it was him. Mom had to tell me. So I thought that was kind of cool. hehe.
I better get to bed...I started this update at 6 and its 9:20 now lol. Well I hope everyone had a good halloween!
God bless,
Caitlin
Lara is out getting her flu shot. Since I can't get it the rest of the family is. So needless to say I got quite a few evil looks this morning once she found out about the appointment. I hope I will be forgiven by the time she gets home. hehe.
I'm feeling alright today so I'm going to try once more for bible study tonight. Last week I didn't make it...well I guess that fact is debateable. I managed to get all ready and I actually made it to the sidewalk in front of the Pitts house. I didn't really feel up to being out but I reallly wanted to go. So I kept thinking that if I sat in the car for a minute or two I would feel up to going in. I knew it was really not smart to even try, but I did. I finally said to mom "I need you to tell me this is a bad idea." lol. So we went home. I have this thing where if something is going on, no matter how I feel, I would push myself to the ends of the world to make it. Even if I know I'll feel so crummy that I will be miserable the whole time I still have to go. I think its that I have a problem with the rest of the world going on without me or something...yeah, something I need to work on. So I am going to try to go tonight. I've heard that we might be having missionary night. A bunch of the missionary families are back in the states for a while, so I think a few of them are going to come have a chat with us. Its amazing how much we take our faith for granted in this country...it really sinks in when you hear stories of what some people have to go through just to have part of a bible in their home. I have soo much respect for people who are willing to risk their lives for their faith. Thats true belief.
Please continue to pray for all the caringbridge kids in need...I know Jaye could really use some healing! I haven't checked up on all my friends yet tonight, I decided to journal first, so I'm not sure who is in need of prayers tonight, but I'm sure there are lots. Please also say a prayer for Pam's kitty Precious...she has leukemia and is not doing well. Precie- Frisbee say he loves you and he hopes you feel better soon!
Well I hope everyone is doing well...have a good weekend!
God bless,
xo Caitlib
I went to the grocery store on Sunday with Lizzi and I was sitting there thinking about how there are mainly two types of people in the world. Starers and forbearers. I always noticed it, but it hit me how many people either stared at me or deliberately look away. Actually the only person who didn't seem to mind was a 5 year old girl who struck up a conversation. But its amazing how many people see an illness and not the person under it. grrr. I am still the same person I was 5 years ago, but I guess most people don't see it that way. SO what if I'm a little pale, or use a wheelchair, or am hooked up a tube...I'm still human for goodness sakes. Back to the two types of people. The starers, they're the ones who give you the zoo treatment. They practically glue their eyes to you and couldn't look away even if they tried. And then theres the forbearers...they will go to any length not to make eye contact. Like if they look at me they will catch whatever I have. For what I can see I'm just another girl in the grocery store with her friend, trying to find some out of season marshmallow peeps. I saw an old friend from middle school down the other end of the aisle and I waved at her. She kind of glanced up really quick out of the corner of her eye and then spent a reaaaaally long time reading the back of a cereal box. I was going to go over and say hi, but I was pretty dizzy so I just wanted to get home. But it kind of hurt that she didn't see me as the same person I used to be. I hate how some people just can't realize that there is a person just like them inside a not so normal body. I just wanted to say, that if you're here because you have your own caringbridge page and your own struggles, you are not alone, and no matter what is wrong with you, I think you have the same value as anyone with a "cookie cutter body". God created you, so he obviously wants you in His world, no matter what you can or can't do. And to the rest of you, if you ever see someone (and chances are you will) who does not have the most perfect circumstances, no matter what they are going through on the outside, there is nothing wrong with them on the inside. I am not going to dwell on the people who can't see that...But I want to say how thankful I am for that 5 year old who had the heart to walk over and show me her minnie mouse cell phone. It made more of a differene to me than she could realize. Maybe they really do teach you all you need to know in kindergarten.
Thank you so much for all the prayers and messages. Please continue to pray for Jaye as she fights rejection, and Linda as she gets more chemo and radiation!
see ya later alligators,
xo Caitlin
I finally found my telescope. Dad had put it in the garage behind a mattress. I'm starting to get a little suspicious that someone is trying to hint that I shouldn't be out at night by myslef, but if I stay in the yard I really don't see how its a big deal. I'm usually just outside my bedroom door, and the porch has railings, so I won't be able to fall very far if I faint. And grass is actually softer to land on than carpet hehe. The rain finally stopped here, after 9 1/2 days. hehe. The moon was sooo beautiful last night and the stars were bright blue, so I went out stargazing for a little while. The Orionid meteor shower is in a few days (I know, I'm a geek) so hopefully I will feel up to getting out of bed and going outside at 4 in the morning. hehe. If anyone else wants to see a shooting star, they're in the Orion constellation, near his club. Ok, enough astronomy rambling from me.
Please keep my friend Jaye in your prayers. She has the same type of dysautonomia as me and she is not doing very well. It is always kind of a wake up call when things like that happen because it could have just as easily be me instead of her. It really makes me so grateful for each little thing that I can do. I can sit up on the floor and pet Frisbee.I got up to brush my teeth this morning. I was so qucik to forget that just a month or two ago I couldn't sit up without my blood pressure bottoming out. Mom was brushing my teeth for me. If anyone doesn't deserve to be sick its Jaye. She most likely the sweetest person on this planet.
Jaye~ I am praying for you and I know you can get through this crash. Until then I know God's power is being made perfect in your weakness. I hope you are feeling better and on those swings soon. :)
God bless,
xo Caitlin
Of course I cant go to the lab without going to the seawall. :) It was the perfect day to sit on the beach...so nice and sunny. There were little kids making sand castles and I felt like joining them.hehe. There was an article about the sea wall in the paper this week and I was curious to go see what was going on. There are stray cats that live in holes in the wall and there is a lady who comes around and puts out food, water, and milk for them. Aparently there have been sightings of "giant" rats eating the food. I went there expecting to see something like the Rodents of Unusual Size from the Princess Bride. But I didn't see any rats (or the cats for that mattter...maybe the rats ate them). Anyway, heres a picture of the cats...I'll try to get one of the rats for next time :)
Liz's party is coming up. I'm so excited!!! Just one little problem...I don't have any pants to wear. I have lost about 10 pounds in the past month and my only pain or jeans is huuuge. lol. So my wonderful mom went to the mall and tried to find me pants. It was hard enough to find pants long enough before, but now of course no one makes 00 in anything except reaaally short. Good thing I don't really care about fashion or any of that stuff because my outfit for sunday is going to be pretty interesting. hehe. I'm hoping it will still be warm so I can just wear a skirt and pin it.
Please continue to pray for all the other caringbridge families...especially Pam who is having a rough time lately. (((HUGS)))
God bless,
xo Caitlin
Unfortunately I couln't find my zofran before we left so I tried to get by without it which didn't really work. I was ok for a little while but I had to go lay down in the car while mom went into the curch basement where they had all the appley foods. I was really looking forward to smelling it all (its the next best thing to eating!) but thankfully we came home with a huge pie. And it smells really good. :)
Other than that it has been freeezing here. I hate it when it gets below 75. Not good when you have temperature regulation issues. hehe. So I have been huddled under my tinkerbell blanket with the heating pad today. Ollie looks cold too...he has been staying in his cat house like a littler hermit. (yes my dog sleeps in a kitty house). I ran out of books so today I reread the Chronicles of Narnia. I haven't read it since third grade and I didn't quite catch on to all the symbolism then, so I wanted to read it again before the movie came out. Not much else going on here. I got a surprise present - the sheet music for the there from The Notebook. I have been looking for it forever. :) Every time I watch the movie I always rewind and watch the beginning a few times because I looove the music so much. My Dad must be sick of watching the guy row across the lake. hehe. So I have been glued to the piano for the past few days. So to everyone who thinks I have gone AWOL on AIM, I'm sorry I haven't been on much the past few days, but my fingers are sore from all that piano.
Speaking of AIM...I noticed some new people have signed the guestbook. If you ever want to talk my screen name is Centralperky24. Thank you all for caring enough to check in on me. Thank you all for the prayers!
God bless,
xox Caitlin
Last night I got out to bible study. It was so good to get out and see my Calvary family. Plus yesterday I got a new Chris Tomlin CD, so the car ride there was fun too. :)I was able to stay from 7:30 to 9 and I have to say the crash 2 faints today were worth it. hehe. (Although if you had asked me in the middle of the night you might have gotten a different answer) :P
We may have finally solved the mystery with Frisbee. I love him to death but he really has been driving us crazy lately. He roams and wanders the house all night, just walking into everyones rooms, sniffing around, crying, panting, and then moves on to the nest room. He goes through all the bathroom garbages and takes out tissues and shreds them. Then he has to go out about a million times. Since he is my dog, he spends most of the night crying to get on my bed and then jumping off when I fall asleep. On Tuesday I stayed up petting him most of the night to keep him quiet and happy. We called the vet and he thinks Fritter has doggie alzheimers. So he started some pills that will hopefully be working in a few weeks. The funny thing is that now Frisbee and I get our meds from the same pharmacy. The pharmacist (who knows our family pretty darn well by now) was wondering who Frisbee was and thought it was pretty funny when my mom explained. The only thing is, now his pill bottle looks exactly like all of mine. Dad brought me zofran this morning and left it on the coffee table next to the dog pills. I reached for Frisbee's pills a few times before I moved them just to be safe. Although who knows, maybe some alzheimers medicine is just what I need. hehe.
Please continue to pray for Tara, shes stuck in "club med" and you know how much fun that is... And little Rachel had scans today and yesterday. Please pray they are 101LEAR!
God bless,
xox Caitlin
I've been having a little bit of a sulky afternoon. The quote from Mother Theresa comes to mind..."I know that God will not give me something I can't handle. I just wish He didn't trust me so much." I got the invitation for Lizzi's birthday party in the mail today. It is at On the Border. yup. A mexican restaurant. Where there is an abundance of corn chips and corn flour and corn tortillas. Not the ideal place for someone with a corn allergy and no immune system. I called the immunologist to see how he felt about me premedicating before I went and wearing a mask. He said no way since right now I pretty much have no immunity. It just doesn't seem fair that I had to cancel my 21st birthday party and no I am missing my best (and pretty much only) friend's party. I am going to have a lot of paryting to make up for in heaven. Hey, I might as well think big and start planning a party for when I get better. I guess God thinks I am stronger than I am...or maybe I don't realize just how much strength he has given me. Now I'm just trying to think of something really fun and special that Liz and I can do together. I haven't told her about this little problem yet and I know how upset she will be, so I just need to come up with a way to make it up to her.
My oncology/hematology appointment has once again not been scheduled for this week. I know its really irresponsible, but if I'm going to get out this week, I'm going to bible study, not to the doctors office. Even if my counts have dropped theres nothing they can really do anyway. And I don't feel like being hospitalized for blood/bone marrow disease. I'm just getting used to the outside world again. hehe. After this last scare I really don't feel like getting anesthesia just for a bone marrow biopsy. The way I see it God is bigger than any number or statistic that any doctor can give me. What does a number mean anyway? I feel alright, isn't that more important? I think I'm going to protest blood counts. The same thing is going on inside me wether I know it or not. Why find out just so everyone can get worried about it? Point being...ignorance is bliss.
