Re: Book

[Guest guest]

OK everybody, enough talking. It's time for us to start doing.

Do I sound bossy? Then, it's all the fault of this group. As Beth said,

obviously I desperately need a reason to get out of bed in the morning. And in

the year since I was diagnosed, nothing has gotten me as excited as the thought

of working on this book. When nobody sent me any stories & nothing else

happened, I was pretty heartbroken.

But since we're talking about it again, I don't want the opportunity to slip

away. My brain seems to be working on overtime & I can't shut it off even to

sleep. I think it's time to set up a committee or list of volunteers or whatever

to get this show on the road.

From what I've gathered, we have several professional writers & editors on this

board, including me. Some of us, and a couple other talented people, have

already expressed an interest in working on this book project. I think this is a

great start & we should begin delegating assignments.

So here we are & what we've offered to do so far:

Cees (me) -- Would love to work on editing personal stories, help organize

chapters & chapter content, & maybe narrate some of it.

Jack Marshall -- Offered to help w/editing when retirement starts in next month

or 2 but didn't mention any specific area of interest. He suggested a possible

title: VOICES FROM THE LUNGS.

Pink Joyce -- Offered to collect a list of practical tips for living with PF.

Barbara McD -- Offered to create a Questionnaire to help people organize their

life stories with sections such as " who they are, what their DX is, how was it

found, what are they doing for it, what advice do they wish to offer, etc, etc. "

Fay -- Offered to help write & edit in general and help organize chapters &

chapter content.

Beth -- Offered to help in any way. As Jack suggested & I agree, it's

" critical to the book for Beth (and Bruce) to write the medical story. "

Mama Sher -- Has given good editing suggestions so far. Not sure if she has a

special interest in any particular section.

That's all I can remember right now. Am I missing any volunteer committee

members? Please everyone jump in w/any suggestions you have or offers to work on

the committee. But I think that any actual decisions should wait for a

discussion by the actual committee members. We can meet in another chatroom or

on the phone or personal emails or whatever the group thinks. Of course, we'd

bring decisions back to the board for final approval.

The rest of you should start thinking about writing down your stories. DO NOT

PANIC! Personally, I think most of you could just copy & paste things you've

already posted on this board about your lives. That's how good they are.

Do NOT worry about spelling, punctuation, grammar, etc. Some of us are editors

and/or writing teachers & have spent our lives working with copy that needs some

help. In fact, I wish my college students could write as well as everything I've

seen on this board.

And for those who are too intimidated to start writing anything on their own,

Barbara will soon have a Questionnaire to help you out.

Peggy said some stories were submitted to Leanne a while back. I asked Leanne

about them in one of my posts, but she probably never saw it. I'll email her

personally & check on those.

This is a team project, so any & all ideas, suggestions, etc. are more than

welcome. I don't want to tie up the board postings too badly though, so after

things start settling down & real work starts getting done, I'm thinking the

discussion & planning should move to its own venue.

I'm stepping off my soapbox now to give the rest of you a chance, but let's not

allow this project to die out, OK? Please? (And let me know if I'm being too

bossy. Sometimes I intimidate people w/o meaning to.)

Cees, S Calif

PF 10/08

> > >

> > > Hi, I'm new here and need to hear from others who feel as old as I do.

> > I'm only 43 but my body is about 20 years older. I've battled Hodgkin's

> > Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on

> > oxygen 24/7, use a bi-pap and get out of breath with any movement. I am

> > in a rehab program 3x a week and was told I have a week diaphragm too

> > due to being laid up after some stomach surgery, so I am going to try

> > singing lessons to help me breath differently. I am so tired from

> > breathing, it takes so much energy. I am in a support group for the

> > cancer and in private therapy for everything else. But when does your

> > quality of life take priority over trying

>

> endlessly to beat all these

> > health issues? I have a king of a husband and a huge loving support

> > system but none of that can help me breath any better. Sorry for

> > complaining so soon, it's just so tough and I know someone out there has

> > walked in my shoes, I just need to know how do you keep on walking???

> > >

> >

>

[Guest guest]

Ah, Cees. You sound so much like me. LOL. More later.

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: Tue, November 10, 2009 8:11:20 AMSubject: Re: Book

OK everybody, enough talking. It's time for us to start doing.Do I sound bossy? Then, it's all the fault of this group. As Beth said, obviously I desperately need a reason to get out of bed in the morning. And in the year since I was diagnosed, nothing has gotten me as excited as the thought of working on this book. When nobody sent me any stories & nothing else happened, I was pretty heartbroken.But since we're talking about it again, I don't want the opportunity to slip away. My brain seems to be working on overtime & I can't shut it off even to sleep. I think it's time to set up a committee or list of volunteers or whatever to get this show on the road.From what I've gathered, we have several professional writers & editors on this board, including me. Some of us, and a couple other talented people, have already expressed an interest in working on this book project. I think this is a great start & we

should begin delegating assignments. So here we are & what we've offered to do so far:Cees (me) -- Would love to work on editing personal stories, help organize chapters & chapter content, & maybe narrate some of it.Jack Marshall -- Offered to help w/editing when retirement starts in next month or 2 but didn't mention any specific area of interest. He suggested a possible title: VOICES FROM THE LUNGS. Pink Joyce -- Offered to collect a list of practical tips for living with PF.Barbara McD -- Offered to create a Questionnaire to help people organize their life stories with sections such as "who they are, what their DX is, how was it found, what are they doing for it, what advice do they wish to offer, etc, etc." Fay -- Offered to help write & edit in general and help organize chapters & chapter content. Beth -- Offered to help in any way. As Jack suggested & I agree,

