Thank you for replying. I am fortunate for the support team I do have. My daughter FaceTimes me several times a day with the baby, if she doesn’t bring him to see me that day. He instantly cheers me up and he knows my voice and smiles every time he hears it or the ringing of a FaceTime call. He has helped me more than he will ever know, the last 5 months of his life.
Seven years ago, I got where I couldn’t eat without throwing up within next few hours. After a 9 day hospital stay, I was diagnosed with gastroparesis (kinda like a partially paralyzed stomach) so I’ve learned what I can eat and in very small portions but I didn’t have any risk factor like diabetes that would explain the diagnosis. Within a year my bladder quit working (bladder retention) so I had to start catheterizing and eventually got a bladder stimulator that helps a good bit but still have to self catheter often. After that my gallbladder was only working at 3% so I had to have that removed. I was diagnosed with pelvic floor dysfunction and wound up having a rectocele surgery to put things back in place and I have to get pelvic floor Botox injections every 6 months to keep those muscles relaxed to help with urination and pelvic pain. I have had 3 tears in my left knee and one in my neck and shoulder now, all without a fall or injury, they just started hurting terribly. My knee dislocates and is very painful to pop back into place, has even happened in my sleep when rolling over in bed. My shoulders have been getting worse with subluxations especially when trying to lay down and sleep. I’ve seen so many doctors. I have quit seeing all my home doctors, they just made every issue worse with their approach so now all my doctors are at Mayo now, and they have been amazing. A few months ago, I was doing a pre op evaluation with a nurse practitioner at Mayo for my upcoming Botox injections and was venting to her about the last 7 years and how none of it makes sense and no one has figured out what is causing all these things to happen in my body. She kept asking questions, then asked me to try and do some things with my body and she asked me if anyone had ever tested me for Elhers Danlos Syndrome. No one had and I had actually never heard of it. She put in an order to the EDS clinic which wasn’t going to be able to see me until February but I called every few days and was able to get in on Halloween. I didn’t meet one criteria for EDS but was diagnosed with Hyper-mobility Spectrum Disorder which is a soft tissue disorder. You have soft tissues all through your body and mine are super stretchy and fragile. This is what has caused the unanswered tears in my joints and the dislocations. Soft tissues also hold organs in place and when they are stretchy, the organs move and over time causes nerve damage which is what has caused the stomach, bladder, and gallbladder issues. There’s not a cure but now that we know what is causing it, I’m learning safer ways to move my body, just because my neck or elbow move abnormally far (which I always just thought was normal), I am learning and retraining my brain to stop movements in safe positions and building up my muscles to better support them. I’m gradually building my strength and endurance back up and trying to get a better quality of life back. It’s crazy that a pre op NP put it all together after all this time and got me a much needed answer. Just having answers has helped me mentally deal with it better.
Anyways, thank you for taking the time to ask and read what I’ve said. It’s helpful to talk about it to someone that isn’t tired of hearing all my complaints.
Have a great day.