Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 What's happening here? How did things get so twisted? Since when has our book with stories become limited to just " increasing awareness " in the general public? And who decided it can't include information for PFers? Since when did these goals become mutually exclusive and where was I when this happened? My intention for this book all along was " informational " -- for both the general public AND PFers, which by definition increases awareness in BOTH. When I first got to this board, my first major question was about the difference between ILD & PF. I had been diagnosed with ILD, yet when I went online to search for info, the topic of PF kept coming up. And the online info was scattered all over under different keywords. Color me extremely confused. I've since seen other Newbies question our alphabet soup of diseases, so obviously PFers want this information. But the general public needs to understand this too, don't you think? My second major question concerned the fact that EVERY website gave me 5 years max left to live & said my quality of life was going to get really bad. Like Sher, I discovered I had a death sentence while researching online. My doctor told me nothing. (Think shock, then horror, followed immediately by terror and an overwhelming feeling of being COMPLETELY ALONE. I didn't even have anyone nearby to tell.) The general public needs to read our stories & see what we go through, & Newbies need to find out they're not alone. Not to mention that apparently we can live much longer than that, especially if we learn how to take care of ourselves & demand the treatment that's available. (Include section about available treatment. And insert some of Pink Joyce's " tips " here too.) I didn't learn any of that in my online research. I'm learning that from this board, but I'm learning it in bits & pieces. PFers & their families need a centralized place for this info (our book). My next major posting as a Newby on this board concerned the return of terror after reading some of the postings from older members about their complications. Again, I've seen the same reaction from Newbies since then. While you guys didn't exactly put my mind at ease, you did explain in detail that these situations aren't common. But it sure would have been nice to know beforehand to ward off that second bout of terror. I think other Newbies would agree. Plus, again, these stories will not only bring " awareness " to the general public, but they will also provide important information. I could go on & on. My latest major problem posted just a couple days ago. Why keep going when our quality of life gets bad, either physically or emotionally? Again, both PFers and the general public will be hanging on every word in that answer. So what's the beef? (to quote an ancient commercial) Am I getting my point across? These are just a few examples of many. Why do we have to choose between a book for the general public & a book to help ourselves? As a former newspaper reporter, I belong to the school that says you can never collect too much information. We should collect all the info we can for both the general public & ourselves. I believe the majority of it will fit nicely into a book that both PFers & the general public will appreciate. And if some of the info we collect doesn't fit comfortably into a book for both factions, then so what? As Bruce pointed out, we have this wonderful Files section on our website where we can place any leftover advice for our PFers. And by the way, the book for the general public would include that website & a list of others that can also supply more info to PFers. I can't remember who said it (?), but maybe a book for the general public will eventually make the acorn as recognizable as the pink ribbon ( & that actually does come under " public awareness " ). But guess what? As a PFer, I didn't know what the acorn meant either until just a couple days ago when I forced myself to research it because I was too embarrassed to ask. So once again, this book is NOT just for one group or the other. We ALL need to know this information. Cees, S Calif PF 10/08 > > I created two polls or surveys. The first asks if you would like to > participate in a book that told your story to increase awareness of the > disease. The second asks if you would like to participate in a book to > provide advice and information to PF'ers. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 Cees Nothing is twisted and nothing has happened. requested polls. I tried to oblige. I worded them the best I knew to gather the information. I felt some people might have one interest or some the other and there seemed to be discussion between board members as to the purpose. If you don't like the polls, then start your own. But nothing was as you say " twisted. " > > > > I created two polls or surveys. The first asks if you would like to > > participate in a book that told your story to increase awareness of the > > disease. The second asks if you would like to participate in a book to > > provide advice and information to PF'ers. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 Cees i think this post should be saved in a file to be edited for the introduction of the book along with some of what Beth said Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Polls???To: Breathe-Support Date: Wednesday, November 11, 2009, 9:23 AM What's happening here? How did things get so twisted?Since when has our book with stories become limited to just "increasing awareness" in the general public? And who decided it can't include information for PFers? Since when did these goals become mutually exclusive and where was I when this happened?My intention for this book all along was "informational" -- for both the general public AND PFers, which by definition increases awareness in BOTH. When I first got to this board, my first major question was about the difference between ILD & PF. I had been diagnosed with ILD, yet when I went online to search for info, the topic of PF kept coming