Re: Book

November 11, 2009

Bruce

i also think that writing the book turns the negative into something positive

there are some people who might need to do this, they are creative and want to apply their creative talents to helping others with this disease

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: 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???> > >> >>

November 11, 2009

You are MUCH too humble, Beth. You always make an amazing amount of sense.

But I promise to look it over when you're finished. Or even AS you're writing it

if you'd like. Sometimes people like to do that. Not that you need it.

I'm setting up a special folder in my email account that supposedly will

automatically receive all emails of stuff sent to me for editing for the book.

Everyone just needs to put " Book " in the subject line.

BTW, I promised to personally answer everyone's post who wrote & helped me with

my own quality of life issues, & you're at the top of my list. But I suddenly

find myself doing a bunch of book stuff & my intentions seem to be falling by

the wayside. I'm so sorry.

But I was really touched by your response. Thank you.

And thank you to the rest of you who also wrote to help me. You can probably

tell that my life suddenly has purpose, which is what I really needed. Nothing

else has changed, but I feel MUCH better.

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???

> > > >

> > >

> >

>

November 11, 2009

Well said, Bob. Thank you.

Cees

> > > >

> > > > 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???

> > > >

> > >

> >

>

November 11, 2009

Geeta,

You NEVER sound silly or stupid! There are NO stupid questions or

comments. I hate the word STUPID!!! Not one of us knows everything, but

together we are stronger and mightier that our parts.

Dyane Phoenix ipf 02

> > > >

> > > > 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???

> > > >

> > >

> >

>

November 11, 2009

cees

i am really glad this book is giving you a purpose

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, 10:26 AM

You are MUCH too humble, Beth. You always make an amazing amount of sense. But I promise to look it over when you're finished. Or even AS you're writing it if you'd like. Sometimes people like to do that. Not that you need it. I'm setting up a special folder in my email account that supposedly will automatically receive all emails of stuff sent to me for editing for the book. Everyone just needs to put "Book" in the subject line.BTW, I promised to personally answer everyone's post who wrote & helped me with my own quality of life issues, & you're at the top of my list. But I suddenly find myself doing a bunch of book stuff & my intentions seem to be falling by the wayside. I'm so sorry.But I was really touched by your response. Thank you.And thank you to the rest of you who also wrote to help me. You can probably tell that my life suddenly has purpose, which is what I really needed. Nothing else has

changed, but I feel MUCH better.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???> > > >> > >> >>

November 11, 2009

i think there is a place with a list of all of the members

not everyone participates

and some people die without having anyone to tell us that they are no longer here -- a sad reality

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, 11:19 AM

Well said, Bob. Thank you.Cees> > > >> > > > 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???> > > >> > >> >>

November 11, 2009

i just reread part of peggy's post

i think one of the topics could be something like what to do within our limitations

like getting a Kindle -- i think that is what it is called, to be able to read books without physically going to the bookstore or the library

i should put this under tips

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: To: Breathe-Support Date: Sunday, November 8, 2009, 8:53 PM

Hi Group, Wow I just read 90 posts.. love it. Please know I just can't answer each one right now.

I have used the morphine 4 times since yesterday. What a relief for my chest. Funny thing is I remember

Lou saying she was flying hi on morphine... she would just laugh.. well I'm waiting.. LOL I don't feel anything.

just relief from the cough. I just can't believe it being the wimp I am.. This is a good thing. They also brought

several other drugs.. I don't think I will be needing them. Well see. She said one would relax me and stop the anxiety.

She looked at me like I was nuts. But I will tell them if I get antsy.

I am reading the posts through the day and will be posting more. It is hard to do with a houseful.

Yes I do feel like I am posting for another person.. out of body.. (only weighs 120, long lovely hair, beautiful, all the good stuff.)

Thats what I see in my mind.. must be the drugs .heehhee.

Love and welcome to all the newbies. Just remember to work on living not on dyeing. You can still have a full happy life.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

November 11, 2009

A kindle may not be necessary because they are so expensive.. I have a MP3 player and download books on to it from my library. All I need is a library card! Also, you can pay to havebooks downloaded onto the MP3 player from audio book clubs...Joyce

To: Breathe-Support Date: Sunday, November 8, 2009, 8:53 PM

Hi Group, Wow I just read 90 posts.. love it. Please know I just can't answer each one right now. I have used the morphine 4 times since yesterday. What a relief for my chest. Funny thing is I remember

Lou saying she was flying hi on morphine... she would just laugh.. well I'm waiting.. LOL I don't feel anything.

just relief from the cough. I just can't believe it being the wimp I am.. This is a good thing. They also brought

several other drugs.. I don't think I will be needing them. Well see. She said one would relax me and stop the anxiety.

She looked at me like I was nuts. But I will tell them if I get antsy.

