adria

Finally getting sent for the MRIs to properly check my spine for some of the common problems that ocurre with Ehlers Danlos Syndrome! This is huge good news for me because I've had symptoms of a few nasty but correctable issues most of my life and they have gotten worse and would contribute to me being in the wheelchair.

Have I mentioned how much I dislike needing a wheelchair? And how much I dislike not having one I can move about in on my own but need to be pushed in like a toddler? My scooter-type motorized one broke down twice and I have abandoned it as it wasn't very useful anyway--wouldn't fit into any normal vehicle so I couldn't get it places I needed to go and well it was unreliable since it kept breaking down. I was resigning myself to ordering a customized ultra lightweight rigid frame TiLite wheelchair and on top of that E-wheels so I'd have some more independence--though my physical therapist said it would be a long long time before I'd be physically able to really go off anywhere on my own ever. This while being an improvement over my current situation is clearly not ideal since being in a wheelchair is still incredibly painful for me. My hips, knees and spine are literally fucked and being limited to sitting is often nearly as exhausting as walking or standing only I'm not making my legs worse by causing further subluxations or dislocations. I do stand and walk as often as I am able/it's safe despite the pain and potential injuries as nothing aside from my physio will help build muscle around those weak loose joints.

Now that I've been doing physical therapy for a couple years and got permission awhile ago from my PT to go to spin/cycling classes (no impact and working the muscles around my bad hips too) and we're seeing very little improvement in my ability to stand and walk at least one of my doctors has so far agreed to further investigation. I have got better stamina now to be up and out of bed, or out of the house (in the wheelchair or popping in and out of a car very short distances) and for awhile I was noticing less overall pain as well which is all wonderful and I'm happy the therapy was able to accomplish at least that but I will not accept that I will never be able to walk properly again. I know I have symptoms of issues that have proven treatments and on top of the EDS damage to my ligaments and muscles would cause additional standing, walking, motor skills difficulties.

There's no cure or treatment for the Ehlers Danlos but there are treatments and procedures for some of these co-occurring conditions. I will not stop fighting for my quality of life and I will get out of needing that wheelchair. You just all watch me. This year I am making my comeback.