Guest guest Posted November 11, 2009 Report Share Posted November 11, 2009  Joyce... yes I did write and publish a book about 5 yrs ago or so. Took me 3 years to complete. 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 12, 2009 Report Share Posted November 12, 2009 Cees, I want to address a portion of your posting bellow. " 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. " Although I feel badly that you feel terified by reading some posts by us " older members " I must point out that this board is for us to share our experiences in dealing with PF. We are here to share and support one another through this horrible disease. We are deversified group of people who are all at different stages of the disease. We learn from each others experiences (good or bad.) It is common for those of us in the advanced stages of our disease to post what we are dealing with just as those of you in the early stages. You might find it terrifying, but as your disease progresses you will find the information valuable. Honestly, we're all terrifed to some extent with this disease and rightfully so. We've all been diagnosed with a terminal illness. Being this is an ONLINE SUPPORT GROUP it is important that we all share our lives with one another. It helps others to expect similar situations and how to deal with them. And even though one might be scared by another's posting it's important that we all support and encourage our fellow PFers that are having a hard time. I can't imagine feeling I should hold back posting about my progression. It would be mighty lonely not having my fellow PFer's to talk to going through this. Those who were on this board long before me are my inspiration. 34 FL IPF dx 1/06 > > > > 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 if you think the posting is going to make you uncomfortable, don't read it 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: Thursday, November 12, 2009, 7:19 PM Cees, I want to address a portion of your posting bellow. "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."Although I feel badly that you feel terified by reading some posts by us "older members" I must point out that this board is for us to share our experiences in dealing with PF. We are here to share and support one another through this horrible disease. We are deversified group of people who are all at different stages of the disease. We learn from each others experiences (good or bad.)It is common for those of us in the advanced stages of our disease to post what we are dealing with just as those of you in the early stages. You might find it terrifying, but as your disease progresses you will find the information valuable. Honestly, we're all terrifed to some extent with this disease and rightfully so. We've all been diagnosed with a terminal illness. Being this is an ONLINE SUPPORT GROUP it is important that we all share our lives with one another. It helps others to expect similar situations and how to deal with them. And even though one might be scared by another's posting it's important that we all support and encourage our fellow PFers that are having a hard time. I can't imagine feeling I should hold back posting about my progression. It would be mighty lonely not having my fellow PFer's to talk to going through this. Those who were on this board long before me are my inspiration. 34 FLIPF dx 1/06> >> > 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 WOW you go joyce <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: Breathe-Support Sent: Fri, November 13, 2009 8:04:25 PMSubject: Re: Re: Polls??? if you think the posting is going to make you uncomfortable, don't read it Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: hunnybunnybinky <brandy (AT) burnspc (DOT) com>Subject: Re: Polls???To: Breathe-Support@ yahoogroups. comDate: Thursday, November 12, 2009, 7:19 PM Cees, I want to address a portion of your posting bellow. "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."Although I feel badly that you feel terified by reading some posts by us "older members" I must point out that this board is for us to share our experiences in dealing with PF. We are here to share and support one another through this horrible disease. We are deversified group of people who are all at different stages of the disease. We learn from each others experiences (good or bad.)It is common for those of us in the advanced stages of our disease to post what we are dealing with just as those of you in the early stages. You might find it terrifying, but as your disease progresses you will find the information valuable. Honestly, we're all terrifed to some extent with this disease and rightfully so. We've all been diagnosed with a terminal illness. Being this is an ONLINE SUPPORT GROUP it is important that we all share our lives with one another. It helps others to expect similar situations and how to deal with them. And even though one might be scared by another's posting it's important that we all support and encourage our fellow PFers that are having a hard time. I can't imagine feeling I should hold back posting about my progression. It would be mighty lonely not having my fellow PFer's to talk to going through this. Those who were on this board long before me are my inspiration. 34 FLIPF dx 1/06> >> > 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 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 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...
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