Poetry Hut Blog
Ehlers-Danlos Syndrome

hahaha

link (I can’t do that btw, my skin involvement is mild.)

I guess when that program aired, people were p.o.’d at it, so ABC put a transcript of the interview with like one of the only scientists who is studying EDS. I am taking part in the NIH study mentioned - I had blood drawn for it this week. Those interviews are kind of grim. I am doing well in the pool with PT though and am not unoptimistic.

Interview With Dr. Nazli McDonnell, Part 1

Interview With Dr. Nazli McDonnell, Part 2

Anyway, STEP RIGHT UP here is a free chapbook pdf of my sideshow poems. It is for sale for $5.55 for a regular copy.

Hey

I’ll be back around May 1st. Since my Ehlers-Danlos Syndrome diagnosis :/ my body has been somewhat falling apart haha. I don’t know if it is some weird psychosomatic shock, or this is a slide into physical disability or this is a temporary musculoskeletal freakout or ?.

The geneticist offered to refer me to a pain clinic when I was diagnosed but I said nah when she asked, although I have changed my mind haha and am waiting for a referral.

I’m trying an anti-inflammatory diet, exercise, I’m learning reiki, going to the chiropractor, etc. I bet I start PT again too. Mostly I am still, like, WTF? and as the primary breadwinner of the family (i.e. I pay the mortgage, have the job with health insurance, etc.) I am fighting a tendency to play catch with various scenarios in my head, all of which involve wrack and ruin WRACK! AND! RUIN!, hahaha. Plus there is the underlying fear of “am I going to be in this much pain - or worse - for the rest of my life?” And I have a weirdly high pain tolerance. Not that I enjoy pain. (Not that there’s anything wrong with that haha.)

I’m lucky though, from what I have read, a lot of people with EDS go years or decades without a diagnosis (it’s a rare condition) and/or a diagnosis of “it is all in your head.” Evidently, somatoform disorder is the new “hysteria.”

If you are looking for a orthopedic doctor in Nashville, I can recommend Dr. William B. Kurtz at Tennessee Orthopedic Alliance. He’s the smarty pants who noticed the EDS symptoms. The Division of Medical Genetics at Vanderbilt confirmed it, during a very thorough 3+ hour office visit.

Anyway, this is the last time I’ll probably blog about this so much; this whole thing is a drag. I know that readers come here for poetry news. I’m going to blog EDS stuff at Bad Glue — there’s a placeholder there now.

I’ll be back in the beginning of May, I think.