Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 Bruce, Nope, nope, nope, and nope to most questions. Pulmonary rehab, this site, info from the PFF and CPF, and difficult trial and error are where I learn how to live with this disease. There isn't a local IPF support group here. Sounds like this conversation is pretty much over, but: my pulmo doesn't have nearly enough time to get online and check out our site, but I wouldn't want him to anyway. Communications have been so poor for three years between the transplant coordinators (nurses) and me and my other docs, as I've groaned about regularly, that I need to be able to vent here without editing. I guess my fantasy would be for everyone ELSE'S doctors to get on board and learn a thing or two. :-) I also think many docs are too arrogant to read this - they'd be offended that all these mere lay people were playing doctor and dispensing information. Sad but true. Sandie, I'm glad at least Rudy is home. I feel so awful about the load you're under. There's just got to be a doc out there somewhere who will treat you as a whole person. Please don't take unprescribed meds, though, okay? And if you have those symptoms again, get to an ER if you don't have a doc who responds to you. , Sher, etc. I appreciate the sweet notion, but I'd rather not be a Dame (if I get a vote). It's a category somewhat removed or elevated from ordinary folk; sounds kind of pretentious or stiff; reminds me too much of a diva, and I prefer to be just one of the gang. Arrogance and entitlement are two of my least favorite qualities, so that's where I'm coming from, not that it matters. My dearest friends call me Gwynnie, but this is a creative group...just don't call me a lap dancer. :-} Hugs, Gwynne IPF 7/04 listed for transplant 3/07 Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 Well, I don't want the doctors here. But I do wish they had transcripts with sources and names removed from here and elsewhere they had to study and wish they would remember all their oath, rather than trying to get it changed, and wish they'd just do the few simple things that you said no no no no no no and no too, as did I. And, if I possibly can get it to happen, there will be a local support group. There is nothing I want more. Well, other than you being a member for a long long time in it. I hope for a first meeting now in March, even though I may be the only one to show up, but we'll see. Maybe at least all the pulmonologists will be kind enough to put the information in their lobbies and give to patients. Or, do they fear us talking among ourselves? You're right they'd be offended at the information shared here. Yet, somehow they would never realize that their failures to do their jobs leads to a lot of it. I wonder and worry about all the lonely people, the vast majority of PF'ers in the country, who know absolutely no one to talk to about their disease, who can understand it. I think of how lost I'd be and then cry at what has to be the helplessness they feel and the lack of support to help them. How many don't know there is a single organization working in this country on behalf of the disease. If there is one thing worse that having this disease, it most definitely is going through it alone. And, while family and friends mean so much, what do they know if the one with the disease doesn't even know enough to tell them. I've always believed that knowledge is power and when it comes to a disease that makes you feel powerless, how much it is needed. I have an uncle who has been on oxygen 30 years with COPD and is at 2 liters. That is the closest my relatives have seen and they would equate my situation to his. Well, I won't be on 2 liters long, although I'll not sit in the recliner for 30 years like him, and I don't have 30 years. But I know how to make the most of what I do have and where to come anytime I need someone who " gets it. " > > Bruce, > Nope, nope, nope, and nope to most questions. > Pulmonary rehab, this site, info from the PFF and > CPF, and difficult trial and error are where I learn > how to live with this disease. There isn't a local > IPF support group here. > > Sounds like this conversation is pretty much over, but: > my pulmo doesn't have nearly enough time to get > online and check out our site, but I wouldn't want > him to anyway. Communications have been so poor > for three years between the transplant coordinators > (nurses) and me and my other docs, as I've groaned > about regularly, that I need to be able to vent here > without editing. I guess my fantasy would be for > everyone ELSE'S doctors to get on board and learn > a thing or two. :-) I also think many docs are too > arrogant to read this - they'd be offended > that all these mere lay people were playing doctor > and dispensing information. Sad but true. > > Sandie, > I'm glad at least Rudy is home. I feel so awful about > the load you're under. There's just got to be a doc > out there