Welcome to Pain Pals Jr. Kid's Club, a place where children of RSD parents, grandparents, and loved ones can meet others and learn that they are NOT alone!!!
Reflex Sympathetic Dystrophy is a debilitating disease that affects an estimated SEVEN MILLION men, woman, and children today. It is a progressive disease of the autonomic nervous system which can follow major or minor trauma. It is a multi-symptom condition affecting 1,2, or sometimes even all 4 extremities. It can also be in the face, shoulders, back, eyes, and other areas as well and may also spread from one part of the body to another regardless of where the original injury occurred. It can be systemic or body-wide and involves the nerves, skin, muscles, blood vessels (causing constriction and pain), as well as the bones. Victims of RSD suffer from constant burning pain, swelling, insomnia, depression, anxiety, loss of jobs and income and more.
It causes us, as kids,to feel worried and depressed because our loved ones are always in pain. It also makes us feel mad and scared. It makes us mad because there is nothing we can do to stop the RSD from spreading and we can't stop it from making pain. We can't help make those we love stop crying. RSD is really hard on us kids who's loved ones have it. We see our loved ones hurting and sad. We see them not being able to work or do the things they used to do to have fun. We see them not being able to do things for and with us like they used to. We see them being tired but yet never sleeping. We see them forgetting things and feeeling frustrated. RSD is a "Really Stupid Disease"!!!
My mom has RSD. She has had it for 2 years. It is in her left arm and side and her right foot. It is very hard for her now that she has RSD. Now she can't work!! She is also having surgery to get a morphine pump!! I was really scared about this at first but I now know it will make her feel better.If mom wasn't in so much pain we would be able to do alot more fun things together again.
It is O.K to be scared she tells me but sometimes it is very hard on me. But, all mom cares about is that I love her and am there for her. She says she would give up if I wasn't here!! I LOVE my mom and I will NEVER stop!!! Don't let RSD stop you from loving your loved ones who have it !!! They need you alot now. RSD effects everyone, not just the person with it!! We have to help each other and teach others about RSD so that maybe one day no one will know what pain is any more!!!
I hate RSD!!! It is very dumb!!! I hate it so much that I wish we could destroy it!!! RSD has no cure yet!! I don't enjoy seeing my mom in pain. It hurts to see her cry. RSD makes me very angry. I am mad that we kids who's loved ones have RSD have to be sad. RSD is not fair!! I wish it was taken out of the world.
I am glad that I started Pain Pals Jr. Kid's Club and have met other children who feel the same way as I do and who can understand how I feel too. It is hard to talk to people and have them understand what we feel like, unless they have to deal with RSD too.
HERE IS A POEM I WROTE ABOUT RSD!!!
THE TERRIBLE, HORRIBLE RSD MONSTER
(An RSD poem by Heather-age 9)
You see her every night
She gives you such a fright.
Don't you dare go near her!
She's NOT very nice.
She'll gobble you up
when she is screaming and crying.
She is on so many medications
that you never know what will go flying.
When she's in a good mood,
She's nice in some ways.
Our lives have been ruined by her RSD.
So, for a cure PLEASE help me pray!!
Let's stop this monster RSD
and bring back my mommy
the way she used to be!!!
Join us for chats on ICQ where you will meet and be able to talk to other children who feel as you do!!! Together we can help each other understand and cope, as well as learn how we can help those suffering with RSD!!!
Visit my message board where you can leave messages and questions for other children of RSD parents, grandparents and loved ones and see the advice they may have to offer.
BRAND NEW!! You are invited to join our daily digest!! Share information, feelings, support, make friends and have FUN!! Together we can help each other understand and cope, as well as learn how we can help those suffering with RSD!!!