February 10, 2012
i promised myself that my next post was going to be about something other than my own treatment, like cistus tea or alternative (read: non-western) treatments for tick-borne diseases. i’m no stranger to false promises, but even when they’re mine, made to me, i’m not a fan. i feel i can make an exception in this case. that, and if i weren’t writing about this, i probably wouldn’t be writing today. today feels less like a writing day and more like a “peruse through the music collection to conjure up old memories” day. singing along to songs you forgot, the ones you used to memorize how long it took to rewind the cassette back to the beginning so that you could listen to it on repeat, brings a kind of joy and nostalgia that isn’t meant for every day. i revel in it when i can. my basking can resume right after i share my good news.
i’m just finishing the fourth week of my dosing schedule for the new medications that dr. j has prescribed for me. some of the dosages have stayed the same over the course of the past month and others have quadrupled. i’ve been skittering and uncomfortable since i went to d.c. last month. the medication changes have wreaked havoc on my delicate mind. amid the mess of anxieties and racing thoughts, i failed to notice the changes in my body. last night after i got in bed, feeling only somewhat haunted by my looming insomnia, i realized that my pain is so much less severe. it actually feels kinda miraculous. i still have arthritis; my joints still creak and crack. i still have all sorts of weird medical issues and aches and hurts, but the excruciating, constant feeling of my muscles splitting apart or the suspicion that my spine is trying to rip itself free from my back, those are gone. they’re gone!! i knew that we were trying to treat my neuropathic pain but i didn’t really know which pains were nueropathy. i had no clue that this part of my suffering could be relieved.
until last night, i think i was waiting for the bottom to fall out on this reprieve from my shooting, stabbing pain, from my numb limbs and electrically charged fingertips. upon further reflection, i realized that if the treatment is working that means that i do have a raging infection in my brain, fraying my nerves and damaging my nervous system. you’d think i wouldn’t need further proof of this, but when doctors have been telling you for years that your pain is somatic, that your sudden onset of psychological problems (that disappear after a few months without medical treatment) are just manifesting because you are a woman/girl at the age of _________(insert number here), that there is no medical evidence that any symptoms you are reporting fit your existing diagnosis and thus, must not be real, it’s not easy to let go of that pathologization. i would tell my doctors they were wrong only to return home, stare my reflection down in a mirror and ask myself “are you making this all up?” in my gut i knew there was something no one was seeing, something my teams of doctors were missing. our medical system very gradually re-sculpted me. it planted so many seeds of doubt; i was wrong and it was all in my head. the week before i was diagnosed with lupus and a mixed connective tissue disease, i overheard my doctor tell a nurse that i was a hypochondriac. another doctor referenced “hysteria” as a diagnosis once used to name my condition. yeah. seriously. that fucking happened. and i have a bachelor’s degree in women and gender studies. i saw red, charged full force at the doctor, then came home, collapsed into a ball and cried my eyes out (i could cry back then). after more than a decade, it’s hard to maintain, even to yourself, that you have a disease, that you’re not hysterical or crazy, but that you are sick. i have been conditioned to doubt myself.
thank you, dr. j. you are a freaking genius. after all your work with aids patients, it makes complete sense that you would understand how to recognize and treat neuropathic pain. but my brain has trouble making sense of things. the fact that your treatment plan, at least for this piece of the puzzle, is working is beyond remarkable.
here i am, awash in a sea of run-on sentences, holding up the trophy of my first treatment victory. god, i hope i don’t drop it.