up. And the online info was scattered all over under different keywords. Color me extremely confused.I've since seen other Newbies question our alphabet soup of diseases, so obviously PFers want this information. But the general public needs to understand this too, don't you think?My second major question concerned the fact that EVERY website gave me 5 years max left to live & said my quality of life was going to get really bad. Like Sher, I discovered I had a death sentence while researching online. My doctor told me nothing. (Think shock, then horror, followed immediately by terror and an overwhelming feeling of being COMPLETELY ALONE. I didn't even have anyone nearby to tell.)The general public needs to read our stories & see what we go through, & Newbies need to find out they're not alone. Not to mention that apparently we can live much longer than that, especially if we learn how to take care of ourselves & demand the treatment that's available. (Include section about available treatment. And insert some of Pink Joyce's "tips" here too.) I didn't learn any of that in my online research. I'm learning that from this board, but I'm learning it in bits & pieces. PFers & their families need a centralized place for this info (our book). My next major posting as a Newby on this board concerned the return of terror after reading some of the postings from older members about their complications. Again, I've seen the same reaction from Newbies since then. While you guys didn't exactly put my mind at ease, you did explain in detail that these situations aren't common. But it sure would have been nice to know beforehand to ward off that second bout of terror.I think other Newbies would agree. Plus, again, these stories will not only bring "awareness" to the general public, but they will also provide important information.I could go on & on. My latest major problem posted just a couple days ago. Why keep going when our quality of life gets bad, either physically or emotionally? Again, both PFers and the general public will be hanging on every word in that answer.So what's the beef? (to quote an ancient commercial) Am I getting my point across? These are just a few examples of many. Why do we have to choose between a book for the general public & a book to help ourselves?As a former newspaper reporter, I belong to the school that says you can never collect too much information. We should collect all the info we can for both the general public & ourselves. I believe the majority of it will fit nicely into a book that both PFers & the general public will appreciate. And if some of the info we collect doesn't fit comfortably into a book for both factions, then so what? As Bruce pointed out, we have this wonderful Files section on our website where we can place any leftover advice for our PFers. And by the way, the book for the general public would include that website & a list of others that can also supply more info to PFers.I can't remember who said it (?), but maybe a book for the general public will eventually make the acorn as recognizable as the pink ribbon ( & that actually does come under "public awareness"). But guess what? As a PFer, I didn't know what the acorn meant either until just a couple days ago when I forced myself to research it because I was too embarrassed to ask. So once again, this book is NOT just for one group or the other. We ALL need to know this information. Cees, S CalifPF 10/08>> I created two polls or surveys. The first asks if you would like to> participate in a book that told your story to increase awareness of the> disease. The second asks if you would like to participate in a book to> provide advice and information to PF'ers.>__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 I saw Bruce's poll as what would I like to do not what would I like the book to do. Terre, IPF 6-08, FL > > > > > > I created two polls or surveys. The first asks if you would like to > > > participate in a book that told your story to increase awareness of > the > > > disease. The second asks if you would like to participate in a book > to > > > provide advice and information to PF'ers. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 Bruce i commend you for taking action and creating the polls we need to stop discussing and start creating Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Polls???To: Breathe-Support Date: Wednesday, November 11, 2009, 9:40 AM CeesNothing is twisted and nothing has happened. requested polls. Itried to oblige. I worded them the best I knew to gather theinformation. I felt some people might have one interest or some theother and there seemed to be discussion between board members as to thepurpose. If you don't like the polls, then start your own. But nothingwas as you say "twisted."> >> > I created two polls or surveys. The first asks if you would like to> > participate in a book that told your story to increase awareness ofthe> > disease. The second asks if you would like to participate in a bookto> > provide advice and information to PF'ers.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 Cees,I do believe you can never have enough knowledge. We can never know everything to know about something. While I am no writer/editor what if we do the book (however it finalizes) and if there is enough 'left over' information or stories we could provide a link to a public access file(as in you don't have to join the support group to access the file) or an additional cd including that info with the book. Just an idea.I have never been so excited about people I've never met as I am about this support group. Without you guys I never would have gone to NJH. I wouldn't have the hope or knowledge that comes from going there without everyone here.Getting off soapbox now, going back to work ha ha haDyane phoenix ipf 02> >> > I created two polls or surveys. The first asks if you would like to> > participate in a book that told your story to increase awareness of the> > disease. The second asks if you would like to participate in a book to> > provide advice and information to PF'ers.