Tag: neurofibrometosis type 2

I haven’t written much about my health the last few years… Mostly because Stonegauge is syndicated on the ever-so-excellent Tampa Blab where some of my blog colleagues (who know me better from my endeavor at Boltsmag or my participation at Sticks of Fire) can get wind of this stuff and start fussing and worrying about me. So can my critics as well with anything personal I write about on here. I’ve had private stuff published on this domain before and had it come back to hurt me. But that’s what happens when you blog, ain’t it?

I’m getting away from the fact that I said I haven’t talked about my health much at all on here lately. For the uninitiated, I suffer from a rare genetic disease commonly referred to as NF2. It’s a nasty little gem of a disease that doesn’t get much attention (besides an odd mention on House M.D. every-so-often). It causes benign tumors to grow mostly on nerves in the body. One of said tumors were the reason I began to lose my hearing as a teen and was rendered deaf 10 years ago last December.

It also gives me the supernatural abilities like super-intelligence, telekenisis and empathy along with…

Wait a minute, that was a John Travolta movie. Never mind.

Seriously… The last time I really brought up (bitched, moaned, vented, etc) my health was the summer and fall of 2003 when I hit a couple of hard patches and was frustrated, scared and just flat out torn up (to put it lightly). Blogging things publicly helped me get my frustrations and worries out in the open… or at least out of my head for the moment until the next panic hit.

It’s 4 years later and I’ve got problems again. Problems in my head this time that get the doctors attention. Now, from the smart-ass perspective, you’d quickly quip “Yeah, anyone who (inserts a thought, political idea, interest, etc) would be classified as having problems in the head!” but it’s a little more serious than that. About 5 centimeters worth of serious. Between-my-ears, behind-my-eyes serious.

I’ve been operated on twice up there before. Both times I had the operations in question out west with one of the top doctors in the world. This time around, I’m sticking in Tampa Bay and trusting a doctor who’s been heralded to me as one of the best in the world. He’s got books and awards and all that jazz. He’ll have some of my old friends along with him to make sure my ABI doesn’t get fudged up and what not.

Still, there are risks and even if they aren’t substantial — what they are is a worst case scenarios. So I worry about that, even though it’s almost like thinking about worst-case stuff when you go out and do day to day things.
“The worst case scenario while driving to the Supermarket to pick up milk is that an out of control mack truck with a drunk at the wheel, plows into my car and explodes…. Oh, and I don’t die instantly on impact!”

Rosy, cheery stuff like that.

So part of my mind (ha — the cause of all my problems) keeps wanting me to be responsible and at least report this upcoming operation, make arrangements for the “just in case”, “worst case scenario” type things. Every other part of me wants the status quo to remain — though that status quo is a deteriorating personal conditions where the changes in my health are more or less subtle until I get to a tipping point and things really get messed up and my life hangs in the balance.

Rosy, cheery stuff like that.

I don’t want to face the idea of things — out of my control — go bad and yet with responsibilities to friends and loved ones, how can I not?