Friday, February 5, 2010

The Cleveland Inquisition and Redirection

I've spent the last three hours sitting here staring at my computer. I'm not sure where to start, how to start, what to say. Its been an interesting day. The drive was uneventful, I found the Dr's office with no problems, was seen quickly, and was seen by a great doctor. We sat down and basically went back to the very beginning. It's been nine years since I got sick and was diagnosed with RA. I had to really think about everything thats happened in the meantime. The medications (there've been many!), the tests, xrays, etc, all the fun stuff that makes up a persons medical history. Every detail I could remember of the last three flare ups, and what happened this last time. An hour and twenty minutes later, after rehashing all I could remember/think of that was important, or could in any way be relavent, I was sent downstairs for a barrage of lab tests. Armed with my new dr's business card, information about a medication she may possibly be placing me on, and an appointment for two weeks from now, I was sent on my way.

Needless to say, the appointment left me with more questions. Not ready to give me a diffinitive diagnosis on what she believes is "wrong" with me, until the tests are back and we sit down for part two of my "cleveland adventure". She did however leave me with an impression of what she believes to be the problem. And after spending three hours at the library immediately upon returning to Erie, I have a feeling she's probably right.

It appears that this blog, which I spent so much time working on yesterday, is a bit of a misnomer. There is the very real possibility that I do NOT have RA, and in fact actually have Lupus and Sjogrens. Lucky me, I get to trade one in for two! I was talking to my sil earlier and she asked me if I was stressed. To be honest, I'm not quite sure what to feel. I've spent the last nine years believing I've had something else. I did my research, I knew the symptoms, the treatments, the basic progression of the disease, etc. I'd accepted it. What it was, what it was doing to my body, what it had the potential to do in the future. I'd spent nine years treating it, trying to slow it down, believing we knew what the problem was and that we had it under control. And now...? I'm back to the beginning, learning about something new, going through the whole process all over again. Not only am I having to deal with the fact that I have new things to learn, but the fact that its been undiagnosed and mistreated for the last nine years. Nearly a decade of a disease with systematic problems and complications, ranging from kidneys, lungs, etc going untreated. What is that going to mean? The doctor was very kind and answered my questions, whats the difference between lupus and RA, what IS  Sjogrens, I really didnt know what to ask, what to think.

I never thought I'd be sitting down and looking at disease "options" and trying to decide which one's looked better. But there I was in the library, pouring over the Sourcebook of Immunological diseases and disorders soaking in all I could find about Lupus and Sjogrens. And finding that what I was reading lined up rather well to what I'd been experiencing. What am I feeling? I'm scared and hopeful at the same time. Scared that they're right and I have complications from not having the right treatment--Kidney problems/failure is no laughing matter--of not knowing what to expect and whats going to happen. Hopeful that it will mean we're able to better control and possibly "downsize" or eliminate the frequency and severity of my flare ups. Angry that its taken this long to figure it all out. Angry at my dr's for not finding it, myself for not going out there for a second opinion sooner, my mom for talking me out of going every time. Overwealmed with all the new information and possibilities. Tired of it all. Tired of worrying, wondering and trying to figure it all out. And just plain tired.

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