Boy is this a hot topic! Naturally, since it’s so hard to even get a doctor or doctors to listen to us and recognize our vast collections of symptoms (see last) as a possible systemic condition, we naturally want an easy test to take and be done with this painful journey and have an answer. (Our
I’ll repeat that if you haven’t yet read my About EDS post, please do so now to help make this post more understandable. It is seriously hard to do this topic justice in just one blog post. (Why I’m trying hard to write more off line, smile). Remember the six blind men and the elephant story?
Alice in Wonderland doesn’t hold a candle to me – or anyone else with Ehlers-Danlos Syndome of any kind, I’d say. As long, winding and mind-bending as her journey down her rabbit-hole seemed, the journey of an EDS patient has an unending supply of twists and turns that would make even the Cheshire Cat blush.
Careful what you ask for, you just may get it. I struggled through my youth, young adulthood, and even into middle age to keep up, much less “make it”, and to be heard. When suddenly the Universe handed me an oversized microphone in the form of a visible disability that now makes it hard to
Careful what you ask for, you may get it… The story of my life, literally! Stay tuned to find out why I say this.