Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 , no one would use your postings without your permission. If you do grant permission it will be edited to your satisfaction. Names of doctors and all other medical practioners, oxygen providers, et al, would be deleted. Cees and I both have many years as writers, I as a journalist, publisher and editor of newspapers, author, playwright, speech writer and a teacher of writing. We are keenly aware of the need for privacy and will make certain that the privacy of all members is protected. Jack79/IPF - UIP/dx06/05 Maine To: Breathe-Support Sent: Sat, November 21, 2009 10:02:31 AMSubject: Re: Re: Book I don't think I would be comfortable with someone just taking my e-mail writings without permission and putting them in a book. What I have shared by posting to this group I assumed to be confidential and not for the general public. I have also made reference about doctors (including their names) and others that I wouldn't want to get back to them or the public. I wouldn't mind writing my own story or tips for the book, just don't want things I've posted in confidentiality for this group to be taken and put into a book. I would just ask that someone research the legalities of writing a book. Presenting someone else's words or ideas as your own, whether intentional or not, constitutes plagiarism. Any time the original thought, words, or pictures (including e-mails) did not come from your own head, you must give credit to the original source by showing exactly where you found the material. C_53_Familial IPF_5/09Washington From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wed, November 11, 2009 6:32:00 AMSubject: Re: Re: Book i agree with that Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Embarq Customer <pattijo05@embarqmai l.com>Subject: Re: Re: BookTo: Breathe-Support@ yahoogroups. comDate: Wednesday, November 11, 2009, 7:49 AM I'm agreeable to any info from my posts being printed, anonymously though. Re: BookJack,I wholeheartedly agree with you about the heart-wrenching posts, "told from the heart," that would make this book a huge success among the general public. That's why I wrote that most members could just cut & paste previous posts to tell their stories because they were already so good. But Barbara & Beth make a really good point. Just because you & I have been writing on demand our whole lives doesn't mean the general public feels comfortable doing it. I think you said you taught college students like I did. Maybe your students were already good writing majors, but many of mine weren't, so I totally understand how people can be intimidated by a writing project. That's why I think a Questionnaire is a great idea. For one thing, we'll get responses from a lot more people, which I know you're hoping to see. And who knows? Sometimes just having a question to answer gets the juices flowing & stories come pouring out.So go for it, Barbara. I can't wait to see the Questionnaire. I think that's one thing that really can be posted on the Files section of our website, so everyone can download a copy. I would ask that you run it past a couple of us on the committee before you submit it though. Mostly because we might have an idea for another question to include & the read-only Files section can't easily be edited. For example, I think we should include a question asking permission to possibly use info from people's past postings with the caveat that they will have final approval over any edited version that's attributed to them. Whaddya ya'll think?Cees, S CalifPF 10/08> > > >> > > > Hi, I'm new here and need to hear from others who feel as old as I do.> > > I'm only 43 but my body is about 20 years older. I've battled Hodgkin's> > > Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on> > > oxygen 24/7, use a bi-pap and get out of breath with any movement. I am> > > in a rehab program 3x a week and was told I have a week diaphragm too> > > due to being laid up after some stomach surgery, so I am going to try> > > singing lessons to help me breath differently. I am so tired from> > > breathing, it takes so much energy. I am in a support group for the> > > cancer and in private therapy for everything else. But when does your> > > quality of life take priority over trying> > > > endlessly to beat all these> > > health issues? I have a king of a husband and a huge loving support> > > system but none of that can help me breath any better. Sorry for> > > complaining so soon, it's just so tough and I know someone out there has> > > walked in my shoes, I just need to know how do you keep on walking???> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 Let me add my assurances to Jack's. Not only have I been a newspaper reporter & editor (from the old days when we had to triple check all facts before publishing anything), I also taught writing and COPYRIGHT LAW in college. We would never dream of plagiarizing anything or printing anyone's words without their complete approval. I don't think we should even let anyone be quoted anonymously or use an alias for 2 reasons: 1st because it takes away our credibility (suggests we might be making up stories), and 2nd because it would be too easy to let ourselves slip in quotes anonymously that members might not want attributed to them. The only quotes from members that would even be used in the book are those that are the most pertinent to the chapter topics being discussed. And even that isn't enough because we've all contributed postings on important topics, & the book doesn't have room for everything. The quotes or postings used would also need to have a second quality: possibly being the best example of everyone's feelings, or a saying that is worded terrific-ly, or the most endearing, or the most heart-wrenching, etc. I have no doubts that we have more than enough members on this board willing to participate to fill this book 20 times over. So many of you have written such great things that the hardest part will be narrowing down what we use. This book is a group effort, supported by the group & the foundation. It must remain that way. I feel an obligation ( & I know the other committee members do also) to tell our stories & the facts about our disease honestly & with integrity. Nothing will be used without the complete approval of everyone being quoted. Cees, S Calif IPF/UIP 10/08 > > > > > >> > > > > > > > > >> > > > Hi, I'm new here and need to hear from others who feel as old as I do. > > > > > >> > > I'm only 43 but my body is about 20 years older. I've battled Hodgkin's > > > > > >> > > Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on > > > > > >> > > oxygen 24/7, use a bi-pap and get out of breath with any movement. I am > > > > > >> > > in a rehab program 3x a week and was told I have a week diaphragm too > > > > > >> > > due to being laid up after some stomach surgery, so I am going to try > > > > > >> > > singing lessons to help me breath differently. I am