Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 Dear , I think I've had RP for 20+ years. It does go into remission which I had from 99 to last fall. We cannot feel sorry for ourselves, which I'm doing right now. Live every day to its fullest we are not all doomed.....Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 Dear , I think I've had RP for 20+ years. It does go into remission which I had from 99 to last fall. We cannot feel sorry for ourselves, which I'm doing right now. Live every day to its fullest we are not all doomed.....Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 Dear , I think I've had RP for 20+ years. It does go into remission which I had from 99 to last fall. We cannot feel sorry for ourselves, which I'm doing right now. Live every day to its fullest we are not all doomed.....Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 THIS IS DIANA J. FROM RALEIGH NC.. I'M FELL SO BAD FOR LYLE'S FAMILY. WAS HE AN EXCEPTION OR ARE WE ALL SITTIN G ON BORROWED TIME..HE HAD RP FOR 3 YEARS ??? HOW BAD WAS IT.. I JOINED TOO LATE TO GET AQUAINTED WITH ALOT OF GOOD PEOPLE..WHO HAVE SINCE LEFT US.. IT IS SO SCARY SOME TIMES..YOUR RIGHT WE NEED TO DO ANY AND EVERYTHING TO FIGHT THIS DARN THING...PLEASE POST BACK... AND THANKS TO THE PEOPLE WHO SENT ME ALL THE INFO I'M TAKING IT TO MY ENT MAY 7TH..AND ASKING FOR A RHEUMY AND WHAT EVER ELSE I CAN THINK OF...I'M TOO YOUNG TO DIE..I'LL ONLY BE 50 IN FEB.... LOL AND PRAYERS FOR EVERY ONE DIANA J --- Rpolychondritis wrote: > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 J, glad that you have some info to take to your doctors. It all helps. That is what we are here for. To help everyone inform their drs. and the public. this is the main goal of the RP Foundation. Once we are in full swing with the foundation, hopefully we will make a difference. Again anyone who has not sent in their contribution, you may send it to: RP Foundation c/o Colloran 775 Bounty Place Manteca, CA 95337 , we are all scared and Lyles passing just brings it closer to home. Remember, we must keep on top of the flares, and try to avoid getting sick. There is alot of support here and alot of hope for the future. I just know we can concur this thing. Keep your chin up, most of us are still living a almost normal life and have things under control. Awareness is the key. If YOU feel something is wrong, get it checked out. I to am only 49 and I plan on another 49 years.... LOL Please don't hesitate if you need anything. Someone will get you the information that you need or be here for you to vent. Have a wonderful weekend. hugs C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 In a message dated 4/27/01 6:24:30 AM Pacific Daylight Time, sabrina@... writes: << We are having to take her back to the hospital now . I hope she recovers from this bout . Sherry >> Sherry, please know that my thoughts and prayers are with you and your mom. Let us know what is happening. Remember, we are here for you whenever you need us. Give Flora a big hug for me...... Hugs C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 In a message dated 4/27/01 6:24:30 AM Pacific Daylight Time, sabrina@... writes: << We are having to take her back to the hospital now . I hope she recovers from this bout . Sherry >> Sherry, please know that my thoughts and prayers are with you and your mom. Let us know what is happening. Remember, we are here for you whenever you need us. Give Flora a big hug for me...... Hugs C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 In a message dated 4/27/01 6:24:30 AM Pacific Daylight Time, sabrina@... writes: << We are having to take her back to the hospital now . I hope she recovers from this bout . Sherry >> Sherry, please know that my thoughts and prayers are with you and your mom. Let us know what is happening. Remember, we are here for you whenever you need us. Give Flora a big hug for me...... Hugs C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 diana you hang in there, rp affects us all in different ways, so what happens to one doesn't necessarialy mean it will happen to all, so keep up the good fight, ok, how are you feeling. dawn --- DIANA JOYNER dianajoyner2000@...