Buckle-Up Young Warrior: An Inspirational Story for Adolescents with CRPS

Published on November 27, 2019 under RSDS General Info

Written by Madison McKune for the RSDSA blog.

I know your favorite stories start with the classic phrase of “once upon a time”, or have these amazing, colorful, vivid, superheroes that somehow in the brink of the scariest moments turn bad into good. I know that this diagnosis you just received seems like one of those scariest moments. That all these new faces and doctors, needle pricks, and hospital stays seem like you are living your least favorite fairytale, or that you are now a pawn. Let me assure you sweet child; you are exactly where you are supposed to be. You are not lost; I and all the other warriors in this community are holding your hand.

I, Madison McKune, am holding your hand, and we are going to get through this together just like the board game “The Game of Life.” I am nineteen years old, and currently enrolled in college in Georgia. I aspire to be a nurse anesthetist with a concentration in pain management. I have been fighting this ‘monster’ since I was ten.

I went from trick-or-treating, coloring, playing board games, dressing up in silly costumes and playing with my friends to seemingly overnight living the villain’s role in a life that no longer aligned with my own. I underwent a meniscus repair surgery; then afterwards developed pain which I did not know how to explain to my parents. I was afraid to tell others, especially doctors, how bad my pain was. I wanted to fit in with all my other friends. My friends that were living “normal” lives. But my new warrior, SPEAK UP! Do not be afraid.

I lived in and out of Children’s Healthcare of Atlanta for six months, during which time I was unable to walk. The doctors whom tried to help me were unable to properly diagnose what was going on in my body. It was not because I was a “villain”; rather, it was because of how special I am that I needed a special team of doctors from Boston Mayo Clinic for kids to work together and properly diagnose me with this long word, which seemed like the entire alphabet stringed together in a bowl of soup, called Complex Regional Pain Syndrome. After being diagnosed, I was able to come home (finally!), with my parents and through lots of physical therapy and Lumbar Sympathetic Nerve Blocks my body was able to heal. For five and a half years I was in remission.

In the fall of 2016, I had Bronchitis which snowballed into Pneumonia and Pleurisy. After being released from the hospital my unwanted friend, CRPS, returned. Since then, I have been receiving special treatments called Ketamine Infusions and Stellate Ganglion Nerve Blocks every time I experience pain. I know these are big words, but really its just extra special medicine my pain management doctor gives me to make me feel better.

When I was first diagnosed, I was limited to the activities I could do, most of which included being in bed. I played lots of board games, my favorite being “The Game of Life”, and watched countless Scooby Doo movies. Even “The Game of Life” which seemed to have every milestone on it; and Scooby Doo where the mystery team always caught the bad guy could not have prepared me for the battle that I was about to face. Young warrior, all the different colored pills you see, they are special superhero medicines that are going to help make you stronger and feel better. All the doctors and new faces you are about to see, they may seem like a blur of colors, but they are going to help turn from a scared warrior to a superhero with an invisible cape. And next time you go to play a board game, pick up your favorite game piece and know that it is YOU, you with an invisible cape already capable of capturing the villain, just like the mystery team. Because I am holding your hand along with all the other CRPS warriors.

Just like any board game, to get from start to finish is never short or easy. This journey that you have just been given the OPPORTUNITY to fight is not going to be short. But you, YOU my new friend, you CAN and WILL fight this monster, and just like the mystery team you will conquer this as long as you remain true to who you are, keep living each day to its fullest and wear your invisible cape.

Buckle up my little warrior! We are going on an adventure together, and together we will solve this mystery and find a cure for this “villain”.

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  1. Patrice

    My 15 year old daughter is in the process of getting this diagnosis following an injury to her ankle. It is heartbreaking to see her go overnight from an active, bubbly teen to a girl struggling with immense pain and unable to move her foot. She a warrior, and your words give me hope that she will go into remission. Thank you

    1. Stephen L

      Hello Patrice,

      I hope this message finds you, your daughter, & the rest of the family in a better position than it was 18+ months ago. My heart goes out to your daughter having such a horrific experience so early in life. Children have it worse than that of adults on so many levels that are so very difficult to really comprehend since the RSD/CRPS/Causalgia community, as a whole, still doesn’t know everything, so trying to explain it in more simple terms is difficult, & of course while also trying very, very hard to be positive to give some hope at the same time. Since it is so very complicated as well as complex with the keyword “Complex” being part of the name, as parent(s) trying to see your child through this experience is next to impossible to do.

      I’d love to hear back from you & exchange information, ideas, experiences, etc. Trying to do that here isn’t so simple & it’s not set up for that to happen. My intention is help to provide some comfort while also helping to provide whatever I can possibly do. I’ll contact the RSDSA office to see how we might be able to connect. Since this is public, I’m too uncomfortable to leave more direct contact information here.

      This is on Friday, July 30, 2021. I hope we can connect, if that’s ok with you?

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