Guest guest Posted November 10, 2009 Report Share Posted November 10, 2009 I would love to help in editing and proofreading. At my house I am called the dictionary and proofreader/spellchecker.KathySubject: Re: BookTo: Breathe-Support Date: Tuesday, November 10, 2009, 5:11 AM OK everybody, enough talking. It's time for us to start doing. Do I sound bossy? Then, it's all the fault of this group. As Beth said, obviously I desperately need a reason to get out of bed in the morning. And in the year since I was diagnosed, nothing has gotten me as excited as the thought of working on this book. When nobody sent me any stories & nothing else happened, I was pretty heartbroken. But since we're talking about it again, I don't want the opportunity to slip away. My brain seems to be working on overtime & I can't shut it off even to sleep. I think it's time to set up a committee or list of volunteers or whatever to get this show on the road. From what I've gathered, we have several professional writers & editors on this board, including me. Some of us, and a couple other talented people, have already expressed an interest in working on this book project. I think this is a great start & we should begin delegating assignments. So here we are & what we've offered to do so far: Cees (me) -- Would love to work on editing personal stories, help organize chapters & chapter content, & maybe narrate some of it. Jack Marshall -- Offered to help w/editing when retirement starts in next month or 2 but didn't mention any specific area of interest. He suggested a possible title: VOICES FROM THE LUNGS. Pink Joyce -- Offered to collect a list of practical tips for living with PF. Barbara McD -- Offered to create a Questionnaire to help people organize their life stories with sections such as "who they are, what their DX is, how was it found, what are they doing for it, what advice do they wish to offer, etc, etc." Fay -- Offered to help write & edit in general and help organize chapters & chapter content. Beth -- Offered to help in any way. As Jack suggested & I agree, it's "critical to the book for Beth (and Bruce) to write the medical story." Mama Sher -- Has given good editing suggestions so far. Not sure if she has a special interest in any particular section. That's all I can remember right now. Am I missing any volunteer committee members? Please everyone jump in w/any suggestions you have or offers to work on the committee. But I think that any actual decisions should wait for a discussion by the actual committee members. We can meet in another chatroom or on the phone or personal emails or whatever the group thinks. Of course, we'd bring decisions back to the board for final approval. The rest of you should start thinking about writing down your stories. DO NOT PANIC! Personally, I think most of you could just copy & paste things you've already posted on this board about your lives. That's how good they are. Do NOT worry about spelling, punctuation, grammar, etc. Some of us are editors and/or writing teachers & have spent our lives working with copy that needs some help. In fact, I wish my college students could write as well as everything I've seen on this board. And for those who are too intimidated to start writing anything on their own, Barbara will soon have a Questionnaire to help you out. Peggy said some stories were submitted to Leanne a while back. I asked Leanne about them in one of my posts, but she probably never saw it. I'll email her personally & check on those. This is a team project, so any & all ideas, suggestions, etc. are more than welcome. I don't want to tie up the board postings too badly though, so after things start settling down & real work starts getting done, I'm thinking the discussion & planning should move to its own venue. I'm stepping off my soapbox now to give the rest of you a chance, but let's not allow this project to die out, OK? Please? (And let me know if I'm being too bossy. Sometimes I intimidate people w/o meaning to.) Cees, S Calif PF 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 11, 2009 Report Share Posted November 11, 2009  Joyce...I don't think there is a problem w/ fictious names. Fictious names are regularly used. A quote from someone dead is ok. We quote past presidents just to name one. MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Book Jack,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 11, 2009 Report Share Posted November 11, 2009  boy oh boy, I sure misspelled fictitious! Sorry gang! MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Book Jack,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 11, 2009 Report Share Posted November 11, 2009 thanks for the info sher Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: BookTo: Breathe-Support Date: Wednesday, November 11, 2009, 8:16 PM  Joyce...I don't think there is a problem w/ fictious names. Fictious names are regularly used. A quote from someone dead is ok. We quote past presidents just to name one. MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Book Jack,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 12, 2009 Report Share Posted November 12, 2009  Dawn...whatever you did to send this post, it came through fine...and everyone can see it. If you want a special subject or question just put it in the 'subject' line. If you want to respond to a post you just read, click on reply and you type in your response and send... I personally like getting mail from the group in my personal 'Inbox. Others prefer reading and answering from the web page. No silly questions here! MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Book Jack,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 12, 2009 Report Share Posted November 12, 2009 Thank you, each day I learn a little more, Dawn 43, Newtown Square, PAPF from radiation 07/2008 To: Breathe-Support Sent: Thu, November 12, 2009 5:35:22 PMSubject: Re: Re: Book  Dawn...whatever you did to send this post, it came through fine...and everyone can see it. If you want a special subject or question just put it in the 'subject' line. If you want to respond to a post you just read, click on reply and you type in your response and send... I personally like getting mail from the group in my personal 'Inbox. Others prefer reading and answering from the web page. No silly questions here! MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Book Jack,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 18, 2009 Report Share Posted November 18, 2009 Thanks, I started at Temple in Philly, did rehab there. then I went closer to home for more rehab to Paoli and I have an appt. Monday with their pulm. doc., UPenn is my next stop, thanks so much. Dawn 43, Newtown Square, PA PF from radiation 07/2008 To: Breathe-Support Sent: Fri, November 13, 2009 12:49:05 AMSubject: Re: Re: Book Dawn, What hospital are you going to?Penn is a Center of Excellence for PF!Get your doctor to get you an appointment there. They are wonderful. Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Dawn Urso wrote: I am so confused, sorry. Is this how I can answer/comment to the entire group or do I have to answer each person individually who responded to me? The posts are now in an "inbox" format but I was also looking at them through "my groups". Anyway, I hope this works. Since I am new to this whole thing I just asked Leanne to send me that informational packet. If I'm doing this wrong please someone let me know. Is there a "how to for dummies" for yahoo groups??? Cees, you have a terrific project to create and what an oppotunity to make a difference. I'm on board for writing a story and think the questionnaire is a great idea. I don't mind using my real name it's already out there for a lot of cancer & BMT sites. The more people we can reach out to the better, you will be a force to be reckoned with!!!! Thank you so much to the entire group for sharing and helping me see that I am not alone in this crazy thing. Your words of encouragement and life experience are truly priceless, thanks. Now for another question, IPF and PF. From what I understand IPF has an unknown cause and PF a known cause? Does that change medications that can be used to help? Like mine is from radiation treatments.. PF means scarring, how can anything undo that? What is Pirfenidone? I saw posts someplace but I can't find them now. Is that for both, IPF & PF? Thanks, Dawn From: Jack Marshall <mrshlljck (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, November 12, 2009 4:53:37 PMSubject: Re: Re: Book Oh MamaSher! Surely you know that to misspell is human. Jack79/IPF - UIP/dx06/05 Maine From: Sher Bauman <bofus6 (AT) verizon (DOT) . net>To: Breathe-Support@ yahoogroups. comSent: Wed, November 11, 2009 8:18:34 PMSubject: Re: Re: Book  boy oh boy, I sure misspelled fictitious! Sorry gang! MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Book Jack,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 18, 2009 Report Share Posted November 18, 2009 Dawn, I'm curious as to why you want to change from Temple to Penn. Do you have a concern? AB 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: Book Jack,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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