Guest guest Posted September 12, 2001 Report Share Posted September 12, 2001 Dear Jim, I have wondered about you often, also Arto who doesn't post a lot. I'm so happy you are doing as well as you are. What a guy!!! I'm hanging in their, one darn thing after another but that's to be expected. It is always such a comfort to know you are not alone in this disease. It would be such a blessing if we could just find out the right meds, the right doctors. Like you said you talked to dozens of doctors who are clueless. The AMA should be ashamed. We are here as a group and will help anyone, with our limited and experience knowlege. It is so GREAT to hear from you.....Sue Marth Take Care of YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2001 Report Share Posted September 12, 2001 Dear Jim, I have wondered about you often, also Arto who doesn't post a lot. I'm so happy you are doing as well as you are. What a guy!!! I'm hanging in their, one darn thing after another but that's to be expected. It is always such a comfort to know you are not alone in this disease. It would be such a blessing if we could just find out the right meds, the right doctors. Like you said you talked to dozens of doctors who are clueless. The AMA should be ashamed. We are here as a group and will help anyone, with our limited and experience knowlege. It is so GREAT to hear from you.....Sue Marth Take Care of YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2001 Report Share Posted September 12, 2001 In a message dated 9/12/01 11:25:19 AM Pacific Daylight Time, grandm4@... writes: << such a blessing if we could just find out the right meds, the right doctors. Like you said you talked to dozens of doctors who are clueless. The AMA should be ashamed. >> Sue M, hopefully the Foundation can one day change this!!! That is our goal... hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2001 Report Share Posted September 12, 2001 In a message dated 9/12/01 11:25:19 AM Pacific Daylight Time, grandm4@... writes: << such a blessing if we could just find out the right meds, the right doctors. Like you said you talked to dozens of doctors who are clueless. The AMA should be ashamed. >> Sue M, hopefully the Foundation can one day change this!!! That is our goal... hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2001 Report Share Posted September 12, 2001 (((Jim))) So good to see a post from you. I was wondering what had happened to you. Thank God for our phone bandit. She will get everyone to post. LOL Love you Heidi and thank you for getting Jim back online. Sure miss hearing from you my friend. Try and post more often. We love to hear good news about RP. Take care Jim and looking for more posts from you in the future. susan w >>>>>>>>>>>>>>>>>>>>>>>> Hi Group It appears the Phantom had a very busy Sunday. She has asked me to post, because I am one of the old menbers. I think I was member number 11 to join this group.Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2001 Report Share Posted September 12, 2001 (((Jim))) So good to see a post from you. I was wondering what had happened to you. Thank God for our phone bandit. She will get everyone to post. LOL Love you Heidi and thank you for getting Jim back online. Sure miss hearing from you my friend. Try and post more often. We love to hear good news about RP. Take care Jim and looking for more posts from you in the future. susan w >>>>>>>>>>>>>>>>>>>>>>>> Hi Group It appears the Phantom had a very busy Sunday. She has asked me to post, because I am one of the old menbers. I think I was member number 11 to join this group.Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2001 Report Share Posted September 12, 2001 Jim, it is so good to hear from you again... See... the phone bandit will make you come out of the woodwork. LOL We love to hear you ramble... do it more often... Glad to hear that you are doing well. Are we going to have to send you a date book, like the one that Patty got???? It will remind you to post to us once a week. LOL Keep in touch. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2001 Report Share Posted September 12, 2001 Jim, it is so good to hear from you again... See... the phone bandit will make you come out of the woodwork. LOL We love to hear you ramble... do it more often... Glad to hear that you are doing well. Are we going to have to send you a date book, like the one that Patty got???? It will remind you to post to us once a week. LOL Keep in touch. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2001 Report Share Posted September 17, 2001 Dear Jim O love, hugs and hope Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2001 Report Share Posted September 17, 2001 Dear Jim O love, hugs and hope Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2001 Report Share Posted September 17, 2001 Dear Jim: I just read your post to the group and it brought back memories when I felt so alone with RP. I wouldn't trade one person on this group for anything. We are like family and the Oklahoma weekend reinforced that to me and my husband. Your right about asking questions, that is how we all learn about RP because most of our doctors don't know too much about the this mystery disease. One other thing I want to mention. DR Buckner us about to begin her second leg of her research and again is seeking people with the disease. Remember her research is going to help us someday and heaven forbid possibly our children or grandchildren. research is VITAL to finding the cause. Proper treatment that maybe isn't so toxic, and hopefully a cure. She needs us all to participate. We all have to go to the doctors anyway and have blood drawn so what is an extra tube or two. She pays all expenses, and you will be helping find a cure for RP. SO please contact Lu and tell her your interested. Last I heard she only had twelve names, that is horrible when you consider the amount of members this support list has. SO come on people sign up for the research project. This is probably the beginning of things we rpers have to do but if it finds s cure isn't it worth a little inconvenience? love, hugs and hope Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2001 Report Share Posted September 17, 2001 Dear Jim: I just read your post to the group and it brought back memories when I felt so alone with RP. I wouldn't trade one person on this group for anything. We are like family and the Oklahoma weekend reinforced that to me and my husband. Your right about asking questions, that is how we all learn about RP because most of our doctors don't know too much about the this mystery disease. One other thing I want to mention. DR Buckner us about to begin her second leg of her research and again is seeking people with the disease. Remember her research is going to help us someday and heaven forbid possibly our children or grandchildren. research is VITAL to finding the cause. Proper treatment that maybe isn't so toxic, and hopefully a cure. She needs us all to participate. We all have