serah[DOT]nu

I’ve been having less seizures while I am awake, even by my standards. My guess is that I’m eventually going to have a larger one as a result of this, because that’s just how things happen with me. I almost — no, I actually do — prefer to have more consistent seizures while I am awake because then they tend to be smaller, but if I don’t have one and I don’t have one, it’s larger, almost as if to compensate. I may be having them during the night, because when I do remember having dreams, they are distorted and parts of them are frightening… and that’s almost always a sign that I’ve had a nocturnal seizure. They most definitely interfere with how rested I do — usually don’t — feel the following morning. I can almost always tell, heh.

Luckily, 2,700mg of Gabapentin per day makes things as bearable as they can be.

It’s adorable to explain to people on my governor’s Facebook page that no, I really can’t work. I am a liability to hire and have on the job because you can’t actively tell when I am having a seizure. I go apraxic during almost all of them now, meaning that I literally can not talk. If you’re really lucky, I can gesture to my head and say the word seizure, but that depends on exactly where the seizure hits my head. Almost all of the time, the seizures induce some level of panic because it is literally like throwing an egg at hot asphalt as hard as you possibly can, but all of this is happening in my head. If one hits — and I’m never quite sure when they will, although I do have an aura almost all of the time, and it gives me some warning when I start to go into aura — there’s absolutely no way that I can continue to f fulfill the duties and requirements of my job.

It’s that time again.

I bought a calendar for the last four months of this year, and I bought a planner because I need one.

I am also continuing to stay off of prednisone for Reasons™, and since I’m not on prednisone, NSAIDs are not even an option. But my body has made it increasingly clearer that it can no longer tolerate prednisone, so I have basically relegated it to “only if I could actually die” after giving it some more thought. And I mean that literally, although the ideal would be simply never to need it again because other workarounds are in place. Right now, I am continuing to deal with the fact that various wounds of mine — places where I’ve been pinched by Bub during meltdowns, shaving nicks — are not healing, not like they should, nowhere near.

These aren’t small things, either, like “I gained some weight from being on it,” or “my appetite increased while I was on it”. These are the fact that even superficial wounds do not correctly heal while I am on prednisone or for awhile afterward, so I always seem to be in some state of flux as it relates to wounds not healing like they would if the last time I’d taken prednisone was… say, more than a year ago. There was the Staph infection that I managed to contract on one leg, beginning to pass it off to the other leg by reason of no more than their proximity to each other and the level of immunosuppression that I had at the time. And there, last but not least (for now, anyway) was the stomach infection that I had that was easily the worst illness of my life… and I’ve been sick many times over my life, so I feel like I can honestly actually say that. The level of nausea and vomiting that came with that was far worse than any other infection, even those that themselves have caused nausea and vomiting. And that should say a lot, comparing infections like that.

As I’ve mentioned, prednisone was great while it lasted at doses appropriate to my diagnoses.

But it isn’t great any more, so I’m going to attempt to stay off of it with far more aggressiveness now.