May is Ehlers-Danlos awareness month! My journey to my diagnosis has been anything but easy. I am blessed to say that I don't experience the severe everyday common joint dislocations that the majority of people do. My dislocations are invisible (like my disease). Over the last year I've been collecting diagnoses like candy that confirm my EDS dx. I am dealing with constant subluxations (partial dislocations), tmj with severe jaw deviation/dislocation, craniocervical instability (my occipital bone is completely detaching), tethered cord (my spinal cord it attaching to my spine but hopefully a hard collar is all that is needed to correct it), EDS again, mast cell activation syndrome (mcas) which causes severe & worsening reactions when exposed to triggers, mastocytosis enterocolitis (is inflammatory & only effects the gut), POTS, & much more! All of these conditions are way more than any one person should have to handle but clearly I was given the strength of 1000 men to continue on this fight!
In 2 weeks I will be planning on going to Charleston to get my tethered cord surgery done in hopes that it makes some of my daily routine a little easier. But I am a severe risk for surgery so my family is worried. I believe I will have to start going out of state to get the best care for me.
I carry on this fight for everyone out there & to help bring knowledge to a growing medical field. They refer to an EDSer as zebras because in medical school they are taught when you here hoofbeats think horses not zebra & with eds they have to think out of the box, a zebra. Well I think I'm even further out of that box, because most doctors don't even know what to do with me. I'm a unicorn!
Anyway I digress. Please I ask for prayers & support. I am always an open book to kind inquiries 💜🦓🦄
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