I am reading the posts through the day and will be posting more. It is hard to do with a houseful.

Yes I do feel like I am posting for another person.. out of body.. (only weighs 120, long lovely hair, beautiful, all the good stuff.)

Thats what I see in my mind.. must be the drugs .heehhee.

Love and welcome to all the newbies. Just remember to work on living not on dyeing. You can still have a full happy life.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

November 11, 2009

rudy joyce

thanks i will add this to the tips file

i also forgot that some libraries will deliver books to the homebound and there is also reading for the blind

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, 12:21 PM

A kindle may not be necessary because they are so expensive.. I have a MP3 player and download books on to it from my library. All I need is a library card! Also, you can pay to havebooks downloaded onto the MP3 player from audio book clubs...Joyce

To: Breathe-Support@ yahoogroups. comDate: Sunday, November 8, 2009, 8:53 PM

Hi Group, Wow I just read 90 posts.. love it. Please know I just can't answer each one right now. I have used the morphine 4 times since yesterday. What a relief for my chest. Funny thing is I remember

Lou saying she was flying hi on morphine... she would just laugh.. well I'm waiting.. LOL I don't feel anything.

just relief from the cough. I just can't believe it being the wimp I am.. This is a good thing. They also brought

several other drugs.. I don't think I will be needing them. Well see. She said one would relax me and stop the anxiety.

She looked at me like I was nuts. But I will tell them if I get antsy.

I am reading the posts through the day and will be posting more. It is hard to do with a houseful.

Yes I do feel like I am posting for another person.. out of body.. (only weighs 120, long lovely hair, beautiful, all the good stuff.)

Thats what I see in my mind.. must be the drugs .heehhee.

Love and welcome to all the newbies. Just remember to work on living not on dyeing. You can still have a full happy life.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

November 11, 2009

Count me in on anything you guys do, I don't write worth a damn, But I could do something. Jack I think your a saint. JOHN

Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif">

To: Breathe-Support Sent: Wed, November 11, 2009 7:49:11 AMSubject: Re: Re: Book

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

November 11, 2009

ï»¿

Jack...in response to your suggestion of accessing some posts that are especially sad or uplifting.....I know YOU know this but perhaps there are others who do not know that confidentiality is a line we don't cross.

Permission to QUOTE a post has to have permission from that person.

Hope you're doing ok today!

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

November 11, 2009

I'm blushing, . Thanks for the new title, but I am far from earning it. Those who know me best would

laugh their head off. I tend to wander through the other side more. Wicked, is what I am.

Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Wed, November 11, 2009 1:55:47 PMSubject: Re: Re: Book

Count me in on anything you guys do, I don't write worth a damn, But I could do something. Jack I think your a saint. JOHN

Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif">

From: Embarq Customer <pattijo05@embarqmai l.com>To: Breathe-Support@ yahoogroups. comSent: Wed, November 11, 2009 7:49:11 AMSubject: Re: Re: Book

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

November 11, 2009

Very good ideas, Geeta. I will include them.

B

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Attitude is everything.

To: Breathe-Support Sent: Wed, November 11, 2009 11:24:20 AMSubject: Re: Book

Geeta,You NEVER sound silly or stupid! There are NO stupid questions orcomments. I hate the word STUPID!!! Not one of us knows everything, buttogether we are stronger and mightier that our parts.Dyane Phoenix ipf 02> > > >> > > > Hi, I'm new here and need to hear from others who feel as old asI do.> > > 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,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 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 forthe> > > 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 lovingsupport> > > 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 outthere has> > > walked in my shoes, I just need to know how do you keep onwalking???> > > >> > >> >>

November 11, 2009

Wicked is a good thing Jack

Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif">

To: Breathe-Support Sent: Wed, November 11, 2009 3:22:16 PMSubject: Re: Re: Book

I'm blushing, . Thanks for the new title, but I am far from earning it. Those who know me best would

laugh their head off. I tend to wander through the other side more. Wicked, is what I am.

Jack79/IPF - UIP/dx06/05 Maine

From: Soulliere <johnsbatik (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Wed, November 11, 2009 1:55:47 PMSubject: Re: Re: Book

Count me in on anything you guys do, I don't write worth a damn, But I could do something. Jack I think your a saint. JOHN

Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif">

From: Embarq Customer <pattijo05@embarqmai l.com>To: Breathe-Support@ yahoogroups. comSent: Wed, November 11, 2009 7:49:11 AMSubject: Re: Re: Book

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

November 11, 2009

bruce

i just read more of your post

i agree with your paragraph about treatment

there is no cure, but there are lots of treatments as you stated

that is the difference

and don't forget

somepeople think of transplant as a cure

but the reality is that you are trading the disease of pulmonary fibrosis for the disease of transplant and all of its ramifications