Heart, Meet Sleeve (Part II)

Wednesday, November 14, 2007 | comments (3)
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.

link to this | comments (3) | File: 

« Heart, Meet Sleeve
Heart, Meet Sleeve (Part III) »




Comments

dude. do you not understand what country you live in? ...I need conclusion. NOW.

Posted by James on Nov 14, 2007 at 4:07:06 PM
me too.....at least drawing it out makes me feel like it's kinda ok.

Posted by j on Nov 14, 2007 at 5:39:06 PM
im a terrible patient...i whine and cry and think im dying and beg for drugs..... and im worse at exhibiting patience..
but my fingers are crossed over here...
xoxo

Posted by suicid_blond on Nov 15, 2007 at 11:24:28 AM
Comments: Rss Icon




Yes 
No

  

Related Posts

In Heart . . .

11.15.2007
It's pretty much universally accepted that knowledge is power. But I'm here to tell you that's not always true. Knowledge can also leave you a quivering mass of gelatin, on the hardwood of your dining room.

11.13.2007
But the real question I was asking myself, right, was how did I end up being this person having a cardiac stress test?


In Health . . .

03.21.2008
And so I responded as any self-respecting person would: by drinking too much and watching a great movie--twice--before passing out on the floor of our basement. Escapism through film and unconsciousness through alcohol are great American pastimes. And Tuesday I was a Patriot.

02.19.2008
There's a new physical "feature" on my body. And I've been noticing it lately whenever I happen to be completely naked and looking down at myself or in a full-length mirror.

11.15.2007
It's pretty much universally accepted that knowledge is power. But I'm here to tell you that's not always true. Knowledge can also leave you a quivering mass of gelatin, on the hardwood of your dining room.

11.13.2007
But the real question I was asking myself, right, was how did I end up being this person having a cardiac stress test?

05.18.2007
Okay, call me over-reactionary, but I'm throwing away my Centrum as I write this.

01.23.2007
You might hear me make some unpleasant gurgling sounds. You might think I'm choking. But don't let that stop you. Please.

11.07.2006
The data is a little out of date, but it looks like if you're from LA, you might start investing in a new lung now . . .

10.12.2006
So . . . how about them Broncos Monday night! It was so great to watch them play at home at Invesco field in that cold rain. Football always seems to be more fun to watch when it's played in the cold . . . or the rain. And it's even better in the snow.

10.11.2006
Dr. Smith nodded and scribbled something on the back of a piece of paper that was in my file. He held the pen like you might hold a paint brush and made a sort of circular drawing on the page. Then he looked back up at me expectantly.

10.05.2006
The man didn't reply. He walked over to a counter and came back with something in his hand. I began flipping through a mental rolodex of what he might be about to give me. Some kind of injection? A pill . . .


In AS . . .

11.10.2008
One way to relax after a Sunday afternoon herding leaves is to have a couple of beers and sit on the couch with your hand under your belt and watch some football and feel good and fine and strong--and downright brawny, damnit, like the guy on the paper towel rolls--for having worked hard and for having cuts on your hands and dirt under your nails and an easy sort of pain in your muscles.

03.21.2008
And so I responded as any self-respecting person would: by drinking too much and watching a great movie--twice--before passing out on the floor of our basement. Escapism through film and unconsciousness through alcohol are great American pastimes. And Tuesday I was a Patriot.

11.15.2007
It's pretty much universally accepted that knowledge is power. But I'm here to tell you that's not always true. Knowledge can also leave you a quivering mass of gelatin, on the hardwood of your dining room.

11.13.2007
But the real question I was asking myself, right, was how did I end up being this person having a cardiac stress test?

01.23.2007
You might hear me make some unpleasant gurgling sounds. You might think I'm choking. But don't let that stop you. Please.