it's "critical to the book for Beth (and Bruce) to write the medical story." Mama Sher -- Has given good editing suggestions so far. Not sure if she has a special interest in any particular section.That's all I can remember right now. Am I missing any volunteer committee members? Please everyone jump in w/any suggestions you have or offers to work on the committee. But I think that any actual decisions should wait for a discussion by the actual committee members. We can meet in another chatroom or on the phone or personal emails or whatever the group thinks. Of course, we'd bring decisions back to the board for final approval.The rest of you should start thinking about writing down your stories. DO NOT PANIC! Personally, I think most of you could just copy & paste things you've already posted on this board about your lives. That's how good they are. Do NOT worry about spelling, punctuation, grammar, etc. Some of

us are editors and/or writing teachers & have spent our lives working with copy that needs some help. In fact, I wish my college students could write as well as everything I've seen on this board. And for those who are too intimidated to start writing anything on their own, Barbara will soon have a Questionnaire to help you out.Peggy said some stories were submitted to Leanne a while back. I asked Leanne about them in one of my posts, but she probably never saw it. I'll email her personally & check on those.This is a team project, so any & all ideas, suggestions, etc. are more than welcome. I don't want to tie up the board postings too badly though, so after things start settling down & real work starts getting done, I'm thinking the discussion & planning should move to its own venue.I'm stepping off my soapbox now to give the rest of you a chance, but let's not allow this project to die out, OK?

Please? (And let me know if I'm being too bossy. Sometimes I intimidate people w/o meaning to.)Cees, S 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

you're doing grea!

count me in...i have alot of experience too..would be willing to share my story too especially the vats part..

Dot/uip10/08/42/sa,tx

Subject: Re: BookTo: Breathe-Support Date: Tuesday, November 10, 2009, 7:11 AM

OK everybody, enough talking. It's time for us to start doing.Do I sound bossy? Then, it's all the fault of this group. As Beth said, obviously I desperately need a reason to get out of bed in the morning. And in the year since I was diagnosed, nothing has gotten me as excited as the thought of working on this book. When nobody sent me any stories & nothing else happened, I was pretty heartbroken.But since we're talking about it again, I don't want the opportunity to slip away. My brain seems to be working on overtime & I can't shut it off even to sleep. I think it's time to set up a committee or list of volunteers or whatever to get this show on the road.From what I've gathered, we have several professional writers & editors on this board, including me. Some of us, and a couple other talented people, have already expressed an interest in working on this book project. I think this is a great start &

we should begin delegating assignments. So here we are & what we've offered to do so far:Cees (me) -- Would love to work on editing personal stories, help organize chapters & chapter content, & maybe narrate some of it.Jack Marshall -- Offered to help w/editing when retirement starts in next month or 2 but didn't mention any specific area of interest. He suggested a possible title: VOICES FROM THE LUNGS. Pink Joyce -- Offered to collect a list of practical tips for living with PF.Barbara McD -- Offered to create a Questionnaire to help people organize their life stories with sections such as "who they are, what their DX is, how was it found, what are they doing for it, what advice do they wish to offer, etc, etc." Fay -- Offered to help write & edit in general and help organize chapters & chapter content. Beth -- Offered to help in any way. As Jack suggested & I agree,

it's "critical to the book for Beth (and Bruce) to write the medical story." Mama Sher -- Has given good editing suggestions so far. Not sure if she has a special interest in any particular section.That's all I can remember right now. Am I missing any volunteer committee members? Please everyone jump in w/any suggestions you have or offers to work on the committee. But I think that any actual decisions should wait for a discussion by the actual committee members. We can meet in another chatroom or on the phone or personal emails or whatever the group thinks. Of course, we'd bring decisions back to the board for final approval.The rest of you should start thinking about writing down your stories. DO NOT PANIC! Personally, I think most of you could just copy & paste things you've already posted on this board about your lives. That's how good they are. Do NOT worry about spelling, punctuation, grammar, etc. Some of

us are editors and/or writing teachers & have spent our lives working with copy that needs some help. In fact, I wish my college students could write as well as everything I've seen on this board. And for those who are too intimidated to start writing anything on their own, Barbara will soon have a Questionnaire to help you out.Peggy said some stories were submitted to Leanne a while back. I asked Leanne about them in one of my posts, but she probably never saw it. I'll email her personally & check on those.This is a team project, so any & all ideas, suggestions, etc. are more than welcome. I don't want to tie up the board postings too badly though, so after things start settling down & real work starts getting done, I'm thinking the discussion & planning should move to its own venue.I'm stepping off my soapbox now to give the rest of you a chance, but let's not allow this project to die out, OK?

Please? (And let me know if I'm being too bossy. Sometimes I intimidate people w/o meaning to.)Cees, S 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,GOOD FOR YOU!--Take this bull by the horns and get 'er done.I'm no writer and some days can scarcely keep my thoughts in order but I'll try to tell my boring story such that it is.  Just tell me where to send it.Thanks Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

I pray you enough.....Subject: Re: BookTo: Breathe-Support Date: Tuesday, November 10, 2009, 8:11 AM

 

OK everybody, enough talking. It's time for us to start doing.

Do I sound bossy? Then, it's all the fault of this group. As Beth said, obviously I desperately need a reason to get out of bed in the morning. And in the year since I was diagnosed, nothing has gotten me as excited as the thought of working on this book. When nobody sent me any stories & nothing else happened, I was pretty heartbroken.

But since we're talking about it again, I don't want the opportunity to slip away. My brain seems to be working on overtime & I can't shut it off even to sleep. I think it's time to set up a committee or list of volunteers or whatever to get this show on the road.

From what I've gathered, we have several professional writers & editors on this board, including me. Some of us, and a couple other talented people, have already expressed an interest in working on this book project. I think this is a great start & we should begin delegating assignments.

So here we are & what we've offered to do so far:

Cees (me) -- Would love to work on editing personal stories, help organize chapters & chapter content, & maybe narrate some of it.

Jack Marshall -- Offered to help w/editing when retirement starts in next month or 2 but didn't mention any specific area of interest. He suggested a possible title: VOICES FROM THE LUNGS.

Pink Joyce -- Offered to collect a list of practical tips for living with PF.

