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Melanie’s Story (CRPS, Gastroparesis)

Melanie's Story (RSD) My daughter, Melanie is 13 and she’s a warrior; our smiling warrior. She has fought RSD/CRPS (Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome) a neurological dysfunction which causes chronic pain and other symptoms along with gastroparesis (paralyzed stomach), syncope, fatigue, and general malaise for three and a half years. Many doctors have listened and tried to help her symptoms, while others offer nothing and shuffle her along to another specialist. She is deemed to be “complex” and a “puzzle” and we are still trying to find just the right treatment ideology, if not a better diagnosis/explanation for her symptom set. She has been through many treatments, medications, and she continues with daily physical activity that is painful but critical. She also has an implanted device to help her stomach act properly and to help symptoms which don’t respond to medication (nausea, vomiting, reflux). She has learned to adapt, improvise and overcome many challenges and teaches us daily about inner strength and positive thinking. She is my hero. She shows the world how “to fight like a girl” every step of the way.

Melanie wrote this for a class at school and I really think it shows her tenacity yet the strong emotions involved with growing up managing the challenges of chronic and misunderstood illness.

Thanks for reading.

“The Challenge of Pain”
By Melanie

In my life I’m challenged by peer pressure, school, and stress, but the biggest challenge I face is here to stay. It’s RSD, the monster inside of me. There are so many things to consider when dealing with this disease of pain. Is this going to be hard? Will I have regrets? Don’t let the bullies bother you. Cope. Mask your pain and suffering. It’s my biggest challenge, plus in years to come I wonder if I’ll be safe alone. Will I be accommodated? How do I overcome the daily challenge of pain?

On January 24th, 2010, I experienced a simple injury , struck with unbelievable pain, and given a monstrous challenge to overcome nonstop pain. Each day I wake up to the challenge of my life as a game of spoons. In the morning I start with twenty spoons. School leaves me with just 10 spoons to get through my day. Add homework and subtract three or four spoons. Play with friends and there go a few more. Therapy is at least three spoons. By now I’ve used them all and it’s only 5 pm. I’m done! Wait! Rewind! I don’t play with my friends outside, instead invite them to watch TV or use the computer so I can get through the day with crashing at 9 pm.

I balance activities (manage my spoons) but still face my pain. I have to find my mask. Grimace, don’t yell. Express pain through your eyes, not on your entire face. Smile, don’t frown. Hide the limping. Act silly or perky to hide the despair inside. Act normal after the bullying, don’t let them see the damage and hurt to your heart. The daily charades of my mask covering the hurt, despair, and the emptiness that only I can see. Only I can see the scrambled mess that is my heart and brain, and is hidden behind that mask.

What happens when I go off to college, when I’m on my own without my parents to back me up, with nobody who knows from the beginning? All over again with the skeptics and disbelievers, the horrid game of who is a real friend or who gets what is in my head. I live this life every day. A scary game of what I will face now and what I will face in my future. How do I overcome the challenge of pain?

I live this life each day. It’s a scary game that I face now. what will happen in the future? How do I overcome the challenge of pain?

Submitted 07/21/2013

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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One comment

  1. Diane Coccia

    For a young lady to have this fight with this horrible monster is terrible ,my heart reaches out to her ,and love and strength come her way from me.
    I am a grown woman with this disease and I know the fight for everyday,some better than others.I look forward to that one day of being an almost normal to play with my grandson,and to my task around my home.

    Sweety warm loving arms around you and you are now in my thoughts and you are a WARRIOR.

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