Thx for all ur support
 

I wanted to say from the bottom of my heart to all of u that hav taken time to leave me messages with ideas, words of comfort & concern amoung other things Thank You & although Im still dealing w/the worst flair up Ive had in awhile its been helpful to hav all of you so again I thank you its ment so much & has been helping me thru cuz Im just too stobborn to go to a hospital lol. I hope to one day be able to help others like us that hav rsd/crps weather its helping to get them to the store a doc appt, finding a doc or startin a support group in my area & making this condition we all suffer with & fight with everyday more known than it is but til I can get ssi/dis n get a car its a dream I pray to become a reality oneday. Wishin u all pain free easy dayz ~HEIDI

I'll be hoping this flare subsides very soon, and you have some easier times ahead...:) Flares are horrible things and so exhausting to endure day after day. Take it easy on yourself and I hope today is a better day for you.

Bram :grouphug:

Hey Heidi, I know how you’re feeling. I think I would have gone completely out of my mind long ago had it not been for the support I receive from all the people on this forum. I too want to give back some day by raising awareness via a docu or PSA’s or something. I sure hope you’re able to get some relief soon!

Vrae - that's a beautiful idea. Now, if you only had a free moment!

OMG... right!? :mad: I want to do this SOOO BAD! I work on it in terms of research and collecting data, etc. You would probably either freak or identify with how much research I've done and the collection thereof. I must keep it anyway b/c my memory is all but gone. :o I even have a couple of working titles for it. I will make this happen, I just have no idea when yet. :rolleyes:

Vrae- nope I wouldn't freak. I actually did clinical research for 20 years before this demon forced me to retire.

We are a bunch of educated lasses and lads then :winky: I wouldn't quite say I've read more pieces on CRPS than I've had hot dinners lol....but definitely more than I've eaten barbecues!

It's fascinating and relevant, and it is our protection against crappy medical care and wrong advice....I think that's part of the reason. We have to know as much as we can because nearly everyone we come across will know less about the disease we suffer from than we do...and because there is no agreed treatment protocol for CRPS, all those specialists out there are just guessing and experimenting...and of course some are better at it than others...:rolleyes:

I'm in. When do we start? :winky:

Bram.

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? :rolleyes:

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. :hug:

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

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 :rolleyes:.

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!! :D Plus I think it'd be great to brainstorm/colaberate with ya as well as a couple others & come up with something super awesome :grin:
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...:rolleyes:...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! :winky:

Major respect to anyone who goes for it!!

Bram.

Hi Heidi, I just wanted to let you know that I was thinking of you today and that I hope you're feeling better. My thoughts and prayers are always with you. From your friend, Renee.