Barbara McD -- Offered to create a Questionnaire to help people organize their life stories with sections such as "who they are, what their DX is, how was it found, what are they doing for it, what advice do they wish to offer, etc, etc."

Fay -- Offered to help write & edit in general and help organize chapters & chapter content.

Beth -- Offered to help in any way. As Jack suggested & I agree, it's "critical to the book for Beth (and Bruce) to write the medical story."

Mama Sher -- Has given good editing suggestions so far. Not sure if she has a special interest in any particular section.

That's all I can remember right now. Am I missing any volunteer committee members? Please everyone jump in w/any suggestions you have or offers to work on the committee. But I think that any actual decisions should wait for a discussion by the actual committee members. We can meet in another chatroom or on the phone or personal emails or whatever the group thinks. Of course, we'd bring decisions back to the board for final approval.

The rest of you should start thinking about writing down your stories. DO NOT PANIC! Personally, I think most of you could just copy & paste things you've already posted on this board about your lives. That's how good they are.

Do NOT worry about spelling, punctuation, grammar, etc. Some of us are editors and/or writing teachers & have spent our lives working with copy that needs some help. In fact, I wish my college students could write as well as everything I've seen on this board.

And for those who are too intimidated to start writing anything on their own, Barbara will soon have a Questionnaire to help you out.

Peggy said some stories were submitted to Leanne a while back. I asked Leanne about them in one of my posts, but she probably never saw it. I'll email her personally & check on those.

This is a team project, so any & all ideas, suggestions, etc. are more than welcome. I don't want to tie up the board postings too badly though, so after things start settling down & real work starts getting done, I'm thinking the discussion & planning should move to its own venue.

I'm stepping off my soapbox now to give the rest of you a chance, but let's not allow this project to die out, OK? Please? (And let me know if I'm being too bossy. Sometimes I intimidate people w/o meaning to.)

Cees, S Calif

PF 10/08

> > >

> > > Hi, I'm new here and need to hear from others who feel as old as I do.

> > I'm only 43 but my body is about 20 years older. I've battled Hodgkin's

> > Lymphoma 7x since 1995 and am still in the fight. Now I have PF, am on

> > oxygen 24/7, use a bi-pap and get out of breath with any movement. I am

> > in a rehab program 3x a week and was told I have a week diaphragm too

> > due to being laid up after some stomach surgery, so I am going to try

> > singing lessons to help me breath differently. I am so tired from

> > breathing, it takes so much energy. I am in a support group for the

> > cancer and in private therapy for everything else. But when does your

> > quality of life take priority over trying

>

> endlessly to beat all these

> > health issues? I have a king of a husband and a huge loving support

> > system but none of that can help me breath any better. Sorry for

> > complaining so soon, it's just so tough and I know someone out there has

> > walked in my shoes, I just need to know how do you keep on walking???

> > >

> >

>

[Guest guest]

I think the questionaire would be GREAT! It would help to keep us

focused LOL and give a 'flow' to the stories. I can help do anything

computer wise. I'm great at doing not so hot on getting the ideas in

the first place ha ha

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???

> > > >

> > >

> >

>

[Guest guest]

Cees,Good for you, I can do anything on a computer but as I'v alsways told people..I don't want to be the Chief but I'll be the best Indian you've ever had. Email me anytime. You sound really good today, glad you are fired up.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???> > > >> > >> >>

[Guest guest]

I feel strongly that there is a market for such a book, especially if we base it on our stories, most of which

we have heard in bits and pieces on this board. However, what I haven't heard is any enthusiasm from

the board members. This puzzles me because so many of us complain about how many people do not acknowledge or are unaware of how terrible the disease is and that our live styles had nothing to do with

our having it. Only we, acting collectively, can bring significate public recognition to how devastating

PF, in all its many manfestations, has on us as individuals and our families.

I am willing to work on such a book, but only if the group is for it and willing to work for it, and will

put as much energy and time into a book as they do in posting to this board. If they did, I think

they would find it very cathartic.

To my knowledge, except for the Fibrosis Foundation, we have no person nor group standing up in

public fighting for us. We have no one to blame except ourselves. We need to do it. And I know

we can. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Mon, November 9, 2009 10:01:04 AMSubject: Re: Book

I have been thinking about the book idea, and wouldn't mind getting involved with a project like that. One thing I was mulling over was that it would be nice to include a collection of people's "stories": who they are (using an alias, if preferred), what is their DX, how was it found, what are they doing for it, what advice do they wish to offer, etc, etc. We (I?) could write up a questionnaire including all the above, and more, and people could submit their answers. Someone (or several "someones") could write the individual stories, maybe in consultation with the individual, and the story would be sent to the individual for approval before being published.

We could have a chapter on tips for living, an oxygen primer, hospice, etc, etc.

What do board members think about that?

Barbara McD

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

Beautiful Western NC

Attitude is everything.

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, November 9, 2009 8:31:47 AMSubject: Re: Re: PF from radiation

Cees,

First of all, no one is going to "give you hell". What you need is a hug and some solutions. Unfortunately I'm about 2800 miles to your east so that lets the hug out and solutions to our problems are few and far between aren't they?

From a practical point of view it just feels like you need a reason to get up in the morning. Have you thought about volunteering in your community? You are an intelligent, well educated woman Cees, and there are many places where your strengths and talents could be put to good use. The board has been good for me. Moderating here has helped me regain my sense of perspective about my own situation. But a few months ago I realized I needed to do something that would also get me out of the house and away from the computer. I haven't mentioned it here before but I'm training to be a "court appointed special advocate" or guardian ad litem in the family court system. I will be assigned to be the voice of one child. I'm told that most volunteer g.a.l.'s devote approximately 6-8 hours a month. I'm looking forward to getting started.

I only use this as an example. There are tons of opportunities in any community. Doing something for someone else is the best way to regain a sense of perspective about our own situations. Since your family isn't near, reaching out into your community is the next logical step. Many of us have similar family situations to what you describe. My brothers are content to ignore my illness going on the theory I suppose that if they don't acknowledge it, it doesn't exist.

