Moving Forward Has Not Been Easy, but Necessary
Written by Dwain A. Vaughns, II for the RSDSA blog.
How and when did you develop CRPS/RSD?
I broke my foot in 2016 and I was diagnosed four months later.
What has daily life been like since your diagnosis?
Since being diagnosed, daily life has taken many forms. In the beginning, dealing with the pain was one thing, but also dealing with the grief over losing my “previous life” was immeasurable at times. I was an airline pilot, a career that I worked on since I was eight years old. In addition, I was accustomed to living a very active life. Moving forward has not been easy, but necessary. Throughout all of my journey so far, as hard as some days are, I have been gifted an amazing support system, great medical care, and I am now working on rebuilding myself.
What is one thing you wish those without CRPS/RSD would understand?
Living with CRPS, I often feel that I operated within two worlds (The Abled vs The Disabled World). Fluctuating between the two offers me great perspective. As a person with a disability and having accessibility needs, I can say the world does not see us. Please try to see things differently, and if possible be another voice.
What advice would you give to newly diagnosed Warriors?
Safety. Build safety. Create the best support system you can. Family, friends, others in the CRPS community, and your medical team. And trust yourself.
What encouragement would you give to Warriors who have had CRPS/RSD for many years?
If you have been managing your CRPS/RDS for years you have likely put in an extreme amount of work. Daily life can make us sometimes feel like we have made no progress, but we are so powerful. Despite our pain many in our community still have full time jobs, raise children, have marriages, help others, and so much more. For me your journey, your fight, your courage is my fuel. If no one has told you, your fight helped save my life. Thank you.
What activities or treatments have helped you find temporary or long term relief?
I have tried pretty much all recommend treatments. For me the best have been CALMARE therapy, combined with Neuro/Biofeedback, seeing a trauma specific therapist, and psychiatrist. I have also combined my biofeedback into bird watching and photography.
Anything else you would like to add?
With my platform that has been created through my photography I am using it to create awareness about CRPS/RSD and the importance of addressing disability and accessibility needs. In my recent gallery exhibition, I worked with the gallery to ensure that the exhibition met and exceeded ADA requirements. One specific focal point we worked on together was ensuring that the photographs were placed in such a way that everyone, even those requiring mobility assistance, had an optimum viewing angle.
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I am not understanding this!!! I have been crippled by RSD!!!