Thank you to everyone who read this far and put up with my whining. hehe. I really wasn't trying to complain, its just one of those days where I really don't feel good to begin with and then I get reminded of my limitations about every 5 minutes. :P DYNA kids you understand...But the good thing about not so good days is that they make the good days seem incredible.
Please say an extra prayer for Rachel...she has scans tomorrow and could use some prayers that they come back all clear! Diana and Sarina - I'm sooo glad you're feeling better! Tara I hope you feel better reallly soon! HUGS! Thank you everyone for all the prayers...much love!
God bless,
xox Caitlin
PS~ Jonna thank you for clarifying that the wings in the above picture are eartlhy! You can't get rid of me that easily!hehe
and
~*~*~*NO MORE HOME CARE*~*~*~
I made it to my cousin Sean's wedding yesterday! Those of you who I talk to on AIM know that I have been talking about this wedding forever...and when I was in the hospital and I was inpatient at "club med" in august this wedding was my goal. For all the doctors who said I would be too sick to make it, I'm sticking out my tounge and saying "I told you so" right now.hehe. After I took a shower the day before I honestly didn't think there was any way I would get there...but once again, answered prayer. God has been so incredibly faithful with all the little things over the past few years that it is impossible to deny that He is in control of the big things too... "For I know the plans I have for you says the Lord, plans for your welfare and not for harm, to give you a future with hope."(jeremiah 29:11). HOPE...where would we be without it? It is possibly one of my favorite words.
Anyway, the wedding was absolutely perfect! There is no other word to describe it. I have never seen two people so happy to get married. It was sooo good to see everyone, especially Uncle Bill...Georgia is way too far away! We were just about the last ones to leave the church and I really enjoyed the whole extended family just being together. In the car on the way home all I kept wanting to go to the party soooo bad, but I was honestly wiped out and I was turning all shades of pale so I stayed home. But everyone took tons of pictures and it looks like the party was as wonderful as the ceremony. In all honesty my relatives are lucky I wansn't there and out on the dance floor...I am probably the world's worst dancer. hehe.Seriously I'm completely uncoordinated. However I really do wish we could all just have a big family reunion every weekend.
In all the excitement of taking myself off homecare (hehe) my oncology/hematology appointment "accidentally" slipped through the cracks. VNS was setting up the draws for blood count checks, and I guess the responsibility never got transferred back to Dr. Berard. I confess...I knew full well that the appointment wasn't scheduled, it crossed my mind at least once a day. But honestly I wore a sleveless dress to the wedding and I really didn't want to have 5 extra bruises from having counts drawn. I didn't want to ruin Courtney and Sean's wedding pictures by looking like a giant black and blue mark in all of them. I just didn't want to detract from their special day. So now its 2 weeks without getting labs done. (eek!) I could go one way and be scared out of my mind - 2 weeks has given that white count plenty of time to bottom out. But I'm just trying to walk by faith...God knows what He's doing so I'm not going to worry about it.
I better go, I'm trying to get some of my stuff back into my room. Dad cleared it out while I was in the hospital so the homecare nurses would have more space...but I have absolutely no idea where he put most of my stuff. He conviently took out my keyboard, telescope...all the stuff that involves energy or standing up. hehe...So I'm off to search the basement. I have no idea how this got so long...
Please say an extra prayer for Cheyenne's family, as it was her birthday on Friday and she celebrated in heaven this year. Her family is just missing her terribly. And tomorrow Chili's is donating their proceeds to St. Jude Childrens Hospital...so go to Chili's and order a ton of food! :)
God bless,
xox Caitlin
Today is the last official day of summer. Not that it will stop me from walking around barefoot drinking sweet tea, but I have to admit that today the air smelled just a little bit less like sunshine and grass and a little bit more like leaves. And if I really stopped to think about it, the breeze felt a little bit cooler. As soon as I finish writing this I am going to go sit on the porch swing and eat a popsicle. Just for the heck of it.
On Monday I decided to take myself off homecare. I was scheduled for the home health aid to come out and I just called in and said I was feeling much better, and as much as I love Josephine, I asked them not to send her out. hehe. Then yesterday Caryn came out for PT. I answered the door when she came and she said since I'm up and around I don't need her anymore. She made me walk out to her car just to prove that I could do it without fainting and then I signed the forms and she painted my nails. Then today Ronjana called and did a phone discharge, and then Olga(my nurse)called and said she was "in awe." hehe I just have to cross the t's and dot the i's and then I will be officially off homecare (again). Gotta love VNS...they always come out with the attitude that we're in this for the long haul. They should know by now that my God is in the buisness of miracles. Then when they discharge me they always say something like..."give us a call when you need us again...see you down the road." I guess they don't understand that when I put my faith in something I go all out. As much as I love them, I hope they don't come over again for a loooong time.
I got over this little bump in the road just in time too. I think Dad was starting to get a little stressed. Today he took the upstairs cordless house phone to work with him. He put it in his briefcase instead of his cell phone. Yeah, someone definitely needs to get more sleep. And since I have been out of bed Frisbee has been much much better too. His walking has improved and he is sleeping through the night. He doesn't need to be carried down the stairs anymore and last night he stayed put and didn't roam around the house. We're like Elliot and ET...I get better he gets better. hehe.
A few of you have been asking about the song thats playing. (Jonna I looked for your email but it didn't come through). Its called "If You Want Me To" by Ginny Owens. Its about being willing to go through trials in life because in the end it will bring you closer to God. Its not easy when your world is turned upside down but God is with you, and working in you, even when he feels far away. It about being willing to submit to God's plan even if we don't know where it will take us, and how it is enough just to know that he loves us. After all if Christ could stay on the cross just out of love for sinful, insignificant me, shouldn't I be willing to suffer a little bit for my Savior if it will bring Him glory?
If You Want Me To
Ginny Owens
The pathway is broken
And The signs are unclear
And I don't know the reason why You brought me here
But just because You love me the way that You do
I'm gonna walk through the valley
If You want me to
Chorus:
Cause I'm not who I was
When I took my first step
And I'm clinging to the promise You're not through with me yet
so if all of these trials bring me closer to you
Then I will go through the fire
If You want me to
It may not be the way I would have chosen
When you lead me through a world that's not my home
But You never said it would be easy
You only said I'd never go alone
So When the whole world turns against me
And I'm all by myself
And I can't hear You answer my cries for help
I'll remember the suffering Your love put You through
And I will go through the valley
If You want me to
Take a minute and listen to the lyrics...What ever you're going through (and you are on caringbridge, so I bet your life isn't easy either) God is with you...he never promised that life would be easy, but... "The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged." Deuteronomy 31:8. Sometimes the storm is so loud that we can't always hear Him, but sometimes you just have to walk by faith... Ok I'm stopping now...I'm very grateful to all of you who actually read that little sermon. hehe. Have a blessed day!!
xox Caity
There are two big blessings today...the first is I am WALKING!! Its a funny story how it happened actually. I was sitting on the couch listening to a bible cd and mom was in the kitchen when we heard a huge crash on the back porch. It sounded like someone threw a baseball at the door. Mom went to see what had happened and noticed that a bird had flown into the door and was injured on the porch. She started describing its condition to me and I wanted to help it so bad that I just got up and walked over to the porch. Its only about 10 feet from the couch to the door, but I didn't even realize what I could do until after the incident was over and I was like "I'm standing on the porch...I walked over here..." hehe. Aparently my instinct to help injured critters is as strong as ever. Unfortunately the bird story does not have a very good ending. By the time I got to it, it had died. From what mom described and the position it was in, it seems like it broke its neck. I think it was a pileated woodpecker, we used to get a lot of those at Audubon. The injured bird situation made m realize how much I miss doing wildlife rescue and animal care and all day I have been thinking about the Saturdays I spent in the animal room. I think that job has really helped me to deal with what I'm going through now...it really got me used to the emotional rollercoaster. I remember one day I released a mourning dove after it recovered from being attacked by a cat and 15 minutes later a baby squirrel that I had been caring for died in my arms. Its been the same way with dysautonomia...I never take a happy moment for granted because so many times the happy moments end way too quickly. Life lessons from a woodpecker accident...I think I've been stuck on the couch for way too long.hehe
Speaking of getting off the couch, good news #2: I left the house today!!! This morning mom was going out to the farm and I decided to go out for a ride. Since I can walk I was not about to stay in the house all day. It was so nice to get out in the sun. I was hoping to see some of the escaped chickens running around... (its pretty entertaining to see them chasing people at the farmers market), but they were all penned up today. On the way I noticed a bunch of people from the episcopal church putting up signs for the apple festival on October 1. I am hoping I can go this year since I missed it last year. Its really not as big a deal as everyone makes it out to be(unless you happen to really like apples) but its fun and practically the whole town is there so even if everyone I know is away at school its still fun to see theie parents...and grandparents...and cousins...lol.
Thank you all sooo very much for the prayers, each and every one keeps me going...bless your hearts!! Please pray for Savannah, she could really us a liver sometime soon. Our GOD is amazing and faithful and through Him ALL THINGS are possible!
God bless you all,
xox C
So much has happened since the last time I updated...big news first - I am holding my head up and sitting up all by myself. The homecare nurses and therapists are shocked...I had my PT eval last Friday and by the time Caryn got here again on Tuesday the information from Friday was no longer valid because I had improved so much.:) The collar was the first thing to go...my hair is still coming out in clumps so unfortunately the velcro was not to blame and its probably one of my meds. Luckily mom got me a really cute new polo hat and Lara brought me back one from Northeastern, so at least I'll have a cute way to cover the bald spot. hehe.
The medical supply company came to pick up the "special" wheelchair today. I used it all of once. It said "invacare" across the side of it, which made me think "invalid care", so there was no way I was going to use it after that. Can you blame me? The darn thing barely fit through the doorways anyway. When we used it, it got stuck in the hall and Dad ended up just picking me up and carrying me to bed. hehe.
My next goal is to be walking. I know it will happen, so now I'm just praying and trying to walk by faith. (yes pun intended). My goal is to make it to my cousin Sean's wedding next Saturday. I haven't decided if I will go to the ceremony or reception. I would rather get to the reception, I would love to get to visit with my Uncle Bill from Georgia, and all my cousins who I don't get to see very often. The only thing is I probably won't be able to stay the whole time and I don't want anyone to have to leave early to bring me home.
The amazing thing is that Nana is completely better!! After surviving the infection that left her unable to speak or eat and had a fever of 103, she is not only 100etter but celebrated her 90th birthday on September 4th. God is soo amazing. I remember when Mom was running back and forth between the nursing home and the hospital, between me and Nana. It seemed so unbearable at the time...honestly we didn't know how we were going to make it through that week. But its like God used that infection to show us just how GOOD and FAITHFUL he could be. I couldn't make it to the birhtday party (which broke my heart) but it looks like everyone had a wonderful time and I'll try to post pictures later.
