Anybody who found their way to my bike log might have noticed a fairly large gap, like the one I had in 2001-2002. I’ve had a bad flareup and a very slow recovery from another attack of what I now (as of this morning) know is Reiter’s Syndrome. The previous flareup, in 2001, was diagnosed as either Reiter’s or spondylitis. Since then, some new drugs have come out to treat spondylitis, so we were hoping to get at least enough spondylitis apparent so I could try these drugs, since in the 4 years between the 2001 flareup and the 2005 flareup, I never recovered full function in my toes (leading to less volleyball, less biking, and gradually gaining back the 40 pounds I lost in 2000-2001, when I was in the best shape of my life – so much for being in shape preventing disease). After that initial flare settled down to 70-80% function (two courses of steroids), I went on a variety of drugs (mostly Vioxx and Azulfidine, the two of which I took for essentially two years) and got up to 90% function, but couldn’t do any better. I ended up taking myself off the drugs after the long-term effects were becoming apparent – spent a couple of hours in the early morning most nights in the bathroom with severe intestinal pain. After going off the drugs, things didn’t get any worse, so I figured I had reached a new plateau of 90%, which at least I could mostly live with.
Then the 2005 flare hit. Really really bad. Much worse than 2001. Had to do a business trip with what felt like a broken ankle. Two courses of steroids again; the second course barely worked; I was nearly certain I was going to go for the world record of three. Knocked it back to the toes again, apparently, although I don’t have much flexibility in my ankle and knee, so it may still be there too. So I come back a couple months later to the rheumatologist and at the first meeting with the doctor I hear about the new biologics that can treat spondylitis; I go in for a (very expensive) bone scan; and this morning get the results. No spondylitis. Just Reiter’s. And the bone scan shows that it’s still affecting my knee and ankle too – so I’m still much worse off than I was in 2001 at this point.
When these flares hit, I can’t even walk, much less bike. Right knee and right ankle become inflamed and red. This last time I spent two weeks on crutches with a HUGE THROBBING ANKLE!!!1, and spent a few nights unable to sleep until I got me some Vicodin. Sleep was even harder during the first flare, since my elbow was also hit – I had to sleep with my arm over my head in one particular position.
No dice. No new drugs; no new research; chance of recovering full function is zero. Oh, and, if I want to lessen the chance of more degenerative arthritis as I get older, my best course of action is to give up alcohol, red meat, refined sugars, and one other thing I forget now but probably was equally difficult to imagine living without.
I’m currently at about 70% (ironically I biked to the doctors’ office in order to test out the new bike trailer with a load – got some soda on the way back to simulate the weight of my son), meaning I can play a little bit of volleyball very badly, and I can go on very short bike rides. Oh, and keep getting fatter, until I give up what joy remains in life and go vegetarian. Well, I DID have something delicious on Saturday that turned out to be cauliflower…
Excuse me while I go punch a clown. And then I need to drown my sorrows in a bacon margarita. With sugar on top.