Today is my daughter’s 7th birthday. It is also the five year anniversary of my Ehlers Danlos diagnosis. I had the best intentions when I started this blog months ago, after deleting my original blog in a fit of “If I don’t talk about it I don’t have it”. Turns out that doesn’t work so well. I’ve been battling a cascade of symptoms and flare ups between my Ehlers Danlos, Mast Cell Activation Disorder, Postural Orthostatic Tachycardia and Eosonophilic Esophagitis.
In an effort to recap the past few months, it went as follows : EDS “crash” with prolonged difficulty with basic functioning, bed ridden, in and out of the hospital, emergency endoscopy, esophageal stretching, more tests, radiology , trying to fit in long distance appointments with my midnight shift , new meds and the always lovely 25 pound weight gain …..
EDS I swear has a sick sense of humor, the minute I start feeling better, get active again, and seriously start pursuing running, or any activity that might benefit me I get a stress fracture on my right foot (they think) … by walking off the airplane …
No cool story, just literally had my foot collapse under me as I got of the plane after an uneventful 5 hour flight back from Florida (which I felt great down there BTW). So I’ve been in a spaceboot for 3 weeks as 5K events come and go and my new running magazine comes in the mail.
I swear it feels like 2 steps forward and a suplex back, and honestly I want to wave the white flag.
But I can’t
My baby girl was diagnosed with the same Ehlers Danlos (type 3) three months ago. I can’t give up on her which means I can’t give up on myself.
It’s incredibly frustrating and isolating, when you feel like most doctors don’t know what they’re doing and the one’s that do are not giving you any solid promises because of the nature of your disorder.
So in an effort to keep myself from sinking into complete depression, I’m slowly going to post, probably nothing mind blowing, but atleast something to keep me going so the hellbeast of EDS doesn’t take me down.
My crashes have been frequent, the struggle is real and my game face is fading. I’m not well, but I’m not giving up.
May was Ehlers Danlos Syndrome Awareness Month, I made my debut in this video put together by the Ehlers Danlos Society. Catch me at the 3:31 mark