so tired from > > > > > >> > > breathing, it takes so much energy. I am in a support group for the > > > > > >> > > cancer and in private therapy for everything else. But when does your > > > > > >> > > quality of life take priority over trying > > > > > >> > > > > > > >> > endlessly to beat all these > > > > > >> > > health issues? I have a king of a husband and a huge loving support > > > > > >> > > system but none of that can help me breath any better. Sorry for > > > > > >> > > complaining so soon, it's just so tough and I know someone out there has > > > > > >> > > walked in my shoes, I just need to know how do you keep on walking??? > > > > > >> > > > > > > > > >> > > > > > > > >> > > > > > > >> > > > > > > > > > > > > > > > > > > > >Â Â Â Â > > > >Â Â Â Â Â > > > > > > > >Â Â Â Â > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 AMEN!! I agree totally. > > > > > >> > > > Hi, I'm new here and need to hear from others who feel as old as I do. > > > > > >> > > I'm only 43 but my body is about 20 years older. I've battled Hodgkin's > > > > > >> > > Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on > > > > > >> > > oxygen 24/7, use a bi-pap and get out of breath with any movement. I am > > > > > >> > > in a rehab program 3x a week and was told I have a week diaphragm too > > > > > >> > > due to being laid up after some stomach surgery, so I am going to try > > > > > >> > > singing lessons to help me breath differently. I am so tired from > > > > > >> > > breathing, it takes so much energy. I am in a support group for the > > > > > >> > > cancer and in private therapy for everything else. But when does your > > > > > >> > > quality of life take priority over trying > > > > > >> > endlessly to beat all these > > >> > > health issues? I have a king of a husband and a huge loving support > > > > > >> > > system but none of that can help me breath any better. Sorry for > > > > > >> > > complaining so soon, it's just so tough and I know someone out there has > > > > > >> > > walked in my shoes, I just need to know how do you keep on walking??? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 ok, good. C_53_Familial IPF_5/09Washington To: Breathe-Support Sent: Sat, November 21, 2009 8:07:03 AMSubject: Re: Re: Book , no one would use your postings without your permission. If you do grant permission it will be edited to your satisfaction. Names of doctors and all other medical practioners, oxygen providers, et al, would be deleted. Cees and I both have many years as writers, I as a journalist, publisher and editor of newspapers, author, playwright, speech writer and a teacher of writing. We are keenly aware of the need for privacy and will make certain that the privacy of all members is protected. Jack79/IPF - UIP/dx06/05 Maine From: worth <hope2thend (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sat, November 21, 2009 10:02:31 AMSubject: Re: Re: Book I don't think I would be comfortable with someone just taking my e-mail writings without permission and putting them in a book. What I have shared by posting to this group I assumed to be confidential and not for the general public. I have also made reference about doctors (including their names) and others that I wouldn't want to get back to them or the public. I wouldn't mind writing my own story or tips for the book, just don't want things I've posted in confidentiality for this group to be taken and put into a book. I would just ask that someone research the legalities of writing a book. Presenting someone else's words or ideas as your own, whether intentional or not, constitutes plagiarism. Any time the original thought, words, or pictures (including e-mails) did not come from your own head, you must give credit to the original source by showing exactly where you found the material. C_53_Familial IPF_5/09Washington From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wed, November 11, 2009 6:32:00 AMSubject: Re: Re: Book i agree with that Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Embarq Customer <pattijo05@embarqmai l.com>Subject: Re: Re: BookTo: Breathe-Support@ yahoogroups. comDate: Wednesday, November 11, 2009, 7:49 AM I'm agreeable to any info from my posts being printed, anonymously though. Re: BookJack,I wholeheartedly agree with you about the heart-wrenching posts, "told from the heart," that would make this book a huge success among the general public. That's why I wrote that most members could just cut & paste previous posts to tell their stories because they were already so good. But Barbara & Beth make a really good point. Just because you & I have been writing on demand our whole lives doesn't mean the general public feels comfortable doing it. I think you said you taught college students like I did. Maybe your students were already good writing majors, but many of mine weren't, so I totally understand how people can be intimidated by a writing project. That's why I think a Questionnaire is a great idea. For one thing, we'll get responses from a lot more people, which I know you're hoping to see. And who knows? Sometimes just having a question to answer gets the juices flowing & stories come pouring out.So go for it, Barbara. I can't wait to see the Questionnaire. I think that's one thing that really can be posted on the Files section of our website, so everyone can download a copy. I would ask that you run it past a couple of us on the committee before you submit it though. Mostly because we might have an idea for another question to include & the read-only Files section can't easily be edited. For example, I think we should include a question asking permission to possibly use info from people's past postings with the caveat that they will have final approval over any edited version that's attributed to them. Whaddya ya'll think?Cees, S CalifPF 10/08> > > >> > > > Hi, I'm new here and need to hear from others who feel as old as I do.> > > I'm only 43 but my body is about 20 years older. I've battled Hodgkin's> > > Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on> > > oxygen 24/7, use a bi-pap and get out of breath with any movement. I am> > > in a rehab program 3x a week and was told I have a week diaphragm too> > > due to being laid up after some stomach surgery, so I am going to try> > > singing lessons to help me breath differently. I am so tired from> > > breathing, it takes so much energy. I am in a support group for the> > > cancer and in private therapy for everything else. But when does your> > > quality of life take priority over trying> > > > endlessly to beat all these> > > health issues? I have a king of a husband and a huge loving support> > > system but none of that can help me breath any better. Sorry for> > > complaining so soon, it's just so tough and I know someone out there has> > > walked in my shoes, I just need to know how do you keep on walking???> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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