Nineteen in Summer 2016

Writing early because I didn’t sleep well, again.

Today, I write about my condition. I’ve tired to avoid that, but it’s important that I do. Yesterday’s entry has what I wrote back in November 2010.

From 2010: I mean, the biggest thing, probably, is that people kind of think the worst about the progression — that I’m going to be a complete cripple within five years.

That hasn’t happened, despite a few disease exacerbations, and a long path finding the right treatment. I carry a cane when I’m out of my house these days, and have trouble going down stairs. My vision is also horrible.

I really stopped driving in the middle of 2012. Yes, a bit of an accident prompted that; I hit a spare tire that’d fallen off of a truck right in front of me in heavy traffic. When I tried to drive, again, toward the end of that year, I was having trouble working the clutch, reading the speedometer, and seeing red lights. (Yeah, a red light against a green tree? Good luck with me seeing that.)

But, on top of the physical problems, my horrible work situations haven’t helped. There’s a handful of people I’d just assume I never speak to again. I’ve never been spiteful like that, but no money on top of physical pain, disease-related difficulty, brings that on. (The first job after I was laid off was 78% of what I’d been earning. The second was a bit more salary, but no usable benefits.)

Have I been mistreated? You bet. Have I done things I probably shouldn’t have? Probably a couple.

Have some friends really shied away? Yep. Whatever. I could be angry about it, but what’s the point? I have other things to worry about.

All that said, I’m now on a treatment that seems to be working pretty well. I honestly often feel better than I have in years. But the damage is done, and I wonder if/when I’ll get back to living a somewhat-“normal” life.

There’s important work going on that might actually “cure” this disease. No, the treatment doesn’t sound fun at all, but getting my vision back would really make my life better. Studies have been done in the UK, Canada, and Israel with “miraculous” results. You don’t see that sort of language used in in the medical field.

(Essentially, they drill your femurs, gather stem cells, cultivate them, completely kill your defective immune system, then inject the stem cells to rebuild the immune system and repair damage caused by the disease. I’ll spare my commentary about the political implications of this, but I’ll say that I’m excited about the fact that the very-Catholic Georgetown University might be one of the places they try to do this in the US…)

I’m happy with some of accomodation my new job affords me. I’m still getting up-to-speed on some things, but I’m getting by. It’s incredible seeing the struggle ongoing to string along all this expensive legacy stuff.

I also have zero benefits, so my salary is still probably only about what I was grossing in 2007.

But I have a wife I love, and try to learn new things every day.

Tomorrow is the last day of this writing period. Taking suggestions for November, or any time before then. Hopefully, the rest of this year continues with the hopeful spirit I’ve had for the past few months.