pain in the…face: part 1

I suffered a shingles attack (herpes zoster) in October-November 2007. It left me disabled and scarred, and postherpetic neuralgia still plagues me each and every day.

You know it’s bad when your doctor, a veteran with over 30 years’ experience, states, “This is the worst case of herpes zoster I’ve ever seen.” Yeah, not the second or third worst. Not just your garden variety stuff: The worst. Should I be proud?

The pain is everything you’ve ever heard it is. At one point I called on God or Satan to end my pain. I screamed out a challenge: “I will follow whichever one of you ends this pain!” (Thank God I live by myself!) Neither showed up. Neither sent a representative. I suspect the goat sacrifice wasn’t adequate. Perhaps they were going for a human sacrifice.

After two, three weeks of hospitalization, first to contain the herpes zoster, which affected the right side of my head, down to my shoulder, then to bring me back from an inability to make my mouth and tongue work properly to get nutrition into my body, additional effects popped up. I’d dropped over 30 pounds, for example. When I mentioned that to a nurse, she got a look of envy on her face. “No, you don’t want to lose it this way!” I told her.

I often come down with disease so rare my doctors pull in every specialist and intern they can “to witness this unusual case “. Wegener’s granulomatosis is rare enough I’ve only met one other person with it, and she and her husband came from hundreds of miles away. My pulmonologist noted he had two other patients with it, one of whom died. (“Not from WG,” he said, clearly reading the fear on my face when he mentioned it, off-hand…!)

But this isn’t about WG, this time. It’s about herpes zoster and pain. Herpes zoster and novel effects it can cause, rare moments that bring out specialists and interns alike “to witness this unusual case.” The teeth on the right side of my mandible started loosening and falling out! That part of my jaw, simply, died. Dead because the vascular system died, and the tissue supported by it – teeth, jaw – died, too.

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