This one is kind of apropos. Las weekend, my wife an I were discussing some of the folks we knew when we were dating, what’s happened to them, an so on. That guy is in North Carolina. That guy nobody actually knows where he is; serious. That other guy is in Georgia, but I haven’t seen him in IRC lately. What was his wife’s name? Geez. I don’t remember.
Today, almost a week later, I get her as a friend recommendation.
Naturally, it’s denied. Still, fuck you, you dropout ginger. Are you listening to our conversations?
I’ve deleted all but the messenger app from my phone. I don’t know what my wife has on hers.
And she wonders why I don’t have things from the Space Cowboy’s company.
They at least were listening. I’m not okay with that. So, I can leave.
On to what I was going to write about. This was from five years ago.
On being sick.
I understand why I chose this prompt for this date. I wrote much of this on the train heading to Washington DC to visit the folks at Georgetown School of Medicine. I wrote a bit about it recently.
The potential to get some of my life back would be worth getting my femurs drilled and Humira, or chemotherapy.
This is not a condition I’d wish on my worst enemy. (And if you know who my worst enemy is, please let me know, because I really don’t know who’d that’d be at this point. There is one individual I’ve dealt with professionally, recently, that I’d just assume never speak to again, but…)
So, I find myself trying to decide what would be the best way to tackle this.
The less-pleasant parts I really don’t feel like relating, but they’re all a part of the overall experience.
The most maddening part, though, is not one of the more disgusting things, honestly. I really am nearly blind these days. When I was younger, I’d say that I’d much rather lose my vision than my hearing. I was working in radio, and there was the big story about the things Rush Limbaugh was going through with his opioid0induced hearing loss.
Obviously, working in radio without being able to hear would be very difficult. But doing just about anything without decent vision is just as tough.
No, I really can’t see what you’re pointing out.
No, I can’t tell the difference between those colors. (And this is more than being lectured on the differences among cream, Ivory, and other shades of white.)
Saturday, we took my mother to the football game between her alma mater, and my wife’s school. Not only did her school not even who up, I couldn’t really see anything that was going on on the field. Getting up and down to our sets with the stadium steps with no handrails was difficult enough, but…..
It was also rather chilly. Normally the cold doesn’t bother me much anymore, unless I’m out in it for a long time.
So, not a particularly enjoyable experience. I think my mom had a good time, though, which is what matters. She and my wife got to experience the sorts of things I deal with being reliant upon public transportation. You can get pretty much where you need to go, but it takes a long time. I guess it took probably about 40 minutes to get from our place to the university; it’s fifteen by car.
At the same time, it probably cost as much in transit fare as it’d have cost to park near the stadium. And no need for a long-distance walk.
I can still walk some, sorta. I’m good for about a block and a half most days.
Trying to get though this is annoying me. I guess I’ll revert to the list from NMSS. It might be easier to say which of those more common symptoms I don’t have.
I really don’t have emotional changes or cognitive changes. The others listed I do have to some extent.
((And a few more paragraphs excised; you know the thing))
The less common symptoms, really, I only deal with a few.
Since I’ve been living up here near to DC, I’ve been seeing the same neurologist who met with me when I cam up five years ago. I was actually try to get set up at another research university there in the city, the one named after a President, but kept getting thrown in to eternal phone system hell, I emailed the doctor who’d seen me.
The treatment I’ve gotten at Georgetown is, without question, the best thing that’s happened to me, ever.
Yesterday, I spent the morning listing to a patient information session.
A few things I can maybe interconnect. One of the bright spots of the pandemic/stupid lockdowns has been the advance in telemedicine.
I can keep getting treated by these people who’ve done so much to help me without necessarily having to truck to DC in the future — a white pill moment, perhaps.
I was getting my Tysabri infusions at Georgetown for a couple of years, but have not my fifth site.
I wish I could get it at home.
But I’ll deal, and I’m happy that there’s somebody who does care about what’s going on with me.
I could probably write for hours on this, but I’m going to go watch football, and enjoy what’s left of my time off today.
