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I am participating in the Achilles Walk for Hope and Possibility again in NYC on June 28, 2009. I would like to raise funds and awareness of RSD, Reflex Sympathetic Dystrophy, the disease that has taken over my life and changed it in ways I never thought possible.
RSD is a chronic pain syndrome characterized by severe and relentless pain that affects between 200,000 and 1.2 million Americans. RSD is a malfunction of part of the nervous system. Nerves misfire, sending constant pain signals to the brain. Many patients are misdiagnosed or told they are crazy, but believe me, it's real and the pain is extremely intense. At this time, there is no cure for RSD/CRPS. Anyone can get RSD. There are millions of people across the United States with this disease. It affects women 4 to 5 more times then men usually in their 30 - 40's. It is ranked as the most painful form of chronic pain that exists today.
The CONSTANT PAIN can be described as a burning pain as if my feet and legs were being placed into a blazing fire. I also experience throbbing, aching, stabbing, sharp, tingling, and/or crushing sensations in my feet and legs.
The RSD started out in my left foot and has since spread up my leg, into my hip. It has also spread to the top of my right foot now too, but it is a different pain than in my left foot and does more of a mirror image, copying the color changes in my left foot.
I have tried different medications, nerve blocks, shots in my foot, and in November of 2006 I had a spinal cord stimulator put in my back to try and stop the pain. Unfortunately, it is not doing what we hoped it would and I continue to live everyday in excruciating pain. I will have surgery again on May 15th to move the spinal cord stimulator down one vertebrae, so that the stimulation will just be in my feet and hopefully take away some of the pain. My Dr. also has me in talks with a Dr. in North Carolina to possibly have a Ketamine Infusion, which would be a 7 day process in a hospital, where they would give me the Ketamine via an IV, and hopefully that would give me a few months relief of pain, but there is no guarantee. Also, if I do get any relief, I would need to go back every 6 months and have the procedure done over and over again. The procedure costs about $50,000 each time and hopefully insurance will cover it, otherwise, I have no way of getting it.
On the outside, I look like a normal, healthy 29 year old, but on the inside I am anything but. The pain is 24/7 and feels like my entire leg has been set on fire. When it decides to flare up, then it feels like someone is stabbing me all over my leg and foot with a knife. Insomnia is a symptom of RSD, so there are nights I am up every hour and I end of taking lots of naps because of not fully sleeping. My foot changes color to the point that it looks like I broke it, it gets so black and blue. It also swells, changes temperature, and a lot of other wonderful things that make up RSD.
In order to get the word out about RSD, I decided I wanted to do the walk for a fourth year and I am asking for everyone's help again. I will be doing the walk in a wheelchair this year because 2 years ago I tried to do the walk without it and I paid the price later that night by not being able to walk at all. Any amount will help in finding a cure for this disease. I appreciate everyone that donated the past three years :0) Please pass this around to everyone that you know because I want to go above and beyond my goal.
If you would like to walk with me, my family, my boyfriend, my dogs and my support group this year, please send me an email (aik789@aol.com) and I will send you the information, application, and how to raise funds for this worthly cause.
Please help me in my fight against RSD and help put the flame out :0)
Thank you,
Lesley
This site is a secure website(https://), so you do not have to worry about donating online, but for those of you who would like to donate, but do not want to do so online, you can contact me via email (aik789@aol.com) and I can send you my contact information. Please make all checks payable to RSDSA. All donations are a tax deduction. You can donate on this page for up to a year.
For more info on RSD, please go to www.rsds.org
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