Guest guest Posted March 18, 2001 Report Share Posted March 18, 2001 Yep, I answered it too. I hope everyone does, so maybe we can get some recognition for this damn disease. It would be great Glenda, it would be wonderful. Thanks! W >>>>>>>>>>>>>>>>>>>>>> , I wrote to this site. Hope it gets results. Maybe if enough of us write, they will publish something on it in the magazine or maybe the television show. Wouldn't that be great! Then someone would certainly take notice of us! Lots of Love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Hi , I, too, received word of Oprah's request and I sent a post to the group this morning....but Yahoo being what it is....shall we say tempermental? I haven't seen it on the list yet, and I sent it an hour ago.... Anyway...here it is, would you please send it on? Thank you dear lady :-) " Hi Everyone :-).....be it good morning, good evening, or good afternoon! Here's your chance to publicize RP on the Oprah show or maybe in her magazine. After you take just a few minutes to complete the survery for Ann's daughter......hint! nag! or nudge :-) or beg.....please???? send your story to Oprah concerning the following: Do You Use The Internet for Health Information? We at O, The Oprah Magazine, are looking for women who have read health information on the Internet that has had a significant impact on their lives. Did you investigate something you suspected might have been wrong or learned more about a newly diagnosed illness? Has the Web helped you find answers to questions you didn't or couldn't ask your own doctor? Tell us your stories. http://oprah.oxygen.com/tows/intheworks/plugs_580.html PR'ers........BEFORE you hit the send button with your letter to Oprah, cut and copy it so you will have a copy.....hopefully to send to us here at the group, OK? Don't procrastinate on this....I don't know what their time frame is, but it could be very small!! As most of you guys already know.....in addition to dermatomyositis, a rheumatic disease, I also have what " might be RP " but it is not definite, and therefore I cannot really complete the above mentioned survey, but I do strongly equate my return to health to the antibiotic protocol, which Dr. Trentham sometimes uses for his RP patients......there is a connection somewhere! Here is a copy of the letter I sent to Oprah: Dear Oprah, Where would I be without the Internet? Probably attached to a motorized wheelchair, unable to do even moderately physically challenging activities for myself. I have dermatomyositis, which is a skin and muscle wasting disease, included in the rheumatoid arthritis family. Standard treatment for most rheumatic diseases calls for prednisone, which causes many serious side effects, too numerous to mention, and they are also commonly treated with other immune suppressing drugs such as methotrexate. My illness began four years ago, and coincidentally, in order to communicate via email, my then college-bound son showed me how to navigate the internet. I spent hours, fascinated by all of the information available on the web....including the various health related sites. I looked up 'rheumatoid arthritis' and found out that it involves so much more than not being able to open a pill bottle. Most of the sites I read painted a hopeless and depressing picture of a life-time of pain and suffering... most sites, that is, except for www.rheumatic.org and it's founding mother, Ethel Snooks, will forever be my hero. By urging my doctor to follow the protocol of treating rheumatic diseases with low-dose, long-term antibiotics, as carefully explained in the website, I am now whole again. I cannot adequately describe just how much the internet has positively impacted the path of my life. I am so happy to have my life back that sometimes I just want to run and jump as high as I can, and sometimes, I just do! Take care, Connie Hache " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Hi , I, too, received word of Oprah's request and I sent a post to the group this morning....but Yahoo being what it is....shall we say tempermental? I haven't seen it on the list yet, and I sent it an hour ago.... Anyway...here it is, would you please send it on? Thank you dear lady :-) " Hi Everyone :-).....be it good morning, good evening, or good afternoon! Here's your chance to publicize RP on the Oprah show or maybe in her magazine. After you take just a few minutes to complete the survery for Ann's daughter......hint! nag! or nudge :-) or beg.....please???? send your story to Oprah concerning the following: Do You Use The Internet for Health Information? We at O, The Oprah Magazine, are looking for women who have read health information on the Internet that has had a significant impact on their lives. Did you investigate something you suspected might have been wrong or learned more about a newly diagnosed illness? Has the Web helped you find answers to questions you didn't or couldn't ask your own doctor? Tell us your stories. http://oprah.oxygen.com/tows/intheworks/plugs_580.html PR'ers........BEFORE you hit the send button with your letter to Oprah, cut and copy it so you will have a copy.....hopefully to send to us here at the group, OK? Don't procrastinate on this....I don't know what their time frame is, but it could be very small!! As most of you guys already know.....in addition to dermatomyositis, a rheumatic disease, I