Here is Jennie, the lady that got RSD pass as law
 

http://www.painfoundation.org/page.a...WhiteStory.htm

This is Jennie White, she just sent me an email that she is going to be on TV here, talking about RSD, I will let you all know, as soon as I find out,
also she ask me to post this on here, please take a min and read about her
I am hoping when she dose get on TV we are going to find a way to post it on here so outers can watch it, smiles, hope it works out

thank you
Peace
Kelly
:grouphug:

Thank you so much for sharing this with us, Kelly!!! How awesome that she has worked so hard to get "our" name out there and has given us such a brave face as well!! Please keep us posted on whether she makes it to TV and definitely try to find a way for us to all see it. We're all behind her!!!!

Thanks!
 

Hi Kelly,
Thanks for the information! I wish I felt like advocating for all of us more. I got some oxygen and need to do some dives. My original injury site, the right shoulder surgery is really acting up. It is also frozen and is so difficult to use right now. I am thankful for those that can and will advocate for us!:Thanx: Thanks again. I know you have full body RSD as well, so I hope you are getting along in these cold months. Thanks again! Hard to type now, I'll respond to your pm soon. Love Di

Hello Di
oh no don't be sorry, about that never!
take care of your self,

I can only do so much from my bed also, but we are lucky we have computers that help us, I am going to use every bit of this I can, to do my part also,
I have not a thing to lose, and do not care if I make a lot of noise and what they think of me, haaaaaaaaaa
Jannie was the 1st lady I went to about having RSD, she has been a great help
she is also with the American Pain Foundation , and thinks we all should join,
I am with them also, smiles lots of good info,

hay thank you mominpain,
I will sure keep you posted as soon as I hear that its going to run I am going to post it on here, smiles

Peace
:grouphug:

thanks
 

i have emailed with jennie a few times back when she was working on the bill....she is also from michigan...........she has been a big influence.............
i am glad to hear she will be on tv talking of rsd......please keep us informed as to when, and all the details..............

Thank you,,gramma

yes she only lives about a little over an hr from me, she is all some!
I guess she is also in contact with the RSD foundation in Milford CT,
I have talk with Jim there,,I think that is his name, and he knows here very well there, we need more people like her,

I hope she was a help to you when you where emailing her,
smiles
and thank you again
Peace
Kelly
PS as soon as I hear about her being on TV, I am posting,,,smiles

Hi

Thanks for sharing that info with us.

I checked out the link - it appears that Jannie has been successful on a state level only, so that the new pain law is effective in Michigan.

I am a member of RSDSA (in Milford, CT, the director is Jim Broatch) but not the National Pain Foundation. I will have to check it out!

Diana, I am so sorry that you are having a tough time right now, I hope the dives help you. Did you say you have tried Lidocaine and/or Ketamine yet? I know you have had RSD for over 20 years. I am getting my first Lidocaine infusion in a few weeks, the blocks were becoming less with each successive one. They only do it for an an hour at a time, the subcutaneous actually sounds better....but I have to go with what it offered by my PM for now. Have you ever made an appt with Dr. S at Drexel in Philly?

Take care, Sandy

Hello Sandy,

yep that is him ,,, thank you smiles:hug:

Thanks Sandy
 

Thanks Sandy!
Ketamine was suggested to me but I declined. I really don't understand the lidocaine blocks. I had three series of stelate ganglion blocks early in treatment. They did 10 over ten days. I did this three times. Can you explain the difference ? Will you let me know how this works for you ? The HBOT works great, but takes three hours out of a day and there are side effects. I really need to do 40 dives and then maintain with maintence dives. But after 20 dives I usually stop.
Thanks for caring, sometimes this is a really tough row to hoe! I hope you are doing well. Thanks again! Di

Hello Di

I am sorry to hear you are not doing well,
What is that you are talking about? what is a dives? and what are the side effects?

hugs
Kelly

Thanks Kelly
 

Kelly,
I have a picture of my HBOT chamber on my profile. When I settle down later
I'll pm tonight with details. Thanks for caring. Later Di:Heart:

Di,
I am late in the game catching up with you, but I am so sorry you're struggling so much right now. I hope that the dives bring you some relief soon and that you can get your pain under control. My thoughts and prayers go out to you. Please write when you're feeling better!!

Thanks Hon
 

Thank you I appreciate that. Take care of your sweet self! I'll try to write tonite. Miss talkin to ya. Love Di

Dear Diana,

I am sorry that your father has been sick - please let us know how he is doing.

Lidocaine is administered via IV infusion right into a vein. I have heard that the Drexel clinic (Philly) runs the IV's for 4-5 hours a day for a week or two. I am scheduled for my first one hour infusion in a week and a half in Boston. You need to be connected to a heart monitor during the treatment.

I have read that the longer infusions have been reported to be very successful for some people, especially those with SIP that haven't responded to the blocks. Perhaps it is something that you could try. I don't remember where you live. In addition to Drexel, there's an RSD clinic in Tampa. Other people on these boards have talked about Calif and NY doctors that treat them with Lidocaine, too.

Even though I live about 5 hours away, I made an appt with Dr. S at Drexel in Philly for a year and a half from now. I can always cancel it.

Let us know how you are doing, Sandy