I Have CRPS and I am Aware that I am RARE

By Suzanne, Complex regional pain syndrome, United States, February 10, 2018

I have CRPS & I am aware that I am RARE!

I was a mother of two teen girls and I drove a mini van full of teenagers to the mall frequently. We went to Swim team and Scottish Highland dance Festivals. My husband and I were one day sipping Lemonade at an Art fair in 2002, when on the way home we decided to get dinner out. As we went through a green light, another man ran through the red light and our mini van was totalled. It was catorgized as a "Catastrophic Accident". I suffered multiple injuries and surgeries. My 7th surgery was in 2007 and it was on my right foot. Afterwards, I knew something was very wrong.  Five days later my syovial joint sac burst and it felt like a knife cutting open my new surgical stitches.  I was in horrible pain, like a fire and an ice cube together as one. I went back for my 6 week post-op check and was told that I "had a little RSD" and was given Lyrica. The medicine made me so violently ill and I was desperately in pain. I went to a pain clinic and did all that I was told. By 2013, the CRPS had spread after another surgery that went wrong. I was supposed to be getting my pacemaker replaced but when they went in to do that, they found that my pectoral muscle looked like "mince meat". The original pacemaker had been placed inside my pectoral muscle instead of in a bag outside of the muscle. The Neuro-Cardiologist had to call in specialists while I was on the operating table. When I awoke, I again felt something was wrong; even though the wonderful Dr. had researched CRPS and tried to "head off" a full body spread by doing an internal surgical wash of a medication similar to Lidocaine. At my post-op check up, again, I was disappointed to find that the CRPS has spread systemically and was "full body" CRPS now.  I ended up having Dysautonomia/POTS and getting Gastroparesis, SIBO, Chronic Erosive Gastritis, Chiari and now most recently was Diagnosed with Polyneuropathy in Collagen Vascular Disease (AKA: EDS type 4-vascular). I did not want to feel "useless" and I wanted to make a difference. I started volunteering to be a Mentor for newly Diagnosed CRPS patients through RSDSA. I also volunteered as a guest blogger and Mentor for both RSDSA and RSDHOPE.org. Then I still wanted to feel more a "part of a family". As RSDHOPE.org was closing their doors, I joined the US Pain Foundation. Most everything I do, is done from my bed or recliner. I do awareness events and as an advocate, I write letters to legislators and sometimes meet with them.  I do online fundraisers and awareness events as well. My first full year with US Pain Foundation was finished in 2016, and I found out that I had won the "Joselynn Badman Pain Ambassador of the Year" Award. I was thrilled and did not want to stop. When I can get out to do events, I have my husband/caregiver, Craig, take me,stay with me and help me. I did even more in 2017 and now I am on the Board of Directors for the US Pain Foundation and I hope to be part of an Advisory Board to help make a real program and truly help some more chronic pain patients. I am a survivor and I won't give up. Most of the illnesses that I live with are RARE and I'd say that the CRPS is definitely the worst. But although I am RARE, I wont' give up and I will continue to fight for chronic pain patients and the rights to not ever be "invisible". 

Interview With A CRPS Patient, Suzanne Stewart
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