Friday, October 21, 2011

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 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.

Sunday, October 9, 2011

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.

Saturday, October 1, 2011

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.