Your medical insurance situation is a huge problem for you and I share your frustration. The fact that there is no pulmonary rehab is borderline criminal in my opinion. I know that one of our members (I think it's Joyce Rudy) participates in a "medically supervised exercise" program. You might want to ask around if there's something like that you can join. Failing that you might ask your doctor if he can prescribe a session or two with a respiratory therapist and/or a physical therapist to come up with an exercise program you can carry out on your own if necessary. It's less than ideal but it would be something.

I also want to thank you for your offer to help with editing a book of the personal stories of our members. This is a huge project and is an idea that has been floating around here for a long time. I think that it may be daunting for many of us to consider writing about our personal struggles but your offer stands and I appreciate it more than you know.

Cees, I don't know if any of this helps in any way at all. Please stick with us. I think this board can help us all just to feel less alone. The isolation of this disease, of feeling as though there is no one else who understands is overwhelming. That's the most important function of this board to dispel that and roll back that dark cloud. Come here and you instantly know you're not alone.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: ceesnews <ceesnews (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, November 9, 2009 3:48:49 AMSubject: Re: PF from radiation

Thank you, Bruce, for your answers to Dawn about quality of life because I desperately needed to hear it. I don't really feel any better, but I'm going to try to implement some of your suggestions. I feel like such a whining hypochondriac compared to you, Dawn. I'm still in the early stages of PF ( & likely other diseases but nobody seems to know yet.) But I've been really depressed lately & wondering why I should even try to go on. (BTW, I'm already on anti-depressants & have been for awhile. I KNOW they've been helping.)I'm depressed about problems that can't be made better by anti-depressants. Of course, No. 1 is this damn disease.I have no family w/in 700 miles. Divorced many years & no children. My siblings are spread out across the country & both parents are gone already. After my dx, I decided to host our 2nd family reunion at my house last summer because I didn't know what my future held. My

family was so surprised by "how good I looked" that they figure I must be exaggerating about this disease & don't want to hear about it anymore. (I saw some comments about this phenomenon on the board recently.)I'm not working anymore because of this disease & pretty much stopped seeing most of my friends a couple years ago because of a major blow-up w/my best friend. (BTW, I already tried to reconcile but she blew me off. Ironically, she's a respiratory therapist. But our blow-up was over how badly she treats her own mother, who has COPD. This was before I had any idea about my own disease.)My dearest friend now is in the last stages of emphysema & will be leaving us soon. He's actually more active than I am & puts me to shame. But I just don't seem to care enough about my own life to get active.I have a TERRIBLE attitude. I'm really angry about being stuck w/an HMO that won't let me go to a Center for Excellence

hospital or even get a 2nd opinion outside of its own program doctors unless I pay. It DOESN'T EVEN HAVE a pulmonary rehab program! And my pulmodoc got upset w/my email questions & refused to answer except during appts that I have to co-pay. (BTW, I was finally able to get an appt for next Thurs.)I spend most of my time on the phone & computer fighting w/bureaucracies. It took 8 months to get my cell phone co. to finally admit it overcharged me & return the money. Meanwhile, it cut off my service & put me thru hell. I'm fighting with one credit card co. for refusing to cancel pmt. to another business that defrauded me, & I'm fighting w/another credit card co. that just raised my rate to 24.99%. I was paying 3.99% because I have really good credit & have never been late. (I think they've learned I'm on disability & figure I'm an easy touch now.) I can stop using the card, but that won't help me pay the

balance.I'm filling out form after form to apply for anything that might help me, but they take SO long. I don't leave the house much anymore except for medical & dental appts, to buy groceries or visit my dying friend.My dog & 2 cats all died last year of old age, which devastated me. (Lesson learned -- NEVER get all your pets around the same age.) I finally got a darling 6-yr-old cat a few months ago. She's the one bright spot in my life.There's a saying about how life w/o purpose has no value & that's how I feel. I got really excited about the PF book idea or even writing a letter to the AMA & volunteered to collect & edit information. But nobody sent me anything or even acknowledged my offer.I'm so sorry to just whine on & on, especially since physically, I still have it so much better than many of you. But it just doesn't seem like there's anything to look forward to except worse medical

problems -- no purpose, no reason to keep going.I know I deserve it if you guys give me hell, but I honestly don't think I could handle it unless you do it really gently. I burst into tears over just about everything these days.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]

Jack:

Hear, hear!!! (Or should I say "here, here"?) We need a couple-three people to lead the effort, but we need all who can to help with the content. We could donate the proceeds to the Pulmonary Fibrosis Foundation. I'm in, Cees is in, and now you for sure, Jack. I'm starting to write the questionnaire NOW.

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: Tue, November 10, 2009 2:05:59 PMSubject: Re: Book

I feel strongly that there is a market for such a book, especially if we base it on our stories, most of which

we have heard in bits and pieces on this board. However, what I haven't heard is any enthusiasm from

the board members. This puzzles me because so many of us complain about how many people do not acknowledge or are unaware of how terrible the disease is and that our live styles had nothing to do with

our having it. Only we, acting collectively, can bring significate public recognition to how devastating

PF, in all its many manfestations, has on us as individuals and our families.

I am willing to work on such a book, but only if the group is for it and willing to work for it, and will

put as much energy and time into a book as they do in posting to this board. If they did, I think

they would find it very cathartic.

To my knowledge, except for the Fibrosis Foundation, we have no person nor group standing up in

public fighting for us. We have no one to blame except ourselves. We need to do it. And I know

we can. Jack79/IPF - UIP/dx06/05 Maine

From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, November 9, 2009 10:01:04 AMSubject: Re: Book

I have been thinking about the book idea, and wouldn't mind getting involved with a project like that. One thing I was mulling over was that it would be nice to include a collection of people's "stories": who they are (using an alias, if preferred), what is their DX, how was it found, what are they doing for it, what advice do they wish to offer, etc, etc. We (I?) could write up a questionnaire including all the above, and more, and people could submit their answers. Someone (or several "someones") could write the individual stories, maybe in consultation with the individual, and the story would be sent to the individual for approval before being published.