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 Cees.... A quick thought on your question... 'why do we have to choose between a book for the general public & a book to help ourselves?' I'm remembering it's important to answer the questions of 'who, what, where, when and why'...when one is writing. It's also important to know what "audience" one is writing to, for, or about. The focus may well be different. There could be a Self Help Book, or a book strictly about PF and for one with PF, or a book focused on "when your loved one has a life threatening illness' type of thing...on and on. A book so thick it would take 6 months to read (lol) is a turn off. It takes a lot of work to write a book and a lot of work to prepare an outline for a book. Some writers do not use an 'outline' but have SOME way of tracking their information. Collecting info is a sure necessity but it has to be gathered at one central location where editing can be done. It will be a difficult challenge if information is being gathered all across the country. In other words, the right hand has to know what the left hand is doing. Gee, I said a 'quick thought' didn't I and away I went! Your enthusiasm is a sure boost to the book! MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Polls??? Cees,I do believe you can never have enough knowledge. We can never know everything to know about something. While I am no writer/editor what if we do the book (however it finalizes) and if there is enough 'left over' information or stories we could provide a link to a public access file(as in you don't have to join the support group to access the file) or an additional cd including that info with the book. Just an idea.I have never been so excited about people I've never met as I am about this support group. Without you guys I never would have gone to NJH. I wouldn't have the hope or knowledge that comes from going there without everyone here.Getting off soapbox now, going back to work ha ha haDyane phoenix ipf 02> >> > I created two polls or surveys. The first asks if you would like to> > participate in a book that told your story to increase awareness of the> > disease. The second asks if you would like to participate in a book to> > provide advice and information to PF'ers.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 Joyce...you are right on I think. God gives us what we need most of the time. You make me feel good too. Knowing you are where you are taking care of the little creatures! I take good care of my Lola but no longer have other pets. Rich does not like cats, although when we have had one he was loving towards it! MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Polls??? Cees,I do believe you can never have enough knowledge. We can never know everything to know about something. While I am no writer/editor what if we do the book (however it finalizes) and if there is enough 'left over' information or stories we could provide a link to a public access file(as in you don't have to join the support group to access the file) or an additional cd including that info with the book. Just an idea.I have never been so excited about people I've never met as I am about this support group. Without you guys I never would have gone to NJH. I wouldn't have the hope or knowledge that comes from going there without everyone here.Getting off soapbox now, going back to work ha ha haDyane phoenix ipf 02> >> > I created two polls or surveys. The first asks if you would like to> > participate in a book that told your story to increase awareness of the> > disease. The second asks if you would like to participate in a book to> > provide advice and information to PF'ers.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 sher didn't you already write and publish a book? Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: Polls???To: Breathe-Support Date: Wednesday, November 11, 2009, 2:16 PM Cees.... A quick thought on your question... 'why do we have to choose between a book for the general public & a book to help ourselves?' I'm remembering it's important to answer the questions of 'who, what, where, when and why'...when one is writing. It's also important to know what "audience" one is writing to, for, or about. The focus may well be different. There could be a Self Help Book, or a book strictly about PF and for one with PF, or a book focused on "when your loved one has a life threatening illness' type of thing...on and on. A book so thick it would take 6 months to read (lol) is a turn off. It takes a lot of work to write a book and a lot of work to prepare an outline for a book. Some writers do not use an 'outline' but have SOME way of tracking their information. Collecting info is a sure necessity but it has to be gathered at one central location where editing can be done. It will be a difficult challenge if information is being gathered all across the country. In other words, the right hand has to know what the left hand is doing. Gee, I said a 'quick thought' didn't I and away I went! Your enthusiasm is a sure boost to the book! MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Polls??? Cees,I do believe you can never have enough knowledge. We can never know everything to know about something. While I am no writer/editor what if we do the book (however it finalizes) and if there is enough 'left over' information or stories we could provide a link to a public access file(as in you don't have to join the support group to access the file) or an additional cd including that info with the book. Just an idea.I have never been so excited about people I've never met as I am about this support group. Without you guys I never would have gone to NJH. I wouldn't have the hope or knowledge that comes from going there without everyone here.Getting off soapbox now, going back to work ha ha haDyane phoenix ipf 02> >> > I created two polls or surveys. The first asks if you would like to> > participate in a book that told your story to increase awareness of the> > disease. The second asks if you would like to participate in a book to> > provide advice and information to PF'ers.