Busted!

I wasn't trying to keep this blog secret, exactly. I mean, it's a blog, fer Chrissake. This is the Internet. How secret can it be?

Yet, in some respects, blogging feels very private. I guess I self-censor more than I would in a private journal, but when I'm writing a blog post I don't really think about anybody reading it. It's very odd, since for so many years in my day job the first thing I had to decide was who I was writing for. Now I guess I'm writing for me, although I don't know why I would want to do that. I put things in this blog that I wouldn't want people who know me to know. But since this is a blog, and this is the Internet, people I don't even know might read it. Somehow, that's OK.

I was a little disconcerted, the other day, to find Scarecrow reading this blog. I never told him about it, though I didn't make any particular attempt to hide it, either. It's not that I didn't want him to read it. There's nothing in it he doesn't already know, nothing I wouldn't want him to know (I went back and checked), and I didn't say anything bad about him (I checked that, too). I just didn't think he'd find anything of interest. I guess I was hoping to spare him having to listen to some of this stuff in person. It's OK. It just feels a little weird. Now, when I'm writing a blog post, I'm aware that someone might read it. Weird.

While I'm vaguely on the subject of family news, Tuffy came home from the gym a few days ago with a hematoma auris, more commonly known as cauliflower ear. Eewk. When she was wrestling in junior high and high school she always wore ear guards, but apparently for mixed martial arts it's not the done thing. So she had it drained, and she has to wear a very awkward pressure bandage around her head for the next nine days in the hope the perichondrium will reestablish a connection with the underlying cartilage. And it hurts.

I have not asked whether she plans to wear ear guards from here on out, because sure enough, if I do, she won't. Her birthday was last month, but they don't stop being teenagers on the day they turn 20.

Out of the Loop

They sprung mom from the hospital yesterday afternoon. As usual, it was my brother who took off work to do the fetching and carrying and running around. He's a great guy, my younger sibling. We're all lucky he lives close enough to help, and that he does it without complaint. It's not like I could be any help if I were there --  I'd be underfoot, more like -- but I'm sure as heck no help from 1200 miles away. In fact I'm just one more chore, because he's got to call me and tell me what's going on. This is not an MS thing. It's an Aging Parents Living Far Away thing. It's a problem for which I wish I  had a solution.

Anyway, she's doing OK. For now.

Since I can't do anything useful, I might as well do something fun. We're off to a UW volleyball game against Stanford. I'm still getting used to this whole spectator sport thing. It seems odd to critique the game played by these tall, slender, athletic people, when I myself could never play volleyball worth a darn. But for Pete's sake, what's up with all the service errors?

Don't Get Around Much Anymore

Scarecrow and I went to the UW volleyball game last Friday night. They beat UCLA, 3-1. We didn't go to the game on Saturday, but they beat USC (yessssss!) 3-2. They had a little more trouble with USC than generally expected, but I guess if the team that was supposed to win always won, they wouldn't have to play the game, would they?

It was nice to get out, for a change. I don't remember how long it's been since I went someplace besides the place Scarecrow works, or a doctor's office. I usually mean to go along when Scarecrow runs errands on the weekend, just for a change of scenery, but when the time rolls around I've either run out of energy, or I'm apprehensive about being able to negotiate heavy traffic in my chair without inflicting fatalities. Or I start thinking about how, if you're sitting down in a crowd, all you see are butts, and most of them aren't really all that attractive.

So it was nice to get out. Kind of overwhelming, in a way. Lots of noise (although I could have chosen something less crazy than a Pac-10 volleyball game), lots of color, lots of stuff to look at. Lots of fun.

There's a home game against Stanford in a couple of weeks. I'm in! I may even get crazy, and go to the grocery store this weekend. Or the library. Or Costco... No. Wait. Scratch that....

MS Story -- Years 17 - whenever

Picking up where I left off:

In spring 2004 my hands were numb, but even two years after the exacerbation that took them out they still seemed to be improving at a rate so gradual I wondered if it wasn't just wishful thinking. So, maybe still getting better. At least, not getting worse.

As we began to get the occasional "sun break" (a weather phenomenon apparently unique to the Pacific Northwest), a friend from work and I started going for a walk at lunch. One otherwise unremarkable day, we were coming back from an otherwise unremarkable walk when my right knee began hyperextending every time I put weight on it. Made for a very awkward gait. I glumphed back to my office. After sitting for a bit, I was OK again.

That was the top of the ski jump. Walking gradually, steadily got harder and harder. At first the problem only cropped up when I tried to walk a significant distance. I started carrying a very cool hiking stick, one with which I had hiked many pre-impairment miles, in case I had trouble getting back where I started. On one memorably humiliating occasion I was crossing a busy intersection near the office with a couple of coworkers when I lost my balance and fell. It took both of them to get my sorry butt out of the street. Can't like it.

At some point along in here, I started having real problems with fatigue. Any physical activity was just such hard work. The harder I tried, the stiffer I got. Life as isometrics.

I tried Betaseron. After every shot, I felt pretty much like crap up to about four hours before it was time for the next shot. And it wasn't making any difference. The neurologist suggested, in the nicest possible way, that it might have been more effective and had fewer side effects if I had started it earlier. Maybe so. At this point, saying I may have brought this on myself may -- or may not -- be true, but it's not particularly helpful.

I tried Novantrone. The side effects weren't too bad, the bright blue urine was kind of cool, but you've got to wonder about a drug the nurse has to wear a hazmat suit in order to administer. And it wasn't making any difference.

I tried Tysabri. No help there, either.

After a while, even standing up became an adventure. I'd be standing there, minding my own business, not doing anything in particular, and suddenly realize "Oh shit. I'm falling again." Scarecrow and Tuffy learned that a sudden loud crash no longer meant the dogs were doing something inadvisable. Now it was at least equally likely they'd need to haul me up off the floor. And repair whatever I broke on my way down.

I went from hiking stick, to forearm crutches, to a manual wheelchair with a power scooter for longer distances.

That worked as long as I could still move my hands and arms. My hands were numb, but I could still use them. Kind of. I was already so clumsy that I really don't remember when the sensory problem also became a mobility problem. Whenever it started, progression was gradual but steady. Two years ago I finally gave in to the physical therapist, who had been trying for years to get me into a power chair. Which is another whole story in itself -- one for another time.

And that's where I'm at. I can't stand or walk, I have very limited use of my arms, not much use of my hands. Fatigue is a problem. I think my cognitive processes are about the same as they ever were, which may not be saying a great deal.

So, OK. That's my MS story. Can I go back to something fun now?

Although I'm not much of a fan of spectator sports, I like Pac-10 volleyball. We might go to the UW game tonight. They're playing UCLA. It should be a good game. I'm a UCLA alum and Tuffy goes to UW, so I don't really care who wins. Or maybe we'll go tomorrow night, when they play USC. I always like to see somebody beat USC. And I'm looking forward to spending some quality time this weekend with a stack of library books. I'm part way through Narrow Dog to Carcassonne by Terry Darlington. Jim the whippet -- the narrow dog in the title -- is clearly Bareit's alter ego.