Or How I Learned To Start Worrying And Abhor This Debilitating Disease.
I guess this is an introductory post, wherein I’ll detail who I am and what’s happened in the lead up ‘til now.
I’m Arcturus Kirwin, I live in Brooklyn and I’m 28. I suffer from what is believed to be by doctors far smarter than I (or at least more knowledgable), mitochondrial disease. It makes me tired and confused. Forgetful, clumsy and a complete spaz. And a lot of the time, very VERY bitchy.
I can’t write or work like I used to, and I’ve lost a lot of the use in my legs. I envision, that perhaps in a few years time, I won’t be able to use them at all. 3? 5? 10 years? Who knows. Remitting-Relapsing things like this are… an annoyance, at best.
And at worst, I have sincerely wished that I didn’t have legs at all, because the excruciating agony they cause me.
It’s gotten to the point now where it’s affecting my lower back, too. It’s why, from in the near future and then on, I intend to use a wheelchair to get around whenever I can.
That way, I don’t have to use my damaged but not totally useless legs.
I thought I’d make this tumblr so that I’d have a place to put my thoughts, talk about what I’ve been doing, how -I- am doing and so on.
Today, I went to my neurologist. We’re waiting on some blood test results and for me to get my liver ultrasounded (but no probes!), plus I need to see a: Neuropsychiatrist, a Pain Management Doctor, a Dermatologist and a neurology colleague of his who specializes in epilepsy, which means they might be able to treat and lessen my tremors and muscle spasms.
That’d be totally sweet. And that’s what I’m hoping to get out of all this energy and stress I am expending/creating. That things can be ameliorated slightly and that, when they find out exactly WHAT mitochondrial disease I have, they can plan a treatment to slow it.
At the very least, what I know now is there’s no physical damage to my brain and that my eyes are in pretty sweet condition, as is my heart. That’s something, right?