Guest guest Posted September 4, 2000 Report Share Posted September 4, 2000 H. Please send me a copy of this. My printer is down but plan to get it back on line in the next couple of days. Thank you for all the research. Glenda Lots of Love On Mon, 4 Sep 2000 22:44:04 -0400, Rpolychondritisegroups wrote: > H, > I would also like a copy of anything RP related and I agree with you too. > There is no excuse for this as far as Gloria is concerned. Doesn't her doc > realize what can happen when RP is involved in the throat and trach areas? > There is NO EXCUSE for her doctor's behavior on this. None!! > Thank you for anything you can send my way relating to this. I've lost all > my RP files and need any and everything I can get my hands on now. > > >>>>>>>>>>>>>>>>>>>>>>>>>>>> > I am still ready to spit tacks I am so angry about what has happened to > Gloria. > > I am sending her a get-well card and am enclosing six pages of instructions > for her family to start keeping a notebook that will help her in the future. > I outlined what should be in it, what to write in your medical history, and > where to find some of the extra stuff like research articles and tutorials > to > print out on the internet. Also told them what to do with the info once > they > have it gathered -- how to use if for every ER visit and for every new > doctor. It is based on what I ran into in the beginning until I got settled > in with my docs. > > I also told her husband some tough words to use on her doctor to get her in > hospital where she belongs. I sure hope he is willing to do that. > > I might also enclose a copy of Dr. Jerome Hermann's summary of RP research > in > the package with her card if I can find all of the parts of it I have > somewhere on my HD. > > I saved what I wrote and if anyone else feels like they would like a copy, > let me know and I will forward it to you. There is some stuff that is > personal for Gloria but it may help others to understand what I am getting > at > in terms of their own case histories. > > H. > > > > _______________________________________________________ Say Bye to Slow Internet! http://www.home.com/xinbox/signup.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2000 Report Share Posted September 4, 2000 , I'd also appreciate a copy of this. Thanks so much for all of the research and advice you provide to the group. Connie --- " eyeoreluv@... " wrote: > H. > > Please send me a copy of this. My printer is down > but plan to get it back > on line in the next couple of days. Thank you for > all the research. > > Glenda > Lots of Love > On Mon, 4 Sep 2000 22:44:04 -0400, > Rpolychondritisegroups wrote: > > > H, > > I would also like a copy of anything RP related > and I agree with you too. > > There is no excuse for this as far as Gloria is > concerned. Doesn't her > doc > > realize what can happen when RP is involved in > the throat and trach > areas? > > There is NO EXCUSE for her doctor's behavior on > this. None!! > > Thank you for anything you can send my way > relating to this. I've lost > all > > my RP files and need any and everything I can get > my hands on now. > > > > >>>>>>>>>>>>>>>>>>>>>>>>>>>> > > I am still ready to spit tacks I am so angry > about what has happened to > > Gloria. > > > > I am sending her a get-well card and am enclosing > six pages of > instructions > > for her family to start keeping a notebook that > will help her in the > future. > > I outlined what should be in it, what to write > in your medical history, > and > > where to find some of the extra stuff like > research articles and > tutorials > > to > > print out on the internet. Also told them what > to do with the info once > > they > > have it gathered -- how to use if for every ER > visit and for every new > > doctor. It is based on what I ran into in the > beginning until I got > settled > > in with my docs. > > > > I also told her husband some tough words to use > on her doctor to get her > in > > hospital where she belongs. I sure hope he is > willing to do that. > > > > I might also enclose a copy of Dr. Jerome > Hermann's summary of RP > research > > in > > the package with her card if I can find all of > the parts of it I have > > somewhere on my HD. > > > > I saved what I wrote and if anyone else feels > like they would like a > copy, > > let me know and I will forward it to you. There > is some stuff that is > > personal for Gloria but it may help others to > understand what I am > getting > > at > > in terms of their own case histories. > > > > H. > > > > > > > > > > > > > > _______________________________________________________ > Say Bye to Slow Internet! > http://www.home.com/xinbox/signup.html > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 , I would like the info also. Thanks very