I have dropped off the radar again. Not intentionally; the days just seem to meld into one long day, and I’ve been so sick, time is getting away from me. I haven’t talked to my best friend in at least a month. Again, not intentionally. I’ve written so many ‘I’m sorry’ emails in the past, I just don’t know what to say anymore. I feel extrememly guilty about isolating, but at the same time, I can’t seem to stop. I had a horrible realization a few days ago, and it was-I make it through each day and try and get well enough to make it to my next doctor visit. I actually missed my last one. I couldn’t get out of bed so C went and picked up my prescriptions. This is no way to live, I feel powerless to change it.
Between non-stop flaring and being a momma, I have no time for anything anymore. Facebook, my Christian groups, Flickr, television, nada. For those who aren’t computer-heads it’s not much of a big deal, but the computer has become part of my life since becoming ill. It’s my ticket out into civilization, lol.
I am almost done with the slew of tests ordered. I meditated my way through extreme panic in the MRI machine. Gawd how I hate those things. I always, always have a major anxiety attack in there. It’s so tomb-like. As soon as I get rolled in, the hand that’s gripped around the panic button starts to sweat. With every other MRI I’ve had, I went in head-first so C would sit at the foot of the machine and hold my foot. I love this man. This time it was feet first, so the top of my head was sticking out of the machine. I was too far in for him to touch my head, but I knew he was there and it always helps. We got the results back for the MRI. It was clean. That’s always a good thing except when your doc is trying to diagnose retroactively.
I made it up to the teaching hospital for my hands. Now THAT was weird. I had two residents interview me. You could tell one was almost through her residency by the way she seemed to be teaching the other guy. He was young, his mouth hung open a little like a ‘wow’ expression. I’m sure he didn’t even realized he looked scared but I felt sorry for him. So they tell me to get undressed and to keep my panties on but everything else off. I’m like, Hello? The rash is on my HANDS people! But I do it anyways because I am the good patient. snicker. While I’m changing I can hear the female doc rattling off my history to another doc who sounds like the woman in charge. I had such a hard time answering all of her questions. I didn’t realize I would have to go through my illness from beginning to up-to-date. I thought they were going to look at my hands for an opinion of whether or not it looked like dermatomyositis. Well, Big C is my memory. I’ve been really lax at keeping a written journal of symptoms and dates and such. He remembers EVERYTHING. On that day, he couldn’t break away from work and I understood. But when she was asking me for dates and such, I got so confused I started to lose it. Yes, I cried again. She changed from robotic question shooter, to a nice woman. I got off track. Here’s where it got weird. I’m here for a hand eval. They tell me to get completely undressed and hop into a ‘gown’. Then, the two docs come back in and start to examine my skin. But, instead of saying “lift your left leg” or “turn this way” they just picked up body parts and lifted, twisted, ran their hands across and so on. I felt like a rag doll. Twas really strange people…The guy actually pulls off my socks by the toes and runs his hands all over my feet, turning them this way and that. Then, instead of handing them to me, he tries putting them back on himself. I almost started laughing just watching his expression. It was like they were working on a cadaver. So they sit me up (yes, with a pull on the arms) and she starts going through my hair and showing him the ‘female pattern baldness’. To which he says, un uh. She says oh yeah, feel right here on the top you can feel how it’s thinning. They discuss my hair or lack thereof for a few minutes and then get down to the hands. Pictures and more pictures. Finally the head honcho comes in and tells me it looks like a classic case of eczema. “Yep. Eczema. I don’t think the rash is autoimmune related, or at least related to your autoimmune conditions.” I’m thinking, this is just friggen great. I need an answer, please please, someone give me an answer so I can get some different treatment. Treatment that works, and treatment that will allow me to get off of the prednisone so I can get rid of the Cushing’s and shrink back down to me. Maybe even grow some flippin hair back. She then tells me that if it’s OK with me, they’ll do a biopsy while I’m here so my doc doesn’t send me back for one. I say yep. The last biopsy I had found my small fiber neuropathy. They took it from my hip and above my ankle so I had to lay on my side. Big C got to see the gory details, but I couldn’t sit up to look. This time I’m looking down on my hand and uck. It was so disgusting. They take a little round hunk of flesh out with a miniature cookie cutter like tool. She sewed me up and I assisted without even realizing it until she said, I can tell you are a medical assistant, because you are assisting me. Ha! It’s definitely been a while.
Fast forward to a few days ago and I get a call from the female resident and she says “We all could not believe it. We had all bet on it being eczema, but it was clear as day, no ambiguity, connective tissue disease. Now they just have to figure out which one-dermatomyositis, lupus…” I am so happy that finally, finally there is some concrete evidence other than bloodwork. I don’t tell her that we’ve always known it was a connective tissue disease and just had a problem pinning down which one because she sounds so genuinely happy for me. So I just said thank you, and thanks for being so kind when I broke down and blubbered. So, that’s where we are now. The rheumy at the hospital ordered more bloodwork and faxed it down to the hospital in my town, and I’ve been trying to get well enough to get up and get in the car to go get it done.
We are closer to an answer. This doc is going ahead with therapy, no matter what. It’s going to be Cellcept if the tests point one way, and IVIG infusions if they point another. For the first time, C and I both feel optimistic about getting a diagnosis (that sticks) and going on to the next tier of treatment. Crossing out fingers.
Until next time,