Guest guest Posted October 17, 2009 Report Share Posted October 17, 2009 Thanks, Fay. I would like to see a book, too. Hopefully, in two or three months I will finally be retired and living in my new house in North Carolina. I would be able to contribute considerable time to a book, although I have one book that needs editing and perhaps a few rewrites before publication and several plays that are in various stages of draft. Still, I could work in a book on IPF. The personal stories would be the spine of the book. I say that because that is what most readers will want to hear, as I do. And so many of them are inspirational. What's needed is for enough group members who will commit to writing their story to make this take off. Also critical to the book is for Beth and Bruce to write the medical story. Jack79/IPF - UIP/dx06/05 Maine To: Breathe-Support Sent: Sat, October 17, 2009 1:29:45 PMSubject: The Book Hello all. I'm Fay, an inveterate lurker who has gained so much info from this site. I do want to suggest that the group should go ahead with a book. Like my young friend Jack, (I'm 81!), Sher, Cees , Ann, and many others I've had experience in writing and editing--nothing really creative--history text books for 4th traders through college students and teacher prep materials for the National Park Service, various history and social studies orgs, and the Atlantic Council, and European Community. So I know how much work this would be. Still someone should take on the initial draft and lots of us have editing experience. Who has time and energy? A tentative suggestion for conent:Part I: What is PF? Who gets it? smokers and non-smokers, active and sedentary people, old and young, different climates, different occupations, etc.Vignettes: examples of our members who represent above plus transplantsPart II How diagnosed, treatment,transplan ts, commonly used medicines,examples different centers of excellence-- full listingappendixPart III Liv8ing with PFKeep walking, rehab, living with oxygenPart IV When the Battle is Lost Blessings of Hospice and familymembersPart V Not for sissys movement, humor, being gratefulThis is too long and I left out examples: young mother Kerry, wonderfully zany Peggy and Zena, Good friends from other lands,etc.Fay:Mesa, AZ and Capitola CA, DX IPF 1997 and lately getting craky. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2009 Report Share Posted October 17, 2009 don't forget the practical tips for living with pulmonary fibrosis Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: The BookTo: Breathe-Support Date: Saturday, October 17, 2009, 5:11 PM Thanks, Fay. I would like to see a book, too. Hopefully, in two or three months I will finally be retired and living in my new house in North Carolina. I would be able to contribute considerable time to a book, although I have one book that needs editing and perhaps a few rewrites before publication and several plays that are in various stages of draft. Still, I could work in a book on IPF. The personal stories would be the spine of the book. I say that because that is what most readers will want to hear, as I do. And so many of them are inspirational. What's needed is for enough group members who will commit to writing their story to make this take off. Also critical to the book is for Beth and Bruce to write the medical story. Jack79/IPF - UIP/dx06/05 Maine From: faybil1 <faybil1 (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, October 17, 2009 1:29:45 PMSubject: The Book Hello all. I'm Fay, an inveterate lurker who has gained so much info from this site. I do want to suggest that the group should go ahead with a book. Like my young friend Jack, (I'm 81!), Sher, Cees , Ann, and many others I've had experience in writing and editing--nothing really creative--history text books for 4th traders through college students and teacher prep materials for the National Park Service, various history and social studies orgs, and the Atlantic Council, and European Community. So I know how much work this would be. Still someone should take on the initial draft and lots of us have editing experience. Who has time and energy? A tentative suggestion for conent:Part I: What is PF? Who gets it? smokers and non-smokers, active and sedentary people, old and young, different climates, different occupations, etc.Vignettes: examples of our members who represent above plus transplantsPart II How diagnosed, treatment,transplan ts, commonly used medicines,examples different centers of excellence-- full listingappendixPart III Liv8ing with PFKeep walking, rehab, living with oxygenPart IV When the Battle is Lost Blessings of Hospice and familymembersPart V Not for sissys movement, humor, being gratefulThis is too long and I left out examples: young mother Kerry, wonderfully zany Peggy and Zena, Good friends from other lands,etc.Fay:Mesa, AZ and Capitola CA, DX IPF 1997 and lately getting craky. