I’ll be back around May 1st (ish)
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.
Tags: eds, Ehlers-Danlos, Ehlers-Danlos Syndrome, Nashville
Jeannine Hall Gailey responds:
Posted: April 14th, 2008 at 11:25 am →
Dear Jilly, I’m really glad you blogged about this - I too have a bunch of weird mutations (bleeding disorder, single kidney, connective tissue problems, etc) so it’s so encouraging for me to hear about someone going through something similar. I hope you feel better soon - these things can be mysterious the way they come and go - and that you take good care of yourself. FYI I went from being the breadwinner in my fam to being not so much the breadwinner (I still freelance write and do occasional projects) after some really traumatic stuff with the bleeding disorder and my husband really helped out with the working and taking on a lot of the housework, cleaning, etc I wasn’t able to do anymore. It’s been a weird switch but things just worked out (ie he got a great job with great health insurance right when I had to quit mine.) Soo, anyway, this is just to say I will be thinking good thoughts for you and I really do want to hear what you’re going through. Many hugs, Jeannine
Greg responds:
Posted: April 14th, 2008 at 6:54 pm →
I, too, am glad you wrote about this. You have a lot of guts to face this with determination and some humor. I look forward to having poetry news again, but only when you feel up to it. Take care of yourself!
Christopher Mattix responds:
Posted: April 14th, 2008 at 7:11 pm →
I hope you get better also. It sure stinks when you are down.
I am new to this side of the internet (the poetry department, that is), trying to build some new friendships.
I recently (just last week) started my own poetry and photography blog with all original content. Maybe you, or any of your readers would be interested in stopping by “Play Jazzman!” at playjazzman.blogspot.com.
I love the picture of the bird on the left side of your blog, it is a great way to make a white page nice and clean.
Christopher Mattix
Lyle Daggett responds:
Posted: April 14th, 2008 at 10:33 pm →
Hoping all goes well for you, Jilly.
Looking forward to whatever you’re able to post here, when you’re able to. Be well.
Helen Losse responds:
Posted: April 14th, 2008 at 11:23 pm →
Hi Jilly, I’m glad you blogged about this, too. I’m sorry, of course, that it’s happening. You’ll be in my prayers. Helen Losse
Marie Gauthier responds:
Posted: April 15th, 2008 at 9:34 am →
Hi Jilly–
Write what you need to write, don’t apologize! This is your space, after all, the last place you should censor yourself! I’m so sorry to hear of your illness, but so glad you got a correct & relatively speedy diagnosis. I hope this also means a return to health or a measure of relief from your pain. Good luck!
all best,
Marie
January O'Neil responds:
Posted: April 15th, 2008 at 9:54 am →
Jilly, take care of yourself. Hope you’ll come back soon.
Jessie Carty responds:
Posted: April 15th, 2008 at 10:51 am →
Glad to hear you have a diagnose (I have a family member with fibromyalgia and that took them FOREVER to diagnose and it is way more common) but so sorry you have to go through that!
See you back in poetry land soon!
Michael A. Wells responds:
Posted: April 15th, 2008 at 11:24 am →
Jilly:
Keeping you in my thoughts and prayres!
Do let us hear from you from time to time… don’t keep your friends and fans in suspense.
Anne responds:
Posted: April 15th, 2008 at 10:18 pm →
Jilly - like everyone else, my thoughts are with you! An actual diagnosis is half the battle sometimes… sounds like you’ve got good care, which is good because if they don’t take good care of you they’ll have a herd of angry poets on their doorstep with crowbars in hand.
Check back in when you can, and I hope you feel much better soon.
Ivy responds:
Posted: April 16th, 2008 at 4:02 am →
Oh, Jilly! Thinking of you. x
Greg Rappleye responds:
Posted: April 16th, 2008 at 6:13 am →
Oh, no!
I’ll be praying for you.
All the best,
Greg Rappleye
Russell Ragsdale responds:
Posted: April 16th, 2008 at 7:58 am →
So sorry to hear about your EDS and I hope the diagnosis and subsequent treatment will mean you will be in far less physical and emotional discomfort. I just wanted to tell you that I think you are an awesome lady and I am hoping the best for you!
Collin Kelley responds:
Posted: April 16th, 2008 at 10:41 am →
Thinking of you, Jilly.
Jilly Dybka responds:
Posted: April 18th, 2008 at 12:10 pm →
Thanks everyone. Not brave. Scaredy cat, LOL.