More heart later. First there is this: Ankylosing Spondylitis. It's got some good alliteration, doesn't it? To pronounce it just do this: Say "ankle." That one's easy. Now say "closing" without the "C" — "osing." There you go. You've got it.
Ankle-osing. Now, "spondil."
Like music, isn't it? And the icing: "Itis," like Titus, without the "T". Spondil-itis. Put it together now.
Ankylosing Spondylitis. Something with that kind of ring deserves a soundtrack.
It got bad this summer, the
AS. And sometime in late August I learned what it could do, and that what had come before was just a warm-up. Here is some truth, brother: this little fucker has got a sadistic streak. And while that's normally something I can respect under the right set of circumstances, this isn't one of them.
The starch-free diet I tried
back in January, didn't really do the trick. Not much of a difference in the symptoms. And it just led to other problems. Like constipation and bad breath. The former was no fun for me, and the ladder was no fun for . . . well, anybody really. (Let this be a warning to anybody who's thinking of dating somebody who might be on Atkins or South Beach or one of those diets. It makes you breathe fire. The bad kind of fire. Believe.) So I went back to carbs. I'm still cutting out the wheat and gluten, but that's a different story.
Sometime around our trip to Japan, inflammation became a daily thing. There stopped being good days and bad days. It was just all bad all the time. And on that trip, I
invented a new hunched over waddling kind of gait, which I believe all the Japanese school girls are doing now. Because they're always on the cutting edge, you know. Of everything.
Then there were moves and home improvement projects. And a never-ending supply of shiny little anti-inflammatory meds. Like little white and yellow candies. And just as devoid of value: increasingly, that stuff did absolutely nothing for me.
I saw my rheumatologist in June. And by the way, this guy is great. Truly. Honestly. Great. C and I love him, and if you ever have the need to see a rheumatologist in the DC area — and I hope you don't — but if you do, I will be more than happy to give you this guy's name. Anyway, saw the Doc in June and told him things were not good. He gave me a soft pitch on
Enbrel. (One of the things we like about this Doc, is he doesn't really force you in any one direction, which isn't to say he doesn't express his opinion. He's also incredibly patient and informative and he returns your phone calls personally!) Anyway, he said that while it didn't work for everybody, Enbrel would most likely drastically cut my symptoms. And he emphasized that we really needed to get the inflammation under control or it would lead to other problems, like heart or lung issues. Crap. This is an easy one, right? Take the Enbrel. But there was a downside. Two of them. First, Enbrel is a drug you have to inject and, I'm not a fan of sticking myself with a needle. I mean, I already make an exception for the heroin and, you know, I'm kind of running out of good locations to put the stuff. I know,
problems, problems, right? Second, Enbrel works by blocking a natural substance produced by the immune system called TNF (Tumor Necrosis Factor). As I understand it, the body uses this stuff to fight infections and — what else was it again . . . oh yeah . . .
cancer cells. Shit. The options were: more pain and increasing lack of mobility with a body chock-full of stuff that'll fight nasty viruses and cancers for me. Or a more normal daily existence where I can move around without wincing, but suppressing my body's Superman-like production of TNF, thereby increasing my risk for certain types of cancer. Of course, Doc maintained that cases of lymphoma being reported were "very, very rare" and he'd never actually known of one himself, personally. And I believed him. But somehow, when it's applied to me, I tend to read words like "rare" as "highly probable." And "never" as . . . well, just don't say that word . . . ever.
So I wasn't ready to do the Enbrel yet. But then August came and brought with it this big mobster of a flare-up. He was mean, too. He came complete with crushing fatigue and chest pains. And there was a healthy dose of sciatica that began radiating in the right leg, causing my calf to sort of stop working, and giving me a nice limp, which of course I just played off to the girls with a "there's nothin' wrong with my leg, I'm just B-boy limpin'" kind of nonchalance. If you believe nothing else, believe this: Beastie Boys is more than music; it's a way of life, ya'll.
Shake. Your. Rump-a.
So I went back to the Doc in early September, well ahead of my next scheduled visit: "
Enbrel, Doc. I want it. Now. Can you mainline this stuff?"
While I was there, Doc listened to my heart, as he always did. In the past he had heard things but used words like "benign" when he described them. But this time he really spent a long time listening. Then he said he thought he heard something he called an "insufficiency" and wanted me to go have an
echocardiogram to check it out. My feeling was, yeah whatever. My heart is good, Doc. But okay. For you, I'll have the test.
Part three tomorrow.
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Posted by James on Nov 14, 2007 at 4:07:06 PM
Posted by j on Nov 14, 2007 at 5:39:06 PM
but my fingers are crossed over here...
xoxo
Posted by suicid_blond on Nov 15, 2007 at 11:24:28 AM