Tuesday, October 18, 2011 0 Comments A+ a-

November 1st are my 6 month check-ups at Hopkins. I'll see the rheumatologist and most likely have to have a PFT, which I hate. They're just a necessary evil that's a pain in the butt. I don't complain though, that's a test that helps keep Sclero progression in check. All-in-all, none of that bothers me. It is what it is. Aside from the one flare a couple months ago, the fatigue, and damn ulcers, I really am doing great! Those are just so much of my daily life now, that we just make sure they're not out of control and move on. Sometimes, it's about the big picture. The sum of all the parts.

At least most of the time. The ulcers and bent fingers are just more than I foresee myself dealing with for the next 30 years without a decrease in my quality of life. A decrease in my independence. And, well, without going bat-shit crazy. So, I have an appointment with my hand surgeon. He's awesome. He saved my right ring finger from needing to be amputated. He straightened my right pinky, decreasing "bonking" and in turn, no more ulcers on that one. He also amputated my left index finger. At my request. Understanding my reasoning and not treating me like I was crazy.

Now, I'm going to him in hopes of straightening ALL of my fingers, to some degree. By straight, I don't mean, pointing at you straight. They'll likely all end up permanently curved. To what degree, I don't know. Just something better than the permanent fists I'm sporting right now. The middle knuckles will likely be removed and the finger bones fused together (). My other idea is to amputate all my fingers, except my thumbs and get bionic ones. Seriously. There's a company that has bionic fingers. See my older blog posts to check it out. My concern is that the technology isn't what I'd like it to be yet, and I'd end up with really hard to use stubby hands and ZERO functional fingers.

Initially, my idea for this wasn't scary. It was more of a "this shit's broken and here's how we can fix it" approach. Now, the reality is sinking in that, my hands have progressed this way over time. I've learned to adapt slowly. If I do this sort of surgery, it will likely be a hand at a time. I'm going to have to learn things ALL over again. In a hurry.

Granted, there will be no more knuckle ulcers, I'll be able to wear gloves again, hold a glass, etc, but, what things WON'T I be able to do? The list of possibilities swirling in my head are endless and I'm having reservations, but what else is there to do? Cuz, THIS isn't cutting it anymore.

And, I'm NOT ok with that.