Saturday, June 29, 2013
The first thing you should know about me is I'm constantly frustrated by generalizations about health - this is changing very slowly, it's much better than when I was a kid and first diagnosed with lupus at age 10. But, I'm still faced with some really cruddy obstacles. For instance, I'm on SSDI - used to work, but about nine or ten years ago stroke number 2 kind of screwed that idea up. However, lupus is a chronic illness, and it goes in flares and remissions, and even in remission you can have various symptoms (I ought to know because I AM in remission - but wow do I have a ton of leftover damage). So, if the SS people ask me "has your health improved since 2011?" my answer is exasperation; in the fall I feel almost completely clear-headed, full of energy, bouncing around, tons of writing ideas, etc. Spring however is terrible for me, most of the time, since the weather goes all over the place and well my poor damaged brain is susceptible to air pressure changes. Brain fog isn't uncommon at all for people with lupus, and I get it like nobody's business. So you can imagine: am I doing better? If you asked me yesterday when half the time my brain was in la-la land, zoning on everything - I MIGHT be able to stare at you in confusion. If you ask me today when I'm more coherent, I'd just groan.
I'm a complicated sort, just as anyone with a chronic illness is. At the same time, I'm constantly trying to get myself to where I can sort of work again - a 15 hour week is the most I can manage to focus on, at the moment, and I'm taking that. I didn't do so well this past week, but I'm trying to force myself to take weekends off instead of charging through and overtiring my mind (when it gets overtired, it will actually shut down stuff so I lose the ability to speak/move/do things). Crappy weather in New England just now. My goals are to get myself the ability to make games based on worlds I've created through writing, so I've done the best I could with that. I've been working on my third game ever for a couple months now; it's in Python, the only programming language I sort of know as of yet. In between times, I'm either gaming or building models of worlds of my creation in Minecraft:) Since I have an actual blog, I will likely just post stuff from there most of the time, like this one:
Me, in a nutshell.