November is RSD/CRPS Awareness Month.
Many might not realize that I have been battling RSD for over 18 years now. I am lucky that I have a pain management program that works relatively well. Maintaining that management program has come at great risk and cost, leaving me disabled from the ability to work. The benefits though far outweigh the cost as I have the chance to live a good life and care for my family. I may not be in remission (I could only pray for that day) but my RSD is manageable. My RSD will continue to be a daily battle but I consider myself on the winning side.
I consider myself a proactive type of person. I have set up an Awareness event on facebook. https://www.facebook.com/events/372029616263589/ My personal goal is to get 1,000 people to show support before the end of November. My plan is to blog as much as possible about RSD topics during November. I will be sharing information I gather and my points of view about living with RSD. I have found a website that has a large variety of RSD Awareness merchandise. http://www.zazzle.com/rsd+awareness+gifts Leo plans on buying me a shirt from the site for the coming awareness month.
Monday October 21 2013 was a great day for us in a step towards Awareness. On NBC there is a television show called The Doctors and they did a segment about RSD. http://www.thedoctorstv.com/videolib/init/9967 The woman who was the focus of the show, Kathy, has RSD after someone accidentally stepped on her foot. What I liked best about her is that she finds a way to smile past the horrible pain. She lends her support to others while she is fighting her own progressive pain battle. Her life, like many others with RSD, if centered around her battle against RSD. She is proactive, strong, and hopeful.
What can YOU do to help spread Awareness? First educate yourself so when you do talk to others you at least know what RSD stands for and what it's symptoms are. You can either google RSD, read the posts on my blog, or ask your loved one about their personal experience. Everyone has their own story. Too often RSD'ers feel isolated in their struggle but when you earnestly ask them about what it is like to live with RSD you will find that they will open up. Once they open up to you they will instantly feel supported and feel more comfortable leaning on you. Next, simply wear an orange ribbon, update your status on Facebook that you support RSD Awareness, and tell 5 friends. Do not worry that you do not understand everything about RSD. Unfortunately no one fully understands RSD! RSD was first documented during the Civil War, termed Causalgia but it is grossly misunderstood, misdiagnosed, and under researched.
How can WE change that? The RSD community has already made great strides in the past 15 years. Still we struggle to find a reasonable pain management program. Back when I was first diagnosed I had to travel 2 hours to find a doctor who was able to treat RSD. Now there are pain management clinics everywhere. I have had the opportunity to witness the growth within the medical community. I remember the first time I heard about Ketamine Coma it was only being performed in Germany and Mexico because the United States FDA deemed it was unsafe. Dr. Schwartzman became the leading doctor by refining the drug treatment into an infusion type protocol making it into a safe, awake treatment program. Ketamine is just one type of treatment program available, yet nothing gives long term or even permanent relief. Research has been done that proves RSD/CRPS is the most severe form of chronic pain. Imagine living your life in that constant state, or at best having a few days of relief before being plummeted back into that high level of pain. That is why we need awareness. That is why we need to stand up to pain and say we deserve a cure. That is why we need your support!
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