It's been awhile since I've written anything just b/c things have been about normal. Whatever that is when you live with Polymyositis. Every month I go in to have my lab work taken and my CPK levels are elevated. Not super, super high...but I can generally tell you they're going to be high. Then, I have my IVIg treatments and my CPK levels go back down to close to normal. Hardly ever do they actually get normal, but they're so close to it I'll count it. Then the cycle starts all over.
My doctor said something in one of our appointments, or maybe it was one of her notes that I read, that I was at baseline. That kind of made me sad really. While I've come a long way from when I was diagnosed, I'm no where near where I was (physically). I was still wishing for more improvement. I mean, in my heart I knew that after this long, I'd probably progressed as much as I'm going to and now every thing is to maintain and not get worse. Still it was hard to hear it. I mean, I still have difficulty lifting "heavy" things (heavy is a relative term here), get off balance quite often, can't walk long distances or in places that aren't level/etc...on and on. But, I can walk (most of the time), I can dress myself, I can feed myself...I guess it's all good. blah.
Doc said that my white blood count was a bit low last month. Not too worried right now. With the combination of medications I'm on may cause my WBC to drop occasionally...as long as it doesn't stay low or doesn't get too low we'll be okay. Otherwise, we have to start playing with medications...and since my polymyositis is resistant to medications, that's not something I want to do.
No comments:
Post a Comment