I just have a prayer request before I finish this novel...my dog, my baby, Frisbee is not feeling well. He can't walk very much these past few weeks and he just really acts like he doesn't feel good...not like himself at all. He was at the vet yesterday for xrays, but they didnt show anything. The vet is calling tomorrow morning with the blood work results and I am praying that they will show something treatable. I;m sorry if I offended anyone by asking them to pray for a dog, but he means so much to me, and he is one of God's creations too, and I have faith that God will take care of Him.
I'll try to update again within the next few days. God bless you all and thank you sooo much for praying for me...God has blessed me and strengthened me through each one of your prayers!! :)
One more thing, don't think I'm crazy now (although the fact has been debated), but at the request of Heather:
What Your Underwear Says About You
You like your underwear to make you feel girlish and pretty. Let's hope you're a chick.
You're comfortable in your own skin - and don't care to impress anyone.
hmmm...surprisingly accurate. hehe
Because He lives,
xox Caitlin
The good news is tody I feel stronger and I can cross my legs by myslef. I brushed my teeth this morning too, which felt soo good...I know it sounds silly but it really felt like an accomplishment.
I honestly hate talking about health stuff on my CB page, it feels like I spend so much of my day dealing with it that I don't want to give it any more attention or recognition. So I'm taking suggestions of things to journal about.hehe. If you have an interesting topic just leave it in the guestbook.
Today is Laras last day of summer before she starts senior year, so we have just been hanging around being lazy. We just finished watching Monster in Law, and yesterday we watched The Wedding Date. Its going to be sooo quiet all day when shes not here...shes not here most of the time, but she stops in periodically throughout the day and its going to take a little while to get used to her being gone all day. Plus now Ollie is going to get dperessed without his mom so I will have 2 dogs that need consoling. Frisbee has not been himself lately. He lays flat on the rug in dad's office most of the time. He doesn't seem to like me being in the hospital bed...it has metal bars on it and he seems like he thinks I'm in a cage. Poor baby.
Sorry the updates are so short lately, but I'm not strong enough to type long ones yet. I'll try to catch up more tomorrow. Thank you so much for the prayers...thats what keeps me going! ;) I will beat this!!!
God bless,
Caitlin
But the good news is I"M HOME!!!! After 15 looong days in club med...its sooo good to be out of there. The ambulance was scheduled to bring me home at 2 yesterday and every 5 minutes after 1:00 I was doing a countdown. hehe. When I got home Frisbee ran into my room and started crying whn he saw me. We have never been seperated that long. Last night he slept on a pillow next to the bed and he kept sighing all night.
They moved me out of the Rehab unit because it was making me worse, and insurance wouldn't let me stay there unless I was doing therapy every day. Everyone decided that was a bad idea, since it really made me weaker and I lost a ton of weight from the PT. At my last weigh in I was down to 88 (eek). So it was decided that they can't really do too much more for me and gave me the option of either going to a nursing home or going home on homecare. I picked home...surprise, surprise. The doctors and therpaists said they have no idea if this is a permanent condition, or if I get better just how much it will be. I know God has a plan and I hope it includes a full recovery. And I know that "hope does not dissapoint." (Romans 5:10) So I am taking each day at a time with the faith that tomorrow will be better than today and this too shall pass.
My mom has been supermom this weekend. Today I got set up with home care again. My nurse Olga came back out and got everything going. I get 2 hours of nurses every day plus PT and OT. I'm praying God will send people into the house who I can witness to and also just someone fun to break up the day.
I am soo sorry I haven't gotten to write thank yous to all the amazing people who called, sent cards and packages, and prayed. I also want to apologize for not being up to doing much guestbook signing. But I want to thank everyone who has signed my guestbook and supported me through this.
I will try to update again tomorrow...I have ons of time on my hands so unfortunately you will all have to listen to my craziness more often.hehe.
Moms going out and we have to take care of some stuff before she goes so I better get going. Thank you all sooo very much for your prayers!!!
XOX Caity
Today though I did get a visit from a therapy dog named Sallie, shes a newfoundland, and she looked like a black bear. A guy took pictures of me petting her and I am going to be in a bochure for the therapy dog association.lol. They are starting PT and it is going well. They got me a special chair with supports and they make me wear a neck brace because my head is still kinda floppy, which I'm not crazy about. But if using this stuff will get me better I guess I don't mind too terribly much. I sat at a 45 degree angle for about 10 minutes today before my BP got too low and they had to put me down. I just keep telling everyone I am going to walk out of here. You better believe I will! ;)
Dad has been with me today and we have been having fun. We're watching QVC and they're selling chocolate fondue fountains, hehe. Lara brought me The Catcher in the Rye, and I have been reading like crazy. I made friends with one of the priests here and he comes to visit every day or so and I really enjoy his company. Today I taught him all about christian music like Jars of Clay and Chris Tomlin. He brought me a book, The Hiding Place, about a woman who smuggled a bible into a concentration camp. It looks really interesting but its too heavy for me to hold up right now, so hopefully I will be strong enough to read it next week.
I better go, getting tired from typing...but thank you so much for the prayers. Please pray for cooperation and willingness to learn for the staff and doctors...they aren't to familiar with dysautonomia and it can get complicated at times. Love you all so muchly!
Because He Lives,
Caitlin
This evening I am getting moved to 10 east (which means I'm getting better!) I will probably be in there for a few weeks to get stronger and they can give me PT there too. I have been getting PT and OT for a few days so I can kind of lift my head up now...making progress! It has actually been really busy here. God bless my Lizzi, she has been here every day and I have been blessed with a wonderful Calvary family.
Oops, sorry to cut this short but I just got word that I'm moving to 10 East now. I'm going to try to get my computer in here so I cam update more later. Much love to you all!
xoxo Caitlin
Please pray for healing for my Nana, and strength for my Mom. Nana has a bad infection and is not doing well right now. They have her on IV antibiotics and she seems a little better today, she was talking this afternoon and was going to try to eat. She is going to be 90 in 2 weeks so we are praying for healing so we can have a big birthday celebration. Mom is a saint, this all came on very suddenly on Friday and she has been running between me and the nursing home. Dad has been great too. He has been sitting with me watching movies and reading the bible to me. I really do have the best family.
Thank you all for your prayers and God bless you!!! I hope you have a wonderful week!
Because He lives,
Caitlin
The recovery process has kind of taken a step back too unfortunately. Today I need help sitting up again and mom and dad are still lifting me from the couch to the wheelchair. We put in a call to Dr. Sora to update him and he is sending out a quest nurse to do a blood draw tomorrow. My liver enzymes were elevated again when I was admitted so he feels it is either liver disease or more likely the dysautonomia has progressed a little again. I doubt it is liver disease, my liver doesn't even hurt and I'm not at all yellow (although I wouldn't mind having a little color...I'll take what I can get.)hehe. We feel its most likely just dysaut. complications since anesthesia works on the nervous system and all this is so much worse since the surgery. There was talk of home healthcare again (yuck). I really don't want to have a whole medical staff in my house but if it would help my parents I told them I would be ok with it. At this point we have our routine down so well that we actually function more easily without the nurses.lol.
Other than that things have been going well. I have been watching tons of movies. I think I have seen every movie at the video store by now. The only things left for mom to rent today were Winn Dixie and Indiana Jones.haha. I guess thats what happens when you go to the small town video store. I have gotten in the habit of watching my old dance concert tapes and videos from musical theater camp. Ater a few years of shaky legs and wheelchairs I actually forgot how flexible I used to be.hehe. Dad and I were watching Beauty and the Beast last night and we realized it is the story of our lives...pale brunette girl who always wears her hair in a ponytail and can't get her nose out of a book, and the crazy inventor father. hehe. Can't hit much closer to home than that. :P
Of course the Easton carnival was the weekend my tube collapsed so I missed that for the first time I can remember. Hopefully this weekend I will be able to get my butt in the car and take a trip to the farm...just a little something to get out and do. I just realized I wrote a novel again...I need to get off this couch! lol.
I hope everyone is doing well...Diana, I love you tons and hope you're feeling better really soon! To all my prayer warriors...thank you for all the support, you are angels!
x's and o's
Caity
On Monday. At 7:30 I was brought down to the BRAND NEW operating center. I was the first patient in Operatind Suite 8. hehe. It just opened that morning. It was gorgeous. Wood floors and everything. I have seen hotel desks that weren’t as nice as the nurses station. Each patient got their own room for pre-op and recovery. The head anesthesiologist came to meet with us and went over my records from my last surgery to see how I reacted to all the drugs. He decided to use a different combination of drugs that would put me to sleep more gradually and not need to be reversed once they stopped being given. They gave my parents a pager that went off when the surgery was over. It reminded me of a restaurant that pages you when your table's ready. Hehe. They normally don"t let family into recovery, but I pulled my not waking up stunt, so they let my mom come in to make sure that was what normally happens. I actually woke up after 5 hours this time. They decided to keep me on the oxygen and that made a huge difference. Pastor Dave, Pat, and a bunch of my prayer warriors came over that night to lay hands on me and I was actually awake and I remember the whole thing. That was some AWESOME prayer. God was glorified in that hospital room and I know a miracle is possible, especially with that bunch praying for me.
God bless Lizzi, best friends don"t come any better. She came to visit me every day and read the bible to me even though she had lost her voice. It was pretty funny listening to us talk, I had just gotten exubated so we were both really squeaky. She brought me a picture of us in a beautiful frame with little butterflies hanging off it. :)She was not too happy that PT hadn’t been in to see me and since I couldn"t move she decided to do range of motion on my legs. They actually felt a lot better after that, thanks to nurse Liz.
Sarina sent me the most beautiful balloon boquet. Its huge!! I have never gotten one before and my living room is so bright and cheery. I have been looking at that almost as much as the TV.hehe. The dogs love it too...little Ollie doesn’t know he is only 7 pounds and thinks that if he jumps high enough he will be able to reach them. Its soo cute.
The original plan was to release me on Tuesday morning but I was still a little too weak to pass the test. Dr. Sora knows how I like to get out of there ASAP so he was even willing to send me home with the oxygen, cath, and nursing care and arrange an ambulance to get me there. But he asked me to do him a favor and stay an extra night if I could. So I went home on Wednesday afternoon. I could not rip that remote telemetry off fast enough.hehe. So now I’m home…I feel tons stronger today. If someone helps me get up and supports me a little I can almost walk a few steps by myself. I know that doesn’t sound that great, but it's a huge improvement from a few days ago when I couldn't hold my head up.