We could have a chapter on tips for living, an oxygen primer, hospice, etc, etc.

What do board members think about that?

Barbara McD

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

Beautiful Western NC

Attitude is everything.

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, November 9, 2009 8:31:47 AMSubject: Re: Re: PF from radiation

Cees,

First of all, no one is going to "give you hell". What you need is a hug and some solutions. Unfortunately I'm about 2800 miles to your east so that lets the hug out and solutions to our problems are few and far between aren't they?

From a practical point of view it just feels like you need a reason to get up in the morning. Have you thought about volunteering in your community? You are an intelligent, well educated woman Cees, and there are many places where your strengths and talents could be put to good use. The board has been good for me. Moderating here has helped me regain my sense of perspective about my own situation. But a few months ago I realized I needed to do something that would also get me out of the house and away from the computer. I haven't mentioned it here before but I'm training to be a "court appointed special advocate" or guardian ad litem in the family court system. I will be assigned to be the voice of one child. I'm told that most volunteer g.a.l.'s devote approximately 6-8 hours a month. I'm looking forward to getting started.

I only use this as an example. There are tons of opportunities in any community. Doing something for someone else is the best way to regain a sense of perspective about our own situations. Since your family isn't near, reaching out into your community is the next logical step. Many of us have similar family situations to what you describe. My brothers are content to ignore my illness going on the theory I suppose that if they don't acknowledge it, it doesn't exist.

Your medical insurance situation is a huge problem for you and I share your frustration. The fact that there is no pulmonary rehab is borderline criminal in my opinion. I know that one of our members (I think it's Joyce Rudy) participates in a "medically supervised exercise" program. You might want to ask around if there's something like that you can join. Failing that you might ask your doctor if he can prescribe a session or two with a respiratory therapist and/or a physical therapist to come up with an exercise program you can carry out on your own if necessary. It's less than ideal but it would be something.

I also want to thank you for your offer to help with editing a book of the personal stories of our members. This is a huge project and is an idea that has been floating around here for a long time. I think that it may be daunting for many of us to consider writing about our personal struggles but your offer stands and I appreciate it more than you know.

Cees, I don't know if any of this helps in any way at all. Please stick with us. I think this board can help us all just to feel less alone. The isolation of this disease, of feeling as though there is no one else who understands is overwhelming. That's the most important function of this board to dispel that and roll back that dark cloud. Come here and you instantly know you're not alone.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: ceesnews <ceesnews (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, November 9, 2009 3:48:49 AMSubject: Re: PF from radiation

Thank you, Bruce, for your answers to Dawn about quality of life because I desperately needed to hear it. I don't really feel any better, but I'm going to try to implement some of your suggestions. I feel like such a whining hypochondriac compared to you, Dawn. I'm still in the early stages of PF ( & likely other diseases but nobody seems to know yet.) But I've been really depressed lately & wondering why I should even try to go on. (BTW, I'm already on anti-depressants & have been for awhile. I KNOW they've been helping.)I'm depressed about problems that can't be made better by anti-depressants. Of course, No. 1 is this damn disease.I have no family w/in 700 miles. Divorced many years & no children. My siblings are spread out across the country & both parents are gone already. After my dx, I decided to host our 2nd family reunion at my house last summer because I didn't know what my future held. My

family was so surprised by "how good I looked" that they figure I must be exaggerating about this disease & don't want to hear about it anymore. (I saw some comments about this phenomenon on the board recently.)I'm not working anymore because of this disease & pretty much stopped seeing most of my friends a couple years ago because of a major blow-up w/my best friend. (BTW, I already tried to reconcile but she blew me off. Ironically, she's a respiratory therapist. But our blow-up was over how badly she treats her own mother, who has COPD. This was before I had any idea about my own disease.)My dearest friend now is in the last stages of emphysema & will be leaving us soon. He's actually more active than I am & puts me to shame. But I just don't seem to care enough about my own life to get active.I have a TERRIBLE attitude. I'm really angry about being stuck w/an HMO that won't let me go to a Center for Excellence

hospital or even get a 2nd opinion outside of its own program doctors unless I pay. It DOESN'T EVEN HAVE a pulmonary rehab program! And my pulmodoc got upset w/my email questions & refused to answer except during appts that I have to co-pay. (BTW, I was finally able to get an appt for next Thurs.)I spend most of my time on the phone & computer fighting w/bureaucracies. It took 8 months to get my cell phone co. to finally admit it overcharged me & return the money. Meanwhile, it cut off my service & put me thru hell. I'm fighting with one credit card co. for refusing to cancel pmt. to another business that defrauded me, & I'm fighting w/another credit card co. that just raised my rate to 24.99%. I was paying 3.99% because I have really good credit & have never been late. (I think they've learned I'm on disability & figure I'm an easy touch now.) I can stop using the card, but that won't help me pay the

balance.I'm filling out form after form to apply for anything that might help me, but they take SO long. I don't leave the house much anymore except for medical & dental appts, to buy groceries or visit my dying friend.My dog & 2 cats all died last year of old age, which devastated me. (Lesson learned -- NEVER get all your pets around the same age.) I finally got a darling 6-yr-old cat a few months ago. She's the one bright spot in my life.There's a saying about how life w/o purpose has no value & that's how I feel. I got really excited about the PF book idea or even writing a letter to the AMA & volunteered to collect & edit information. But nobody sent me anything or even acknowledged my offer.I'm so sorry to just whine on & on, especially since physically, I still have it so much better than many of you. But it just doesn't seem like there's anything to look forward to except worse medical

problems -- no purpose, no reason to keep going.I know I deserve it if you guys give me hell, but I honestly don't think I could handle it unless you do it really gently. I burst into tears over just about everything these days.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 agree with most of what you have suggested, particularly a small group which is responsible for

putting the book together. I think our member's individual stories are the heart of the book and should

be in their voice, misspellings included. I remember some posts, mostly from newly diagnosed members who are scared to death, which were chilling. I remember other posts written hysterically from members

who were racked with pain, angry with their doctors and pulmos; posts from others whose lists of

health problems were mind bogling. These are the real stories, told from the heart, that gives life

to our situation. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Tue, November 10, 2009 8:11:20 AMSubject: Re: Book

