Friday, August 30, 2013

Skenitis update #3

Looks like I haven't updated in a month. Well, I have nothing to report! Still on doxycycline, valium suppositories, and lidocaine... pain seems the same.

I had a real period twice in three weeks after my body finally recovered from the steroid shots, and I didn't use the valium or the lidocaine very often then. Because my period thought it was the end of times. It had to consume as many tampons as possible before the world ended.

I've been period-free for two weeks or so, and now that I'm back on the valium and the lidocaine, I can totally see that they help. If it wasn't clear before, it is now. The lidocaine I got from the compounding pharmacy doesn't burn -- though applying it and moving everything around down there does make my cooch burn for a while. And I think the valium helps too, though that is more subtle. It's similar to applying ice, except I can walk around without holding a bag of frozen corn between my legs.  I can feel the pain, but it's quieter.

I have a little less than a month left on the antibiotics. I'm not holding out hope that they'll kick in and cure my pain. The doc said he has a 30-40% success rate treating skenitis with antibiotics, so you know. I'm operating at 30-40% of my maximum hope level.

But that's okay. I know this doc has more ideas to come -- and after he retires, the next doc will have ideas -- generations and generations of doctors! I think I'm in good hands.

My main concern is whether vulvodynia will be with me forever. I try not to collapse under my fears about what my life might be if I'm never pain-free again. Mostly I worry about getting anywhere in life, doing what I want, meeting goals, SETTING goals... I feel like vulvodynia and mental illness have marooned me on an island and everyone else is sailing by on their beautiful boats. People say you can't compare yourself to's true. But when you feel like you have so little, it's hard to remember what you actually want. All you see is things you don't have.

The longer my pain sticks around, the more I question everything. I've seen myself die a hundred times over the past seven years, shedding, shedding, leaving behind, giving in. And each time I've thought, "I've got it now. I figured it all out." But I never have. There's always further to dig. All the answers fall apart. My questions change. The universe bends around me, flips inside out, becomes a new animal. I've always believed the saying that the more you know, the more you realize you don't know. Now I'm seeing that body of knowledge as infinite. I can swim forever, but I'll never get off the shore.

I used to believe in math like math was God. Now I think math might not exist. It's a trick. A wink. The universe is a single point. The universe used to love me. Now it does when I look at lily pads or listen to cicadas, but the rest of the time it is the work of a prankster.

This probably isn't making sense anymore. But I bet some people know what I'm talking about. The women I correspond with, sometimes we pull words right out of each other's mouths. Maybe they'll understand my universe-as-prankster concern.