Dealing with surgery

I’m new here and am just trying to figure this all out. I got diagnosed by an orthopedic based off of all my orthopedic records. I worked as an EMT up until I had a stroke. Now I’m on tpn because of gastroparesis so I can’t keep weight on. They have already fused my pelvis and are going to fuse my wrists and stabilize my ankles. This new life is beyond frustrating. Its lonely.


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Welcome to the community! I saw your bio. You’ve definitely had quite a few challenges with your health problems. Is the gastroparesis part of the EDS? I have a young friend who was recently diagnosed, and I’m trying to convince her to get on here. She’s pregnant with her second child now, and the pregnancy is making her joints SO much worse.

That’s quite a few surgeries you’ve already had. Have they given you relief?

Sharon from ModSupport

I’ve had over 50 surgeries and yes motility issues with the stomach can be caused by EDS at least that is what my gi doc said. I have some relief but I’ve also had complications because of it as well.

It’s great that you’re here. Having a support system in place can make a huge difference. Do you have any one at home or nearby who can help you out when needed?

Sharon from ModSupport

My husband tries to, my son would rather be anywhere but at home. We make it work the best that we can.

That’s all you can really ask. I know that when I have surgeries that my kids, who are teenagers are only helpful on demand. In other words if I give them a specific task to complete they will do it. For example when I had hand surgery years ago, I needed somebody to tie my shoes for me and to do my hair. that typically fell on my daughter to take care of. As I said, I did find that the more specific I was that the more likely the task was to get accomplished

Sharon from ModSupport

Thats great. My kid won’t even do specifics. I wish he would be more helpful. I hope he is as I start to have more hand and foot surgeries coming up.

That’s a shame. Do you have anything scheduled at this point? I know that this last year I couldn’t be accompanied in to the surgical center, which was a bit rough for me. But I believe that they’re starting to allow a companion in again, in some areas.

Sharon from ModSupport

I have foot surgery scheduled for the end of the month and I’m having trouble with my hip again so the cycle starts again. I don’t know how to keep coping especially since no one is allowed with me for any of it.