Wow I didn't realize this had turned into a novel…to those of you who read the whole thing, God bless you! Thank you all so much for the prayers, that is all I need and I know my miracle is in the making!
x’s and o’s
Caitlin
I want to apologize to all my CB friends...I have tons of guestbook signing to catch up on. This week has been kind of crazy...I'm getting ready for a bright and early admitting time of 7:30 on Sunday morning at Club Med. I have a 7:30 am appointment in the OR on Monday for a new J tube. This one broke a record - 11 months. It is starting to look its age too, hehe. I was in outpatient infusion/short stay yesterday and all the nurses who looked at couldn't believe it was still working up until now. I don't know if its just me but hospital day trips are always good for a laugh. Mom and I always find a way to wreak havoc in there. It was like the Gilmore Girls take over St. Vincents. After getting all the papers done and getting admitted we broke out to go shopping in the gift shop. Th nurse really didn't want to let us go, so I gave her the puppy face and Mom wheeled me by really fast and said "Ooh we can't miss the sale, thanks for covering for us!" On our way back in Mom tried to pifler some surgical gloves for my clinic appointments and we got caught lol. It didn't help that we were right in front of the nurses station. The nurse who was admitting me asked me why I was so pale and assumed I was there for a blood transfusion. I mean I know I look like Casper but come on, I don't think I look that bad! When I got a bed, they wheeled in a woman from recovery who just had a colonoscopy. I won't go into details, but her and the nurse had a very looooong and graphic discussion about the "findings". Mom and I were trying so hard not to laugh out loud. We were trying really hard to not look at each other, becuase in situations like that when we make eye contact we just lose it. You wouldn't believe the stuff they were talking about. Then the woman's sister and father came in and the nurse explained everything yet again. Of couse the father didn't speak English so the sister then proceeded to translate. Mom finally started reading her magazine article out loud to me to drown out the conversation. Luckily I was reading my new John Steinbeck book, and when I'm reading I'm oblivious to my surroundings. lol.
All joking aside I have to say that I have the best surgeon in the world. Dr. Rosenblat was kneeling on the floor for an hour tring to thread the nitanol wire through the tube. He finally got it into my intestines and it was like a tug of war with a j tube trying to get it out. I think he was more upset than I was that he couldn't get it unblocked. But within 10 minutes he had called Dr. Sora, set up the admitting details, and booked the OR and the anesthesia team. Such great service!hehe.
I want to thank all my DYNA friends, Heather, Lauren, Sarina, Annie, Diana...you girls are absolutely the best. You too Pam! To everyone who I talked to last night, I never had so much fun while I was up all night puking. You all really brightened a long day. (((HUGS)))!!!
I won't have my computer while I'm inpatient (not much technology in a small town hospital). I'll try to update as soon as I get home and am up to typing, which I hope will be on Tuesday. Thank you all for the prayers and God bless you!!
x's and o's
Caitlin
Yesterday we had a nice visit with Lizzi and her mom. Liz is going to apply for a job with MAC makeup, so she did some pretty funky eye makeup on me for practice. I didn't even recognize myself...I never wear makeup so I it was fun to be all sparly for a little while...although I think it took longer to get it all of than it did to put it on. hehe
I am really excited for this Sunday. I am going to be going to my DYNA friend Heather's house and we are going to have a mini New England summer chill. I was so upset that I missed the DYNA chill, bt traveling to Virginia just didn't seem like a possibility. I really can't wait to meet up with some of my DYNA friends...I have never actually met another dysautonomia patient in person before. So it will be really fun to be with a group of people who see my illness as a similarity and not a difference.
It has been pretty hot here this week...I think its about 90 today. Everyone else is complaining and blasting the air conditioning, but personally I love it. Perfect weather for someone with low body temp.hehe. I could sit out on the porch all day. I can finally go outside in short sleeves and be comfortable. I think I need to move to Florida. :)
Last week was vacation bible school at church. I really wanted to be there but I felt like I would get in the way more than help. This was the second year since I was 11 that I haven't taught and the second year sonce I was 2 that I haven't participated. I am trusting God to find other ways to use me this summer...and you know what they say, absence makes the heart grow fonder, so when I am better I am really going to appreciate being there that much more. I will never again complain about spraying the playground for bees, or a child blowing their nose on my shirt. (yes that did happen lol).
I hope everyone is having a wonderful summer! Please keep all the kids who are fighting in your prayers, especially 10 month old Rebecca, who just got an NG tube and is going through a rough time.
God bless,
Caitlin
I went out to Chelsea's edding yesterday...she looke sooo beautiful! I can't believe one of my friends is married! It seems so strange to think that people only a few years older than me are starting to get married. It really doesn't seem like that long ago that Chelsea and I were acting out skits in Sunday school.hehe. Its going to be so weird to go visit my friend in her own house. The wedding was soooo beautiful. Everything was absolutely perfect. Lizzi and I especially liked the little guy that was driving the car...all dressed up in a little chauffer suit.lol. It was thunderstorming (is that a word?) all day Friday and I was really worried that the weather would not clear, but it turned out to be sunny and beautiful. God is good...I should have known he wouldn't let it rain on their wedding day. I even made it to the reception. It seemed like a long shot last week and I had been praying really hard about it. But between the service and the reception, I managed to stay out (drumroll please) 4 hours! I swallowed my pride and stayed in the wheelchair for the reception. Dad pushed it right up to the table and then he put another chair next to me for me to put my feet up on. It made a world of difference having my feet up. I didn't need any extra heart meds and I was able to stay out wayy longer than I would have otherwise. I was worried that one of the waiters would be upset over me having my shoes up on their nice, expensive-looking chair, but no one said anything. I ended up having to leave just before they cut the cake, but I had sooo much fun. The cake was soo cute too, it had matching buttons and an icing sash like Chelsea's dress. I guess we left at just the right time, I fell asleep the second we got in the car. hehe. But the good news is I only fainted once today. (But once is enough, so for now I'm going to stay on the couch for a while!)
I better be getting to bed...I hope everyone had a lovely weekend! Thank you sooo much for all the prayers, thats all I need! Please keep praying for all of God's children who are going through trials.
God bless!!
x's and o's
Caitlin
PS - the counter is about to hit 5000! If you are my 5000th visitor, please drop a not in the guestbook...I wish I could say you'd win a million dollars, but I hope you'll settle for a virtual hug! ;)
God bless Lizzi, she came over on Sunday and decided that I needed to get out of the house for a while. So we got my dopey medicated self into the car and she brought me to St. Margarets shrine. It is, in my opinion, Bridgeports best kept secret. It is a beautiful little garden with statues of Jesus and tons of plants, trees, and fountains. The cement is chipped, and the statues are covere din moss but that just makes it even more beautiful. It was soo good to get out and laying in the sun probably did more for me than the meds.
I have some packages for some of my CB friends, dont think I forgot about you, I am going to try to get all the cards written out and boxes taped tomorrow. If you were watiing for me to update, thank Pam for getting on my case. hehe. I hope everyone is doing well...its pretty late so I'm going to get to sleep but I will try to add a little bit happier news in a day or two. God bless!
X's and o's
Caitlin
Dad,
Thank you for making me happy face cheeseburgers while your own dinner got cold. If I had a wonderful childhood, it is only because I spent 90 f it on your shoulders. I couldn't have won a kite flying contest, made the golf team, or learned to make the perfect omelette without you. You've been there for me wether it meant pulling me in off the roof or carrying my telescope. I am grateful for every dance recital that you sat through and every minute that you spent sitting in a plastic chair next to my hospital bed. Not just anyone could get me to drink sour milk! I wish I could repay you for everything you have done for me but all I can say id I love you. My first words were "DaDa" for a reason! Flying Eagle, know that this Tiger Lily could not be prouder to be your daughter.
XoX Jellybeaner, CaitlinRosie, Caitsybay
PS- not just anyone can notice the misquito :)
Happy Fathers Day to all the Dads out there! I hope its a great one!
A litte gastroparesis can't keep me down and despite the flare up actually am feeling less tired than I was when I was doing therapy 3 times a week. I am finally starting to get a little energy back now that I'm not pushing myself so hard. The piano has been calling me and I didn't realize how much I missed it lately. I was able to sit up at it for about half an hour today, which is more than I have done since my muscle enzymes elevated. Progressive illness? I'm not buying that...I'll show those doctors a thing or two. hehe. The only bad thing is my parents must be getting tired of hearing Moonlight Sonata by now. :)
My Dad just brought me home some tomato and pepper plants from a lady at work. So we're going to have fun growing those. Dad and I used to have a vegetable garden every year when I was little and it will be fun to start the tradition again. My evening primrose that I planted in physical therapy are starting to grow. The're really pretty, they look like giant buttercups. :)
The weather has been really crazy here. On Monday it was 93 and then yesterday and today it has been around 61. Craziness. I actually didn't mind 93. My room (Nana's old room) doesn't have air conditioning so when it gets really hot I get to sleep out on the couch in the family room. The couch is pretty comfortable and I'm not going to complain about the digital cable. :) Its hard to sleep when I'm being tempted by Shrek 2, Chasing Liberty, and The Notebook. I had the notebook on all night and Mom admitted that she stayed awake to watch it too. hehe.
Thats about all thats going on in my corner of the world. Dont forget to stop by www.sharethelove.org There are sooo many amazing kids out there that need prayers. I hope everyone has a good weekend. Happy father's day to all the Daddys out there!
x's and o's
Caitlin
Yesterday was my last day of physical therapy. It was kind of bitter-sweet. Caryn was looking over her notes from when I started in March and she said it looks like I have hit the famous "plateau". PPPT! I have that word! I was hoping to get a little stronger first but who knows what the summer will bring. At least I can say I can walk up five stairs, and in April I was even able to do 9! So I guess it was worth it. While Caryn and I had tons of fun together, she said she knows how much PT wipes me out and she would rather have me out having fun than spending the week on the couch, exhausted from crawling up and down stairs. So my assignment for the summer is to get out as much as I can and just have a good time. She said it doesn't matter if I just go down to the center of town and just eat some ice chips at Marie's, or sit on the bench while my mom does her grocery shopping. So this summer I will be annoying the lovely folks at Marie's by going in and just ordering ice...or maybe I will apply as a job as official bench warmer at Porricelli's. hehe.
I have an appointment coming up with Dr. Warner on Friday to go over the blood work and see if my ANS (autonomic nervous system) is effecting my endocrine system. Some stuff came back off in the blood work...CO2, C-Peptide, some adrenal stuff...but when you draw 9 tubes of blood its kind of hard for everything to come out perfect. The great news is, my potassium is a PERFECT 4.4...so I'm backing down to 20 MEQ/day. Its so nice to not have to have that yucky stuff in my stomach every 6 hours. I even gained a pound already since the dose dropped down.
