Guest guest Posted September 25, 2001 Report Share Posted September 25, 2001 In a message dated 09/25/2001 4:28:37 AM Central Daylight Time, Rpolychondritis writes: << This group is full of medical info, but so much more than that. We are full of love for each other and that is just as important as the medical side of RP. >> , You make some excellent points. I can't tell you the amount of great information I've received just from reading others mail where they stated they were having this problem or that problem. Almost immediately someone in the group will respond with..... " this is one of the possible side effects of such-and-such drug. I know you recently started taking the drug, have you talked to you doctor about it? " Or they will relate their experience with the same problem and make suggestions. **That** kind of information you don't get on a medical site. I've also read personal posts from newbies that state they've read the medical information on the various sites, but are so confused, scared and have millions of questions and they're finally getting some much needed sympathy, understanding and, yes, medical information from the group. I am very well aware that all the posts can get overwhelming. As you know, I'm ALWAYS weeks behind in reading them, but I don't want to miss anything, so I RARELY use the delete key but that's always an option open to everyone. I think your and Roy's medical information area would be wonderful and I hope you will do it, but there's so much personal logic/experience that doesn't come through on medical/scientific reports, and only those who've been there can pass along that information. The doctors certainly are no help, and I'm beginning to learn that they get a lot of their " experience " about RP from US...those who have it. Just my two cents worth. I hope you are doing great. As usual, I'm sooo far behind on reading the posts. Love you, T. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2001 Report Share Posted September 25, 2001 In a message dated 09/25/2001 4:28:37 AM Central Daylight Time, Rpolychondritis writes: << This group is full of medical info, but so much more than that. We are full of love for each other and that is just as important as the medical side of RP. >> , You make some excellent points. I can't tell you the amount of great information I've received just from reading others mail where they stated they were having this problem or that problem. Almost immediately someone in the group will respond with..... " this is one of the possible side effects of such-and-such drug. I know you recently started taking the drug, have you talked to you doctor about it? " Or they will relate their experience with the same problem and make suggestions. **That** kind of information you don't get on a medical site. I've also read personal posts from newbies that state they've read the medical information on the various sites, but are so confused, scared and have millions of questions and they're finally getting some much needed sympathy, understanding and, yes, medical information from the group. I am very well aware that all the posts can get overwhelming. As you know, I'm ALWAYS weeks behind in reading them, but I don't want to miss anything, so I RARELY use the delete key but that's always an option open to everyone. I think your and Roy's medical information area would be wonderful and I hope you will do it, but there's so much personal logic/experience that doesn't come through on medical/scientific reports, and only those who've been there can pass along that information. The doctors certainly are no help, and I'm beginning to learn that they get a lot of their " experience " about RP from US...those who have it. Just my two cents worth. I hope you are doing great. As usual, I'm sooo far behind on reading the posts. Love you, T. Quote Link to comment Share on other sites More sharing options...
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