Spreading Awareness
I decided a while ago that I would push to spread awareness about Reflex Sympathetic Dystrophy, aka, Complex Regional Pain Syndrome.
Because of my decision, I am now apart of many different social networking sites. As it stands, I feel completely overwhelmed and wish that I could set up one site to update all groups and messages, etc.
However, until that happens, I will still keep going into each one. I am checking to see if I have made just one more friend, or if my old friend needs words of encouragement, and yet another friend needs to find something and I help them look for it online. At times I withdraw into a shell and I don't visit any of my sites. I am not sure if it's the RSD messing with my head (pain), all the medications, or both.
The main purpose for this writing is: I had signed up for Window's Live Spaces ( www.jesdenm.spaces.live.com ) A man came to my page and said hello. I went to his page and found an outlet for a poem I had written. I contacted Mitch and asked if I could display my poem on his site, like others are. He gave me permission. Since posting my poem, I have received numerous comments thanking me for making them aware, apologizing for my pains and struggles, and complimenting me about my strength.
This is the screenshot of how many people have visited my live space since I started it:
- Note: Information may take some time to be listed.
Total page views: 131 Page views today: 8 Page views this week: 97
Page views within the last hour: 2
As you see above - 131 people are even more aware of RSD/CRPS then they were before. There are many more on Mitch's site that have commented and became aware.
Please if you feel it in your heart, please email this post, or send someone this way, just to read. All it takes to start is the word to be spoken, or written.
Always pain free hugs,
Christine
I'm not sure if I gave you my RSD blog before because I know I have come across your website before. Sorry if this is a repeat! I'd love to spread awareness too, and I'm trying my hardest through networking websites like facebook. Attempting to get my blog out there is another small attempt. I wish I could do more. Keep fighting!
<3 Maria
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No sorries needed. I will check out your blog. I am thinking of starting a forum where I can list all the different websites I have found to support RSD and the people who suffer from RSD. Thank you for yours.
Hugs,
Christine
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Hi Christine. I think each thing we do on our blogs or posting comments on websites etc helps spread the word. In addition I am now emailing politicians and recently emailed one of our morning TV shows. I don't have a reply but will keep trying. Little by little we will all make a difference.
jeisea
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I couldn't agree more. Even the little things we can do help in BIG ways.
Thank you for stopping by
-Christine
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On our national on-profit RSD website, www.RSDHope.org , we try and help spread awareness every single day. There is even a national RSD Awareness ribbon available for other websites to use on theirs to help bring awareness to our disease; now known as CRPS. Yo can write to us for a copy of the graphic to be displayed on your website or facebook page, etc.
Drop by, we would be glad to see you!
Keith Orsini, Director, and CRPS Survivor of 34+ years
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Thanks Keith I would greatly appreciate that. Page found and email request sent.
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I have suffered with RSD for 20 years. The pain was isolated to my left hand and arm and occurred during the 7th surgery to my left arm for multiple fractures.I wore a cast for 4 years and the RSD developed after 3 years from the initial injury. In June of 2008, I started experiencing lower back pain that traveled to my butt-ox and leg and shot into my left foot. My initial thought was the possibility of my RSD spreading. In 2006 I underwent surgery that released the median nerve from my pronator teres muscle.Of course this did not cure my condition but proved that my pain was real and not psychological in nature, The following year the neurosurgeon went back in believing that I may have another entrapment. None was found. Since June of I have seen at least 7 physicians and evaluated by The Mayo Clinic in AZ. RSD was ignored or spreading denied as no scientific evidence supported its possibility globally. No one has found the cause of my current pain. Needless to say I very frustrated and now unable to travel by car for more then an hour without the pain escalating and having to get out of the vehicle and stretch my muscles and scream. This gives me some relief until a next stop is required. Driving was an outlet I enjoyed since the onset of RSD an allowed me a period of relaxation. I do get support from a member of the RSD Organization and his courage has helped me. The fear I have of the possibility of my RSD spreading terrifies me. I am a psychologist and have courage and strength to go on using many tricks of the trade. However, I sometimes just want to give up with this new development. Locally, I have not found a group to attend as most have been ceased and various members of the former groups seem more inclined to send you to physicians who they feel know the answers. Sometimes I feel they have become agents for the physicians who we all know have no miracle cures. Researching again and again has led me to the resources that have helped. It is difficult to get through the maze of sites and it would be very helpful to get a site going that allows people to discuss the disease with some reliable measure of confidence.
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i am 16 years old and i sprained my ankle badly. i was not able to walk for almost a week and 3 days after i did it instead of getting better i got worse and now i am fine when my foot is elevated but when im sitting down or at night it feels like a constant ache or cram in my right leg. i can walk okay and it has now been a week and a half but when i stand still it hurts again and still when i am sitting but it is fine when i elevate my leg. my doctor quoted maybe early rsd but my phisio immedately dismissed it. does this sound like i have rsd? please help????
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i have had rsd since 01 i live in oklahoma i am trying to start a support and awareness group here i understand when you say you do not always feel like checking your mail or even working on it but i am trying to do my best i will keep praying for you and all of us who suffer from this horrible disease i havc contacted my state reps but i am nt getting any response hopefully they will just talk to me so we can get a bill passed here like other states are doing well gotta go good luck and remember with him we can put out the fire within
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