I hope everyone is having a good summer. I have been literally living outside... last night I was pretty much zoned out in bed and it felt like such a shame to be inside...so I took my pillow and blanket and laid out on the porch outside my bedroom. I can't beileve it took me 21 years to realize that the sunset is just as beautiful in the east as in the west. The whole sky was so big and clear. It was the perfect color blue and faded to peach at the bottom. I uploaded a new picutre to the photo album and that pretty much explains my summer so far. :) this week Lizzi came back from her cruise and brought me some beautiful matruyshka dolls (those little nesting dolls)from Russia. They have turquoise blue ink and gold leaf, and theres a picture of the church of the spilled blood burned on them. I think I'm adding Russia to my to-do list. :)
I have made an interesting medical discovery for all you dysautonomiacs with episodes of bradycardia. Two words: SWEET TEA. The combination of sugar and caffiene got my heart rate up like no medicine ever has. And it is much more fun too. (Of course then I had to take a little extra atenolol becuase it went too high.hehe)I guess I'm just a displaced southerner.hehe.
Well I'm going to get back outside...my porchswing and sweet tea are calling me. :) I hope you are all having a lovely week. Thanks for checking in!
X' and O's,
Caity
Today I was talking to my good friend Janis from church about hope. Actually we started by talking about God's will and how it just doesnt make sense at times from our limited perspective. And then I started wondering if by believing so strongly that I will get better is hindering God's plan for my life. Like what if this is how he wants me for a while? What if he can use me more this way than the way I wanted to be? If that is the case then I wouldn't be so desperate to have things go back to the way they were. What if he has something bigger and better and if I could only see it I would accept this for my life right now. Then it dawned on me...I can't remember when I stopped praying for physical healing, stopped being so specific about my miracle. If God wants to give me a miracle, then who am I to tell Him what it should be?
Then we got on the subject of hope. I was thinking about how even though we don't know God's plan, we know God so we know whatever is coming is really really good. So because of that I can have hope. Then after that I checked my email for my Charles Stanley devotional and guess what the scripture was? Romans 5:1-5
"1Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, 2through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. 3Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; 4perseverance, character; and character, hope. 5And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us."
It was like God was saying "I'm still here." I don't know why I'm always so amazed by those little moments of grace...I really should be used to them by now. Its like that scripture said exactly what I was thinking only better.
I had labs done yesterday, there was a new tech there and since she wasn't familliar with us I had to sign insurance forms again. She gave the clipboard to my mom and asked her to inital the forms. I offered that I could sign them myself since I'm over 18. She thought I was joking. The following conversation went like this:
"Haha, how old are you anyway honey?"
"21."
"Nooo...you don't look a day over 12."
Good thing I don't mind being called 12 (at least not too much). You have no idea how much that happens. I usually get 14 or 15, but never 12 before. hehe. People always say by the time I'm 30 I'll appreciate looking younger than everyone else.
TOday I got a brochure in the mail for Soulfest 2005. Soulfest is a chrisitan concert in new hampshire. This year they are going to have Jars of Clay, Ginny Owens, Michael W. Smith, Chris Tomlin, the list goes on.... And usually it is a one night deal but this year they are making it into a 5 day conference! I want to go so bad that I am seriously thinking of how I could get there. Mom said we could rent an RV so I could lay down for the whole trip. Worshiping on a mountain under the stars with thousands of other believers would be like a dream come true for me. I'm not getting my hopes up yet but you know what they say...where theres a will theres a way.
As always thank you for the prayers. Thats all I need. :)
Gods blessnings,
Caitlin
I really earned the title of Miss Independent today...this morning I decided to try to shave my legs by myself. Mom usually does it for me but she was busy and I didn't want to bother her. Not a good idea. First of all with the dizziness from low BP and the shakiness from the meds this was not the smartest thing to do. Plus with the neuropathy in my legs I can't feel it if I get cut. So needless to say I ended up looking like a victim from a horror movie. I have about 12 cuts and 6 bandaids on my legs right now. oops. I also lost my razor priveleges and got a good talking to about asking for help when I need it.
American Idol finale is tomorrow...for those of you who watch (and those of you who don't) VOTE FOR CARRIE!!! hehe
Thank you for your prayers,they are all I really need, and as you can see they are really working!
Gods blessings,
Caity
I really earned the title of Miss Independent today...this morning I decided to try to shave my legs by myself. Mom usually does it for me but she was busy and I didn't want to bother her. Not a good idea. First of all with the dizziness from low BP and the shakiness from the meds this was not the smartest thing to do. Plus with the neuropathy in my legs I can't feel it if I get cut. So needless to say I ended up looking like a victim from a horror movie. I have about 12 cuts and 6 bandaids on my legs right now. oops. I also lost my razor priveleges and got a good talking to about asking for help when I need it.
American Idol finale is tomorrow...for those of you who watch (and those of you who don't) VOTE FOR CARRIE!!! hehe
Thank you for your prayers,they are all I really need, and as you can see they are really working!
Gods blessings,
Caity
Yesterday Mom and I had a talk about the difference between being positive and painting a false picture. When people ask how I'm feeling (which happens more often than not when you're sick)I always say I'm good. Moms point was that doctors need to know the real story if they are going to help me. She said it paints a false picture when I tell doctors, physical therapists, etc. that I am fine and then go spend the rest of the day on the couch with a puke bucket and bieng a 10 on the pain scale. So now I am trying to find a polite and positive way to say I feel like I got run over by a garbage truck. hehe. Part of the reason why I try not to complain is that I don't want people to feel sorry for me. I don't feel sorry for myslef so I don't want anyone else to feel sorry for me etiher. I think another part of it is that I try to be strong for everyone around me. What some people dont realize is how many lives an illness can effect. Its not just me living with dysatuonomia, its my family, my friends, it just keeps going like ripples in a pond. Ok thats enough rambling from me.
Today is the grand opening if the butterfly gardens at the audubon society where I used to volunteer. They converted what used to be an old green house into a butterfly garden. I was planning on going but as of right now it doesn't look like I'm going to make it. Plus I have to go out for labs either tomorrow or tuesday and then with my neuro appointment tomorrow its going to be a full week. Maybe next weekend. Thats about all thats going on in my little corner of the world. I hope you're having a great weekend!
God bless,
XOX Caity
1.Is this decision consistent with the word of God? (find it in scripture)
2. Is this a wise decision? If I do this what are the fututre consequences?
3. Can I honestly ask God to enable me to do this?
4. Do I have genuine peace about this?
5. Does this fit who I am in Christ as a follower of Jesus?
6. Does this fit God's overall plan for my life?
7. Will this decision honor God?
I ran the IVIG through these questions and the first thing that I got stuck on is number 2. I realized that this can have major consequences, and although there is a small chance it could stop progression, I am not ready to take the chance of anaphalaxis or meningitis unless we have a plan in place to treat any complications. I'm not ready to "cross my fingers and toes and take our chances" as Dr.McAllister put it. The next one I got stuck on is number 4. This is not something I have peace about at this time, so I have decided that this is not the right treatment for me at this point in my life. If God gives me peace about it in the future then I will go ahead with it. I decided that I am going to wait a while and just enjoy the summer and spend as little time in the hospital as possible. Its funny because even though the progression is still happening, I don't feel like my back's against a wall and I need to do something as soon as possible. Lizzi and I have big plans for the summer, we have been trying to figure out a way to get me out on the boat. :)I'm not sure if its going to work out but a girl can dream! hehe
Its about 65 here and its soo sunny today! There is not a cloud in the sky and I'm thinking of having my Dad help me take my telescope out tonight. I would love to take it to the park but I can't take it out by myself until my blood pressure comes up a little bit. I took a little extra midodrine yesterday and I got up to 80/45 so maybe I just need a little dosage increase. :) If nothing else tonight I'm going to just sit out under the stars in a lawn chair.
Mom got me some fancy yarn and I have been busy knitting scarves. I just finished a fuzzy mint green one yesterday. I odn't know if any missionaries from church will be going directly to the Russian orphanage this year so I thought I would make a bunch of really fancy scarves and sell them at the Bridge of Hope craft fair. That way the proceeds woud go to the orphans, which might be better than sending them more scarves anyway.
I started this entry at 10 and I have been back and forth from the couch, resting and then sitting up for a few minutes. hehe. Ok I'm really rambling now... I hope everyone has a great week :)
God bless,
xOx Caitlin
I don't know what happened here... I was looking out my window and saw that all the trees have little tiny leaves on them and the lilacs were starting to bloom. I opened the door expecting it to be all nice and warm but its freeeezing! Seriously, its May and its not even 50 this morning.
I saw Dr. McAllister on Wednesday. I have some decisions to make now. There is a drug called IVIG (Intravenous Immunoglobin) that has a posiblilty of stopping my nerve damage from progressing. Which could mean that I could potentially get a little better, if not at least stabilize. It would work by destroying some of the antibodies that are present in everyones body and help fight off infections, viruses, etc. If these antibodies are destroying my nerves then this would help me. I would go into the hospital for 4 days at at time for infusions. There is a 20hance that this would help me. Unfortunately there is about the same chance that I could contract meningitis or other infections once the antibodies are gone. There is also a risk of anaphylaxis that we won't be able to test for ahead of time. So now I am praying for guidance as to what to do. Its not a decision that I have to make anytime soon and the door is always open so I am going to take my time thinking about this one. It would be a miracle and a huge blessing to get better, or even not get worse but at the same time I don't want to do anything that could make the situation that much worse than it is already. I am just waiting for God to make known His will for my life at this time.
Dr. McAllister is having me meet with a psychologist starting on the 9th for some testing. He said I have been through so much and even though I seem to be coping well sometimes people can put up a good front. I doubt I am putting up a front but we will see what they say....I am praying they say everythings ok becuase the last thing I want right now is to spend my time in therapy. Its hard enough for me to sit up and I want to use whatever time I can be up to have fun and take my telescope out, play the piano, go to church, sit outside...not in a psychologists office. I am praying that God will use the test results to show Dr. McAllister that when you have Jesus in your life you can find peace and happiness even in the midst of a tragedy.
My mom went to Target a couple days ago and got some doggie boots for Ollie. They are the cutest, funniest things I have ever seen! I just had to take some pictures to show you all. Its one of those things you just have to see. 
He had a little trouble walking in them...he kept kicking his legs out every time he took a step. :P Finally he just gave up and sat down on the carpet. He wasn't too happy with us after that. When we got them off he went in his crate and wouldn't come out until we used a cookie to make peace with him. He was back to his old self within a little while so I don't think we did any permanent psychological damage. hehe.
Tomorrow is my cousin Hanna's baptism and I'm really hoping to make it to Aunt Judy's house for a little while. I'm not sure how I'm going to get in once I get there, a lot of those houses by the beach are raised to avoid floods...so theres quite a few stairs. Good thing I'm light and carryable! I'll have to see if I feel up to going out, it will be a big day but where theres a will theres a way... :) I better get going, it getting late (yes I consider 8:30 to be late. hehe) and I am going to get to bed. Hope everyones having a good weekend!
God bless,
Caitlin
Today Frisbee celebrated his birthday. The little guy is 11...I can't believe I've had him for 10 years. He got a cheeseburger from McDonalds to celebrate. He was one happy doggie. He was enjoying that cheeseburger so much that his eyes were bugged out while he was eating it.