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2009 Report Share Posted October 17, 2009 What a bold concept! That would take a considerable amount of time and effort. Would any author undertake such a collatorative effort? Would any publishing house actually publish such a book? I would offer to write my story for contribution but I doubt if it would actually be believable in print. It sounds made up even to me and I have lived through it. And with good hair and shoes throughout. I can survive anything with the right shoes! But it is a wonderful idea. People from all over the world contributing survival stories. Maybe we could make the acorn as recognizable as the pink ribbon? Who knows. Nothing is impossible. We prove that every day. S, Lubbock, TX NSIP w/PF 12/2006 > > Thanks, Fay. I would like to see a book, too. Hopefully, in two or three months I will finally be retired > and living in my new house in North Carolina. I would be able to contribute considerable time to a book, although I have one book that needs editing and perhaps a few rewrites before publication and several plays that are in various stages of draft. Still, I could work in a book on IPF. The personal stories would be the spine of the book. I say that because that is what most readers will want to hear, as I do. And so many of them are inspirational. What's needed is for enough group members who will commit to writing their story to make this take off. Also critical to the book is for Beth and Bruce to write the medical story. > > Jack > 79/IPF - UIP/dx06/05 Maine > > > > > ________________________________ > > To: Breathe-Support > Sent: Sat, October 17, 2009 1:29:45 PM > Subject: The Book > > > Hello all. I'm Fay, an inveterate lurker who has gained so much info from this site. I do want to suggest that the group should go ahead with a book. Like my young friend Jack, (I'm 81!), Sher, Cees , Ann, and many others I've had experience in writing and editing--nothing really creative--history text books for 4th traders through college students and teacher prep materials for the National Park Service, various history and social studies orgs, and the Atlantic Council, and European Community. So I know how much work this would be. Still someone should take on the initial draft and lots of us have editing experience. Who has time and energy? > > A tentative suggestion for conent: > > Part I: What is PF? > Who gets it? smokers and non-smokers, active and sedentary people, old and young, different climates, different occupations, etc. > > Vignettes: examples of our members who represent above plus transplants > > Part II How diagnosed, treatment,transplan ts, commonly used medicines,examples different centers of excellence-- full listing > appendix > > Part III Liv8ing with PF > Keep walking, rehab, living with oxygen > > Part IV When the Battle is Lost Blessings of Hospice and family > members > > Part V Not for sissys movement, humor, being grateful > > This is too long and I left out examples: young mother Kerry, wonderfully zany Peggy and Zena, Good friends from other lands,etc. > > Fay:Mesa, AZ and Capitola CA, DX IPF 1997 and lately getting craky. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2009 Report Share Posted October 18, 2009 I love that title! It personifies so well how we have to listen to what our bodies and lungs are telling us from day to day. I wish you well with your writing. Once a Texan, always a Texan. I have a crackle in my cackle today and am taking the Evil Twin to get an X-ray done. S, Lubbock, TX NSIP w/PF 12/2006 > > > > Thanks, Fay. I would like to see a book, too. Hopefully, in two or three months I will finally be retired > > and living in my new house in North Carolina. I would be able to contribute considerable time to a book, although I have one book that needs editing and perhaps a few rewrites before publication and several plays that are in various stages of draft. Still, I could work in a book on IPF. The personal stories would be the spine of the book. I say that because that is what most readers will want to hear, as I do. And so many of them are inspirational. What's needed is for enough group members who will commit to writing their story to make this take off. Also critical to the book is for Beth and Bruce to write the medical story. > > > > Jack > > 79/IPF - UIP/dx06/05 Maine > > > > > > > > > > ____________ _________ _________ __ > > From: faybil1 <faybil1@ > > > To: Breathe-Support@ yahoogroups. com > > Sent: Sat, October 17, 2009 1:29:45 PM > > Subject: The Book > > > > > > Hello all. I'm Fay, an inveterate lurker who has gained so much info from this site. I do want to suggest that the group should go ahead with a book. Like my young friend Jack, (I'm 81!), Sher, Cees , Ann, and many others I've had experience in writing and editing--nothing really creative--history text books for 4th traders through college students and teacher prep materials for the National Park Service, various history and social studies orgs, and the Atlantic Council, and European Community. So I know how much work this would be. Still someone should take on the initial draft and lots of us have editing experience. Who has time and energy? > > > > A tentative suggestion for conent: > > > > Part I: What is PF? > > Who gets it? smokers and non-smokers, active and sedentary people, old and young, different climates, different occupations, etc. > > > > Vignettes: examples of our members who represent above plus transplants > > > > Part II How diagnosed, treatment,transplan ts, commonly used medicines,examples different centers of excellence-- full listing > > appendix > > > > Part III Liv8ing with PF > > Keep walking, rehab, living with oxygen > > > > Part IV When the Battle is Lost Blessings of Hospice and family > > members > > > > Part V Not for sissys movement, humor, being grateful > > > > This is too long and I left out examples: young mother Kerry, wonderfully zany Peggy and Zena, Good friends from other lands,etc. > > > > Fay:Mesa, AZ and Capitola CA, DX IPF 1997 and lately getting craky. