Re: Re: Book

[Guest guest]

cees

your example sounds ok to me

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: BookTo: Breathe-Support Date: Wednesday, November 11, 2009, 12:44 AM

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???> > > >> > >> >>

[Guest guest]

cees

i think you should save this post in a specific file for the book

you make a couple of good points

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: BookTo: Breathe-Support Date: Wednesday, November 11, 2009, 1:19 AM

Beth, You also illustrated this point in a previous posting to me & I think it's a really important point. Could I suggest that you elaborate on it a little bit as a Forward/Introductio n to our book, partially explaining why we're writing it? Maybe you could add that serious research for this disease has only been a recent phenomenon. And that people like Peggy still have to educate their own nurses! And as you've admitted, even though you were a nurse, you didn't know what it was when you were diagnosed.Does this make sense to you? You've already said much of this stuff on the board, but I think it would make a perfect Introduction and make the book even more successful among the general public.Yes?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???> > >> >>

[Guest guest]

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---

Subject: Re: Re: BookTo: Breathe-Support Date: 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???> > > >> > >> >>

[Guest guest]

Beth

you write better than you give yourself credit for

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, 8:18 AM

Cees,

I agree this would be a very appropriate way to introduce all that we patients have to say. I'd be happy to give writing it a shot, trusting that someone more knowledgable than I will edit my words so that they make some kind of sense

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: ceesnews <ceesnews (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wed, November 11, 2009 1:19:16 AMSubject: Re: Book

Beth, You also illustrated this point in a previous posting to me & I think it's a really important point. Could I suggest that you elaborate on it a little bit as a Forward/Introductio n to our book, partially explaining why we're writing it? Maybe you could add that serious research for this disease has only been a recent phenomenon. And that people like Peggy still have to educate their own nurses! And as you've admitted, even though you were a nurse, you didn't know what it was when you were diagnosed.Does this make sense to you? You've already said much of this stuff on the board, but I think it would make a perfect Introduction and make the book even more successful among the general public.Yes?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???> > >> >>

[Guest guest]

i wonder if it would be a good idea to acknowledge in the book that Jack has bought oximeters for some of the members-- either by name or anonymously

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, 8:47 AM

Cees, I like the idea of the individual stories, and I think much of it could come from the individual's previous posts, if these are accessble. When I first came on board, the posts were my guide, not only

about how to manage life with IPF, but also how grim it is for many. The posts were real from the heart,

misspellings, dangling participles, poor grammar, none of which really matter, but it was gutsy writing.

I must admit I cried over many of them because they were so powerful. On the other hand, many of

them were uplifting in the same way and gave me periods of calm and allowed me to accept my

disease and evolve a way to deal with it.

I assume we can access many of those posts, a reather tedious job of reading and selecting, but I

think they are vital to what we are trying to do. Jack79/IPF - UIP/dx06/05 Maine

From: ceesnews <ceesnews (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wed, November 11, 2009 12:44:15 AMSubject: 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???> > > >> > >> >>

[Guest guest]

Bruce, First I want to say I truly appreciate all the time you spend helping me and others on this board. you are a fountain of knowledge regarding various drugs, what they do and do not do, when they may be helpful and when not but, I guess I feel different about PF com paired to Alzheimer's and breast cancer. Everyone has heard of both disease's and know a quite a bit about them and probably have donated to these good causes. However, most of the people I have talked with, and many many on this board never even heard of PF and the death sentence it gives, us until we were diagnosed. Obviously noone donated any thing to it. I think PF is way under publicized and unoticed.

I kinda feel like we are a train to Auschwitz and we are consoling each other and hugging but still headed for our destiny. It seems like Cees is saying lets DO something! It doesn't have to be "all consuming" and must be kept in perspective, but from the enthusiasm shown from several on the board maybe we should give it a try??? Maybe it won't end up being a NY best seller, or even a book at all, but rather a organized list as you mentioned.

I have a question, I think there are around 600 members that have joined this organization, but only a small percentage post. Can we get there mailing addresses and start a news letter and get more members on board for projects, donations etc. That's a lot of members and could be very powerful tool to get things going such as the T shirt project.

