awe, Summer, I sure wish I could ease your mind. I wish I could sit with you for an afternoon and we could just talk. I feel like I have been around the block with this nasty RSD, and at least, if nothing else, I could be a darn good listener.

I don't agree with Roz's point of view, and I don't think it helps you very much.

I think once you get to the point of acceptance, you will have come to terms with this. There are people who get RSD and get better. Sometimes it just gets magically better all on it's own. I know someone like that. Then, there are those that live in a spiral of unbelieveable nightmare that even I cannot imagine. Somewhere in the middle are most of us.

I had RSD for several years when some docs said it was, other said it wasn't... then it attacked my shoulder in a more traditional presentation, and there was no doubt. Then, I had to face it. I mired in doubt, denial, and many other things for months, maybe even years. Finally - I sort of found my way out of that. I don't know if anyone can help you with that, it is such a personal thing. You will have to figure out how you are going to deal with it.

I know I have mentioned Shinzen Young's book to you before, but his words really did help me... helped me figure out how to have pain without the suffering. How to separate the pain from other things.

My half sister had RSD - she took her life. I don't want to do that, so perhaps it makes me more stubborn about it, I don't know. I believe my father had it too - he had all the signs. So mine is most likely genetic.

Last week, we had a terrible storm go through here... the barometric pressure dropped really fast. That always makes my pain worse. I am 50, and starting to go through the change. I never had problems with cramps until I got RSD, and they have been much worse in the last couple years. Well, the day of the storm, I also had TERRIBLE cramps. And, I had the start of the flu or something.

I was at work, and I had the worst pain I have had in years. I left work, but I should not have been driving. I kept stopping at stop signs and getting out to stand by my car in the cold air to clear my head to be able to drive on. I live in the country so no traffic, and it was at night so it was ok to do this. I didn't know what to do. Go to the ER? They wouldn't know what to do for me.

Finally got home. I heated my bed - do you have a bed warmer pad? they are wonderful!... climbed in, and started with the meditation. It took a good hour, but I got myself calmed down. Got over the FEAR part of the pain. Started vomiting - then realized this was not "just" pain -- I had some flu or food poisoning or something else going on. Took some over the counter stuff for that. Kept up with the meditation. The pain was UNREAL! Felt like I was being beaten with ball bats, ripped apart, shocked with electric all at once. Once I got to the point where I knew I wasn't going to need to drive myself anywhere, I took some vicuprofen (which does help with cramps) and kept up with the calming thoughts. I took a few hot showers, an epsom salt soak. By dawn, I was a bit better.

I didn't get any sleep. I happened to have a family doctor appointment that morning. My doc is my primary doc for treating my RSD - she had never seen me when I was "bad"... she wanted to give me steroids, a shot of something - do something for me. I turned her down. I told her I would be better when the weather improved. She asked how I got through the night, and was amazed when I said with meditation. I told her it's a matter of staying calm and not being afraid of the pain. She again mentioned that she thinks I need to quit working and go on disability. I don't want to do that.... I can do my job, I love it, and it pays better than not working, and the insurance is surely better. She did insist that I try Wellbutrin again. She's big on antidepressants for pain, and I had bad reactions to all of them except wellbutrin. She asked again if I wanted to try going on pain meds all the time - no, I am not ready to do that either.

All of this long story was to tell you a bit about how I got through one of the worst 48 hours I have been through in 5 years. Maybe it will help you.

RSD is a horrid disease. It can take everything from you. I have very few of my friends left. Only 3 of them still come around. Most of the rest of them say they "can't stand to see me like this"... I can't do many of the hobbies I used to. I can't keep my house like I used to. I can't do many of the things I want to do...

Summer --- somehow you have to find a way to focus away from the I can't to what you can. No, I can't breed and grow thousands of daylilies like I used to. Now, instead I sold off almost all of them, used part of the money and bought a really good camera with a macro lens and I take cool flower photos instead. I used to love going to big music festivals - I can't travel and I can't stand the vibration of listening to the music anymore. I sold my stereo system. But I found I CAN listen to the music with an iPod because there is no vibration on my body with the earplugs.

With time, you learn to adapt. Next month, it will be 9 years for me. Give yourself a break, sweetie. RSD is a huge challenge.

And, you NEVER know. You may be one of the ones that one day it just starts to get better - and it does - and it never comes back. It does happen! My half sister will never know if she will be one of those. As long as we keep trying, and keep going - we have that chance!!!!!

big hugs, Summer!