July 2007

…that I’ve been on the placebo.

I’m not the only one who’s noticing a change in me over the last month or so. It’s been very gradual, but I can tell that it’s not just the heat that’s making me so tired and making my hands get weaker by the end of the gig. Something has been sneaking up on me and making things worse… and my best guess is that it’s a new relapse.

Now if I could only get ahold of the folks from Alpine – we’ve been playing email and phone tag for a few days. I’m sure they’re not ignoring me – lots going on, and a few messages back and forth were garbled – but it’s definitely time to have someone give me the once-over and see what’s up.

If things go the way I hope, they’ll put me on Rebif at no cost to me. Good thing, too – the CRAB drugs can cost as much as a mortgage and then some (sometimes upwards of $1500-2000/mo). Sounds weird hoping that they’ll put me on a drug I have to inject 3 times a week and that may make me feel nauseous, but so far what I HAVE been doing just ain’t working.

I’m resting for the night (even though I have about 5 calls to make, and I ought to get right to them), so hopefully I’ll be okay for the next two days (studio work – hooray!). We’ll see.

There’s a half full glass of beer on the floor about 3 feet away. I don’t even know if I have the energy to get up and grab it. Every time I reach out to grab things, some of my muscles seem to work in reverse – it’s as if part of me doesn’t want to make the motion I’m trying to do.

And this is BEER we’re talking about – not a glass of water, or even a wad of cash, but BEER.

That’s how bad things are getting. So it’s time.

Well, so much for my pledge to keep up to date on this thing… Oh, well.

Suffice it to say that I’ll get to this stuff when I’m darned good and ready, okay? Hey, it works for most people I know…

So here I am doing the same thing I’ve been doing, pretty much. Not really a whole lot in the way of changes, save for the following:

I think I’m getting worse. It’s really hard to tell, though – I don’t have the same ‘sudden onset’ of symptoms that many of my friends with MS describe. As a matter of fact, it’s so gradual that usually I’m not the first one to notice that something is wrong. But upon reflection, I can tell that my fingers are not the same as they once were – they get tired and weak towards the end of gigs sometimes (usually when it’s been very hot that day), and that in itself causes problems. I used to have good walking days and bad walking days; now I pretty much only have bad walking days. Things feel better at the end of the day for some reason, but even that is here and there at best. So it’s time to call the research center and schedule a visit to see if I ought to be put on Rebif (and hopefully they’ll decide to pay for it!). Ugh. The idea of injecting myself is not terribly palatable…

Still teaching away; still gigging away; still recording away. That part is all very good. Finally got my WishBass delivered – a custom 6 string archtop hollowbody fretless. A bass only a mother could love – it’s pretty incredible! It’s a bit of an unfinished project in its current state, but at least the hard part is done.

Currently driving the car I bought back from my ex instead of my van. Better gas mileage, less issues with parking and A/C and whatnot, safer to leave things in the trunk. It also leads into a terrific joke:

FRIEND: Hey, is that a new car?

ME: No, it’s the car I got for my wife.

FRIEND: (looks over car) Looks like you got the better end of the deal!

(K, I know you’ll read this sooner or later – it’s a bleedin’ joke, fer cryin’ out loud…)

Looks like I get to go and visit my brother and his wife at the end of September. Gonna be me, my mom, my sister, and my niece. Never been to North Carolina, but I’ll bet it’s beautiful in the early fall. I hope the cops at DIA don’t give me a speeding ticket on my scooter!

Enjoying my new condo quite a bit. Especially like the ‘no stairs’ aspect of it. Slowly getting it tricked out to accomodate my physical issues – booster ring in the bathroom, handlebars in the shower, ramp for the scooter (graciously donated by a friend of the MS society – it’s totally retro, but it goes QUICK!). I guess as long as I don’t need handlebars for the toilet I can count myself ahead of the game; it’d be cool to have some from a motorcycle though – I could even make the engine sounds as I’m… ah, well, nevermind.

So, like I said, not much new going on. But there’s your update. Now I can rid myself of one of the many things perpetuating my guilty conscience… if only for a few days…