OK everybody, enough talking. It's time for us to start doing.Do I sound bossy? Then, it's all the fault of this group. As Beth said, obviously I desperately need a reason to get out of bed in the morning. And in the year since I was diagnosed, nothing has gotten me as excited as the thought of working on this book. When nobody sent me any stories & nothing else happened, I was pretty heartbroken.But since we're talking about it again, I don't want the opportunity to slip away. My brain seems to be working on overtime & I can't shut it off even to sleep. I think it's time to set up a committee or list of volunteers or whatever to get this show on the road.From what I've gathered, we have several professional writers & editors on this board, including me. Some of us, and a couple other talented people, have already expressed an interest in working on this book project. I think this is a great start & we

should begin delegating assignments. So here we are & what we've offered to do so far:Cees (me) -- Would love to work on editing personal stories, help organize chapters & chapter content, & maybe narrate some of it.Jack Marshall -- Offered to help w/editing when retirement starts in next month or 2 but didn't mention any specific area of interest. He suggested a possible title: VOICES FROM THE LUNGS. Pink Joyce -- Offered to collect a list of practical tips for living with PF.Barbara McD -- Offered to create a Questionnaire to help people organize their life stories with sections such as "who they are, what their DX is, how was it found, what are they doing for it, what advice do they wish to offer, etc, etc." Fay -- Offered to help write & edit in general and help organize chapters & chapter content. Beth -- Offered to help in any way. As Jack suggested & I agree,

it's "critical to the book for Beth (and Bruce) to write the medical story." Mama Sher -- Has given good editing suggestions so far. Not sure if she has a special interest in any particular section.That's all I can remember right now. Am I missing any volunteer committee members? Please everyone jump in w/any suggestions you have or offers to work on the committee. But I think that any actual decisions should wait for a discussion by the actual committee members. We can meet in another chatroom or on the phone or personal emails or whatever the group thinks. Of course, we'd bring decisions back to the board for final approval.The rest of you should start thinking about writing down your stories. DO NOT PANIC! Personally, I think most of you could just copy & paste things you've already posted on this board about your lives. That's how good they are. Do NOT worry about spelling, punctuation, grammar, etc. Some of

us are editors and/or writing teachers & have spent our lives working with copy that needs some help. In fact, I wish my college students could write as well as everything I've seen on this board. And for those who are too intimidated to start writing anything on their own, Barbara will soon have a Questionnaire to help you out.Peggy said some stories were submitted to Leanne a while back. I asked Leanne about them in one of my posts, but she probably never saw it. I'll email her personally & check on those.This is a team project, so any & all ideas, suggestions, etc. are more than welcome. I don't want to tie up the board postings too badly though, so after things start settling down & real work starts getting done, I'm thinking the discussion & planning should move to its own venue.I'm stepping off my soapbox now to give the rest of you a chance, but let's not allow this project to die out, OK?

Please? (And let me know if I'm being too bossy. Sometimes I intimidate people w/o meaning to.)Cees, S 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 am not a writer, editor or any of that but, I will help in any way I can. It seems like the biggest task will be harnessing all this energy on the board into a organized senergistic bodyBob IPF 1/09

Subject: Re: BookTo: Breathe-Support Date: Tuesday, November 10, 2009, 8:11 AM

OK everybody, enough talking. It's time for us to start doing.Do I sound bossy? Then, it's all the fault of this group. As Beth said, obviously I desperately need a reason to get out of bed in the morning. And in the year since I was diagnosed, nothing has gotten me as excited as the thought of working on this book. When nobody sent me any stories & nothing else happened, I was pretty heartbroken.But since we're talking about it again, I don't want the opportunity to slip away. My brain seems to be working on overtime & I can't shut it off even to sleep. I think it's time to set up a committee or list of volunteers or whatever to get this show on the road.From what I've gathered, we have several professional writers & editors on this board, including me. Some of us, and a couple other talented people, have already expressed an interest in working on this book project. I think this is a great start &

we should begin delegating assignments. So here we are & what we've offered to do so far:Cees (me) -- Would love to work on editing personal stories, help organize chapters & chapter content, & maybe narrate some of it.Jack Marshall -- Offered to help w/editing when retirement starts in next month or 2 but didn't mention any specific area of interest. He suggested a possible title: VOICES FROM THE LUNGS. Pink Joyce -- Offered to collect a list of practical tips for living with PF.Barbara McD -- Offered to create a Questionnaire to help people organize their life stories with sections such as "who they are, what their DX is, how was it found, what are they doing for it, what advice do they wish to offer, etc, etc." Fay -- Offered to help write & edit in general and help organize chapters & chapter content. Beth -- Offered to help in any way. As Jack suggested & I agree,

it's "critical to the book for Beth (and Bruce) to write the medical story." Mama Sher -- Has given good editing suggestions so far. Not sure if she has a special interest in any particular section.That's all I can remember right now. Am I missing any volunteer committee members? Please everyone jump in w/any suggestions you have or offers to work on the committee. But I think that any actual decisions should wait for a discussion by the actual committee members. We can meet in another chatroom or on the phone or personal emails or whatever the group thinks. Of course, we'd bring decisions back to the board for final approval.The rest of you should start thinking about writing down your stories. DO NOT PANIC! Personally, I think most of you could just copy & paste things you've already posted on this board about your lives. That's how good they are. Do NOT worry about spelling, punctuation, grammar, etc. Some of

us are editors and/or writing teachers & have spent our lives working with copy that needs some help. In fact, I wish my college students could write as well as everything I've seen on this board. And for those who are too intimidated to start writing anything on their own, Barbara will soon have a Questionnaire to help you out.Peggy said some stories were submitted to Leanne a while back. I asked Leanne about them in one of my posts, but she probably never saw it. I'll email her personally & check on those.This is a team project, so any & all ideas, suggestions, etc. are more than welcome. I don't want to tie up the board postings too badly though, so after things start settling down & real work starts getting done, I'm thinking the discussion & planning should move to its own venue.I'm stepping off my soapbox now to give the rest of you a chance, but let's not allow this project to die out, OK?