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2009 Report Share Posted October 18, 2009 Jack...those who choose to write would only need to write about 'the illness'. We would not need to write a 'life story'. That can make editing easier and less material to wade through... MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! The Book Hello all. I'm Fay, an inveterate lurker who has gained so much info from this site. I do want to suggest that the group should go ahead with a book. Like my young friend Jack, (I'm 81!), Sher, Cees , Ann, and many others I've had experience in writing and editing--nothing really creative--history text books for 4th traders through college students and teacher prep materials for the National Park Service, various history and social studies orgs, and the Atlantic Council, and European Community. So I know how much work this would be. Still someone should take on the initial draft and lots of us have editing experience. Who has time and energy? A tentative suggestion for conent:Part I: What is PF? Who gets it? smokers and non-smokers, active and sedentary people, old and young, different climates, different occupations, etc.Vignettes: examples of our members who represent above plus transplantsPart II How diagnosed, treatment,transplan ts, commonly used medicines,examples different centers of excellence-- full listingappendixPart III Liv8ing with PFKeep walking, rehab, living with oxygenPart IV When the Battle is Lost Blessings of Hospice and familymembersPart V Not for sissys movement, humor, being gratefulThis is too long and I left out examples: young mother Kerry, wonderfully zany Peggy and Zena, Good friends from other lands,etc.Fay:Mesa, AZ and Capitola CA, DX IPF 1997 and lately getting craky. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2009 Report Share Posted October 18, 2009 Hi all, I'd volunteer to start collecting & editing the stories, but it sounds like Leanne has already begun that phase. Leanne, would you like some help with that? Maybe I could start collecting new stories? Just tell me what I can do to help. Sher, I hope you're feeling better. Re: your comment about writing about the " illness " as opposed to a " life story, " you probably meant that we don't need info such as " I was born in . . . . " That's true, but if someone's birthplace or job, etc. had some bearing on their disease, then I do think that info is important. I think personal feelings, attitudes, actions, etc. are CRUCIAL to making a book of this type readable ( & successful). That's why everyone should just go ahead & write whatever they think is pertinent to their lives with ILD of whatever type. Fay, I like your thinking so far in breaking down the book into sections. May I suggest that the humor & not for sissies section start way up front though, maybe even combined with info on the frustration we've all had in 1.)getting diagnosed & 2.)getting diagnosed correctly. Maybe that'll help some people be more aggressive with their doctors when necessary. (I'm going thru more of that frustration right now, but that's for another posting.) Anyway, I'm willing to help in any way I can, but I'm a newby here & willing to take direction from you pros. Cees, S Calif dx 10/08 PF? IPF? Sarcoid? Etc, etc.??? > > Jack...those who choose to write would only need to write about 'the illness'. We would not need to write a 'life story'. That can make editing easier and less material to wade through... > MamaSher; 71, IPF 3-2006, OR. > Don't fret about tomorrow, God is already there! > The Book > > > Hello all. I'm Fay, an inveterate lurker who has gained so much info from this site. I do want to suggest that the group should go ahead with a book. Like my young friend Jack, (I'm 81!), Sher, Cees , Ann, and many others I've had experience in writing and editing--nothing really creative--history text books for 4th traders through college students and teacher prep materials for the National Park Service, various history and social studies orgs, and the Atlantic Council, and European Community. So I know how much work this would be. Still someone should take on the initial draft and lots of us have editing experience. Who has time and energy? > > A tentative suggestion for conent: > > Part I: What is PF? > Who gets it? smokers and non-smokers, active and sedentary people, old and young, different climates, different occupations, etc. > > Vignettes: examples of our members who represent above plus transplants > > Part II How diagnosed, treatment,transplan ts, commonly used medicines,examples different centers of excellence-- full listing > appendix > > Part III Liv8ing with PF > Keep walking, rehab, living with oxygen > > Part IV When the Battle is Lost Blessings of Hospice and family > members > > Part V Not for sissys movement, humor, being grateful > > This is too long and I left out examples: young mother Kerry, wonderfully zany Peggy and Zena, Good friends from other lands,etc. > > Fay:Mesa, AZ and Capitola CA, DX IPF 1997 and lately getting craky. > Quote Link to comment Share on other sites More sharing options...
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