The Day Everything Changed

I always knew I was different. Everyone said I should be put in a bubble. I was always getting hurt or sick. I can't count how many times I heard “only you!”. From the strange tingling fingers and numb shins that would come from nowhere to the breast biopsy that was bone fragments, something was always awry.
I loved running and couldn't understand why my body couldn't recover from long runs like my friends. I thought it was normal to be in pain all the time between runs. I often didn't say anything about my pain because I thought I had a low tolerance for pain. It never mattered what test a doctor did, everything always came out normal.

And then one day after refusing to see a doctor for two weeks of abdominal pain, I ended up on the floor. I was in shock when the ER doctor said I had pancreatitis. And that was the day in 2017 that everything changed.

The acute pancreatitis kept coming back for no apparent reason, the skin burning got horrible and I would get flu-like flare-ups that would knock me out for days and eventually weeks.

After over 3 years of seeing every specialist I could, being gaslit by many, appearing on a tv show to crowdsource a diagnosis, having surgeries and interventions and a g-tube and weekly infusions, I finally have some answers.

I have Ehlers-Danlos and TS-HDS against IgM antibody Small Fiber Neuropathy. The acute episodes of pancreatitis are under control but the pain is coming back.