well......!!!

After the last 2 months of amazingly hellish pain, and waiting in breathless agony for the last 7 months-ish, I had my hemotology appointment on Tuesday finally. Turns out "hemotology clinic" is a fancy way of saying cancer clinic. They did a bunch of blood tests and ultra sounds which ruled out leukemia, thankfully. My hemoglobin was low, but otherwise the blood tests weren't bad. They also did a bone marrow biopsy, which are not for the faint of heart. They said they had never done one on someone with osteogenesis imperfecta before so yay, for my being a guinea pig and it was the most difficult one they said they had ever done. But I survived. They're checking for myeloma in the bones. I also have to do a 24 hour urine collection in a huge-ass jug they gave me so they can check for some kind of proteins that are present in urine if you have bone cancer apparently. That sounds fun, carrying Jug 0'Piss around the hospital my next visit, eh ;)

But I don't think it's cancer. I went to the rheumatologist on Thursday, because I seriously wanted to die from the pain at that point, and could no longer even raise my arms to brush my teeth or raise a fork to feed myself, or sleep for more than ten minutes at a time even on percacet every 3 hours. This time he said it's the rheumatoid arthritis, and SEVERELY so. He said there's fluid build up on my neck and upper spine causing the extreme shoulder pain and deformity. He gave me 3 cortisone shots, one in each shoulder and one in my hip. I had a really rough night Thursday night, but yesterday the pain was about 50% better, which was such a relief!! I know it's just a temporary band aid, but man, the pain's been so awful.

So the rheumatologist is putting me on a different medication for the rheumatoid, as the methotrexate is obviously not working. I have to try several more "cheaper" meds before they'll allow me to try remocade, (which a friend of mine is on and says it's like a miracle drug) as it's more expensive. I wonder if the people "at the top" suffered through this pain if they'd have to wait months and years and try other things...hmmm....

Oh!! On a positive note: the hemo clinic doctors told me there's a new experimental treatment for osteogenesis that i'm eligible for! They've submitted my appliction for it. It takes a few months to get approved, but apparently patients with it have 80% less fractures! You have to go and get it by IV every couple weeks for several hours. This is the first time EVER anyone has given me any hope whatsoever of treating this damn disease; I'm stoked! :)

Oh!! Another positive note: Going to see Matt Good again for my birthday this Thursday, my birthday present from Seanie!! Poor Matt's super sick with food poisoning right now though, I hope he's up to it by then.

So glad to be even in a fraction less pain, :),
D.