Magical Truthsaying Bastard Shadesong (shadesong) wrote,
Magical Truthsaying Bastard Shadesong


Brain is mostly better now.

Side effects = teh suck.

I took a quality-of-life quiz on the epilepsy foundation website the other day... if you get 15 or higher on side effects or on not being able to do things you should be able to do, you should talk to your doctor about changing medications.

I got a 45 and a 30 respectively.

So I guess it's no longer a question of whether I should ask to get my medication changed. Just... what we're going to do about it.

I think a lot of people don't really *get* this. I'm distressed because my brain isn't working. In some really basic, drastic ways. And because the medication that I'm on is supposed to be the anti-seizure drug with the *fewest* side effects, and yet it seems like my mutant body is rejecting it. Tegretol, Neurontin, etc. are supposed to have much worse side effects. So what happens if my body just can't handle any of the drugs? Surgery, or living with seizures.

So you see why I'm scared all the time?

I think I'm only able to write this like this because a) my mind is just starting to work its way back up and b) I just finished one of Elayna's books, Snail Mail No More by Paula Danziger and Ann M. Martin, which is an epistolary novel - so I'm writing in that style, like a letter to a friend.

That book was a sequel - and Paula Danziger died, so there'll never be a third one. Which sucks, because Elayna and I really liked these.

Anyway. Scared all the time about my brain. I don't know how much of that comes through; I know that there are people who misperceive it as whining and whatnot. But imagine this happening to you. Seriously. Close your eyes and imagine not knowing if your brain was going to have this electric storm at any moment. Or if your brain suddenly... I told Adam that my brain "fell down". I was okay, and then... just fell. I was okay tonight until then. I never know if I'm going to be okay, so I never feel safe anywhere, anytime. (EDIT: Like earlier today I wrote the Julia "snapshot", which I thought was quite good. And then, same day, just... fell down, and I couldn't *think*. I can't rely on my brain to maintain a level of coherency.)

I'm seeing the neurologist on the 3rd. And there will be much talking. And my mom will be there, which actually feels like a comfort, because sometimes with doctors I'm hesitant to push issues, but I'll have backup this time.

EDIT: I have to go to so many doctors. The neurologist, I need to go back to the dentist, I need to go back to the opthamalogist because of the borderline-glaucoma thing, I need to get my yearly and probably a baseline mammogram, I need to see a plain ol' doctor about the effects of my drastic weight loss (esp. the hair-thinning and the bruising), and I know that I do need to see a nutritionist, but that's the lowest priority.

I guess that's it for now.
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