to go to the doctors anyway and have blood drawn so what is an extra tube or two. She pays all expenses, and you will be helping find a cure for RP. SO please contact Lu and tell her your interested. Last I heard she only had twelve names, that is horrible when you consider the amount of members this support list has. SO come on people sign up for the research project. This is probably the beginning of things we rpers have to do but if it finds s cure isn't it worth a little inconvenience? love, hugs and hope Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 Hi Angie, It is so good to see your post again.I am happy to hear that you made it to the Okie meeting. I am sorry I could not make it. I hope you are feeling better. I don't have much time to be on line these days.But I try to read most of the post,and I think of the RP family every day. Gotta get back to work. You take care. Thanks for being you. Love Ya Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 Hi Angie, It is so good to see your post again.I am happy to hear that you made it to the Okie meeting. I am sorry I could not make it. I hope you are feeling better. I don't have much time to be on line these days.But I try to read most of the post,and I think of the RP family every day. Gotta get back to work. You take care. Thanks for being you. Love Ya Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 In a message dated 09/18/2001 1:09:36 AM Central Daylight Time, rpawareness@... writes: << SO please contact Lu and tell her your interested >> AAngie, I'm sorry, I was so far behind in my messages that I started deleting (I know, I know, but I had over 900 messages!). I will send an email to Lu immediately to count me in for the blood tests, it's not like they're not always sticking needles into me anyway! Thanks for the info. I hope you are doing well, I'm so glad that even while I'm typing, I can picture most of the group clearly in my mind...at least I remember something!!! Love, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 In a message dated 09/18/2001 1:09:36 AM Central Daylight Time, rpawareness@... writes: << SO please contact Lu and tell her your interested >> AAngie, I'm sorry, I was so far behind in my messages that I started deleting (I know, I know, but I had over 900 messages!). I will send an email to Lu immediately to count me in for the blood tests, it's not like they're not always sticking needles into me anyway! Thanks for the info. I hope you are doing well, I'm so glad that even while I'm typing, I can picture most of the group clearly in my mind...at least I remember something!!! Love, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 Hi Angie this is . I had emailed Dr Buckner and she sent me a packed and i sent it back to her. Do you know if she needs more samples from the same people who have already sent samples? Let me know if you can, thanks Re: THE PHAMTOM CALLER Dear Jim: I just read your post to the group and it brought back memories when I felt so alone with RP. I wouldn't trade one person on this group for anything. We are like family and the Oklahoma weekend reinforced that to me and my husband. Your right about asking questions, that is how we all learn about RP because most of our doctors don't know too much about the this mystery disease. One other thing I want to mention. DR Buckner us about to begin her second leg of her research and again is seeking people with the disease. Remember her research is going to help us someday and heaven forbid possibly our children or grandchildren. research is VITAL to finding the cause. Proper treatment that maybe isn't so toxic, and hopefully a cure. She needs us all to participate. We all have to go to the doctors anyway and have blood drawn so what is an extra tube or two. She pays all expenses, and you will be helping find a cure for RP. SO please contact Lu and tell her your interested. Last I heard she only had twelve names, that is horrible when you consider the amount of members this support list has. SO come on people sign up for the research project. This is probably the beginning of things we rpers have to do but if it finds s cure isn't it worth a little inconvenience? love, hugs and hope Angie DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 Hi Angie this is . I had emailed Dr Buckner and she sent me a packed and i sent it back to her. Do you know if she needs more samples from the same people who have already sent samples? Let me know if you can, thanks Re: THE PHAMTOM CALLER Dear Jim: I just read your post to the group and it brought back memories when I felt so alone with RP. I wouldn't trade one person on this group for anything. We are like family and the Oklahoma weekend reinforced that to me and my husband. Your right about asking questions, that is how we all learn about RP because most of our doctors don't know too much about the this mystery disease. One other thing I want to mention. DR Buckner us about to begin her second leg of her research and again is seeking people with the disease. Remember her research is going to help us someday and heaven forbid possibly our children or grandchildren. research is VITAL to finding the cause. Proper treatment that maybe isn't so toxic, and hopefully a cure. She needs us all to participate. We all have to go to the doctors anyway and have blood drawn so what is an extra tube or two. She pays all expenses, and you will be helping find a cure for RP. SO please contact Lu and tell her your interested. Last I heard she only had twelve names, that is horrible when you consider the amount of members this support list has. SO come on people sign up for the research project. This is probably the beginning of things we rpers have to do but if it finds s cure isn't it worth a little inconvenience? love, hugs and hope Angie DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 Hi glad you doing ok . Now to your ? here . When was it you send DR. Buckner your Blood ??? If it was a long time ago then YES she would like to have it again. Unless it was only a week ago. She most likely will ask this of us now and then OK Heidi Hi Angie this is . I had emailed Dr Buckner and she sent me a packed and i sent it back to her. Do you know if she needs more samples from the same people who have already sent samples? Let me know if you can, thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2001 Report Share Posted September 18, 2001 Hi glad you doing ok . Now to your ? here . When was it you send DR. Buckner your Blood ??? If it was a long time ago then YES she would like to have it again. Unless it was only a week ago. She most likely will ask this of us now and then OK Heidi Hi Angie this is . I had emailed Dr Buckner and she sent me a packed and i sent it back to her. Do you know if she needs more samples from the same people who have already sent samples? Let me know if you can, thanks Quote Link to comment Share on other sites More sharing options...
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