My journey and experiences as a young woman just diagnosed with Reflex Sympethetic Dystrophy, or RSD.
A mother, daughter, sister, and ones partner. How it not only effects me, but how it effects the people I love, and how the medical world and public treat me.
Friday, August 13, 2010
One can make a difference.
I e-mailed my senator 3 weeks ago, about CRPS. I recieved a phone call today from his office, and they want to know all about it. One person can make a difference.
Scott Brown's Washington office called me today, and not some recorded message. It was one of his officials. They wanted to know more about RSD (CRPS).
About 3 weeks ago, I wrote him (as well as John Kerry, my local representatives, and Obama), regarding a meeting the board of health senators had regarding ...rare diseases.
I also wrote how a lot of soldiers are coming back from serving for our country, and aren't receiving the care they need.
The official I talked to told me to keep in touch. There currently isn't any piece of legislation going on regarding RSD, but if I have any information to continue to e-mail him, or even call.
I did call back, and I didn't get a machine- I got the official. I found a piece of legislation passed in Michigan, and informed them of it. I also talked to him about the hardship of having an 'Invisible Disability'. He told me he would pass the information along to Scott Brown, and took down all the information.
Now I just need to figure out what would make a good piece of legislation. I am serious about making a difference for those of us who suffer from RSD. Even invisible disabilities.
If anyone has ideas, please comment or message me, or write your senator. We can all make a difference.