I better get back to the couch...midodrine is wearing off. Don't need to faint anymore...I broke my record on Sunday...6 times in one day. lol. I'm becoming very well aquainted with the floor. hehe. Good thing my dad is always conveniently around to pick me up. hehe. Well I better get going...Thanks for checking in!
Much love,
xox Caity
I'm starting up OT and my therapist said I am actually doing too much activity for my stregth level and I need to take it down a notch and rest more often. hehe. She said I shouldn't get as sick if I don't push myself to sit up or walk around the house when I'm feeling weak. So now I have to find way to motivate myself to stay on the couch. Seems backwards doesn't it?
There are some new prayer requests for this week...First is little Rachel who is in the PICU on a ventilator. She just celebrated her 5th brithday yesterday, so if you have some time stop by her page and send her some get well wishes. Also Linda is having a rough time and could really use some prayers. These girls could use a miracle so lets start storming heaven with prayers for them!
I hope everyone is having a good Spring :) Enjoy the sunshine!
God bless,
xox Caity
Today I started getting OT, my therapist Rajna is only going to come once a week so its not too much with all my other "visitors". She said I need to learn to NOT push myself so hard because once I am feeling tired, the muscle is already over worked and being damaged more. And all this time I thought I would keep my strength up by pushing myself. oops. Olga was out today so I got to meet a new nurse...she thought her thermometer was broken when she saw the 92.4, good thing I explained all about temperature regulation and dysautonomia before she threw it out.
Oh I almost forgot...Laras squad placed 2nd at nationals!! I saw the video of their first competition and they were amazing...after hearing them all complain after practice I had no idea they were that good. Not too much else is new around here...my little Frisbee has a stomach bug so now my mom is up at night giving meds to Fritter in addition to me...as if she didn't get up enough times already. The dog pills are in a bright blue bottle so hopefully there won't be a mix up...that would be interesting. hehe. I hope everyone is having a good week and enjoying the lovely spring weather! As always thanks for the prayers!
God bless,
xox Caity
But none of that seems to matter anymore. Heaven has another angel today. Lauren went home last night at about 2 am. She fought and won with the strength and grace that only comes from being a child of God. Sometimes I wonder how God can allow things like cancer and dysatuonomia and so many other diseases happen to people who have their whole lives ahead of them. I bet there isn't a person reading this who hasn't asked that question. I don't have the answer, but I know some day it will make perfect sense and I know that God's plan is perfect and his love is perfect and as long as we believe in Him we have HOPE. For those of you who have ever asked "why?" go to Lauren's page and read her testmony. Its only a few entries back in her journal history. Never have the words "those who lose their life will find it" had more meaning. All I know is that while a bunch of us down here are sniffling and wiping away tears, there is one BIG party going on in Heaven right now.
Steven Curtis Chapman \ With Hope
1 Thess. 4:13-14 / Heb. 6:9, 10:23
This is not at all how
We thought it was supposed to be
We had so many plans for you
We had so many dreams
And now you've gone away
And left us with the memories of your smile
And nothing we can say
And nothing we can do
Can take away the pain
The pain of losing you, but ...
We can cry with hope
We can say goodbye with hope
'Cause we know our goodbye is not the end, oh no
And we can grieve with hope
'Cause we believe with hope
(There's a place by God's grace)
There's a place where we'll see your face again
We'll see your face again
And never have I known
Anything so hard to understand
And never have I questioned more
The wisdom of God's plan
But through the cloud of tears
I see the Father's smile and say well done
And I imagine you
Where you wanted most to be
Seeing all your dreams come true
'Cause now you're home
And now you're free, and ...
We have this hope as an anchor
'Cause we believe that everything
God promised us is true, so ...
We wait with hope
And we ache with hope
We hold on with hope
We let go with hope
It was so nice to not have PT on Wednesday or Friday so I was feeling pretty good this weekend. It is still a little cold at night to be out with the telescope so today we went to the planetarium. They had a really neat show about the Cassini mission to saturn. Its amazing that it traveled for 7 years and 2 billion miles to get there. Then they had a tour of the sky with some of the stars and planets. I think I caught Dad falling asleep at one point but then he asked me to explain all the star stuff to him and he at least tried to pay attention. It was a really fun thing for us to do together, especially since looking at the stars together has always been our thing. I still have memories from when I was as young as 2 and he would take me outside and I would sit on his shoulders while we looked at the stars.
Right now we're watching Bringing Down the House...I let him pick since I have made him sit through wayyy to many girly movies this weekend. The poor guy can't tell one princess movie from another.hehe. Mom and Lara should be in at 5 or 6 in the morning...there were tornado warnings in North Carolina not too far from them so i can't wait to hear about all of their adventures. Ollie will be very happy, he sure has missed his mommy. Thats it for now...I hope everyone had a good weekend. Don't forget to sign the guestbook.
((((HUGS))))
xox Caitlin
I apologize to those of you who left messages in my guestbook who I haven't gotten back to yet. I have been so wiped out from PT that I haven't been up to visiting everyone's sites this week.
Speaking of PT, it was a little too much for me 3 days a week, especially since I don't have pain meds right now. So I got the princess treatment again. hehe, no complaints there. (For those of you who missed the last few updates the "princess treatment" is a leg and arm massage with lotion and range of motion treatment.) If nothing else I will have very nicely moisturized skin by the time I finish PT. But I am determined to succed at PT this time...I really want to be able to get upstairs. My bedroom is currently being used as a storage space for some extra office furniture. I need to get back up there and get that taken care of!
I was able to make it out to church on Easter! Praise God! It was such a beautiful service! The message was on the transforming power of Jesus and the ressurection. Easter is my favorite time of year. To me there is no feeling like being in Church on Easter morning singing "Christ is Risen." I got an easter basket with a little chick that grows when you put it in water. I started growing it yesterday morning and it is still going. I'm so easily amused. hehe.
This weekend Lara's cheerleading team is going to Nationals in Myrtle Beach. My mom is going with her so it is going to be a Caitlin and Dad week. We are already planning some fun stuff to do.
I made some oatmeal cookies today. (Well almost made them, my mom had to finish up). I know it doesn't seem like a big deal but it was the first time I have really felt like doing anything since the big potassium scare a few weeks ago. Well thats about it for now...don't forget to sign the guestbook. Happy Spring!
Because He lives,
xox Caitlin
I had PT yesterday and we walked to the bathroom and back. And I walked up 5 stairs! Caryn let me rest but she wouldn't let me crawl at all. Since I'm feeling so much better I no longer get the princess treatment. Last week I got an arm and leg massage with lotion for every session but this week I have to work! :P
Yesterday I got out for the first time in sooo long. Liz and I went to visit her boyfriend at work and then she pushed me around stop & shop and we got blue peeps. mmmm. It felt sooo good to get out! We got a little crazy in the grocery store. haha.
I hope everyone has a blessed Easter. May the joy of the ressurection be in your heart tomorrow and every day of the year! HE IS RISEN!!!
God bless,
Caitlin
He got us set up with home care nurses and they have been coming by every day. I think it has been a nice break for my dad so he has someone else to lift me from the couch to the wheelchair and get me out of bed while they are here. Hopefully the nurses will only be a tempory thing until my muscles stop breaking down. The nurses have been doing all my blood draws right on the couch. It has been really nice to not have to make the trips out to the lab, even though it has become my home away from home. hehe.
Dr. Sora decided to check my potassium "since I was getting a blood draw anyway" and surprise surprise it is down to 2.6 again. So now we have increased my lovely potassium pills. The nurses were right when they said the inside of the capsules tasted bitter...I accidentally bit one the other day...mmm wasn't that delicious. hehe.
Hopefully I'll be feeling better once my muscles stop breaking down so quickly and we can stop the nursing care...not that I don't love them, but I can't wait to be sitting up by myself again. The weathers getting warmer and I really want to get to the park and take my telescope out. One good thing about this week is that it has opened my eyes to a wonderful profession. I have decide that when I get better (yes I'm still expecting a miracle) I would love to be a hospice nurse. I have met some of the nicest, most caring and giving people this week. Well I better get back to the couch...don't forget to pray for all the other caringbridge kids who are going through rough times, especially Rachel who is preparing to go to California for treatment.
God bless,
xox Caitlin
We have been in touch with Dr. Sora today about my muscle wasting and he feels there is a noticeable decline in my strength test results over the past week. We are going in to see Dr. McAllister, the local neurologist tomorrow. I can't believe I got a next day appointment with a doctor. I guess there is a first time for everything. At first they couldn't fit me in until the end of April but when we mentioned Dr. Sora's concern for muscle enzymes they got us right in.
I had the best spring break with Lizzi...we got very creative with my watercolor pencils. haha. I am so grateful that God has blessed me with such a wonderful friend who has stuck by me through everything.
Wow I can't believe I made it through a whole entry without giving a weather forecast. haha. I hope everyone's having a great day. Thank you sooo much for the prayers! Don't forget to sign the guestbook!
God bless,
xox Caity
It looks like its almost time to brush the snow off the porch swing and bring out the telescope...only 10 days until spring!!! A few days ago (ironically, the day before the snowstorm) Dad and I saw some robins on the back porch! 
There were 3 of them, but you can only see 2 in the picture (one is hiding in the plant). Of course since the 6 inches of snow came they have all been hiding...but I have proof that they were here!
Dr. Glassman went back through his research and decided that it might be worth a try to use erythromycin in combination with the reglan, zofran, and promethazine. I am on a low dose now and if I continue to tolerate it from a cardiac standpoint then we will up the dosage this week. Yet another miracle...don't ask me what number this is...I lost count a long time ago. :)
A Target just opened up in Stratford. (You know you live in a small town when everyone gets excited about a Target opening in the next town over. hehe). So now I have a new goal. If I can get to 96 pounds then mom and I can go over to Target when the weather warms up a little and I can get out easier.
Well thats about it for now. Those of you who are on spring break - have a lovely week off!
God bless,
xox Caity
Over the past couple of weeks I have hard a hard time with nausea and this week it got to the point where I haven't been able to keep my feedings down. I lost about 3 pounds this week and now I am down to 95. Dr. Glassman had originally said if I go below 100 we have no choice but to start TPN. With my TPN allergy this would mean permanently being on protocol, and with my arrythmia protocol would mean staying in the hospital in the CCU on telemetry. So we are kind of between a rock and a hard place. We have been talking with Dr. Glassman and he said he doesn't have many options for us and reccomended going back up to Boston Childrens. My parents don't think I will handle the trip very well so we are going to see how I do this week since Boston didn't have much more to offer anyway. Dr. Glassman said we have pretty much reached the end of the road in terms of treatment options for the gastroparesis. The plan right now is just to take each day as it comes.
Calvary has set up a personal prayer team for me and they are on call 24/7 for any prayer requests. I just love you guys sooo much... you have gone above and beyond the definition of a blessing.
I'm sorry if this wasn't the happiest of updates...but I have faith that this too shall pass. I have decided that I am completely at peace with whatever God has planned for my life and I have been for a long time. I am just praying that God will use this time in a big way for His glory. I still truly believe that I will get my miracle!
