Because, as I tweeted, maybe self-dissection is what I'm going to have to resort to, and maybe if I died from vulvodynia-inspired wounds the medical community would give a shit.
I mean, die for awareness? Okay, fine. Vvd makes me want to shoot myself in the head anyway, if only 'cause that way I WIN.
I went to the orchestra on a moderate flare. I was hardly able to walk away. I seriously felt like I was going to piss myself. It felt like I was walking with a spike shoved up alongside my urethra.
We went to a bar. See, the Cavs were playing, and I couldn't quit on Lebron even in massive pain. Would Lebron quit? No. It took way too long to get food -- I thought eating would make the pain better. But it didn't. Ridiculous, ridiculous pinching and burning like I can't even describe. Still not the worst pain ever. No unstoppable bawling.
My friends were awesome as usual, talked about it, kept asking me questions as if this is somehow a palatable subject -- and to them it is, somehow. Understood when I was eager to leave.
Now I'm on the pot for that lovely lady exposure chugging water mixed with a little bit of apple-cider vinegar -- been trying it lately, think it helps my flares. Which makes no sense because baking soda seems to help my flares too, and they are OPPOSITES.
I want to die.
Okay, shut up. I want to never eat pecans again. #1. #2, I WANT A DOCTOR TO CARE. I WANT THE SCIENTIFIC METHOD TO BE APPLIED TO MY BODY BY SOMEONE OTHER THAN ME. WHY DOES MEDICINE THINK IT'S ABOVE SCIENCE. WHY DOES MEDICINE FEEL IT'S OKAY TO IGNORE EVIDENCE.
I have an appointment with a naturopath two weeks from Monday. I've also been wondering if it's time to return to the urologist. At least with interstitial cystitis, diet change is a KNOWN and ACCEPTED treatment. And maybe they can, like, swap out my urethra too.
And I've got an appointment on Monday for the hemorrhoids. At the university health center. That is going to be SEXAY.
I don't have any digestive issues, but even *I* can't handle pecans. You ate pecans? I think I'm allergic to them or something cuz I can eat any other nut but when I eat pecans I get pretty sick...
ReplyDeleteI wouldn't recommend dying for the sole sake of V awareness. Do you not recall the case of Yvonne Wallis, who committed suicide after developing vulvodynia in her 40s? I refer you to page 114 of the Vulvodynia Survival Guide. Her son even wrote a book but of course even *I* can't find it.
Well of course that was all the way back in the 90s or so but that did not seem to generate much attention.
I think it's noteworthy here that you are explicitly stating that you would like to see medical science applied to your body, specifically. I have a real problem when I hear experts going,
"It is wrong to medicalize women's sexuality."Welp. You know... It doesn't have to be that way. Maybe addressing this one or few parts would actually you know, help improve the overall quality of life. I'm really concerned that this backlash against medicine is in and of itself going to make it harder to find treatments for problems other than low libido.
LOL, in all ways, you crack me up, K. Thanks for the astute insights and many laughs.
ReplyDeleteI don't have the Vulvodynia Survival Guide. Would my local library have it? HA. HA. HA.
I think it's punishment for living in Ohio (the lack of good medical care, that is). I couldn't find anyone to do SHIT for me when I lived there. As soon as I moved to New England I found a vulvar pain clinic and an awesome rheumatologist. Then when I moved to the West Coast I found a great pain doctor in San Francisco. Now I'm just poor and uninsured and can't do anything about it. Maybe you should move? ;)
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