CW// Miscarriage and medical trauma
I was officially diagnosed with vascular Ehlers-Danlos syndrome (vEDS) in January 2012, but it explained a lot of issues that I had growing up. If you knew me then, you know I went through a lot in 2011-2012.
It all started in June 2011 when I found out that I was pregnant with twins. Obviously James and I were elated, but that happiness didn’t last long. My appendix ruptured in July at ten weeks pregnant. James watched me turn blue and code at the hospital. I had an appendectomy and seemed to be doing well so I was discharged a few days later. Then the shit show began.
I kept getting bowel perforations, fistulas and lots of infections. I stayed sick for months and ultimately the infection got to the babies. One of them died inside me, and one week later my water broke. I can honestly say that was the worst day of my life. But… all of this led me to Johns Hopkins.
A few weeks after the miscarriage I was sick again. My doctor at my hospital didn’t return my phone call and all of the local hospitals wouldn’t touch me and would send me to back to my hospital, where they would say ” We’re not giving you any drugs you’re fine go home!” So I posted on Facebook wondering what I should do.
A dear friend of mine dropped everything and drove from Baltimore to Levittown picked me up and we went straight to Johns Hopkins, with a temp of 104°F. I had never been triaged faster in my life. At Johns Hopkins I received amazing care.
Fast forward to January 2012. After a couple more surgeries and a lot of problems I was playing cards with one of the residents on my care team. It was warm in the room so I had my legs uncovered. My resident noticed that she could see all of my veins. Her specialty happened to be connective tissue disorders. She brought up Ehlers-Danlos syndrome (EDS) to my doctor and a couple of geneticists came to see me. All they had to do was look at me and it was obvious. The geneticists ordered the blood test for EDS and a few weeks later I had my answer…vEDS.