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009 Sher- a friend of mine told me that when I needed Hospice I should find homes for all my sweet dogs and send them away never to see them again...I became so upset at that! I Mean why didn't she say she would help me feed them and care for them? No, she wants me to send them all away! That is when I would most need their love and companionship...Joyce Re: Polls??? Cees,I do believe you can never have enough knowledge. We can never know everything to know about something. While I am no writer/editor what if we do the book (however it finalizes) and if there is enough 'left over' information or stories we could provide a link to a public access file(as in you don't have to join the support group to access the file) or an additional cd including that info with the book. Just an idea.I have never been so excited about people I've never met as I am about this support group. Without you guys I never would have gone to NJH. I wouldn't have the hope or knowledge that comes from going there without everyone here.Getting off soapbox now, going back to work ha ha haDyane phoenix ipf 02> >> > I created two polls or surveys. The first asks if you would like to> > participate in a book that told your story to increase awareness of the> > disease. The second asks if you would like to participate in a book to> > provide advice and information to PF'ers.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2009 Report Share Posted November 12, 2009 Joyce, Remember Hospice will help you in your own home! And then you won't have to send them away. And I seriously doubt you are ugly. One of my favorite books (big involved end of the world scifi) has as one of the main points in the book is that everyone has an outside face and an inside face. And regardless of what your outside face shows, it is God's inside face that counts. And Joyce your inside face makes Angelina look plain! Dyane Phoenix ipf 02 > > > > > > I created two polls or surveys. The first asks if you would like to > > > participate in a book that told your story to increase awareness of the > > > disease. The second asks if you would like to participate in a book to > > > provide advice and information to PF'ers. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2009 Report Share Posted November 13, 2009 Oh , I'm so sorry, but I think you misunderstood what I was trying to say. The posting you're referring to specifically related to the type of book we're writing. I meant that example to show what a GOOD idea it is to spill our guts, not only to each other on this board, but also to the general public in our book. As a matter of fact, when that terror hit me as a newby, I shared it on this board with the group & was met with a huge outpouring of love & understanding. And I also wrote that when I reach a more advanced stage myself, you better believe I'll be sharing every second of it with the rest of you. This support group has saved my sanity a couple times already & I only found it 6 weeks ago. I do sincerely regret using the word " older " in referring to members who have reached a more advanced stage. What I meant by " older members " was members who have been diagnosed longer. I just turned 60, for crying out loud, & some members here whose disease is more advanced than mine are only half my age. Again, I'm so sorry about the misunderstanding & I hope you'll forgive me if my poor word usage made you or anyone else feel defensive about sharing on this board. And I call myself a writer? HA! Note to everyone else: Sorry I've been so quiet the last couple days, especially regarding the book. It's been really, really busy here & I just caught up with the postings. Friday is another super busy day, so I'll probably be absent until at least this weekend. But I felt so bad about 's posting that I had to reassure her I feel EXACTLY the same about this group as she does. Well, as my beefy governor says, " I be back. " Cees, S Calif PF 10/08 > > > > > > I created two polls or surveys. The first asks if you would like to > > > participate in a book that told your story to increase awareness of the > > > disease. The second asks if you would like to participate in a book to > > > provide advice and information to PF'ers. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2009 Report Share Posted November 21, 2009 Sometimes you just need to read between the lines or take what ya need and leave the rest! C_53_Familial IPF_5/09Washington To: Breathe-Support Sent: Fri, November 13, 2009 11:31:15 PMSubject: Re: Polls??? Hey guys, I think we ALL have days when our nerves are so raw that we react negatively to a comment that somebody made on this board. Actually, that was exactly what happened to me when I wrote the original posting that got upset. Granted, she misunderstood what I was trying to say, but my original posting was in response to others that I also apparently misunderstood, according to Bruce. So it was a misunderstanding over a misunderstanding. It seems like... (southern drawl) "What we've got here is a failure to communicate. "It's ironic that so many of you claim you don't write well, yet it's me (a professional writer) who has gummed up communications here. I apologize. But let this be a lesson to you if you're afraid to write your story for the book. As I always told my students, NOBODY's first writing draft will ever win any prizes. That's what revisions and editors are for.Anyway, we're all in this together, right? So I know we're all going to keep supporting each other no matter what.Bunches of love,Cees, S CalifPF 10/08 > >> >> >> > I created two polls or surveys. The first asks if you would like to> >> > participate in a book that told your story to increase awareness of the> >> > disease. The second asks if you would like to participate in a book to> >> > provide advice and information to PF'ers.> >> >> >>> >> >> Quote Link to comment Share on other sites More sharing options...
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