Let’s Help Others Understand CRPS
Written by Shanna Parlock for the RSDSA blog.
How and when did you develop CRPS/RSD?
On April 27, 2007 I went for the first horseback ride of the year, and since my daughter was born. After it, my life would never be the same.
During the ride, my horse was spooked and threw me off. I shattered my L3 vertebrae. My back started to heal correctly, but then for some reason it would not finish healing. In February 2008, I had a 12-hour surgery to replace my L3 vertebrae with titanium mesh and fuse my L2 to L4 with rods and screws. Afterward I kept telling my doctor I felt two types of pain. I felt an aching pain in my back, which would improve with rest and medication, but I also had a burning excruciating pain in my left hip and leg that never went away. Several tests and several years later, my husband encouraged me to see another doctor. In 2012, I had an appointment with a new doctor. He started to examine me and touched my left leg. In doing so I screamed and jumped away from him. He had been a Navy Seal and seeing this first hand instantly diagnosed me with RSD.
What has daily life been like since your diagnosis?
Daily life is a challenge, the pain is constant and now on my entire left side. This includes my mouth, eye, and chest. Cold and stress are the main factors of my disorder. I was a middle school administrator for five years, but I had to step down from that position due to stress levels causing my pain to become unbearable. I now work as a robotics/drone instructor and individually tutor students in mathematics and science. I am a mother to three children, one of whom I had with CRPS. I work very hard to balance work so I am able afford the treatment I need (insurance pays very little, if any at all), the pain, being a good teacher, a mother, a wife, and not losing myself in all of this.
What is one thing you wish those without CRPS/RSD could understand?
I am not looking for sympathy or pity. I want to be treated as myself, but if I cannot give a definite yes that I am able to do something or attend an event please be understanding with me. My levels of pain vary from day to day, even hour to hour. I am not able to plan ahead for things that I am able to participate in, but I would love to be a part if I can. This is such an isolating disease, and I just want to be understood.
What advice would you give to newly diagnosed Warriors?
Stay informed and educate yourself. Many doctors I have seen have never heard of CRPS. Even my main CRPS doctor has not read all of the medical studies that are out there. We have to be an advocate for ourselves and others.
What advice would you give to Warriors who have had CRPS/RSD for many years?
Self-care is so important. I learned the hard way that if I do not take care of myself then I will not be able to care for anyone else. I would also add that we have to be careful not to lose ourselves to the pain, medications, and the disease. We were put on this Earth for a reason, and we have a mission to fulfill unique to each of us. We are warriors. We are stronger than anyone will probably ever know.
What activities or treatments have helped you find temporary or long term relief?
I follow an autoimmune-protocol diet and try to exercise regularly. If I do not use it, I will lose my mobility. This drives me to push myself to take care of the health I have. I try to surround myself with empathetic people. Therapy has taught me to deal with stress and pain as well as, grounding and breathing techniques for when the pain is unbearable.
Anything else you would like to add?
I was in a bad situation at work for a while. People thought I wanted attention, that I was lazy, and that I was trying to manipulate people. How could I be so positive and be in pain? How could I not be crying and screaming if I was in as much pain as I said I was in? What was this disease? I was making it all up. Through this situation, my support system helped me to realize that life is too short to deal with this lack of understanding and that people needed to be educated. I feel I was given a mission, and I will work until the end of my days to help others not to feel the way I did.
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