Failed surgeries and needing rehab

With the news that my reconstructive shoulder surgery is indeed failing thanks to EDS, the increased stress on my body during my recent trip and some increase in dislocations and decrease in energy, I’m essentially bedridden. I’m really needing care that I can’t receive here. None of the assisted living places I contacted have gotten back to me, but this is urgent. Do I head to the ER? Will they just turn me away? I don’t know how they handle chronic illness turned acute and I don’t need or want painkillers, I want actual help. Something lasting. A treatment plan, rehab, a referral, alternative treatment ideas… All of the above.

I feel really alone in this and my only idea is the ER because hospitals are supposed to help sick people, right? Maybe I’m wrong. I need help. I really need help.

2 thoughts on “Failed surgeries and needing rehab

  1. I wish I had some words of wisdom for you. Are you on a dual needs (Medicare and Medicaid) health coverage plan? They sometimes have care coordinators that can facillitate your care. I am not sure how well the system works but it may be worth a try. It must be very difficult to feel you have no viable options. Can your Dr. advocate for you? Does EDS have an organization to advise you? I know you probably have thought of these routes already…..just thought I’d suggest and also say I wish good things your way. My Mom is just looking for Sr. housing on LI and I know that there is a wait just to get on the wait list!


    • Hi LI friend! I have private insurance and Medicaid. I am struggling just to get a caseworker of some kind. I thought my visit to the ER would require them to follow up. Not so much! I can’t figure out this system. None of my docs are willing to take the lead in my care because they don’t know much about EDS. Sadly, no local advocacy and it seems even the national organization is very limited in resources. I’m on the public housing list, but yep, there’s a wait of at least a few years and able-bodied seniors get preference over disabled non-seniors. Something unique to LI. I wish you luck with your mom! Call every county/town and get her on as many lists as possible. That was the vest advice I was given! Thanks for reading and offering your help! xoD


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