Subject: Re: BookTo: Breathe-Support Date: Tuesday, November 10, 2009, 6:29 PM

MB/JackA couple of comments.First, we have the Files section of this site. Thats the perfect placeto collect articles or paragraphs or stories or anything else related tothe book. Even if it doesn't ever make it to a book, then theinformation is there and can be used. I don't think it's necessary tocomplicate too much when there's a nice mechanism here that all of uscan access and that can benefit newcomers from the start rather thanwaiting for a completed product.Second, as to creating awareness of the disease, we do a little of thatevery day, but major awareness isn't going to happen until we get thatcelebrity factor. If Cook's brother had been a victim of PFinstead of cancer we would have gotten it a year ago through AmericanIdol. If a celebrity died and Hollywood rallied to have an annual fundraiser in their memory, we'd get it. I tried to get something going

fromthe death of Goulet, but sadly, never got a call, letter or emailresponded to. There are now links on his website to PFF and CPF butthats basically it. Now, I'm not meaning to disparage friends or familybecause they have their own issues to deal with that we can't know. Theydon't have a responsibility.Third, I think its great that many here are excited about this but Ialso applaud Beth warning against pressure or guilt. I don't meanto offend anyone, but my life isn't about PF and I'm not going to let itconsume me. Most of us have other things going on in our lives. Also,living life to its fullest is my greatest goal at this point. That maybe considered by many to be selfish. But I spent most of my life beingthe opposite and now that my time is short, I have to make choices. I'vethought about books or web sites or articles or other things before andI know that I'd get into them

and want to make them better and do moreand pretty soon I'd be obsessing over them and it would be like having afull time job again and I wouldn't be taking advantage of my remainingtime as I want to. Odds are great that I have less than 2 years and itcould be less than that and I say that not to be morbid and not becauseI think much of death. But I do think of all the things that I can dofor pleasure today and don't know that I'll be able to in months even. Ilove my family on the forum and participating here, but I had to setthat as my limit. I'll attend fund raisers like crazy Wally's (want tosee if he's reading) but I won't organize. I'd go to a support group andonce thought about organizing one for the DFW area. But, I realized thatit was just too much for me. I can't mentally or emotionally commit toprojects such as that. I admire all those who can.So for those with the energy and desire I

encourage forging ahead. I doagain suggest using the files section here and making the project assimple as possible. Each person needs to weigh the project with otherthings in their lives. I'm glad there are crusaders. I'm thankful everyday for those like Leanne. I see what she does. I also worry about hertrying to do too much sometimes... .it's allowed.PF is a cause close to all of us. It's very personal. I educate where Ican. Traveling I found so many opportunities to respond to questions andhand out brochures but only when they asked. However, there too. I don'texpect too much of my friends or others. There are so many worthycauses. Who decides which is most worthy? There are certainly worsediseases than PF (Alzheimers is the first that comes to my mind). Thereis progress being made and a tremendous amount of research for PF.Medical Science, in my opinion, is still in its infancy, not

advanced.Look at all the diseases we know so little about. PF and ConnectiveTissue Diseases are those impacting so many of us. Treatments will bediscovered. Future generations will benefit. There's just so much to bedone for this and many other diseases. But just look at those thatkilled huge numbers in the past and now are under control. Beth points out the difference between PF and Breast Cancer. Maybewe need a massive campaign just to encourage 6 minute walks, somethingso simple to detect lung conditions and lead to more diagnosis. But,unfortunately, we can't promise cures with early detection. I crusadedto everyone I knew some few years ago to get Colonoscopies. Why? Theysave lives. Find colon cancer early and it can be treated. I know. I hada resection and removal of a pre-cancerous tumor. So until we have thesame, there will be greater crusades for breast cancer and colon

cancer.Also, we may do ourselves disservices when we state so clearly there isno treatment for PF. I see it all the time. Define "Treatment." Firstfor some forms there are proven treatments. But for all forms there arethings to do to make life better and avoid complications. I considerthose treatments. We're treating here every day we tell someone to getan oximeter. Oxygen is a proven treatment to improve quality of life andlessen the likelihood of PH. Avoiding germs and getting quick medicalcare are treatments. Pulmonary Rehab is a treatment. Management of thedisease and our lives with it are treatments. Not cures. But treatments.Which brings me back to this board in my very long post. It's a greattreatment. Here I've learned more about living with the disease than Icould have any other way. Here I've had incredible mentors. Here I haveso many great role models. But, fortunately, here I've

also met someincredible people and that is far beyond sharing a disease. When I thinkof them I don't think first of PF. I think of the wonderful people theyare and then realize that they have PF. PF doesn't define Peggy and. They are a loving couple with loving friends and family. Peggy isa hugger. is a gentle giant. Peggy spreads love. Beth is anurse, a mother, a daughter, a gardener, a friend. I could go down thelist for dozens of you.Well, thats more than enough for now. Didn't mean to write a book indiscussing the book.> > >> > > Hi, I'm new here and need to hear from others who feel as old as Ido.> > I'm only 43 but my body is about 20 years older. I've battledHodgkin's> > Lymphoma 7x since 1995 and am still in the fight. Now I have PF, amon> > oxygen 24/7, use a bi-pap and get out of breath with any movement. Iam> > in a rehab program 3x a week and was told I have a week diaphragmtoo> > due to being laid up after some stomach surgery, so I am going totry> > 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 doesyour> > quality of life take priority over trying endlessly to beat allthese> > 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 therehas> > walked in my shoes, I just need to know how do you keep onwalking???> > >> >>