Guest guest Posted October 8, 2001 Report Share Posted October 8, 2001 Tonia over the years we have sent Oprah and all the others enough enail to weigh them down forever. they jsut ignore us. Margie in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2001 Report Share Posted October 8, 2001 I for one totally agree with the idea of getting the word out. Until my husband was diagnosed with rsd we had never heard of such a thing.I personally have sent several e-mails to Oprah in hopes of convincing them to do a show on rsd.Perhaps if they were bomb barded with e-mails they would listen.The only thing I have ever seen on tv about this awful disease was on 20/20. A special on chronic pain..and they made it seem curable.All though my husband has only had rsd for 1 year it has spread tremendously and has changed our entire lives. If you have a printable petition PLEASE sent it to me and I will get some signatures for you. Thanks... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2001 Report Share Posted October 8, 2001 I have sent an e-mail to Oprah also, when asked to by another group that I will keep unmentioned. I guess that Oprah ended up getting over 300 e-mails, but hasn't done nothing yet. The 20/20 special was for Dystonia. I watched it also. Thats the bad part about this darn disease, there is too many other things that can go wrong because of the RSD, and no one really wants to do a program on just the RSD because they are too scared to, since that would be too much work to find all the info. On the 20/20 special, for those who didn't watch it, this 17 yr old boy went from normal to having a body that was U shaped at the waist, constant muscle spasms, and constant pain. They ended up going into his brain with a tiny microscope to listen to which nerves was backfiring. Once they found which ones, they put one of the electronic pumps in him, to keep his nerves firing right. He has to go every so often to make sure that it is working right, and will have to have it replaced in 10 years. I can't remember if it is the SCS or the other pump though. Tonia Conyers tonia197426@... Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2001 Report Share Posted October 8, 2001 I wonder why she keeps ignoring all the letters then? Aren't we, the ones that are cursed with this disease as good as her "pet poor"? She can take time to spend millions and millions of money to build the poor houses and give them the houses for them to keep selling their dope and bodies in, she can take the time to even go and help build the house. Why, does she think that she is too good to care about any one else? She isn't the only one in the world that has her face plastered on the TV. There are others. What about the new show that Barbra Walters has, The View? There are more talk shows than just Oprah, or the trash talk like Riki Lake. Those are the ones that we need to get ahold of. What about any magazines? They sometimes takes articles like what we need to get out. Those are just ideas, but just one of us doing the writing isn't enough. That much I do know. Tonia Conyers tonia197426@... Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2001 Report Share Posted October 8, 2001 It was a type of stimulator that stimulated the brain into making the nerves to work right for him. The funny thing is that they were just trying to treat the Dystonia and ended up helping with the RSDS pain. Night line also did a story about a man that they used a stim. implant in his brain to treat the Dystonia and curling of the mans hands from it and it also helped treat the RSDS pain to the point the man was able to go from being bed ridden to back to work in 6 months after the implant was put in and then he had to get a lot of PT to recondition his muscle that had wasted away. Rene'e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2001 Report Share Posted October 8, 2001 Margie I have too , I sent letters to montel, opera, rosie, 20/20 the only response is that we cannot answer all the letters we get.. so what do we get automated letters.. thaNKS BUT NO THANKS.. Tonia over the years we have sent Oprah and all the others enough enail to weigh them down forever. they jsut ignore us. Margie in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2001 Report Share Posted October 8, 2001 tonia I tried Rikki Lake too.. the only things they seem to be interested in is ""my kids are having my husbands kid"" or my daughter has had sex over 50 times and she is only 13.. seems like that is all they are interested in for showes oh yes here is another one.. hummm lets see! how about the "makeovers" to make mommy feel special, cause her daughter is sleeping with her boyfriend or husband. Hey you may not believe this but I wrote a nasty letter to Opera and asked her why they can't do a show on getting the word out on diseases that over 10 million men women and children have.. a painful disorder that controls our lives everyday, instead of stories that really don;t make a good impression on some kid that is a slut, when later in life she has to live that down.. I haven'y gotten any answers yet and I guess I won't