Ya Know? We are so self sufficient and always looking at ways to make ourselves more comfortable and so quick to want to share our successes with others. We literally could put together a book of home remedies based on our own trials and errors. Things we find that we have tried and they work.

Sure foks could run to a doc all the time, or they could get our book, information based on time tested and guaranteed results. Suggestion, tips, tricks, hints, solutions, do's, don'ts, etc. I have gotten more relief from reading everyones threads and have saved more money since 2004 just by taking all the great information you all have posted.

I mean think about it. Half the stuff writtten out there comes from folks who don't even have a clue what it is like to have RSD or neuropathy or any side effects of neurological pain. You guys rock! Ladies and Gentlemen - My hat goes off to you!!!

Chin Up

Mark

I have started one many times... and I'd love to get organised enough to finish any of them....

writing is my only way of trying to portray to someone else what this feels like to live with it, watch it destroy your life and then watching it undermine your every attempt to improve/ get better until finally you reach an empasse with the RSD...

It would also be brill to collate a load of everyones tips etc and "what's normal" guide...

thinking.......................................... ..............................................

.................................................. ................................................

ok and procrastinating from essay that still hasn't been done.....

I think it is a great idea though. Could we set up a sticky thread with hints and tips?

Rosie xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

(PS if this is slightly non sensical it's cos my pain is like 1 million and a half at the moment)...

Totally awesome! I'm totally okay with you taking anything I add if you think it's worth including. I would be honored. I know it is pain staking at times and can be overwhelming but the end would be a tremendous reward. I also think the stickies would be great. The site is still so new that you could cut and paste from the exisiting threads to start. Just a thought!!! Chin Up!!

Mark

Mark, why do you keep telling us all to do chin ups? It's pretty hard to grip the bar with these rsd hands ya know!

Be Proud!! Always feel good about yourself. Never let others bring you down. Hang In there. It's never as bad as it really could be. My grandfather always use to say that to me when I was little. "Chin Up There Little Buddy". Always he was saying that to me. "Do the best you can". Put your best foot forward. There will be days when it seems that all else fails. But at least if nothing else - Chin Up! I like it. I think it's simple and sweet. It sums it all up for me. Thats it!!

Chin Up

Mark

I have a host of rare diseases which I don't necessarily consider rare at all. It is just an excuse for doctors to not take me as a patient. My most problematic symtpom is due to lack of brain oxygen. I have Central Sleep Apnea and my study revealed over 1100 apneas in one night. They have no clue as to how to treat it other than stimulants to try and wake me up. I am sitting here now as I usually do at the computer with one eye open and one eye resting.

I spend most of my day looking for whatever it was that I just had in my hand. Mostly I write in journals because somedays that is all I can do. I've tried to write many books because I wanted to do something other than whine in such a queenly manner, but I'm never able to compose anything beyond what I write in one day. I have found that if I am not able to complete a task from beginning to end in one day, then it is a goner because I won't remember tomorrow what I was doing. At the point where long term memory kicks in I'm whistlin dixie and sharper than my husband. But it is that feeling of standing at the middle of the stairs and not know if I was going up or coming down. Chilling. Or if you take a nap late afternoon and wake up around 7:00. Because if it is around dusk I will not be able to discern whether it is a.m. or p.m. and will become thouroughly disoriented, even scared, though I'm not sure why.
I feel somewhat embarrassed to admit that I have received far more helpful information than I have given. To give a heads up, usually I will post but will have a bad day afterwards where I get behind on anyone responding. I don't want anyone to think I'm ignoring them.
Well....to all...Good luck on any literary endeavors.
perfectly Peg

Hi Mark and Friends,
I have been putting together a book in my mind for a few years now and have spent the last two years in a Chrisitan writing program in order to help me with my book. I will be writing one on living and dealing with chronic pain especially with RSD. I have a rough outline of what I want in each chapter but my laptop broke about six months ago and I am trying to sit up and do it and have not gotten real far. I hope to have a laptop within about 2-3 months and can sit in bed and do it. I am trying to get things out of the way so I can concentrate on it but it is real hard. I am glad to hear everyone here thinks it is a good idea. We need to get the word out.
Thanks,
kathy d