My journey to a cEDS diagnosis

Posted June 8, 2020

From veteran to medically retired with classical Ehlers-Danlos syndrome

Probably one of the hardest things for me to do is actually talk about myself. So this is no small task.⁠

I am a 49-year-old mother of three grown children ages 25, 28, and 33. I’m also a Grandma of a 7-year-old girl and twins, a boy and a girl age two. My husband and I will be married 22 years; this is both our second marriage, we are a blended family. I’m from NC, he’s from PA, we met while on active duty in the Army on Ft. Riley. At the beginning of 1995, I was injured during a training exercise on Ft. Riley, during which, I dislocated my hip, damaged my knees and SI Joint.⁠

I decided not to re-enlisted and received an honorable discharge in October ’96. Michael and I got married in December of that year. After getting out of the military I achieved my Bachelor’s degree in Human Services and worked as a counselor for over five years. During that time the joint, muscle and low back pain became increasingly worse so I decided to apply for a service connection claim in 1996. ⁠

In 1997 I was approved at 40% for depression, si joint dysfunction, and a knee condition. In 1999 I was diagnosed with Fibromyalgia. 1998 it was added to my service connection. During the early 2000’s I began work with the federal government working for USDA. While working full time and raising a family I achieved my MBA in 2002. I started really struggling with brain farts (fog), SI pain, and other medical issues.⁠

From 2001 to 2012, I worked for the federal government as a pay tech first with DFAS/ United States Army. In 2004 I began working in pay for the US Coast Guard, during which I had more and more medical problems. ⁠

Pain and subluxation, bendy ankles, and unstable hips and si joints required me to use a cane and eventually started using a walker. In June 2012 I had a TIA, and in 2015 I went to several specialists including a geneticist who diagnosed me with finally with Ehlers-Danlos syndrome.⁠

I was ruled as unemployable and 90% through the veteran’s administration. I was medically retired from US Coast Guard in 2013, Social Security approved 2016. My health/medical situation I would say is “complicated. I have a Facebook page ‘Roar I’m a Zebra.’

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