Daily Blague

With me, it is not just a lack of interest in sports. It's games of any kind. I can't even look at the Times crossword puzzle anymore, and the idea of committing several hours to deciphering the Acrostic - do they still run Acrostics? - now strikes me as obscene, although it was once a favored pastime. Nowadays, I have too much to read, but even if I didn't, the fun of games has evaporated. I've lost the sense of play as a "healthy outlet." I'm not producing anything that needs outlets.

The other day, during a Remicade infusion, I asked one of the nurses just what was wrong with me. What's the Remicade actually treating? And the answer seems to be - arthritis. Now, when I think of arthritis, I think of swollen, pained joints. I don't suffer from that. Without the Remicade (as I learned last year, when I had to go without it for an extra month), I feel just plain lousy all the time. I have barely enough energy to get through a very minimal schedule. Dressing and rudimentary housekeeping are the limit of my capacity. I can read and write, but everything else is a burden, and eventually that burden seeps into the reading and writing. Whatever's wrong with me, though, I'd never think to call it "arthritis."

I started taking Remicade because I'm afflicted with ankylosing spondylitis, a degenerative joint disease that has ossified all the discs in my spine, and inflammatory bowel disease. These autoimmune disorders travel together in a nameless syndrome that every now and then I hear called "male lupus." The spondylitis seems to have done its damage, however, and the bowel problems did not recur in the absence of Remicade. Perhaps they would have done, if I'd stayed off it longer, but I felt lousy right away, and that's what I was wondering about: what's the medical term for "lousy"? Evidently, I ought to understand arthritis better than I do.

I no longer remember just when Celebrex stopped working for me, but it was at least two years before I began receiving the Remicade infusions. During that time, I curled up inside myself and did very little outside the apartment. The way I spent last Friday would have been inconceivable as well as impossible. Out of the house at 8:15 and on my feet for over four hours in the afternoon - with a two hour hike in Prospect Park at the end - I didn't get home until 8:45. I'm still feeling a slightly glowing buzz from the exertion.