Thursday, April 17, 2008

My Story, Part II

*** WARNING: This is probably going to be long, too ***

So, over the past several months, I have seen a rheumatologist (Doctor C), a gastroenterologist (Doctor D), and an ear, nose, and throat doctor (Doctor E). I used to be the kid who hated blood and needles and now it has pretty much (sadly) become second nature to me. I've been poked and prodded more times than I like to even think about. But ultimately, if we can get my illness under control (notice I don't say "cured", because that's not possible), that will be worth everything.

If I didn't have much of a social life before, I certainly don't have one now. I've spent more time in doctor's offices than I have anywhere else in the past eight months, I've had to switch my primary care doctor from Doctor B to Doctor F. This was a difficult, but I think ultimately, the right decision.

I've learned through all this that the only one who truly knows your body is you. So if you think something is seriously wrong, keep fighting until someone will listen to you. Again, this goes back to being you're own advocate, but I can't stress it enough.

Anyway, I went off on a tangent, there. So, I finally went to Doctor C, who ran about a million blood tests to try and get more information on what might be going on with my body. The same tests that Doctor B had done had come back positive. Doctor C put me on low dose prednisone and hydroxychloroquine (It had been almost four months since initially going to Doctor B that I was put on medication by Doctor C).

In the meantime, I was having new symptoms almost daily, was feeling like I was being bounced around from doctor to doctor, and felt like I really wasn't being taken seriously. Along with not feeling good, I became intensely frustrated. I'm told that in some ways, this type of frustration is normal when you are diagnosed with an autoimmune disease because so many of these diseases avoid easy diagnosis.

I soon realized, however, that there was a part of my medical team that was not working and I was determined to figure out who it was. I determined that it was Doctor B, and as I suggested, have recently switched to Doctor F.

My current repertoire of medication includes low dose prednisone, hydroxychloroquine, omeprazole (for GERD caused by the prednisone), and cellcept. Although the closest I have come to a diagnosis is juvenile arthritis and/or adult lupus, the cellcept seems to indicate a more lupus like disease. I am still trying to decide what exactly this means for me.

So this, in a very long nutshell, is my story.

* These are the drugs I was prescribed. I am not suggesting that these will work for others or in the combinations I describe. Again, my journey... *

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