Written by Gianna Harris for the RSDSA blog.
How and when did you develop CRPS/RSD?
I was diagnosed with CRPS my freshman year of high school about 10 years ago after playing the sport I love, softball. I was at the last practice before our first game, the pitcher threw a pitch that went right for my hand. I did not think anything of it and just brushed it off. About two days later I lost feeling in my hand and half of my arm. It was then I knew something just was not right. After getting an X-ray the doctor casted my hand because it was acting as if it was broken. Within a week the pain was worse which led to getting an MRI. Still nothing was found. After two weeks I got my cast removed and my hand was discolored and swollen, as soon as the doctors looked at it they knew what was wrong. It was that moment and three words that changed my life, “you have CRPS”.
What has daily life been like since your diagnosis?
When I was first diagnosed my daily life looked a little different than the normal 15 year old. For about the first few months I did not really understand as I was still processing what was happening. My friends, family, and classmates had several questions but I was still trying to answer the questions for myself. Soon after I learned that I may walk slower in the halls, I may have to say “no” when asked to do something, and I may not be able to do everything my friends are doing. Although my daily life may have changed, I never stopped being me. I never let CRPS define me.
What is one thing you wish those without CRPS/RSD could understand?
One thing I wish those without CRPS could understand is when I am up to do everything it is not because I do not want to, it is because I am listening to my body. Understanding that my pain may change based on what I am doing, the weather, and just in general. This can affect what I am able to do each day but being understanding is the best thing we can ask for. I would wish those without CRPS to understand that being part of our support team means more than can you imagine.
What advice would you give to newly diagnosed Warriors?
The best advice I would give to someone newly diagnosed is, you are not alone. There are others out there that feel the same way as you and the CRPS community has created so many opportunities for you to connect with individuals alike. Check out different Facebook and Instagram pages. Check the RSDSA website to see if there is a support group local to you. Find what works best for you. No one’s CRPS is the same. Something that may help one Warrior may be different for you.
What encouragement would you give to Warriors who have had CRPS/RSD for many years?
“Just keep swimming” – Wise words of Dory from Finding Nemo. There are days you may feel on top of the world and others where you may feel differently. But at the end of the day you are inspirational, you are strong, and you are a Warrior. “God gives the toughest battles to the strongest people.”
What activities or treatments have helped you find temporary or long term relief?
When I was first diagnosed I started with just physical therapy. I then began a more intense physical therapy and also occupational therapy at Children’s Hospital of Philadelphia. My time at CHOP has changed my life into something I never thought would be. When I first got there I could not even move my arm to my ear, but I left being about to do jumping jacks, tie my shoe tighter, and braid my own hair. Because of CHOP, they turned my can’ts into cans.
I also participated in a support group of individuals my age that also experience chronic illnesses. Being able to relate and talk about my condition has helped me grow and realize I am not alone.
About a year and a half ago I changed my lifestyle and decided to begin a vegan diet. I have found that what I am now eating has helped in ways with my energy and inflammation. But I have found a new passion in cooking and baking. The kitchen is my safe place. Trying new vegan recipes is the best therapy that has worked for me. I even created an Instagram to share my love for food with others!
Anything else you would like to add?
My final thoughts are “don’t run out of spoons.” I know this probably sounds weird and confusing, but it all makes sense. I attended a virtual conference last year and the speaker explained the spoons concept. A spoon is your energy. You may start with 10 spoons or maybe eight spoons, that is based on how you feel that day. Everything you do takes a spoon or two. Once you run out of spoons you have to recharge for the next day. When you run out do not be afraid to rest or ask for a break. Rest is important for our bodies. I think the hardest thing for me to remember is that I can do the same thing everyone else my age does but my body will be affected differently. I need more time to rest and recover.
“Our condition is invisible but we are invincible.”
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