Finding you have a genetic connective tissue disorder in your 30’s kind of sucks. If you’re like me, a lot of preventable damage has already been done and can’t be fixed. If you find out you have EDS or Elher Danlos Syndrome Hypermobility here is a little advice that might help.
The work I’m doing in therapy is in boundaries and lowering my stress levels. My Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and my Cyclic Vomiting Syndrome are exacerbated by stress. This makes controlling my stress levels and body response to stressors is extremely important. My last therapy appointment my therapist asked me to work on an idea
Many people who know me, know I love people watching, and part of that is reading “Dear …” advice columns. I find they give me others perspectives and help me in situations that come up in my own life. Most of them try to show an empathetic, honest answer for problems about which they are
Friday, Daniel and I were suppose to fly to Washington DC for my cousin Jake’s wedding and some sight-seeing. Instead I woke up in one of my spells, and spent the next twelve hours throwing up and moaning in pain. We had to cancel the entire vacation, I’m still in bed recovering. Sometimes, despite all
I sat down today to pay some of my medical bills, and realized that between the two of us we were over half way to our medical insurance deductible before the end of March. I’m only about half way through PT and Daniel starts his on Monday for his sprained LCL. EDS life I guess…
We’ve been having an absolutely amazing trip so far. After all the walking we did yesterday, today Daniel and I got a late start. We slept in then got ready at a snails pace. We packed KT tape for skiing and hiking but didn’t use any yesterday. Today we were sore from yesterday so we
Daniel and I had just come in the house from somewhere and we had NPR on the radio keeping Magnus entertained. As we were settling in I caught a few words from the program that was on that day. Those words have been sitting and stewing in my head for several days. Fresh Air’s Terry
Ehlers-Danlos Syndrome type hypermobility (or hEDS) presents many issues outside the party-trick-worthy bendable joints. This means that beyond my killer Mrs Incredible impression, I have complications above and beyond my joints. hEDS seems to affect my entire body, and each system is affected differently. This means I spend a lot of time and money at
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