*The responses in black are my daughter's words. The responses in blue are my words, as her mother.
HOW AND WHEN DID YOU GET RSD?
It just showed up while I was at school taking a test. It started feeling like a bubbling going down from the top of my arm to my fingers, like my arm was getting really big. It really hurt. My arm turned red and splotchy. I was 8 years old at the time.
My daughter went to school on a Friday, a normal, happy, healthy child, and came home with her entire left arm bright red and she was telling me it hurt a lot. I medicated her, thinking maybe she was having an allergic reaction. A few hours later, her left arm became mottled and I rushed her to the ER. We were in the ER three times over that weekend, and she was diagnosed with RSD by two different Neurologists while there.
IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
I can't go on the monkey bars. I can't do cart wheels. I can't “play fight” with my brothers. I have to wear a sling to keep other kids from bumping into my arm. It makes me scared to do things because I don't want my arm to hurt.
My daughter is no longer the happy, little girl she used to be. She is always in pain, always in tears. I have lost a lot of hours from work taking her back and forth to specialist appointments, trying to help her get into remission. She is scared to play outside, and scared to take a shower because even water causes her severe pain.
DO YOU HAVE A GOOD SUPPORT SYSTEM?
Yes, Dr. Wayne, Dr. Ghandi, Dr. Marks, my Mommy and Daddy, and my Nana.
DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Yes, my Nana prays with me that I will get better.
Without my faith that God will help my daughter go into remission, and that God has given my daughter this disease, I think I would be lost.
HOW HAVE YOU RE-INVENTED YOURSELF?
I do stuff with just one arm, and it's easy now that I'm used to it.
HAS ANYTHING GOOD COME FROM THIS TRIAL?
I don't know
My daughter is so brave and strong. She doesn't see how strong she is, but I see her become stronger every single day.
WHAT THINGS DO YOU MISS THE MOST?
A lot of stuff. I miss being a normal kid.
I miss her smiles and laughter. I miss her innocence that this disease has stolen from her. I miss her being happy.
WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
That I'm still Ciarabel. I don't want people to be afraid to play with me because of my arm. I want people to know that this is a bad disease and no one deserves to get it.
This disease knows no gender or age. Anyone is at risk. My daughter had no injury or infection that caused her to get RSD. Her specialists believe she simply bumped her arm wrong. This disease robs people of the simplest things in their life because of the pain. It literally becomes the focal point of the entire family because the simplest thing can cause a pain flare 10/10 and can take hours before the pain is under control. You can't leave the house without bringing the proper medication with you, in case a pain flare occurs, and sometimes plans have to be cancelled due to pain. Or sometimes we get to where we need/want to go and have to leave in the middle of whatever activity we are participating in due to a pain flare.
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