Why I ROAR!

Posted June 1, 2021

Jennifer and her service dog

When I was a kid, I was always hurting myself whether a sprained ankle a trip, or a fall. I experienced growing pains, horrible menstrual cycles. I was always very limber or “double-jointed”. I could dislocate my shoulder almost on command. I could fold into a human pretzel and touch my hands flat to the floor with my knees straight.

In my early twenties, I had experienced a miscarriage and gave birth prematurely to both my girls, both by cesarean section one as an emergency. I had two surgeries to remove ovarian cysts by laparoscopy.

In order to make a better life for myself and my family, I joined the Army when my youngest of a little over a year old. Within six short months, I became a single parent. Then in 1995, I had an accident in the military during maneuvers. Damaging both my knees, dislocating my hip, and breaking my butt bone (found out later in life). I took a long time to heal and I constantly dealt with bruising.

While active duty I met my husband, of now 25 years, got married and graduated with my Bachelor’s degree. Over time my health began to get worse. In 1999 I was diagnosed with fibromyalgia I felt this was the right fit I was now dealing with all-over pain, had knee surgeries, and three laparoscopic surgeries to remove cysts by age 31.

In the early 2000s, I had a hysterectomy leaving one ovary and began treatments for severe migraines regularly and my joints hurt all the time. Fast forward I achieved my MBA and had been making a career in federal service. In 2009, my ankles, hip, and knee pain were to the point I was on pain medication 24/7 and began using a walker. I constantly had pain in my neck and arms while driving 45 minutes to work and back home.

In June of 2012, I had what was later determined as a TIA. Due to the uncertainty of my illness and how it would affect my driving, it was decided I could no longer drive safely. I ended up filing for Medical retirement, unemployability status with the Veterans Administration, and Social Security Disability. Within a year of the TIA, I began having swallowing issues, painful numbness in my face, and severe headaches. Over the next couple of years, I had several surgeries some GI-related and others for joint issues, mainly motility issues.

Doctors up to this point had given me numerous “throw a dart at the board” diagnoses. I was also accused of making up my symptoms and I often dealt with the skepticism from my closest friends and family. Then in late 2015 I was reviewing my medical records and found I had been diagnosed with hypermobile joints. In January 2016, I saw a new Rheumatologist who did a complete physical exam. Bringing to my attention hypermobile fingers, shoulders, ankles, SI Joint Dysfunction, and hip instability. Also, reviewed my family history and we discussed Ehlers-Danlos syndrome for the very first time.

There seemed to be a light at the end of the tunnel. Over the next couple of months that light got brighter as I began my own research into joint hypermobility. On April 14, 2016, I met with a geneticist and at the age of 47, I was diagnosed with hypermobile EDS (hEDS). Knowing there was no cure I began looking for ways to manage my pain and physical limitations: I was outspoken and an advocate for myself.

I felt like a could scream or growl about all that was wrong and how long it took to figure things out. But instead, I began to ROAR, why not, a Zebra can Roar, Talk, educate, motivate and vent about her diagnosis. So, a Facebook page I started called @ROARImazebra also on Instagram, and is my personal blog about all that’s happened and will happen in my life. It chronicles the nineteen surgeries and twenty-two diagnostic procedures I’ve had since 2014, including the partial removal of my esophagus in 2017 and how I’m feeding tube “a tubie” dependent. I blog about hEDS and use my page to educate, advocate and vent about my day-to-day. It also chronicles my journey is to get my Service Dog. In July of 2019, my Service Dog Toad and I became a lifelong team. He also has a Facebook page @Toadthesservicedog and Instagram. He helps me with PTSD, Anxiety, and mobility issues.

With God, my way maker, and my husband/caregiver and support team of friends, family, and medical personnel I’ve got this. I know I’m not alone that I am one of many a member of the Dazzle. All of us are zebra we just have different stripes. We depend on each other for what we need. That why the Ehlers Danlos Society is so important and why I decided to share a brief glimpse into my story.

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