I Hope I see you all attending this years walk in support of me. Lets get our family to be the biggest team yet !! If you can't make the walk please make a donation on my behalf. Much Love Always - I love you all - Debbie
Im the Chair of this Fundrasing event now and I Need your Help ! My ultimate Goal for our community is more Research that leads to better treatments and a cure for Complex Regional Pain Syndrome. That can only be done with more funding. In short CRPS its a misfiring of pain signals being sent from the brain after a injury and even after the injury heals the brain keeps sending pain signals like it just happened. It is a autoimmune condition.
In 2016 I had a pain on my side that was so severe and wouldnt let up that I thought the CRPS had spread to my right hip area. I lived with for a year before a routine checkup on my bladder found I had a Staghorn Stone in my kidney. A Staghorn Stone grows into the filters of the kidney. Imagine living with the pain of a normal kidney stone day in day out for a year. I was in the hospital for 9 days mostly to deal with the pain from the surgery and trying to prevent that pain from becoming permanent. For 13 years I was pretty much bedridden. Staying on the couch or in bed. Any kind of movement I make brings on pain. I finally found a new doctor, Dr Brian Durkin, who was able to find a combination of medications that finally allowed me to live a somewhat normal life.
Its been 20 years since I had a crush injury when a 10' tall 5" wide case of Steel Flashing fell and slammed into my neck and shoulder. I did not know then that it would be a Life Changing Injury that would lead to me developing CRPS/RSD on my entire left side, which sentenced me to a life Living with Pain. Pain that Never goes away. Pain that is so unbearable, 7 days a week 24 hours a day. Pain that is so so severe that its hard to explain it or give a reference point. Doing any sort of task will bring on the pain. Overdoing anything will put me in a flare then Im back in bed for 1 or 2 days, sometimes more. Imagine a child living with this kind of pain, not being table to run around and play. It wasn't until I found a new pain management doctor who was able to give me a combination of 2 medications that I was able to get back to some sort of normal life.
On the Mcgill pain scale that doctors use RSD/CRPS is the highest rated pain 46 on a scale of 50. While a treatment might work for me it doesn't mean it will work for someone else. We must find a treatment and a cure that will help all of us. The only way we can do that is with more funding dollars.
So please help us anyway you can.
RSDSA provides support, education and hope for those with CRPS/RSD, drives research for treatments and a cure and sponsors clinical trials. To help Children and Young Adults understand they are not alone in this way of life RSDSA also sponsors a 1 week summer camp for the children and a Young Adult weekend which have been a Huge Success !
RSD/CRPS has had so many different names since it was discovered by a Doctor during the Civil War. The nicknames for RSD/CRPS are The Invisible Disease and The Suicide Disease. Imagine life as you knew it comes to a stop. You can't work anymore, no income coming in. Your friends and family stop inviting you out and Stop calling. Some people find they can not bear the pain and take their life. People look at us and think we are lying. What is left can be a very lonely existence. Not all families are like ours. As a adult the pain is hard for us to bear and it is so much worse for children.