also have what " might be RP " but it is not definite, and therefore I cannot really complete the above mentioned survey, but I do strongly equate my return to health to the antibiotic protocol, which Dr. Trentham sometimes uses for his RP patients......there is a connection somewhere! Here is a copy of the letter I sent to Oprah: Dear Oprah, Where would I be without the Internet? Probably attached to a motorized wheelchair, unable to do even moderately physically challenging activities for myself. I have dermatomyositis, which is a skin and muscle wasting disease, included in the rheumatoid arthritis family. Standard treatment for most rheumatic diseases calls for prednisone, which causes many serious side effects, too numerous to mention, and they are also commonly treated with other immune suppressing drugs such as methotrexate. My illness began four years ago, and coincidentally, in order to communicate via email, my then college-bound son showed me how to navigate the internet. I spent hours, fascinated by all of the information available on the web....including the various health related sites. I looked up 'rheumatoid arthritis' and found out that it involves so much more than not being able to open a pill bottle. Most of the sites I read painted a hopeless and depressing picture of a life-time of pain and suffering... most sites, that is, except for www.rheumatic.org and it's founding mother, Ethel Snooks, will forever be my hero. By urging my doctor to follow the protocol of treating rheumatic diseases with low-dose, long-term antibiotics, as carefully explained in the website, I am now whole again. I cannot adequately describe just how much the internet has positively impacted the path of my life. I am so happy to have my life back that sometimes I just want to run and jump as high as I can, and sometimes, I just do! Take care, Connie Hache " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Hi , I, too, received word of Oprah's request and I sent a post to the group this morning....but Yahoo being what it is....shall we say tempermental? I haven't seen it on the list yet, and I sent it an hour ago.... Anyway...here it is, would you please send it on? Thank you dear lady :-) " Hi Everyone :-).....be it good morning, good evening, or good afternoon! Here's your chance to publicize RP on the Oprah show or maybe in her magazine. After you take just a few minutes to complete the survery for Ann's daughter......hint! nag! or nudge :-) or beg.....please???? send your story to Oprah concerning the following: Do You Use The Internet for Health Information? We at O, The Oprah Magazine, are looking for women who have read health information on the Internet that has had a significant impact on their lives. Did you investigate something you suspected might have been wrong or learned more about a newly diagnosed illness? Has the Web helped you find answers to questions you didn't or couldn't ask your own doctor? Tell us your stories. http://oprah.oxygen.com/tows/intheworks/plugs_580.html PR'ers........BEFORE you hit the send button with your letter to Oprah, cut and copy it so you will have a copy.....hopefully to send to us here at the group, OK? Don't procrastinate on this....I don't know what their time frame is, but it could be very small!! As most of you guys already know.....in addition to dermatomyositis, a rheumatic disease, I also have what " might be RP " but it is not definite, and therefore I cannot really complete the above mentioned survey, but I do strongly equate my return to health to the antibiotic protocol, which Dr. Trentham sometimes uses for his RP patients......there is a connection somewhere! Here is a copy of the letter I sent to Oprah: Dear Oprah, Where would I be without the Internet? Probably attached to a motorized wheelchair, unable to do even moderately physically challenging activities for myself. I have dermatomyositis, which is a skin and muscle wasting disease, included in the rheumatoid arthritis family. Standard treatment for most rheumatic diseases calls for prednisone, which causes many serious side effects, too numerous to mention, and they are also commonly treated with other immune suppressing drugs such as methotrexate. My illness began four years ago, and coincidentally, in order to communicate via email, my then college-bound son showed me how to navigate the internet. I spent hours, fascinated by all of the information available on the web....including the various health related sites. I looked up 'rheumatoid arthritis' and found out that it involves so much more than not being able to open a pill bottle. Most of the sites I read painted a hopeless and depressing picture of a life-time of pain and suffering... most sites, that is, except for www.rheumatic.org and it's founding mother, Ethel Snooks, will forever be my hero. By urging my doctor to follow the protocol of treating rheumatic diseases with low-dose, long-term antibiotics, as carefully explained in the website, I am now whole again. I cannot adequately describe just how much the internet has positively impacted the path of my life. I am so happy to have my life back that sometimes I just want to run and jump as high as I can, and sometimes, I just do! Take care, Connie Hache " Quote Link to comment Share on other sites More sharing options...
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