These Days

Ever since my treatment, I've been in the 30k-60k range, and so a month ago my doctor made the cringe inducing decision to try me on a pill every other day...to which I stayed stable. Then she made the even more cringe inducing decision to take me off them for a week altogether. I prepared myself for either A) red spots & bruises all over my leg/flare up or B) a trip to the ER. Amazingly neither happened, and my levels actually went UP. On no Prednisone. 2 weeks after that (again no meds), my levels stayed the same.

This is fascinating because if you reduce the amount of Prednisone of someone with ITP, their levels go down. That's why I was on the drug for 7+ months. And so- we are thinking the Rituxan worked slightly, in that it is helping to keep me stable. Granted I am still not in remission and there's still time for everything to go wrong (hey, a pessimist is never disappointed)- but until then I am enjoying being drug-free for the past month. My relationship with my boyfriend has been considerably less dramatic and I've been non-psycho girlfriend. And just in time for the holidays! Another CBC test in 2 weeks. Until then I'll keep doing my best to not stress myself out.

Which I think is an admirable goal for anyone, on any given day....

Back to the Beginning

So it looks like my condition is gonna stick around for the foreseeable future. Not that I was expecting any crazy miracles, but whatever. My levels went down, but are holding in the same range (30-upper 60's). They havent gone out of that area for 2 1/2 months. So my doctor decided to try me on taking the medication every other day. So far on the 2 days I wasnt taking the pills I had headache and nausea/chill withdrawal symptoms (Thanksgiving was the first day in 7 months I didnt take ANY medication). It sucked. That may also mean I've gotten slightly/alot worse (the chills). Only the next CBC test on Wednesday will show whats up. My prediction is not much new.

I started looking at medical bracelets yesterday, which was weird. Once I put one of those things on it's almost signifying to myself that that's it. Done. No hope of remission etc.

In other news my tap classes are going great. I love it, and thankfully I'm not the worst in class. In fact I'm semi-decent for someone with no experience. Also I was right, for the most part it's distracted me from occupying my entire brain with any illness related paranoia.

29

Today is my birthday. I spent it pretty low key, since I had told everyone I was not feeling so celebratory this year. I'm grateful to not be in a hospital, infusion, or the like- but still-when and if I ever get better I'll have a big party then. Also, the thought of organizing anything with alot of people just makes me anxious. Funnily last year I had a giant house party. How things change in a year!

I signed up for Tap Dancing class this week. I've always wanted to try it since I love old musicals, vaudeville from the 20s, 30s etc etc....also it's pretty "low impact." I doubt I'd get bruises from it :p I orginally wanted to try martial arts but that's going to have to wait. The main reason I'm trying tap now is because I need a distraction. My routine is just work, what to eat, hospital/ITP, repeat. I'll be happy to have a routine that involves 234 tap tap tap.

Recently

Ah. Here I am at North Park again. Don't let the smile fool you, I've visted it twice in the past month to calm myself down or "reflect"...yeah it's corny but I need it. Things have been busy, primarily as I was doing the centerpieces for a co-worker's wedding. That and all the Halloween activity has tired me out.

So...still trekking along with these below average levels. Next week it'll be two months since my Rituxan...and nothing. Still on the same amount of meds so at least there's some routine. I've begun feeling a little bummed out again because I'm not sure what else to do next from a personal standpoint. I may try and revise my diet again since I've been slacking, and I may also try and do more meditation and anxiety reducing exercises since the Holidays are coming up. Noticing before a panic attack sets in is something I've gotten a bit better at since I was first diagnosed, and I've reduced the number of episodes I have. I'll have to pay more visits to the forest.

I'm going to start brainstorming for winter activities (low-impact/low stress) that I can look forward to. I think a problem I'm starting to have, and a reason I feel myself regressing emotionally, is that every day all I have on my brain is this illness and how I'm feeling in regards to it. If I had something I could distract myself with maybe the winter won't be so bad.

Staying In

I was once in a support group meeting for ITP in which we told a newly diagnosed guy how, once you become ill, you kinda spend alot of time at home or by yourself. This can be frustrating at first, but several months on I've gotten used to it. I told the guy that I developed new hobbies, and new interests I otherwise would not have, due to my disease. My mother gave me the best advice during these solo evenings, especially when the medication was either about to give me panic attack or make me really depressed- "don't be alone, or keep busy." Many times when I'm about to have a mini-break down or lose it..I remember this, and even something as simple as turning on the tv distracts me from what I was about to freak out about. Anyway, the point is that through this reminder of keeping busy, I'd usually do one of the following:

- paint or draw
- write in a journal
- put in a movie I'd never seen
- look through cookbooks at something I could try out
- grab a book or magazine
- play some records I havent heard in a while
- try learning the keyboard I've had for ages

It's a Friday night and my boyfriend is out with his friends, and I (as usual) back out at the last moment. I rarely go out, and I have to try really hard to make the most of my time indoors, otherwise I feel like it was time wasted, and when you're ill...you want to make the most of your time in whatever way makes you content. SO...I could have been out at a bar, sipping on water wondering when we get to go home, annoyed at everyone trying to yell over each other-but instead I learned how to play 2 new songs on the bass guitar (an instrument I never picked up before I got sick).

I'm no Kim Deal...but I am closer to it because of my disease.

Licorice, Walks

In my infinite quest to rid myself of this disease I now continue the series "Michelle Will Try Anything For a Cure." This week, after reading about the benefits of licorice root, many people on the ITP facebook forum have discussed how it helped them. I am now drinking 760mg of Licorice Root thats in this Throat Coat tea I found in my cupboard, followed by a sour face. I hate licorice and have never liked it. Jaegermeister? Gross. Panda Licorice Chews? Yuck. This tea? Nasty. Screw this. I am going to buy licorice root capsules this week and take the easy way out.

In other news, my levels were raised slightly this week, but not "normalization" as if the Rituxan had worked. So, nothing again. The interesting bit is that they never raised my meds last week, but my counts went up. (Usually levels go up when meds do) So that was good. Go back next week for another count.

So, Autumn here in the midwest is great, and while I didnt have time to schedule a trip with my infusions and appointments happening, I'm trying to work in some day excursions that are close by. Today I made it out to one of my favorite places in Chicago, The North Park Nature Reserve. I listened to Grouper, spotted a giant pond Turtle creepin on me, and a chipmunk chillin out. It was a great de-stresser.

I want my money back

So went for another test Wednesday, and zilch. No crazy awesome super-blood in my system. Just another dip in my counts. I'm starting to mentally prepare myself for the possibility this treatment didn't work and that I may have to say adios to my spleen. What bums me out is not so much that it didnt/may not work- but that it didnt do anything for how much it costs. Shit should have given me big boobs or awesome hair for the price, or paid for the first year of grad school I would have started last month had I not gotten this illness! Anyway some people have a reaction to the infusion a month after, and it's been 2 1/2 weeks. So- we wait. Again.