Please? (And let me know if I'm being too bossy. Sometimes I intimidate people w/o meaning to.)Cees, S 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]

Jack -

I agree that it would be best for the stories to be in the voice of the person whose tale it is. But there may be some who don't feel they CAN write, and a questionnaire would help all storytellers to remember to include some standard facts themselves. It is for that purpose I think a questionnaire would be useful.

And of course, permission must be gained from the people whose story will be published.

Just my humble opinion.

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: Tue, November 10, 2009 2:29:48 PMSubject: Re: Re: Book

Cees, I agree with most of what you have suggested, particularly a small group which is responsible for

putting the book together. I think our member's individual stories are the heart of the book and should

be in their voice, misspellings included. I remember some posts, mostly from newly diagnosed members who are scared to death, which were chilling. I remember other posts written hysterically from members

who were racked with pain, angry with their doctors and pulmos; posts from others whose lists of

health problems were mind bogling. These are the real stories, told from the heart, that gives life

to our situation. Jack79/IPF - UIP/dx06/05 Maine

From: ceesnews <ceesnews (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, November 10, 2009 8:11:20 AMSubject: Re: Book

OK everybody, enough talking. It's time for us to start doing.Do I sound bossy? Then, it's all the fault of this group. As Beth said, obviously I desperately need a reason to get out of bed in the morning. And in the year since I was diagnosed, nothing has gotten me as excited as the thought of working on this book. When nobody sent me any stories & nothing else happened, I was pretty heartbroken.But since we're talking about it again, I don't want the opportunity to slip away. My brain seems to be working on overtime & I can't shut it off even to sleep. I think it's time to set up a committee or list of volunteers or whatever to get this show on the road.From what I've gathered, we have several professional writers & editors on this board, including me. Some of us, and a couple other talented people, have already expressed an interest in working on this book project. I think this is a great start & we

should begin delegating assignments. So here we are & what we've offered to do so far:Cees (me) -- Would love to work on editing personal stories, help organize chapters & chapter content, & maybe narrate some of it.Jack Marshall -- Offered to help w/editing when retirement starts in next month or 2 but didn't mention any specific area of interest. He suggested a possible title: VOICES FROM THE LUNGS. Pink Joyce -- Offered to collect a list of practical tips for living with PF.Barbara McD -- Offered to create a Questionnaire to help people organize their life stories with sections such as "who they are, what their DX is, how was it found, what are they doing for it, what advice do they wish to offer, etc, etc." Fay -- Offered to help write & edit in general and help organize chapters & chapter content. Beth -- Offered to help in any way. As Jack suggested & I agree,

it's "critical to the book for Beth (and Bruce) to write the medical story." Mama Sher -- Has given good editing suggestions so far. Not sure if she has a special interest in any particular section.That's all I can remember right now. Am I missing any volunteer committee members? Please everyone jump in w/any suggestions you have or offers to work on the committee. But I think that any actual decisions should wait for a discussion by the actual committee members. We can meet in another chatroom or on the phone or personal emails or whatever the group thinks. Of course, we'd bring decisions back to the board for final approval.The rest of you should start thinking about writing down your stories. DO NOT PANIC! Personally, I think most of you could just copy & paste things you've already posted on this board about your lives. That's how good they are. Do NOT worry about spelling, punctuation, grammar, etc. Some of

us are editors and/or writing teachers & have spent our lives working with copy that needs some help. In fact, I wish my college students could write as well as everything I've seen on this board. And for those who are too intimidated to start writing anything on their own, Barbara will soon have a Questionnaire to help you out.Peggy said some stories were submitted to Leanne a while back. I asked Leanne about them in one of my posts, but she probably never saw it. I'll email her personally & check on those.This is a team project, so any & all ideas, suggestions, etc. are more than welcome. I don't want to tie up the board postings too badly though, so after things start settling down & real work starts getting done, I'm thinking the discussion & planning should move to its own venue.I'm stepping off my soapbox now to give the rest of you a chance, but let's not allow this project to die out, OK?

Please? (And let me know if I'm being too bossy. Sometimes I intimidate people w/o meaning to.)Cees, S 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]

How right you are, Bob. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Tue, November 10, 2009 2:37:02 PMSubject: Re: Re: Book

Cees,

I am not a writer, editor or any of that but, I will help in any way I can. It seems like the biggest task will be harnessing all this energy on the board into a organized senergistic bodyBob IPF 1/09

From: ceesnews <ceesnews (AT) yahoo (DOT) com>Subject: Re: BookTo: Breathe-Support@ yahoogroups. comDate: Tuesday, November 10, 2009, 8:11 AM

