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I’m Alive

Posted Jul 07 2008 7:13pm

It’s been a rough few weeks on my avenue in Chronic Town, and it’s been difficult for me to find the energy to write.

If I could make the healthy world understand only one attribute of living with a chronic illness, I would choose fatigue. Yesterday, I napped for seven hours (yes, that’s 7), woke up long enough to take my evening medications and slept for another eight. And today, I’m exhausted. I slept through a Remicade infusion, fell asleep in the lab at the hospital waiting to get my blood drawn, fell asleep listening to a book on tape. This level of fatigue—this gnawing, persistent, cry from my bones to go to bed and sleep—can last for weeks.  I’m hoping this latest bout of deathly tiredness only persists for a few days.

Partly I’m to blame for the exhaustion. I pushed myself hard to put together a book proposal. I had to work the equivalent of eight-hour days for about two weeks. Sadly, this crushed me, though I am glad to have the proposal done and proud to have been able to produce a 40-page document I can send to agents or editors. I’d really like to turn the meat of this blog into a book, and I needed the proposal to do so.

We had a couple of visitors, and even though I have given up cleaning, cooking, and fussing for guests, it still requires more energy than usual just to be upright for a greater percentage of the day than I usually am.

The real reason for this latest bout of exhaustion, though, is that somehow my sarcoidosis has become active again. How I can have a documented flare whilst receiving the maximum dose of Remicade along with a hefty dose of prednisone is making me a genuine scientific curiosity. I’ve avoided having sarcoidosis involvement in my lungs until now. My once perfect pulmonary function tests aren’t so perfect anymore. I huff and puff walking around the house. My liver tests are a mess, my heart is skittering again, and the large granulomatous lesion on my foot bone is back. I continue to have the headaches and vertigo caused by the neurosarcoidosis. Consequently, my last few days have involved very little besides limping, huffing and puffing, listening to my heart skitter, tilting with vertigo, seeing doctors, and sleeping.

I shouldn’t forget worrying. I spend plenty of time doing that. The White Coat Brigade wants to add a third drug to my immune-suppression mix. It’s called Imuran, and I think it is mostly used to treat organ transplant patients. But it does tamp down another part of my immune system, which is believed to be the source of my disease. I have the prescription, but I haven’t filled it yet. Jay did a preliminary Internet search on Imuran, and one of the potential side effects is cancer, especially when it is mixed with the anti-TNF agents like Remicade I’m taking.

Cancer is a scary word. But, then, so is the thought of sarcoidosis running rampant and a potential lifetime of sleeping eighteen hours day. I’ll do some mental weighing, putter around on the Internet to see what I can learn, and probably end up taking the drug—at least for a few weeks. But, now, I’ve got to go back to bed. I’m so tired.

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