It will never go away

October 05, 2006 | Category: Family, It's a Trip

When I was first diagnosed with Lupus, I was relieved.

I'd never heard of it before. I was just so freaking glad to finally know the boogyman. After months of knowing I was not crazy, just sick. I had begun to feel... crazy.

After each battery of exams, we would learn - it was not this, it was not that.

I had just started a new career, and spent over 6 months on a derailment. Living on my savings and the generosity of my family as it took about 3 months after my diagnosis to get me well. And to realize - oh, man, this is actually kinda a serious thing.

How obnoxious I became. They told me that infections and illnesses that are fine for people without Lupus could prove fatal to me. I started carrying Lysol with me and washing my hands like a fiend. I mean, at one point my hands were so red and chapped from constant washing that they became infected.

It was crazy-making.

It took a year before I had it all under control. I learned what set me off into a Lupus flare. I learned where to relax, and where to remain viligent.

I put down the can of Lysol, and stepped away slowly....

It will never go away. But eventually it becomes normal.

That's where we are with CD, now. In that place where he has been getting better since his most recent flare. But we don't yet feel normal.

He's been late to work twice this week. Sure, it could be a bad alarm clock. Or the effects of a new med. But it could also be the rain or stress triggering his brain to another dark flare. And if it is, how deep will it take him?

Will he be able to work? To take care of himself?

I live on pins and needles. Deep breaths and decaf tea.

I want to be a good partner. But most days I hum with a kind of low-grade fear. I just wish we could fold time to a little bit in the future, where we've learned what normal will be.

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