Baby Steps

XPost / Original July 15, 2008

The doc I saw yesterday was nice enough; a little Greek (I think) lady. I don't have anything really definitive to share about yesterday's rheumatology appointment except that I appear to be shrinking. I have yet to have various lab tests done before she can really give me a specific treatment. This wasn't done yesterday because I am eligible for a clinical trial she's doing, and if I decide to do that, I should enroll in it before spending my own money on treatment. Essentially, the treatment she anticipates using is almost the same as the one being studied in the trial - just an improvement on a drug already FDA-approved. The immediate problem I see is that I have a one out of 3 chance of not even getting the med as part of the study. That's just PART of the treatment, though. It's all very complicated and I haven't had enough energy or focus to digest all the reading just yet, so I have more questions than answers at the moment.

I'm still trying to wrap my head around the chronic and unyielding nature of my illness; let alone the various treatments available. I have such a difficult time comprehending how treatment is even begun on a completely alien disease process. If you don't know the cause, how do you possibly hope to cure it? I don't trust "modern" medicine. The risks of side effects of treatment are supposedly less harmful than the disease itself. That's what I keep seeing and hearing. I got a pretty big dose of "you waited a crazy long time" to seek treatment yesterday. Between beating myself up over stubbornly procrastinating, being overwhelmed with reading material, struggling with the decision between guaranteed treatment that's going to cost a fortune (and may or may not work) versus a potential treatment that won't cost a thing (and may or may not work), worrying over the thyroid lab test and the hand & foot x-rays, having to get a TB test which I dread because the last one flared my whole arm, and feeling like I look much worse than I thought I did (grossly freakish, actually), acting like I'm just fine in front of my kids is tough. I just want to sit in my bed and cry. Sleep would be nice, too. I can't do that, though.

Anyway, I really, truly appreciate everybody's thoughts and prayers and vibes. It's hard to talk about right now without crumbling, so when I've had a chance to deal with it and have some better answers, I'll update here. In the meantime, I have too much to do with my kids to stop and have a pity-party on the phone. I have such wonderful friends, I know you understand.