Vanessa,

Good for you to be so proactive to ensure you get the very best treatment possible. I believe you have not been well lately so this takes a lot of courage and strength from you
As I have said in another post, I think it is so very wrong that you are forced to raise your own funds when you think of some of the bizarre money wasting excercises our governments perform.
Heaps of luck
Tayla

Go for it Nessy. Sounds a great idea. But wouldn't it be cheaper and mroe effective to have it done in Germany? If you came over my family or Lana would be happy to help if needed so you might only need one ticket out here. I think the full on coma is more effective than the just the awake or low dose one. Great idea to fund raise.

It is so unfair that we have to pay for treatment/ stuff that helps. I personally have spent at least $15,000 since being diagnosed on private medical opinions, different treatments including HBOT and medical equipment. However it has got to a point where I can't afford to finance these things any more and I know that the only thing that is likely to help me is the pump (which I will be evalulated for this month! hooray!).

Good luck with it, will have a think and see if I can come up with any ideas. Maybe we should just write our book and raise money for RSD at the same time?

Love ya

Froggsy xxxxxxx

Tayla- no, I haven't been well at all. I had to go to the ER for problems, we've been rearranging meds and all that. It has been rough, especially being so young and trying to get school wrapped up. I have been bed bound more often than not, as well as rarely being able to go out anywhere (which is rough at my age!). Thanks, Tayla!


ANGEL WING- I didn't know of it until several of you rooted out the web address. Thanks SO much, mom and I have been looking at it- looks great! Only thing we were unsure about is if they would do flights for consultations in addition to the actual treatment?

Thanks everyone, you are all great!


Will email you! Wonderful idea, that would be awesome- I already have tons of ideas!

I hope you can see Dr. harbut or Dr. Schwartzman they are the best!Of course I love Dr.Schwartzman he has saved my life! CZ

Right now I see Dr ------- in Bethlehem, PA but for the Ketamine treatments I would see Dr. Harbut. My doctor doesn't do Ketamine treatments right at this time, but he said as things become available he will. I am going to talk in depth with Dr. ----- about the Ketamine treatments from Dr. Harbut. Dr. ------ has to help fill out all the paperwork and such, and I am certain he would agree I should go to Arkansas to get this done.

I wanted to see Dr. Schwartzman but he won't take me since I am under 18 (I am 17), and his waiting list is 2 years long!

Thanks, CZ! Also, yes, you did answer my questions in the Ketamine thread.

My heart breaks for the young ones with this disease. I can't imagine how I would feel if any of my 6 were to get it. I have often said that I was glad it was me and not anyone else in my family.
I guess one positive Vanessa is that your age may help the outcome of your treatments.---Let's keep fingers crossed for you.
Take care
Tayla

are you finding anything?

I found a few sites with ideas and tips-
http://www.profitquests.com/FundraisingIdeas.html
http://www.fasttrackfundraising.com/
http://fundraiser-finder.com/
http://www.fund-raising.com/
http://www.stepbystepfundraising.com/

I think it's rough at any age... but I am most frustrated when I think on everything I've missed out on. Even though I have amazing friends who will do anything to help and awesome carers it's not the same as sneaking out of your bedroom window to meet a guy, or going up onto the roof for a sneaky cigarette. Walking in the door and pretending you haven't been drinking. going camping when you should be in class or accidently staying over your boyfriends too long. Instead it's have you got tablets/ carer/ wheelchair/ equipment/ will you be out long/ have you made that appointment/ you can't be serious! you can't sit for more than 2 hours/ where's your brace/ why haven't you got your leg splints on/ Why aren't you on the pressure mattress/ you looked tired I'm turning the computer off now etc etc etc. It is so infuriating.

If you can have the treatment then go for it Ness!!

email you soon babes - my spine is still getting worse and it is driving me nuts so I can't sit for long at the moment at the computer.

Love

Frogga xxxxxxxxxxxxxxx

your cute clay items posted here once. Can you post all the items you already have for sale, I know I for one am thinking Christmas gifts and maybe there are others that would be interested in buying gifts from you. You could post the pictures with item number, price and as they sell remove the picture.Or is my mind just to simple and things don't work that way? My son likes to tell me we don't live in Mayberrry.

And I totally agree with Tayla, you should not have to raise your own funds for much needed treatment. Sorry I don' have any thing better to offer. But you are always lifted up in my prayers!! Carose

I am currently selling vintage jewelry that I repair or redo by using various pieces to form one. I plan to eventually have my own website, for now I sell on ebay. I send proceeds to RSD and RP (another family member has the RP). I hope to one day make more and more but for now, my hands don't work well enough to make many a day. I have had lots of support from friends and family. I started simply by sending an email to those closest to me explaining about RSD and my life and I now get donations of jewelry from people I don't even know. I then create and add to my ebay store for fund-raising. I have only raised $375 so far but for being out there only 1 month, it's not bad. I did pull the heartstrings, but with RSD, I feel we need to do all we can to survive. I was supposedly on lists for ketamine but I continually get skipped over. I was ready to go to Arkansas too but for the amount of money, I will wait and give to research and hope that one day it is a common practice. There are a lot of rules and regulations for donating that I did not know about. Keep all records of your expenses and profits. Good luck, I think that you have a good idea.