Chelsea is coming over after church tomorrow so that will be nice to have company while Lara is away at her cheerleading competition.
Thank you all so much for praying for me and everyone else out in caringbridge land. You guys are the best!
God bless,
XoX Caitlin Rose
Not much to update today...I finally have a week with NO DOCTORS APPOINTMENTS!!! Thank God for miracles - Dr. Rosenblatt unclogged my vent port in the first week of February and I believe his excat words were "Unfortunatley you and I both know we'll be seeing each other in the OR ina few weeks." I couldn't help smiling...you never know what God has planned. He didn't think this tube would make it to the end of the month and here we are in the beginning of March and it is working just fine. Praise God!
Please storm the heavens with prayers for Rayanne, she has not been doing well lately and could really use some prayers and cheery messages.
Hope everyone is doing well. Thank you for praying for all of us on this journey.
In Him,
xox Caity
We are in the process of trying to get a full body bone scan done. The pain still isn't responding to the meds and Dr. Carruth thinks that if we go to a higher dosage it will start up the breathing problems again, so we don't need that. He is expecting something to show up on the scans since the pain has increased so much lately. My mom spent all last week trying to get a sample of the dye that they inject so allergy associates could test me for it. They don't want me to get injected with anything I haven't been tested for since the anaphalaxis incident with the MRI dye. We were this close to getting a sample from the radiologist when we realized that it was illegal to handle it without a liscense.(oops!) We wouldn't want to break Nuclear Regulatory Law or anything like that. hehe. So now we are waiting for Dr. Carruth to find a radiologist who will do the scans without the injection if it is even worth it. Please pray that we can get these scans over and done with! They won't give a ton of information without the isotope, but it is better than nothing.
Lara is on winter break this week so she and mom went shopping in new york today. So I get to spend the day with Dad. :)He was out all day yesterday doing things for church so we designated today as our bonding day. I think next I'm getting a lesson in how to fix a hot water heater. hehe. I hope everyone's having a great day!
God bless,
XoX Caitlin
Ollie has recovered nicely from his surgery. He was running around chasing his "snow puff" (his favorite fleece toy) the day he came home from the vet. He had 7 teeth pulled and the first thing he did when he got home was eat a bone. He's a tough little guy. Yesterday we discovered that he is my therapy dog. I fainted and when I woke up he was standing next to me looking very concerned and licking my face. Mom said the whole time I was out he was running around me licking my face and my neck. When I sat up he climbed right into my lap and wouldn't leave my side for the rest of the day. How cute is that?
The midodrine seems to be doing its job...I'm just waiting for the side effects to go away. This itching is driving me crazy! I'm suprised I haven't scratched my nose off by now. hehe. All these strange side effects make me wonder what exactly is in all these meds that we put into our bodies. Anyway...enough rambling from me. Well I hope everyones having a good day! Thanks for all your prayers for me and all the others traveling this road!
God bless,
Caitlin
Ollie went in for his surgery this morning. The poor little guy wasn't too happy about NPO after midnight. I do have to admit that this morning it felt nice to not be the one going in for the pre-op consult. The vet just called about an hour ago, the surgery went well and he is recovering. The mass they took out turned out to be scar tissue from when he was neutered...not caner!!! Praise God! I was praying so hard about that, one illness is enough for this family to battle! He will be staying at the vet tonight and we get to bring him home tomorrow. With all our experience in post surgical care, we should be able to get him nice and comfy.:)
Cards continue to pour in from all you wonderful Calvary folks. My mom checked our mailbox in church yesterday and as usual I got a lovely not from Dawn (what a sweetheart!). This time it was accompanied by a 2 pack of letter openers. How did she know that was just what I needed! I had to laugh when I opened the bag and saw them...how perfect!
Thankyou for all of your prayers. Please continue to pray for everyone traveling this road. God bless!
XOX Caitlin Rose
I do have some good news to report. Dr. Sora said I have been stable enough in the cardiac department recently, so we decided that today was the day to try the midodrine. What a difference it has made! I am sitting up as I write this and have been for about 30 minutes, and I just walked to the bathroom and back WITHOUT FAINTING!!! I was up to the point where I was fainting about twice a day and it hasn't happened at all yet today. Praise God! My bp has been hanging out around 60/40 lately with sudden drops into the 50s/30s and right now it is 71/51! Before I took the mido. my heart rate was ranging from 34-41 this morning and about an hour ago it was up to 95. We might try to get it a little lower but it is definitely better than low 30's or 250's.
I was expecting some snow when I woke up this morning, but the forecast has changed to rain. I even heard a little bird chirping yesterday morning. hehe. It has been quite nice out. I am hoping those clouds will clear later this week and it will stay warm so I can get out to see comet Maccholz. I'm still on doctor's orders not to go stargazing alone in case of a bp drop while I am standing up. There's not much time left to see this comet and i'm trying to convince my dad I'm feeling up to sitting out in the cold. Personally I think he is just looking for an excuse not to go out there with me. hehe. We're having my dads family over on Sunday for my birthday party...just a little gathering. When my parents asked what I wanted for my birthday this year, I decided that I just wanted all of us to be together, so I'm really looking forward to this. If any of you Calvary folks want to stop by, just give a call to make sure I'm up for it and I'd be glad to have you. You just have to promise not to bring any presents...this is all just about enjoying eachother's company! :)
I would like to ask you all to pray for Ricky, hes new at church and is in the hospital with Chrons and is on tpn. Please pray for physical and spiritual healing. I hope you all have a great day full of God's blessings!
XoX Caity
On Friday the phone calls started at 9:30 in the morning and didn't stop all day! I had just woken up around 11 when Gail came over with a beautiful Hawaiian plant from the Shouvlins and some coffee for my parents. (They really needed that after last week!haha).
Then my mom "accidentally" left the front door open when she let Frisbee in and asked me to go close it. I looked outside and found none other than the Little Mermaid in my yard! In my opinion you're never too old for the little mermaid. :)
Then I got more flowers from Uncle Bill in Georgia. They are the most beautiful long stem spring flowers I have ever seen. After that the FedEx truck pulled up with a package from Lizzi.
We didn't even get the door closed before the mailman, Bob, came and wished me a happy birthday. That was so sweet of him. (Before I got sick Frisbee and I would always see him when we were going for our walks and we would always stop and chat for a few minutes.) There were so many cards for me that they wouldn't fit in the mailbox. I didn't count all my cards, but it seems like I got one from everyone in the congregation. A little bird named Pastor Larry sent out an email asking everyone to send birthday wishes...you Calvary folks are just too sweet!
I managed to get in a visit with Nana, and she gave me pearl earrings. That was really special for me, since I remember how I loved to wear her pearls when I was little. Last night I got a visit from Chelsea, who gave me a charm bracelet with a heart engraved with my one of my favorite verses Job 42:5. That means so much to me...I'm going to wear it every day!
I want to thank everyone for all you did to make my birthday so special! I could never thank you enough. I had such a wonderful time spending the day with everyone I love...nothing could have been better. And thank you to all my caringbridge friends for the prayers and guestbook entries. You guys are the best! Have a blessed day. :)
XoX Caitlin
This has been the kind of week where medically, everything happens at once. My vent port became blocked on tuesday, but thanks to all you wonderful prayer warriors I did not need surgery. My trip to St. V's on thursday turned out to only be a day trip. I saw Dr. Rosenblatt, my 3 in 1 combination surgeron, radiologist, and vascular doctor. He was able to place a nitanol wire and get the port working again. I am still feeling optimistic about this but we know the procedure can only last for so long, so he told us to schedule a tube change and flouroscopy within the next few weeks. So no we are trying to get my blood pressure up and stablized so we can do that and hopefully avoid emergency surgery.
While we were there he checked on the venous stricture in my legs. He thinks that I have developed some venous congestion. For those of you who haven't graduated med school yet, that means that the muscles around my blood vessels have gotten weaker and the blood is now leaking backwards.. This means that the dysautonomia has progressed, which is not news that we wanted to hear. I still have faith in my miracle, and from my perspective, this means it will just be an even bigger miracle when I am healed. We are talking about starting coumadin to avoid any clots. Tomorrow I have a follow up with Dr. Spevack, and I am hoping to get a Zofran increase.(I'm sure the insurance company won't be too happy about that one! lol)
I wanted to thank you all from the bottom of my heart for praying for me. Lately I have been praying for God to make his will clear in my life. It appears that his will is not for healing at this moment. So I have been focusing my prayers on asking God to use me during this time. I feel that if this journey helps one person come to know Christ then it is all worth it. Thank you so much for stopping by, and for your prayers and guestbook entries.
God bless,
Caitlin Rose
~birthday countdown - 5 days!!! ~
Recently in the mail I recieved a beautiful crocheted butterfly from Angels of Hope. I don't know who sent it...it was an anonymous gift. I am in such awe of the kindness of strangers. It amazes me that someone I have never even met would put so much effort into making something so beautiful for me. I want to thank all of you out there who spend you time reading caringbridge pages and giving to kids who are going through difficult times. Whether it is gifts, cards, prayers, or cheerful notes in the guestbook, it mean so much to me and all the other people out there who you have cared about. You guys are saints! I'm praying that God will bless you as abundantly as you have blessed other people's lives. :)
XoX Caity
THe past few days have been busy. Janis came to visit and we had lots of fun remembering all our craziness back in youth group. I really miss staying at church until midnight singing the red books from cover to cover after Saturday evening praise. I think if I could pick one activity that I would be able to do again in it would be sing in worship band. And if I could eat one thing it would be the noodle casserole that Norma made for us after rehersal. Okay, maybe I'll rethink that one, but still I would eat it in an instant if I could. :)
Medically, we are still working on adjusting the pain meds. The newest addition is Ultracet, unfortunately I took the full dose for the first time last night and had a few incidents with blood pressure drops. (Not exactly good when "normal" is 60/40). Today was a lab day, and of course afterwards we went to the marshes and the sea wall, my absolute favorite place in the world. The beach looked so pretty with the snow on it, so I put my digital camera to use. 
some ducks at the marshes
a few seagulls at the beach. They look so cold, makes me glad I'm not a bird in January
the lighthouse at the Sea Wall
I better go rest and try to get my blood volume back up. ;)
By the way, for those of you watching American Idol, didn't you just love the girl in the tomato costume?! Hope everyone's having a good day!
God bless,
XoX Caity
I realized today that my page had over 1000 hits. I never thought people would be so interested in my story to read it 1000 times.lol. It means a lot to me that you all care so much. Thanks for signing the guestbook. I have so much fun passing the time reading all the notes.
God bless,
XoX Caity
New Year's Eve was a quiet one around here, although I did manage to stay up until 9:30. My dad and I watched Peter Pan and I made cocktail hotdogs for Frisbee and Ollie. They were two very happy dogs. Don't worry, I didn't miss out on ringing in the new year. I woke up on Saturday morning to confetti, streamers, and noisemakers.(thanks mom and dad).
