It's one thing to know you're sick. To know your doctor is wrong. Then comes the moment when you finally find out that you find out that you were right and the tests begin and you're back in a holding pattern, waiting to find out what is wrong. Until you get a diagnosis and all the pieces finally fit together. For awhile, it feels unreal, but more than anything else, you feel relieved.
I knew after this last flare started again and I was finally diagnosed with MCTD, I was going to have to change a lot of things. I was going to have to start over in a lot of ways because a lot of damage had been done, I have a 10 year disadvantage, steroids had failed (I was put on prednisone, medrol, and cortisone over the past decade and while it didn't quite work, it didn't entirely fail...it just slowed the progress a bit). But more than anything, it just didn't feel real. Until the past few days.
I discovered a new symptom--I hate the sun. Well, I don't, my body does. Even with a high SPF sunscreen, in less than 5 minutes it feels like someone is throwing acid on my skin. It turns out it's not the result of my medication, but it's the disease and the only thing I can do is wear sunscreen and cover up as much as I can when I am out in the sun. Then I finally got my test results to find out if I can start the immunosuppressant Imuran--I start tomorrow. And I start a very high dose--with a LOT of warnings and precautions. Basically, I have to become a germophobe because if I catch even a common cold, I can end up in the hospital. Granted, I knew all of this weeks ago, but I'm just starting to realize it now.
And it's not only unsettling, it's scary. It's one thing to know something, but something totally different to realize it. I've learned to find the upside of things. If I can't? I find something to laugh about. I mean, my mother and I almost got kicked out of a hospital waiting room because she's on dialysis, I'm a perfect match, but can't donate, and we came up with the idea that I would donate one of my kidneys, go in for the fistula surgery (since my own creatinine levels have been slowly rising), and when my one kidney started to fail, she'd loan it back to me. And we'd go back and forth, depending on our financial situations at the time. Granted, it's not really funny, but we had everything worked out down to the last detail, and found it hysterical. Even funnier? While we hatched our insane plan, my father was in an OR with his chest cracked open having major heart surgery. That's just how we deal with things. Find an upside, or find something outrageously inappropriate and laugh about it. Except I'm still trying to find a way to do either right now. Except maybe I haven't been told I have to quit smoking because every imaging scan I was given showed that my lungs are clear (even though I have asthma and COPD).
Now I'm starting to realize that "normal" will no longer exist. Well, there will be a "normal" for me, but it won't be close to what other people define as normal. I just have no idea what it will be. Will it continue to be this constant horrible pain? Will the pain be worse? Will it be better? Will my range of motion/mobility get better with treatment? I've already lost 60lbs, even though I've only dropped one size (the joint and lymph node swelling has a lot to do with that). I was already warned about sanitizer, germ masks in certain situations, precautions... but what will it be?
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