It's Back: A Lament

August 8, 2008

I knew I’d been not quite myself, and that I’d been fighting off some low-grade blahs over the past few weeks. Our anniversary trip to Walla Walla wasn’t as wonderful as it could have been, for example, because I was tired and crampy and uninterested in wine tasting for the most part–a travesty*.

But over the past couple of days it started getting harder to ignore. I realized that I didn’t have the energy to blog or do anything useful, and hadn’t for some time. By the night before last–our true anniversary, and after a very pleasing meal at Sel Gris–I felt awful. I rolled around in bed yesterday getting a little bit of work and a lot of moaning accomplished.

My visit to my doctor today confirmed what I already quietly knew. My Crohn’s has flared up, my “spot” in my tubes (near where my surgery was) is back (“I can feel the mass again”, he said), and things are inflamed and unhappy. I feel kind of like you might feel when you’re sick: shaky, weak, tired and bleh. But, additionally, things in my middle parts burn and seize.

My doctor seemed very sad. “This disease is not fair,” he said today.

Some things of note:

  • I have to go back on prednisone. The implication is that my departure from the drug brought this on. There is some discussion at looking at the biologic drug Remikade, but my doctor is concerned about the potential side effect of lymphoma (yikes). Then again, lymphoma is a possible side effect of the drug I’m on now (6MP). I have swollen glands right now but my doctor says they’re “not pathological” which I take to mean that either they’re OK or their lying problem is under at least some sort of control.
  • My back hurts and has for a few weeks. Not Death Pain or anything, but burning and noticeable. Apparently, this rheumatoid-esque sacral-ileitis is strongly linked to Crohn’s. We can add that to the list.
  • The timing of this is dreadful. I have friends visiting from the UK and staying in my house, and I’m hosting a large house party tomorrow.
  • At least he was kind enough to prescribe opiates for the worst of the pain.

July was a very intense month for me. Wonderful, mostly. Work was very challenging but also joyful. My postings on this blog and elsewhere were broadly read and experienced (I got literally a hundredfold increase in traffic). And the New York Times thing added more folks to the party. There was contention, which always happens with broad exposure. Though most reaction to various things was positive, some people on the Internet said some fairly aggressive negative things about me. I wholeheartedly support their First Amendment privilege, even if their comments were caustic. I’m just glad all of this happened last month, because now I feel a bit thinner of skin. What I need now is a bit of quiet and gentleness. Family and friends and kind words. A few escapist novels, a glass of wine and a good nap.

* Don’t misunderstand me, it was still a great trip. When I have more energy and time I’ll post some photos and talk about it.

One Comment

  1. Aaron B. Hockley says:

    It’s interesting how all sorts of events often come together at the same time, creating busyness, whether desired or not. Yay for your dictionary and Comcast fame. Healthwise, I’m not really a praying person, so I’ll just send random “get well” thoughts in your direction.

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