but I will continue to ask this question ,, i usually do these letters when I caNNOT sleep... <<<<<<<<UNITED WE STAND GOD BLESS AMERICA>>>>>>>> @@@@OUR HEART AND PRAYERS GO OUT TO EVERYONE@@@@ JEANNEMIKESHAYLA "Causalgia... CRPS.... RSD... Many Names...Many Voices" in One Stands Alone! http://www.amazon.com/exec/obidos/ASIN/1884778879/102-7496509-5121739 Re: Re:Friends with RSD I wonder why she keeps ignoring all the letters then? Aren't we, the ones that are cursed with this disease as good as her "pet poor"? She can take time to spend millions and millions of money to build the poor houses and give them the houses for them to keep selling their dope and bodies in, she can take the time to even go and help build the house. Why, does she think that she is too good to care about any one else? She isn't the only one in the world that has her face plastered on the TV. There are others. What about the new show that Barbra Walters has, The View? There are more talk shows than just Oprah, or the trash talk like Riki Lake. Those are the ones that we need to get ahold of. What about any magazines? They sometimes takes articles like what we need to get out. Those are just ideas, but just one of us doing the writing isn't enough. That much I do know. Tonia Conyers tonia197426@... Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 I wonder why the rsd didn't spread to the brain or head from the surgery to the brain? Hmmm I am still afraid to have the surgery the specialist say I need because of this reason. I will decide this week after a sit down conference with my back surgeon. I am just too afraid to make it worse. Hugs and a pain free minute, Deb (Deborah Genatossio) Debgena@... Listowner rsd-crps "Hope is a thing with feathers that perches in the soul and sings the tune without words and never stops at all " Dickinson Deborah Genatossio Massachusetts Charter Director and Planning Director for American Society for RSD/CRPS (ASRSD/CRPS) PO Box 1397, Abingdon, MD 21009 Toll Free Hotline: 1-866-OUR-PAIN Main Office: (office hours: Mon, Wed, Fri 10 AM to 3PM) online membership: ASRSD_CRPS http://www.americansocietyforrsd-crps.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 LMAO!!!!!!! Thats all those are any more, is Trashtalk TV. What about The View, or Good Morning America? something like those. But, like I said, I don't think that everyone should send a bunch of emails, but maybe one a week with alot of signatures on it. Something like what Tom and Glen and everyone is doing with the petitions for Congress. One big thing. Something that is thought out very well, planned, the whole 9 yards. I've tried to get the local city paper to write a story about RSD, but that was useless too. I know that there can't be too many in my area, although my lawyer seems to think so. I'd like to go to the doctors that they are! But, back to the point. If someone could come up with a way to make it more eye-catching, interesting, and alot of different people signs the bottom, someone higher up is going to notice it sooner or later. Thats just my thoughts on it, since I've only sent one letter and don't really have the experience on it yet. Tonia Conyers tonia197426@... Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 yeah, that was it. My memory froze up again on me, so I couldn't remember it all. I have an article out of Woman's World, that also has something in it about the SCS pump I think. There went my mind again! lol. When I get home, I'll copy it and that way everyone can read it. I just hope that I remember to do that! Tonia Conyers tonia197426@... Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 I did OK with my brain surgery last March and so far from my total knee too, except for the hives that is. Kathy Goldenkranz Aptos, CA 95003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 HEY YOU!!!!!!!!!! HOW ARE YOU? HOW COME YOU HAVENT CALLED US?????????? ITS ME ILENE REMEMBER ME? BEEN WONDERING HOW HAVE YOU BEEN DOING? BUT THATS OK KEEP YOUR NOSE UP IN THE AIR..LOL HAHAHA WOULD LIKE TO KEEP IN TOUCH WITH YOU....SO PLEASE WRITE TO ME YOUR FRIEND ILENE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 To whom are you directing this message? Kathy Goldenkranz Aptos, CA 95003 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 Morning all, I have sent several E-Mails to the Montel show. I have noticed that he has done more shows on little known diseases since his diagnosis. As long as we keep trying I know that sooner or later, hopefully sooner, someone will jump on the band-wagon. Healing Hugs, Gypsy (another Lori in Mich) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 Once we get our National Recognition Month the RSD Community will be News. The media is always looking for something new to put out. We better have our articles and addresses ready to strike while the iron is hot. I would like to get an address list ready to start mailing out letters. (I already have the letter written) I will post it for anybody to use when the time comes. We could send letters to Movie Stars, Music Groups, Radio Personalities, Ardel Rodale from the Prevention Magazine (I love her articles) Better Homes, Readers Digest, Good Housekeeping, etc. Then we would all have the addresses and maybe could do a mass bombardment at the right time. When they want something for RSD Recognition Month. Sandy At 10:11 PM 10/8/2001 -0600, you wrote: Margie I have too , I sent letters to montel, opera, rosie, 20/20 the only response is that we cannot answer all the letters we get.. so what do we get automated letters.. thaNKS BUT NO THANKS.. Tonia over the years we have sent Oprah and all the others enough enail to weigh them down forever. they jsut ignore us. Margie in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 Dear Kathy, I am directing the message to all the wonderful people I have met on this support group over the last year. Many of these people have become dear friends and inspirations even though I have not met them. I am also directing the message to anyone new who would like to sign a petition for our National Recognition Month bills that will be voted on in Congress this November. I guess I have become " the petition pest " . I keep bringing it up. I know that people don't feel well and have so many other problems. I cannot help with medical problems. I can only help with the petition. So that's what I do. I know it must be annoying sometimes. I'm sorry. love, Sandy Rimland -0400, you wrote: >To whom are you directing this message? > >Kathy Goldenkranz >Aptos, CA 95003 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 ~*Yello*~ hi hi hi:) I have decided to write once again:) hehe...and actually write this time.. Things are starting to get abck to normal here. The side effects from de new meds are starting to wear off some, so, i can get back to my school work some, which i am very happy bout..and back to reading de posts..yea.. hehe, i was just reading this post..and i was really curious..what is this " petition " tat u are talkin bout..?!?! a few other lists are tlakin bout it too!! what is it...did i miss sumtin?!?! if someone could kindly fill me in, tat would be awesome..cause i'd really like to know..sounds interestin..tanx a bunch..sending moon beams ur way..kissies n hugs..jelli beans n skittles.. ** In RSD-CRPS@y..., Sandy Rimland <sdr@n...> wrote: > Dear Kathy, > I am directing the message to all the wonderful people I have met > on this support group over the last year. Many of these people have become > dear friends and inspirations even though I have not met them. > I am also directing the message to anyone new who would like to > sign a petition for our National Recognition Month bills that will be voted > on in Congress this November. > I guess I have become " the petition pest " . I keep bringing it > up. I know that > people don't feel well and have so many other problems. I cannot help with > medical problems. I can only help with the petition. So that's what I > do. I know it must be annoying sometimes. I'm sorry. > love, Sandy Rimland > > -0400, you wrote: > >To whom are you directing this message? > > > >Kathy Goldenkranz > >Aptos, CA 95003 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 Hi , The RSD Community decided to go to Washington DC and educate the congress men and women about RSD. Tom and many other wonderful devoted people went four times, a week at a time, over the last two years. They did so much it's hard to believe they accomplished so much. They have been working endlessly during this whole time getting the word out, appearing before congress, etc. We don't even know half of what they did. We were all so proud of them and wanted very much to help. So we started a petition to get out signatures and addresses to our Congress men and women. We now have bills in both houses of Congress for a National Recognition Month for RSD. It will be voted on this November. The Petition states that we are behind these bills. We want a National Recognition Month. We want our congressmen and women to vote for our bill. When Congress gets petitions with signatures they listen. They want people to vote for them. So we are sending our names and addresses in - to be counted - to make a loud noise - so they will know we are here and we need help. That's what the petition is all about. You have to be of voting age to sign it. If you would like to get signatures I will attach one for you. It has to be in soon as the vote is in November. We have a contest running for who gets lots of signatures. There are many prizes. But you don't have to get a lot. Just 2 or 3 means a lot. I mean it. Hope you're having a decent day. love, Sandy Rimland At 11:34 PM 10/9/2001 +0000, you wrote: >~*Yello*~ > hi hi hi:) I have decided to write once again:) hehe...and actually >write this time.. Things are starting to get abck to normal here. >The side effects from de new meds are starting to wear off some, so, >i can get back to my school work some, which i am very happy >bout..and back to reading de posts..yea.. hehe, i was just reading >this post..and i was really curious..what is this " petition " tat u >are talkin bout..?!?! a few other lists are tlakin bout it too!! what >is it...did i miss sumtin?!?! if someone could kindly fill me in, tat >would be awesome..cause i'd really like to know..sounds >interestin..tanx a bunch..sending moon beams ur way..kissies n >hugs..jelli beans n skittles.. >** > > >In RSD-CRPS@y..., Sandy Rimland <sdr@n...