somewhere who will treat you as a whole > person. Please don't take unprescribed meds, though, > okay? And if you have those symptoms again, get to > an ER if you don't have a doc who responds to you. > > , Sher, etc. > I appreciate the sweet notion, but I'd rather not be > a Dame (if I get a vote). It's a category somewhat removed > or elevated from ordinary folk; sounds kind of pretentious > or stiff; reminds me too much of a diva, and I prefer to > be just one of the gang. Arrogance and entitlement are > two of my least favorite qualities, so that's where I'm > coming from, not that it matters. My dearest friends > call me Gwynnie, but this is a creative group...just don't > call me a lap dancer. :-} > > Hugs, > Gwynne IPF 7/04 listed for transplant 3/07 Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 I wont call you a dame I always see you as some sophisticated, laid back person, you remind me of my old therapist and she was great, and everything Bruce says about you its just as I imagine you to be! Thanks and take care of yourself. I agree with the communication of the doctors! Sandie > > Bruce, > Nope, nope, nope, and nope to most questions. > Pulmonary rehab, this site, info from the PFF and > CPF, and difficult trial and error are where I learn > how to live with this disease. There isn't a local > IPF support group here. > > Sounds like this conversation is pretty much over, but: > my pulmo doesn't have nearly enough time to get > online and check out our site, but I wouldn't want > him to anyway. Communications have been so poor > for three years between the transplant coordinators > (nurses) and me and my other docs, as I've groaned > about regularly, that I need to be able to vent here > without editing. I guess my fantasy would be for > everyone ELSE'S doctors to get on board and learn > a thing or two. :-) I also think many docs are too > arrogant to read this - they'd be offended > that all these mere lay people were playing doctor > and dispensing information. Sad but true. > > Sandie, > I'm glad at least Rudy is home. I feel so awful about > the load you're under. There's just got to be a doc > out there somewhere who will treat you as a whole > person. Please don't take unprescribed meds, though, > okay? And if you have those symptoms again, get to > an ER if you don't have a doc who responds to you. > > , Sher, etc. > I appreciate the sweet notion, but I'd rather not be > a Dame (if I get a vote). It's a category somewhat removed > or elevated from ordinary folk; sounds kind of pretentious > or stiff; reminds me too much of a diva, and I prefer to > be just one of the gang. Arrogance and entitlement are > two of my least favorite qualities, so that's where I'm > coming from, not that it matters. My dearest friends > call me Gwynnie, but this is a creative group...just don't > call me a lap dancer. :-} > > Hugs, > Gwynne IPF 7/04 listed for transplant 3/07 Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Hey Gwynnie! if lap dancer is good (bad?) enough for me it's good (bad?) enough for you! lol. I like Gwynnie. Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! dames Bruce,Nope, nope, nope, and nope to most questions.Pulmonary rehab, this site, info from the PFF andCPF, and difficult trial and error are where I learnhow to live with this disease. There isn't a localIPF support group here.Sounds like this conversation is pretty much over, but:my pulmo doesn't have nearly enough time to getonline and check out our site, but I wouldn't wanthim to anyway. Communications have been so poorfor three years between the transplant coordinators(nurses) and me and my other docs, as I've groanedabout regularly, that I need to be able to vent herewithout editing. I guess my fantasy would be foreveryone ELSE'S doctors to get on board and learna thing or two. :-) I also think many docs are tooarrogant to read this - they'd be offendedthat all these mere lay people were playing doctorand dispensing information. Sad but true.Sandie,I'm glad at least Rudy is home. I feel so awful aboutthe load you're under. There's just got to be a docout there somewhere who will treat you as a wholeperson. Please don't take unprescribed meds, though,okay? And if you have those symptoms again, get toan ER if you don't have a doc who responds to you., Sher, etc.I appreciate the sweet notion, but I'd rather not bea Dame (if I get a vote). It's a category somewhat removedor elevated from ordinary folk; sounds kind of pretentiousor stiff; reminds me too much of a diva, and I prefer tobe just one of the gang. Arrogance and entitlement aretwo of my least favorite qualities, so that's where I'mcoming from, not that it matters. My dearest friendscall me Gwynnie, but this is a creative group...just don'tcall me a lap dancer. :-}Hugs,Gwynne IPF 7/04 listed for transplant 3/07 Texas Quote Link to comment Share on other sites More sharing options...
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