much. Hugs, Sandy Re: H > > H. > > Please send me a copy of this. My printer is down but plan to get it back > on line in the next couple of days. Thank you for all the research. > > Glenda > Lots of Love > On Mon, 4 Sep 2000 22:44:04 -0400, Rpolychondritisegroups wrote: > > > H, > > I would also like a copy of anything RP related and I agree with you too. > > There is no excuse for this as far as Gloria is concerned. Doesn't her > doc > > realize what can happen when RP is involved in the throat and trach > areas? > > There is NO EXCUSE for her doctor's behavior on this. None!! > > Thank you for anything you can send my way relating to this. I've lost > all > > my RP files and need any and everything I can get my hands on now. > > > > >>>>>>>>>>>>>>>>>>>>>>>>>>>> > > I am still ready to spit tacks I am so angry about what has happened to > > Gloria. > > > > I am sending her a get-well card and am enclosing six pages of > instructions > > for her family to start keeping a notebook that will help her in the > future. > > I outlined what should be in it, what to write in your medical history, > and > > where to find some of the extra stuff like research articles and > tutorials > > to > > print out on the internet. Also told them what to do with the info once > > they > > have it gathered -- how to use if for every ER visit and for every new > > doctor. It is based on what I ran into in the beginning until I got > settled > > in with my docs. > > > > I also told her husband some tough words to use on her doctor to get her > in > > hospital where she belongs. I sure hope he is willing to do that. > > > > I might also enclose a copy of Dr. Jerome Hermann's summary of RP > research > > in > > the package with her card if I can find all of the parts of it I have > > somewhere on my HD. > > > > I saved what I wrote and if anyone else feels like they would like a > copy, > > let me know and I will forward it to you. There is some stuff that is > > personal for Gloria but it may help others to understand what I am > getting > > at > > in terms of their own case histories. > > > > H. > > > > > > > > > > > > > > _______________________________________________________ > Say Bye to Slow Internet! > http://www.home.com/xinbox/signup.html > > > 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 5, 2000 Report Share Posted September 5, 2000 , I would like the info also. Thanks very much. Hugs, Sandy Re: H > > H. > > Please send me a copy of this. My printer is down but plan to get it back > on line in the next couple of days. Thank you for all the research. > > Glenda > Lots of Love > On Mon, 4 Sep 2000 22:44:04 -0400, Rpolychondritisegroups wrote: > > > H, > > I would also like a copy of anything RP related and I agree with you too. > > There is no excuse for this as far as Gloria is concerned. Doesn't her > doc > > realize what can happen when RP is involved in the throat and trach > areas? > > There is NO EXCUSE for her doctor's behavior on this. None!! > > Thank you for anything you can send my way relating to this. I've lost > all > > my RP files and need any and everything I can get my hands on now. > > > > >>>>>>>>>>>>>>>>>>>>>>>>>>>> > > I am still ready to spit tacks I am so angry about what has happened to > > Gloria. > > > > I am sending her a get-well card and am enclosing six pages of > instructions > > for her family to start keeping a notebook that will help her in the > future. > > I outlined what should be in it, what to write in your medical history, > and > > where to find some of the extra stuff like research articles and > tutorials > > to > > print out on the internet. Also told them what to do with the info once > > they > > have it gathered -- how to use if for every ER visit and for every new > > doctor. It is based on what I ran into in the beginning until I got > settled > > in with my docs. > > > > I also told her husband some tough words to use on her doctor to get her > in > > hospital where she belongs. I sure hope he is willing to do that. > > > > I might also enclose a copy of Dr. Jerome Hermann's summary of RP > research > > in > > the package with her card if I can find all of the parts of it I have > > somewhere on my HD. > > > > I saved what I wrote and if anyone else feels like they would like a > copy, > > let me know and I will forward it to you. There is some stuff that is > > personal for Gloria but it may help others to understand what I am > getting > > at > > in terms of their own case histories. > > > > H. > > > > > > > > > > > > > > _______________________________________________________ > Say Bye to Slow Internet! > http://www.home.com/xinbox/signup.html > > > 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...
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