LOL, as soon as I get this LAST damn wedding edit off my plate and I have cleaned my house, or I have enough kids around to guide them through the cleaning of the house.

You're so right though Bram. It is our protection. I think I have scared a few docs along the way because I knew too much. Yes... they are "practicing" aren't they?

I too have done lots of research on what we fight thru everyday so I can not only have the knowledge but it helps when you have to explain to a doc and/or nurse who have never even heard of RSD/CRPS I lost count on how many times I've had to explain to docs & nurses. I don't mind the questions I get Id rather get more knowledge of rsd out there & Ive thought of so many things I'd love to do but cant right now. I have so many ideas one being a website deadicated to rsd/crps where people who have it or know someone with it can go & get info on different things like a local support group or if they need help with finding a doc or help getting to a doctor I have lots of ideas about how to help other people with this condition.
I think this site is awesome & of course all of you are too & having the support has been a godsend, but Id like to also have a in person support group I think it would be great meeting other people in my area who deal with the same thing I do ya know what I mean, maybe do like group socials out having drinks or dinner things like that it'd be fun. Anyways that's just some thoughts I had of what Id like to do got a bunch of ideas maybe we can all work together & do something

I think that's a great idea Heidi! Perhaps slowly but surely we'll be able to realize our aspirations.

Lol. I'll be coordinating a UK branch then....or the travel costs might prove expensive!!!!

It would be great to have something involving both countries (and others) so we don't get the whole UK/US divide. After all, we all support and help each other here, and yet live miles away from each other. That should be able to translate into something more definite and real. It would be a massive project, but it would be great to end up one day with something just for CRPS that operated in regional areas so that we could have support groups and meetings, etc., but also had a country-wide aspect with a pooling of information and support.

I've often thought of the whole site thing dedicated to just CRPS, and with organised resources for us to print off for doctors, dentists etc, hospital protocols, new research etc. This site is great for support, but resources aren't easy to find. It's ok for us web-savvy reading folk to do the research, but there must be plenty out there who struggle with that side of things....and as we all know, knowledge is power and protection with CRPS .

The only reason I haven't tried to do it is just the time factor, and the pressure of doing it alone. It would be fab to do as part of a group, where we can pool our ideas and skills and time. I know there are excellent sites around like RSDHope etc, but I just feel there is a need for something more.

Bram.

Hey Bram,
We're completely on the same page & have some of the same ideas about having info/lists for doctors, dentists etc. This is something I've been thinking a lot about & have a lot of ideas that I think are good one of which is meeting & talking with different professions such as dentists, doctors, physical therapist about "donating" their time/services (ex: a dentist does a partial, bridge, or denture for no $ once a month) in return we would give them free "advertising" on our website. We could put a pic of them with their name, company/office name with a link to their website along with like a Bio about them & a special thanks for whatever it is they did or are gonna do.
At some point hopefully sooner than later this will no longer be a dream/wish but a reality!! Plus I think it'd be great to brainstorm/colaberate with ya as well as a couple others & come up with something super awesome
K Im gonna try to get sum sleep hav to get up early & go to a funeral who is with her loved ones & God now.

~HEIDI ~

Has anyone considered raising awareness in your region by doing an interview with the press like the brave 11 year old girl in U.K. did? I thought a bit about it but tnot sure how to make it happen. Seems like a good way to start getting the word out without a huge time commitment. Thoughts??

The interview with that girl did make me think of it Lottie, but I'm not sure if the media would be an interested in a 40-something woman with the same thing......and I worry that it would come across as a 'poor me' thing. I'd love to get awareness increased in my area (I wrote to my MP a few times lol, no interest there!) but do I want to be 'Brambledog, a 40-something mum of two, who has CRPS'? What if that becomes my tag line? I'm not just the CRPS (although some days it does feel like that!!!), and I have a job and my children and husband to think of.

Plus....I'm not very photogenic these days. Never really was! Not sure if I've got the confidence for the bright lights and microphone now. I was on the TV news once very briefly years ago for something, and I know how strangely the interview you do can differ from what the finished item looks like.

I think it is a fab idea though. It's just a question of whether the media folk will be interested enough. I suppose we can always ask!

Major respect to anyone who goes for it!!

Bram.