I was so happy to find a place where people could understand what I mean when I say "My foot is doing 5 things at once"  October 6th will be the 1 year mark for my RSD - I'd never even heard of it before. I'm an Educator, and a child ran into my ankle with a skateboard as school was letting out.  I knew it hurt - heck it sent me flying - but I never dreamed it could go THIS long or be THIS BAD.  In the last 5 months the RSD has spread to both legs and my left arm.  I am off of work and ready to have a line ran in my spine in a couple of weeks.  None of the medications have worked for me - in fact I have had a reaction to all of them.  It took me 11 doctors to find one who thought he could do a block - I had back surgery a few years ago and I have a ton of scar tissue - and missing bone. None of the other Doctors wanted to risk it. 

 

The hardest part of RSD for me isn't even the pain - although now I feel comfortable with saying I truly KNOW WHAT PAIN IS - 6 all natural childbirths was NOTHING compared to this - I hate the loss of being ME.  I've always been a very high energy person who could work 12 hours, come home take care of the house and still have energy for dancing or hiking.  Now after 10 minutes my poor legs look like I stole them from "Barney"  The pain has etched my face - making me look 15 years older than I did a year ago.  I don't even know the person in the mirror any more.

 

I adopted a baby who is autistic, and has Fetal Alcohol Syndrome 2 1/2 years ago.  Everyone thought I was CRAZY to adopt such a special child after I had raised my 6 - and 11 foster children.  I had a hard time at first - I had to re-learn how to do everything for him. Now I find that even though I have to put more effort into his care - he is my inspiration.  He's the reason I get up and going every day - and he's the reason I will beat this.  If he can suffer all of the things he has to - what's a little RSD. I guess my story is very much like everyone else's - people going along in their normal life and being hit out of the blue with this very cruel disease.

 

After reading some of the stories - I realize I'm luckier than a lot of people.  The Education Center has agreed to pay  my full salary and benefits for the duration - or until I am forced to go on Perm. Disability.  I can't imagine trying to deal with all of this and have money worries too. The stress would be too much for me to handle.

 

Can any one tell me about this shunt they are going to put in my spine, with the pump on the side.  I'm REALLY scared to have anything poked into my spine - the last time, during my back surgery - my heart stopped and I quit breathing for over 4 minutes. My body is VERY sensitive to medications and I had a reaction to the omnipaque.  I have had very little contact with other people in this area with RSD - in fact only 1 - and he had this procedure done.  When I met him at the pain clinic - he had tears of pain streaming from his eyes - that made me even more scared.

 

As I am new to this disease compared to a lot of others - any suggestions would be appreciated.

 

Cindy