In the words of Julianna Banana, "I survived 2004!" I think that should be the caringbridge slogan of the week. I have to admit that 2004 had its moments...maybe a few more hospital trips than I would have liked, but overall we have laughed 10 times as much as we cried in this house and that makes it a good year. My New Year's resolution is to cross 10 things off my life's to do list - I'm feeling abitious. :)
My prayers for 2005 are: 1. that we will all have a blessed year and never have to see the inside of a hospital, and
2. (at the risk of sounding like I've watched Miss Congeniality too many times) world peace.
I hope you all have a medically uneventful year with 365 more good days than bad days!
God bless,
XoX Caitlin
Pastor Larry came over to visit last week and he shared something with me that made me see the story of Lazarus in a whole different way. I know a lot of you are going through trials of your own, so I wanted to share this. He read me the verse: " This illness does not lead to death; rather it is for God's glory, so that the Son of God will be glorified through it." John 11:4. When Jesus said "this illness will not end in death" I always thought Jesus was only stating that Lazarus would be raised from the dead. Pastor Larry told me that it also applies to any sickness that a believer is facing. No matter what the outcome of an illness is, we have the promise of eternal life. Amen to that!
God bless,
XoX Caity
Pastor Larry came over to visit last week and he shared something with me that made me see the story of Lazarus in a whole different way. I know a lot of you are going through trials of your own, so I wanted to share this. He read me the verse: " This illness does not lead to death; rather it is for God's glory, so that the Son of God will be glorified through it." John 11:4. When Jesus said "this illness will not end in death" I always thought Jesus was only stating that Lazarus would be raised from the dead. Pastor Larry told me that it also applies to any sickness that a believer is facing. No matter what the outcome of an illness is, we have the promise of eternal life. Amen to that!
God bless,
XoX Caity
God bless you!
In the little town of Bethlehem, the most important birth in all of human history took place on what we now consider the first Christmas. It was sparsely attended by some bleating farm animals and a handful of shepherds who wouldn’t have been there had not the sky lit up with a multitude of heavenly hosts only minutes before, praising God and inviting the shepherds to the stable. What an invitation! With the exception of that outburst, however, no one else knew. Oh yes, there were some astrologers from the east that figured out what was going on by studying the stars and some ancient manuscripts, but they didn’t make it to town until at least a year or two later when the baby was a child. Why such an uneventful welcome for such an auspicious event?
It’s God’s way. He’s always been quiet about His work on earth. “How silently, how silently, the wondrous gift was given/So God imparts to human hearts, the blessings of His heaven.” He’s even pretty quiet about the way He works in our lives. Silently He came into the world; silently He comes into our hearts. No fanfare. No welcoming committee. God has never been into self-promotion. He lets His work speak for itself.
And that would be you and me. Believers are the result of Christ’s coming. It is all about good news and glad tidings for all people. A Savior has been born and He has been born for us. Or as the angel announced it: “The Savior—yes, the Messiah, the Lord—has been born tonight in Bethlehem, the city of David” (Luke 2:11 NLT)!
It occurs to me there are two ways to take all the fanfare and glitter of this season. We can see it as the over-commercialism of Christmas, or we can take all the lights, and gifts, and decorations, and parties, and bells, and carols, and Christmas specials on TV—even Santa and reindeer in the front yard—and bank them all as celebrations of the birth of Christ. We can even take the conversion of old Scrooge as the joy of new life and forgiveness of sins.
There’s no law against sanctifying the secularization of Christmas in your own heart and mind. It’s what we make of these things that count, anyway. Every single light can represent another soul secured in eternity as the result of what Christ has accomplished.
There was no room available for the Son of God when He came the first time. Let’s make sure there’s room in our hearts this Christmas, and don’t let anyone take away what is good about the glad tidings of Christ’s birth!
Wednesday December 22, 2004 11:17 AM
Its beginning to look a lot like CHRISTMAS!!!
I hope everyone is having a good day and enjoying the Christmas spirit. Today was an early day for me...I got up at 7:00 to go get labs done. I had forgotten that 7:00 happens in the morning too. :) I was always an early riser before I got sick but lately I haven't seen the world before 10 or 11. I had forgotten how much I loved watching the sun come up and seeing all the little birds start coming to the feeder. After the lab my mom and I took a trip to the beach to watch some of the late fishing boats going out. The marshes were frozen and there was snow on the shore...it was so pretty. I'll have to go back and take some pictures when we get a digital camera for Christmas. (hint hint, Dad). I don't know how all you people inland can live without the water. I guess I'm just a beach bum.
I am keeping busy by decorating for Christmas, and wrapping presents. Watch out Martha Stewart! I have been making cards this week for anyone who needs a little cheering up. Its a little late for Chirstmas cards but if you would like a new years card or a little hello, just email me your address and I'd be happy to make one for you.
I have heard I am having some visitors today who will be bringing a surprise. I better go rest up for when they come. I hope everyone is having a good day.
I found this poem that reminded me of the true meaning of Christmas. The greatest Christmas gift we could recieve is not something that can be wrapped and put under a tree, but God became human, and entered this world to give his life as payment for our sin... I cannot think of a more perfect gift. Remember to keep Christ in Christmas this year. :)
'Twas the night before Jesus came
And all through the house
Not a creature was praying, not one in the house.
Their Bibles were lain on the shelf without care,
In hopes that Jesus would not come there.
The children were dressing to crawl into bed,
not once ever kneeling or bowing a head.
And Mom in her rocker with baby on her lap,
Was watching The Late Show while I took a nap.
When out of the East there arose such a clatter,
I sprang to my feet to see what was the matter.
Away to the window I flew like a flash,
Tore open the shutters and threw up the sash!
When what to my wondering eyes should appear
But angels proclaiming that Jesus was here.
With a light like the sun sending forth a bright ray,
I knew in a moment that this must be The Day.
The light of His face made me cover my head;
It was Jesus! Returning just like he said.
And though I possessed worldly wisdom and wealth,
I cried when I saw Him in spite of myself.
In the Book of Life which He held in His hand
Was written the name of every saved man.
He spoke not a word as He searched for my name,
When He said "It's not here" my head hung in shame.
The people whose names had been written with love
He gathered to take to His Father above.
With those who were ready He rose without a sound
While all the rest were left standing around.
I fell to my knees, but it was too late;
I had waited too long and thus sealed my fate.
I stood and cried as they rose out of sight;
Oh, if only I had been ready tonight.
In the words of this poem the meaning is clear;
The coming of Jesus is drawing near.
There's only one life and when comes the last call,
We'll find that the Bible was true after all!
Author Unknown
Guess what...I'm back!!! You can't keep me down for long. :)Thank you all so much for your prayers, it has made more of a difference than you will ever know! There is one good thing about going to the hospital in December...Christmas decorations! I even got to see the lights in the park from the highway on the way home. I am home now and feeling a little better every day. I have been watching the Wizard of Oz all weekend. Thats my absolute favorite movie to watch when I'm couchbound. Only slightly above Legally Blonde and The Princess Bride. I think I'm on the verge of burning out the DVD player. :)
I am building up my strenth by spending every free minute at the piano playing Christmas music. I think pretty soon my parents are going to regret getting me the music book with 120 Christmas songs in it. My mom got me a gingerbread house kit which I have been waiting to make all week. Lara and I are going to work on it tomorrow if I am feeling up to it. I have always wanted to make a gingerbread house...its even on my life's to do list. If I can't eat gignerbread, the next best thing is decorating it. :)
Tonight is the big Christmas party at church. I am going to try to get dressed up and drop by for half an hour or so. I haven't been to church in so long that I'm beginning to forget what all you Calvary folks look like! lol
Thanks for stopping by, I hope everyone is having a wonderful day.
God bless,
XoX Caitlin
Jo
I spoke with Caitlin a little while ago and she and her parents will probably be heading out to the hospital as soon as they get confirmation from their doctor. Early this morning Caity started vomitting blood and as of right now they are venting her G tube and there is bleeding there as well. They are in contact with the surgeon right now. I think Caity is calmer than the rest of them right now. He first reaction to the situation was not "Maybe we should call the doctor", but "Maybe we should call the prayer group." Typical. lol. Please pray that she doesn't need surgery as she has such a difficult time with anesthesia and usually gives everyone a good scare. Thank you for your prayers for Caitlin and all the other kids traveling this road. I'll try to update when we know for sure what the plan is.
Jo (a friend from CHONY)
Did you read that? Yes, its SNOWING! The first official snow this year. I just love the smell of snow. :) I got all bundled up and went outside for a few minutes to watch it. I just love the smell of snow. :)My overprotective Dad was afraid I'm going to get sick from eating acid snowflakes.lol. I'm always amazed at how many snowflakes there are and each one of them is different. I thought that if God could care so much to put so much detail into snowflakes, how much more does he care about us? Its one of those things that seems to go beyond human understanding. Dad dropped my Operation Christmas Child boxes off at church. We made 5 boxes of toys for the orphans this year. I'm not sure where they're going this year but I wish I could hand them out and see the kid's faces when they open them. That would be an amazing missions trip to go on someday. I'll have to add it to the list. I breaks my heart to think that most of those kids have never even owned a toothbrush before.
I am starting to feel better from the trip to see Dr. Nahm (dysautonomia specialist) last week. He said he is going to transfer most of my care to Dr. Sora back home since there isn't much more he can do. It will be nice to not have to get carsick from going to see him or get meds. Other than that I'm holding up allright. Thanks for stopping by and signing the guestbook. Reading all your kind words really makes my day. :)
God bless,
XoX Caitlin
Jesus is the reason for the season! :)
I know Thanksgiving was a week ago, but God has blessed me with so much that it doesn't feel right to limit being thankful to one day a year. So I've made a list of all the things I am thankful for today:
1.My salvation and all that God has brought me through.
2.My family and friends...I don't know what I would do without all of you.
3.My Calvary Church family. I can't think of a better bunch of people to spen eternity with.
4.My dog Frisbee who I can always count on to keep the couch warm for me.
5.The little things that all add up to make the world such a great place - snow and butterflies, and stars that shine even when its too cold for me to take my telescope out.
6.Lastly I am thankful for this journey that I have been on. I admit that parts of it could have been better, but overall I have met so many wonderful people and seen more miracles than I ever thought possible.
Thanksgiving was wonderful for me. I made it out to Aunt Judy's for a while and I was able to sit up at the table with everyone for almost the whole dinner. My cousin made pilgrim and indian hats for us all to wear(I was an indian) and we all read the thanksgiving story. Lara and I switched the place cards to sit next to each other and ended up mixing up the order of the story, but it all worked out alright. You know me...always causing trouble. ;) Thanks for stopping by. I wonder who will be first to christen the guestbook. Hope everyone's having a good day!
God bless,
Caity
God bless,
Caity
----End of History----
| Donate | How To Help | Partnerships | Contact Us | Help | Terms of Use | Privacy Policy | |
|
Copyright © 1997 - 2004 CaringBridge, a nonprofit organization, All rights reserved. |