In the interim, I've changed neuros to a better one, I think, one who I can engage with better and who makes eye contact with me instead of the office wall.
I still don't know for sure what's causing my peripheral neuropathy. The GI end of things has been especially difficult: I haven't had any solid food in a month and I've lost about ten pounds.
My neuro agreed that my BP was "lowish" and prescribed midodrine to take in combination with my usual dose of fludrocortisone. (Plus the usual salt, fluids, compression hose, etc.) He also told me I should see a motility specialist for my stomach.
There are a couple of them floating around the Cleveland Clinic, but I have such terrible experiences there that I'm reluctant to go. We'll see.
For once though, I've been clear-headed enough to conduct myself as well as I can, despite all these crazy health issues.
My sister flew in from Delaware for Labor Day and we lazed around the whole weekend looking at YouTube videos of makeup, then shopping at Ulta for Revlon Lip Butters and nail polishes and other beauty plunder.
We went to go see The Possession* at the movies and LOVED it with a love that we have for all horror movies since our great-aunt had a huge collection of them and showed them to us one by one whenever we came to her house for the holidays.
I did some writing for the first time in a very long time, both non-fiction and poetry. I want to do send some work in this fall for publication, because I don't think I'm well enough for a residency.
I hope that in the future (as in next summer) I can write a chapbook and get that published.
It's amazing what a little bit more energy can do for me. Enough to write this, water my plants, strip and re-make my bed, wash my hair.
The week after next is my birthday and I'm feeling circumspect. My wishlist is all feather beds, pillows, pajamas, things to make me more comfortable! And I thought, "well, what about what you want, what you like?" But it was hard to find things I wanted and liked that didn't intersect with need.
I want frivolity in my life, but it seems there's no room. I need new clothes. I've lost so much weight, even my underwear don't fit me properly.
"Are you a size 0?" my sister asked me accusingly.
"No!" I said quickly. "I don't want to be a size 0," then sulkily, "Only at places like Anthropologie". I feel greatly removed from my own body. I was fussing with my hair in the bathroom and caught a glimpse of my bare torso in the mirror. Every breath I took, my ribcage and every visible rib expanded, then fell, expanded, then fell. I watched myself like I was some alien being.
Do I need to acknowledge this sack of antlers as my body? Or can I just sort of take a breather and wait until all this mess is done and at least 15 pounds have returned? I think the lesson I'm slowly learning is that this mess isn't ending. This mess is my life and I have to live it, good, bad and ugly.
*Based on a true story, y'all!