> wrote: > THIS IS DIANA J. FROM RALEIGH NC.. I'M FELL SO BAD > FOR > LYLE'S FAMILY. WAS HE AN EXCEPTION OR ARE WE ALL > SITTIN G ON BORROWED TIME..HE HAD RP FOR 3 YEARS ??? > > HOW BAD WAS IT.. I JOINED TOO LATE TO GET AQUAINTED > WITH ALOT OF GOOD PEOPLE..WHO HAVE SINCE LEFT US.. > > IT IS SO SCARY SOME TIMES..YOUR RIGHT WE NEED TO DO > ANY AND EVERYTHING TO FIGHT THIS DARN THING...PLEASE > POST BACK... AND THANKS TO THE PEOPLE WHO SENT ME > ALL > THE INFO I'M TAKING IT TO MY ENT MAY 7TH..AND > ASKING > FOR A RHEUMY AND WHAT EVER ELSE I CAN THINK OF...I'M > TOO YOUNG TO DIE..I'LL ONLY BE 50 IN FEB.... > > LOL AND PRAYERS FOR EVERY ONE > DIANA J > > --- Rpolychondritis wrote: > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 In a message dated 04/27/2001 7:28:31 AM Central Daylight Time, dianajoyner2000@... writes: << OO YOUNG TO DIE..I'LL ONLY BE 50 IN FEB. >> J, we are all too young to die from this disease. ly, I AM NOT going to, I absolutely refuse! I have always said that I want to die in my own bed after great sex, and that is exactly what I am going to do! As my husband points out,this will probably traumatize HIM, but what else can I do? (Besides I don't like the thought of him having sex in MY bed with anyone else!!! I'll come back and haunt him!) All we can do is live with it as best we can and keep fighting and keep praying! Love, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 In a message dated 04/27/2001 7:28:31 AM Central Daylight Time, dianajoyner2000@... writes: << OO YOUNG TO DIE..I'LL ONLY BE 50 IN FEB. >> J, we are all too young to die from this disease. ly, I AM NOT going to, I absolutely refuse! I have always said that I want to die in my own bed after great sex, and that is exactly what I am going to do! As my husband points out,this will probably traumatize HIM, but what else can I do? (Besides I don't like the thought of him having sex in MY bed with anyone else!!! I'll come back and haunt him!) All we can do is live with it as best we can and keep fighting and keep praying! Love, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 In a message dated 04/27/2001 7:28:31 AM Central Daylight Time, dianajoyner2000@... writes: << OO YOUNG TO DIE..I'LL ONLY BE 50 IN FEB. >> J, we are all too young to die from this disease. ly, I AM NOT going to, I absolutely refuse! I have always said that I want to die in my own bed after great sex, and that is exactly what I am going to do! As my husband points out,this will probably traumatize HIM, but what else can I do? (Besides I don't like the thought of him having sex in MY bed with anyone else!!! I'll come back and haunt him!) All we can do is live with it as best we can and keep fighting and keep praying! Love, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 In a message dated 04/27/2001 11:32:24 AM Central Daylight Time, L10@... writes: << AS FAR AS I KNOW >> Lu, that's the kicker isn't it? Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 In a message dated 04/27/2001 11:32:24 AM Central Daylight Time, L10@... writes: << AS FAR AS I KNOW >> Lu, that's the kicker isn't it? Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 In a message dated 04/27/2001 11:32:24 AM Central Daylight Time, L10@... writes: << AS FAR AS I KNOW >> Lu, that's the kicker isn't it? Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 Hi Sherry, I'm so sorry to hear about your Mom's problems, I'm praying that everything will be better soon. Please keep us updated. Love, Lu > Now my mohter Flora is going through the same thing . We are having to take > her back to the hospital now . I hope she recovers from this bout . Sherry > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 Hi Sherry, I'm so sorry to hear about your Mom's problems, I'm praying that everything will be better soon. Please keep us updated. Love, Lu > Now my mohter Flora is going through the same thing . We are having to take > her back to the hospital now . I hope she recovers from this bout . Sherry > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 Hi Sherry, I'm so sorry to hear about your Mom's problems, I'm praying that everything will be better soon. Please keep us updated. Love, Lu > Now my mohter Flora is going through the same thing . We are having to take > her back to the hospital now . I hope she recovers from this bout . Sherry > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 Hi , Yes, We are all saddened by the news about Lyle. It is indeed a scary disease and we are all affected differently. I consider myself very fortunate to have found this group so early after I was diagnosed because I was able to get on some medication that stopped the damage that could have caused a lot more damage than it did. I am also thankful that so far as I know, I do not have the RP involvement in my trachea or bronchial area. Like I said, AS FAR AS I KNOW, I don't think I have any problems there. I will call you soon, take care and let me know if I can be of any help with info. Love and Prayers, Lucy Re: Digest Number 1661 > THIS IS DIANA J. FROM RALEIGH NC.. I'M FELL SO BAD FOR > LYLE'S FAMILY. WAS HE AN EXCEPTION OR ARE WE ALL > SITTIN G ON BORROWED TIME..HE HAD RP FOR 3 YEARS ??? > > HOW BAD WAS IT.. I JOINED TOO LATE TO GET AQUAINTED > WITH ALOT OF GOOD PEOPLE..WHO HAVE SINCE LEFT US.. > > IT IS SO SCARY SOME TIMES..YOUR RIGHT WE NEED TO DO > ANY AND EVERYTHING TO FIGHT THIS DARN THING...PLEASE > POST BACK... AND THANKS TO THE PEOPLE WHO SENT ME ALL > THE INFO I'M TAKING IT TO MY ENT MAY 7TH..AND ASKING > FOR A RHEUMY AND WHAT EVER ELSE I CAN THINK OF...I'M > TOO YOUNG TO DIE..I'LL ONLY BE 50 IN FEB.... > > LOL AND PRAYERS FOR EVERY ONE > DIANA J > > --- Rpolychondritis wrote: > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 Hi , Yes, We are all saddened by the news about Lyle. It is indeed a scary disease and we are all affected differently. I consider myself very fortunate to have found this group so early after I was diagnosed because I was able to get on some medication that stopped the damage that could have caused a lot more damage than it did. I am also thankful that so far as I know, I do not have the RP involvement in my trachea or bronchial area. Like I said, AS FAR AS I KNOW, I don't think I have any problems there. I will call you soon, take care and let me know if I can be of any help with info. Love and Prayers, Lucy Re: Digest Number 1661 > THIS IS DIANA J. FROM RALEIGH NC.. I'M FELL SO BAD FOR > LYLE'S FAMILY. WAS HE AN EXCEPTION OR ARE WE ALL > SITTIN G ON BORROWED TIME..HE HAD RP FOR 3 YEARS ??? > > HOW BAD WAS IT.. I JOINED TOO LATE TO GET AQUAINTED > WITH ALOT OF GOOD PEOPLE..WHO HAVE SINCE LEFT US.. > > IT IS SO SCARY SOME TIMES..YOUR RIGHT WE NEED TO DO > ANY AND EVERYTHING TO FIGHT THIS DARN THING...PLEASE > POST BACK... AND THANKS TO THE PEOPLE WHO SENT ME ALL > THE INFO I'M TAKING IT TO MY ENT MAY 7TH..AND ASKING > FOR A RHEUMY AND WHAT EVER ELSE I CAN THINK OF...I'M > TOO YOUNG TO DIE..I'LL ONLY BE 50 IN FEB.... > > LOL AND PRAYERS FOR EVERY ONE > DIANA J > > --- Rpolychondritis wrote: > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 Hi , Yes, We are all saddened by the news about Lyle. It is indeed a scary disease and we are all affected differently. I consider myself very fortunate to have found this group so early after I was diagnosed because I was able to get on some medication that stopped the damage that could have caused a lot more damage than it did. I am also thankful that so far as I know, I do not have the RP involvement in my trachea or bronchial area. Like I said, AS FAR AS I KNOW, I don't think I have any problems there. I will call you soon, take care and let me know if I can be of any help with info. Love and Prayers, Lucy Re: Digest Number 1661 > THIS IS DIANA J. FROM RALEIGH NC.. I'M FELL SO BAD FOR > LYLE'S FAMILY. WAS HE AN EXCEPTION OR ARE WE ALL > SITTIN G ON BORROWED TIME..HE HAD RP FOR 3 YEARS ??? > > HOW BAD WAS IT.. I JOINED TOO LATE TO GET AQUAINTED > WITH ALOT OF GOOD PEOPLE..WHO HAVE SINCE LEFT US.. > > IT IS SO SCARY SOME TIMES..YOUR RIGHT WE NEED TO DO > ANY AND EVERYTHING TO FIGHT