> wrote: > > Dear Kathy, > > I am directing the message to all the wonderful people I >have met > > on this support group over the last year. Many of these people >have become > > dear friends and inspirations even though I have not met them. > > I am also directing the message to anyone new who would >like to > > sign a petition for our National Recognition Month bills that will >be voted > > on in Congress this November. > > I guess I have become " the petition pest " . I keep >bringing it > > up. I know that > > people don't feel well and have so many other problems. I cannot >help with > > medical problems. I can only help with the petition. So that's >what I > > do. I know it must be annoying sometimes. I'm sorry. > > love, Sandy Rimland > > > > -0400, you wrote: > > >To whom are you directing this message? > > > > > >Kathy Goldenkranz > > >Aptos, CA 95003 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 Well HELLO ILENE! That sure is a good way of getting us all to wake up a little, that is if you aren't too drugged to notice. Hope You have a Pain Free Day. Gentle Hugs Selene > HEY YOU!!!!!!!!!! > > HOW ARE YOU? HOW COME YOU HAVENT CALLED US?????????? ITS ME ILENE REMEMBER > ME? BEEN WONDERING HOW HAVE YOU BEEN DOING? BUT THATS OK KEEP YOUR NOSE UP > IN THE AIR..LOL HAHAHA > WOULD LIKE TO KEEP IN TOUCH WITH YOU....SO PLEASE WRITE TO ME > > YOUR FRIEND > ILENE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 I will sissy.. I have been very very sick with the flu but getting back on now for a while everynite.. I will try to call this weekend IF you are going to be home! <<<<<<<<UNITED WE STAND GOD BLESS AMERICA>>>>>>>> @@@@OUR HEART AND PRAYERS GO OUT TO EVERYONE@@@@ JEANNEMIKESHAYLA "Causalgia... CRPS.... RSD... Many Names...Many Voices" in One Stands Alone! http://www.amazon.com/exec/obidos/ASIN/1884778879/102-7496509-5121739 Re: Re:Friends with RSD HEY YOU!!!!!!!!!! HOW ARE YOU? HOW COME YOU HAVENT CALLED US?????????? ITS ME ILENE REMEMBER ME? BEEN WONDERING HOW HAVE YOU BEEN DOING? BUT THATS OK KEEP YOUR NOSE UP IN THE AIR..LOL HAHAHA WOULD LIKE TO KEEP IN TOUCH WITH YOU....SO PLEASE WRITE TO ME YOUR FRIEND ILENE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 Kathy she is directing this to me,,I stayed with her and 'Sharyn while I was in SC// <<<<<<<<UNITED WE STAND GOD BLESS AMERICA>>>>>>>> @@@@OUR HEART AND PRAYERS GO OUT TO EVERYONE@@@@ JEANNE MIKE SHAYLA " Causalgia... CRPS.... RSD... Many Names...Many Voices " in One Stands Alone! http://www.amazon.com/exec/obidos/ASIN/1884778879/102-7496509-5121739 Re: Re:Friends with RSD > To whom are you directing this message? > > Kathy Goldenkranz > Aptos, CA 95003 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2001 Report Share Posted October 9, 2001 I plan on it as far as I know, we don't have any thing going on for thes weekend. Love, Rene'e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2001 Report Share Posted October 10, 2001 Sandy, If you would like, I could keep track of all the addresses for you. I don't do much out of the house, and with the Iowa winters, It will be even less! So, If there is anything I can do to help, let me know Tonia Conyers tonia197426@... Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2001 Report Share Posted October 10, 2001 Sandy some of us have been trying for over 4 years to get some of the talk shows to listen to us. They either ignore us or give us a thanks but no thanks letter. I think I was the most disappointed in Montel especiallly after he went public with his MS. Margie in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2001 Report Share Posted October 10, 2001 Hi Tonia, I'm not sure how to go about it yet. What I'm doing now is just writing down all the people I would like to contact and then will find out the best way to reach them, via magazines like Prevention, their managers or agents, their homes, their fan clubs, etc. I don't mind writing the letters or stuffing envelopes but I really would like them to read it....Last year I bombarded all the stations emails, ABC, NBC, CBS, Oprah, Rosie, and got one turn down. There must be a more efficient way to do this. Maybe if I enclose a dollar bill they would read it. I'd better go buy a lottery ticket to get enough money to do that....anyway, thanks for the offer. I will remember it and take you up on it as soon as I figure out the right way to do this. Hugs, Sandy Rimland At 12:04 PM 10/10/2001 -0500, you wrote: Sandy, If you would like, I could keep track of all the addresses for you. I don't do much out of the house, and with the Iowa winters, It will be even less! So, If there is anything I can do to help, let me know Tonia Conyers tonia197426@... Get your FREE download of MSN Explorer at http://explorer.msn.com Yahoo! Groups Sponsor Quote Link to comment Share on other sites More sharing options...
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