Tougher than I thought

Ok… I now know why I have been in so much pain lately and why I was struggling so much with my mobility. I fought it a lot thinking that I was starting to become a wimp (I can usually work through the pain and keep going anyway) but after today’s doctor visit I realize just how tough I was still being after all. I have been walking around with my entire spine either dislocated or subluxed! (the latter means half-way dislocated). EVERY JOINT was effected from my pelvis to the base of my head!

Oh and that whole thing about not being able to sit without intense pain and having to have help to be pulled out of my chair to get up sometimes because the pain was so intense? My entire right hip was DISLOCATED and I was walking (rather I’ve been limping actually) around with that for almost 6 months!

Good news is, the doctor there knew about EDS and so he also knew how to help. BETTER news, when he found out how badly I was messed up, he brought in the expert and it turned out to be my old doctor from before my insurance was changed on me. He remembered me too even after all this time. lol : )

As they were working on me though, the comments about my bones and joints slipping around so freely it felt like things floating around in soup was a bit unnerving. As well as the part where they accidentally dislocated my entire ankle while trying to straighten my left leg in order to help the subluxed left hip in hopes of helping the right one settle enough to be put back in place. My EDS has definitely gotten worse. A LOT worse. 😦 It will take about 6 months, but I am getting sent to an EDS specialist in Oklahoma to help get to the bottom of my EDS (what specific type we’re dealing with, how severe it has gotten, where to go from here, etc.) and until then, the doctors I saw today will be bringing me back in on a regular basis again so they can keep putting me back together.

Oh and to add irony into the mix, they got me all lined up right again and set my joints back in place, only for me to walk out and immediately be faced with an overloaded Autistic child. By the time I finally had David settled and okay again, half the work that was done on me all got messed up again. Dealing with severe Autism at the same time as Ehlers-Danlos is definitely no fun and games. 😦


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