Fourteen in NoJoMo 2016

  • Nov. 14, 2016, 7:18 p.m.
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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.

The less common symptoms, really, I only deal with a few.

–cut–

So, the appointment went okay.  I have a prompt for a couple of days in the future to write about it more thoroughly.

At this point, since I’m on the Tysabri, I should stick on that until it quits working, or I test positive for JC Virus.

Who knows.

Initial impression:  They’ve got their stuff together, and I think I’d be happy to be treated there if/when we move up.  It’s probably an older facility, but they’re doing some of the newer interesting research work.  That matters to me.

Much as I appreciate EVMS, MS isn’t a big focus.  If I had diabuatteus /Wilford_Brimley_voice, I’d be interesting.

As I said, I will see what happens.

We are sticking with the same insurance arrangement as this year  Yes, it’s going to cost something like $120/mo. more.  Yes, it’s all after-tax.  But I’m in a strange employment situation, and this is what I have to deal with courtesy the Patient Protection and Affordable Care Act.

That’s probably going to go away with the minor change in government, but I’m sure it’s going to take awhile.

I could probably write more, but I’m tired. My current debate is whether I try to make it in to the office tomorrow. Or work from home. I don’t know.


unimportant November 17, 2016

When I was in elementary school, we did an annual read-a-thon for MS. I remember being told about MS back then and thinking it was awful. There have probably been huge advances in treatment since then, but it still looks awful, and I'm sorry you have to suffer with this.

^H unimportant ⋅ November 17, 2016

Honestly, this stuff I've been on since last fall actually makes me feel halfway human again. Yes, it's relatively new. The experimental treatments offer promise of a real "cure." But even the most-effective treatment has success rates that would never gain regulatory approval if they were treating heartburn. (The one I discussed with the neuro up at Georgetown has about a 70% success rate.)

It's unspeakably awful. Maybe I would have been in better shape if they'd caught it earlier. Who knows?

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