DSN Blog Recent Posts

February 1, 2019

In honor of International Zebra Day on January 28th we have decided to re-share this story by one of our members about her EDS/health journey. It's not easy, but luckily we aren't alone. 

As I sit up in the bathtub at 5:00 am trying to keep my persistent and cutting cough far enough away from the rest of the sleeping house until my next nebulizer tr...

November 24, 2018

Isolated, jaded, and misunderstood. Chronic illness has somehow changed me, altered my personality and my outlook on life. Dysautonomia, Ehlers-Danlos Syndrome, and Chronic Pain have really worn me down. I am so exhausted and frustrated with my own body. I am trapped. Day after day of this is just so damaging to the soul. It was the thing that no o...

November 23, 2018

I have CRPS, Complex Regional Pain Syndrome.

I was literally weeks from retirement, a month or so from my “Golden Years”, when I felt

the first symptoms. Being an active outdoorsman and sportsman, my career as a UPS

driver had left me strong and fit. But when my mother was diagnosed with Alzheimer’s

disease I took Certified Nursing Assistant training,...

November 18, 2018

I had my first encounter with complex regional pain syndrome (CRPS), formerly known as reflex sympathetic dystrophy (RSD), when I was 13, though overall it was relatively harmless. When I was 15 I sprained my right ankle (again) and had a more serious flare which sent me down to Boston. The ordeal was not only hard on me but on my mother, in partic...

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