THIS DARN THING...PLEASE > POST BACK... AND THANKS TO THE PEOPLE WHO SENT ME ALL > THE INFO I'M TAKING IT TO MY ENT MAY 7TH..AND ASKING > FOR A RHEUMY AND WHAT EVER ELSE I CAN THINK OF...I'M > TOO YOUNG TO DIE..I'LL ONLY BE 50 IN FEB.... > > LOL AND PRAYERS FOR EVERY ONE > DIANA J > > --- Rpolychondritis wrote: > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 Yes it is sad . Now my mohter Flora is going through the same thing . We are having to take her back to the hospital now . I hope she recovers from this bout .. Sherry Re: Digest Number 1661 THIS IS DIANA J. FROM RALEIGH NC.. I'M FELL SO BAD FOR LYLE'S FAMILY. WAS HE AN EXCEPTION OR ARE WE ALL SITTIN G ON BORROWED TIME..HE HAD RP FOR 3 YEARS ??? HOW BAD WAS IT.. I JOINED TOO LATE TO GET AQUAINTED WITH ALOT OF GOOD PEOPLE..WHO HAVE SINCE LEFT US.. IT IS SO SCARY SOME TIMES..YOUR RIGHT WE NEED TO DO ANY AND EVERYTHING TO FIGHT THIS DARN THING...PLEASE POST BACK... AND THANKS TO THE PEOPLE WHO SENT ME ALL THE INFO I'M TAKING IT TO MY ENT MAY 7TH..AND ASKING FOR A RHEUMY AND WHAT EVER ELSE I CAN THINK OF...I'M TOO YOUNG TO DIE..I'LL ONLY BE 50 IN FEB.... LOL AND PRAYERS FOR EVERY ONE DIANA J --- Rpolychondritis wrote: > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 Yes it is sad . Now my mohter Flora is going through the same thing . We are having to take her back to the hospital now . I hope she recovers from this bout .. Sherry Re: Digest Number 1661 THIS IS DIANA J. FROM RALEIGH NC.. I'M FELL SO BAD FOR LYLE'S FAMILY. WAS HE AN EXCEPTION OR ARE WE ALL SITTIN G ON BORROWED TIME..HE HAD RP FOR 3 YEARS ??? HOW BAD WAS IT.. I JOINED TOO LATE TO GET AQUAINTED WITH ALOT OF GOOD PEOPLE..WHO HAVE SINCE LEFT US.. IT IS SO SCARY SOME TIMES..YOUR RIGHT WE NEED TO DO ANY AND EVERYTHING TO FIGHT THIS DARN THING...PLEASE POST BACK... AND THANKS TO THE PEOPLE WHO SENT ME ALL THE INFO I'M TAKING IT TO MY ENT MAY 7TH..AND ASKING FOR A RHEUMY AND WHAT EVER ELSE I CAN THINK OF...I'M TOO YOUNG TO DIE..I'LL ONLY BE 50 IN FEB.... LOL AND PRAYERS FOR EVERY ONE DIANA J --- Rpolychondritis wrote: > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 sherry you hang in there and know that this group is with you , in thoughts and prayers, take care of mom and your self. dawn --- Sherry Shepherd sabrina@...> wrote: > , They have Mom in the I.C.U. . They first > thought it was heart failure , but it's the Rp > effecting the respitory system . They are going to > try some strong antibiotics , but we don't know with > her pneumonia . just keep praying is all I can do > .Thanks . Sherry > Re: Digest Number 1661 > > > In a message dated 4/27/01 6:24:30 AM Pacific > Daylight Time, > sabrina@... writes: > > << We are having to take her back to the hospital > now . I hope she recovers > from this bout . Sherry >> > > Sherry, please know that my thoughts and prayers > are with you and your mom. > Let us know what is happening. Remember, we are > here for you whenever you > need us. > Give Flora a big hug for me...... > Hugs > C > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2001 Report Share Posted April 27, 2001 sherry you hang in there and know that this group is with you , in thoughts and prayers, take care of mom and your self. dawn --- Sherry Shepherd sabrina@...> wrote: > , They have Mom in the I.C.U. . They first > thought it was heart failure , but it's the Rp > effecting the respitory system . They are going to > try some strong antibiotics , but we don't know with > her pneumonia . just keep praying is all I can do > .Thanks . Sherry > Re: Digest Number 1661 > > > In a message dated 4/27/01 6:24:30 AM Pacific > Daylight Time, > sabrina@... writes: > > << We are having to take her back to the hospital > now . I hope she recovers > from this bout . Sherry >> > > Sherry, please know that my thoughts and prayers > are with you and your mom. > Let us know what is happening. Remember, we are > here for you whenever you > need us. > Give Flora a big hug for me...... > Hugs > C > > Quote Link to comment Share on other sites More sharing options...
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