OK everybody, enough talking. It's time for us to start doing.Do I sound bossy? Then, it's all the fault of this group. As Beth said, obviously I desperately need a reason to get out of bed in the morning. And in the year since I was diagnosed, nothing has gotten me as excited as the thought of working on this book. When nobody sent me any stories & nothing else happened, I was pretty heartbroken.But since we're talking about it again, I don't want the opportunity to slip away. My brain seems to be working on overtime & I can't shut it off even to sleep. I think it's time to set up a committee or list of volunteers or whatever to get this show on the road.From what I've gathered, we have several professional writers & editors on this board, including me. Some of us, and a couple other talented people, have already expressed an interest in working on this book project. I think this is a great start &

we should begin delegating assignments. So here we are & what we've offered to do so far:Cees (me) -- Would love to work on editing personal stories, help organize chapters & chapter content, & maybe narrate some of it.Jack Marshall -- Offered to help w/editing when retirement starts in next month or 2 but didn't mention any specific area of interest. He suggested a possible title: VOICES FROM THE LUNGS. Pink Joyce -- Offered to collect a list of practical tips for living with PF.Barbara McD -- Offered to create a Questionnaire to help people organize their life stories with sections such as "who they are, what their DX is, how was it found, what are they doing for it, what advice do they wish to offer, etc, etc." Fay -- Offered to help write & edit in general and help organize chapters & chapter content. Beth -- Offered to help in any way. As Jack suggested & I agree,

it's "critical to the book for Beth (and Bruce) to write the medical story." Mama Sher -- Has given good editing suggestions so far. Not sure if she has a special interest in any particular section.That's all I can remember right now. Am I missing any volunteer committee members? Please everyone jump in w/any suggestions you have or offers to work on the committee. But I think that any actual decisions should wait for a discussion by the actual committee members. We can meet in another chatroom or on the phone or personal emails or whatever the group thinks. Of course, we'd bring decisions back to the board for final approval.The rest of you should start thinking about writing down your stories. DO NOT PANIC! Personally, I think most of you could just copy & paste things you've already posted on this board about your lives. That's how good they are. Do NOT worry about spelling, punctuation, grammar, etc. Some of

us are editors and/or writing teachers & have spent our lives working with copy that needs some help. In fact, I wish my college students could write as well as everything I've seen on this board. And for those who are too intimidated to start writing anything on their own, Barbara will soon have a Questionnaire to help you out.Peggy said some stories were submitted to Leanne a while back. I asked Leanne about them in one of my posts, but she probably never saw it. I'll email her personally & check on those.This is a team project, so any & all ideas, suggestions, etc. are more than welcome. I don't want to tie up the board postings too badly though, so after things start settling down & real work starts getting done, I'm thinking the discussion & planning should move to its own venue.I'm stepping off my soapbox now to give the rest of you a chance, but let's not allow this project to die out, OK?

Please? (And let me know if I'm being too bossy. Sometimes I intimidate people w/o meaning to.)Cees, S 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]

Hi Cees,

I think you have a great idea about the book. I'm not sure I have anything to offer, but I'll continue to think what I could do. I do think we need to have a separate site to filter this info. To do it on the board would just overwhelm the board. Thanks for the energy and enthusiasm. We need it.

I also understand your rant the other day because I have many of them but I figure that is why we are hear to support one another.

AB

Subject: Re: BookTo: Breathe-Support Date: Tuesday, November 10, 2009, 8:11 AM

OK everybody, enough talking. It's time for us to start doing.Do I sound bossy? Then, it's all the fault of this group. As Beth said, obviously I desperately need a reason to get out of bed in the morning. And in the year since I was diagnosed, nothing has gotten me as excited as the thought of working on this book. When nobody sent me any stories & nothing else happened, I was pretty heartbroken.But since we're talking about it again, I don't want the opportunity to slip away. My brain seems to be working on overtime & I can't shut it off even to sleep. I think it's time to set up a committee or list of volunteers or whatever to get this show on the road.From what I've gathered, we have several professional writers & editors on this board, including me. Some of us, and a couple other talented people, have already expressed an interest in working on this book project. I think this is a great start &

we should begin delegating assignments. So here we are & what we've offered to do so far:Cees (me) -- Would love to work on editing personal stories, help organize chapters & chapter content, & maybe narrate some of it.Jack Marshall -- Offered to help w/editing when retirement starts in next month or 2 but didn't mention any specific area of interest. He suggested a possible title: VOICES FROM THE LUNGS. Pink Joyce -- Offered to collect a list of practical tips for living with PF.Barbara McD -- Offered to create a Questionnaire to help people organize their life stories with sections such as "who they are, what their DX is, how was it found, what are they doing for it, what advice do they wish to offer, etc, etc." Fay -- Offered to help write & edit in general and help organize chapters & chapter content. Beth -- Offered to help in any way. As Jack suggested & I agree,

it's "critical to the book for Beth (and Bruce) to write the medical story." Mama Sher -- Has given good editing suggestions so far. Not sure if she has a special interest in any particular section.That's all I can remember right now. Am I missing any volunteer committee members? Please everyone jump in w/any suggestions you have or offers to work on the committee. But I think that any actual decisions should wait for a discussion by the actual committee members. We can meet in another chatroom or on the phone or personal emails or whatever the group thinks. Of course, we'd bring decisions back to the board for final approval.The rest of you should start thinking about writing down your stories. DO NOT PANIC! Personally, I think most of you could just copy & paste things you've already posted on this board about your lives. That's how good they are. Do NOT worry about spelling, punctuation, grammar, etc. Some of

us are editors and/or writing teachers & have spent our lives working with copy that needs some help. In fact, I wish my college students could write as well as everything I've seen on this board. And for those who are too intimidated to start writing anything on their own, Barbara will soon have a Questionnaire to help you out.Peggy said some stories were submitted to Leanne a while back. I asked Leanne about them in one of my posts, but she probably never saw it. I'll email her personally & check on those.This is a team project, so any & all ideas, suggestions, etc. are more than welcome. I don't want to tie up the board postings too badly though, so after things start settling down & real work starts getting done, I'm thinking the discussion & planning should move to its own venue.I'm stepping off my soapbox now to give the rest of you a chance, but let's not allow this project to die out, OK?

Please? (And let me know if I'm being too bossy. Sometimes I intimidate people w/o meaning to.)Cees, S 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]

Jack,

I agree that the idea for a book is an excellent one and I will do EVERYTHING I can to help. It's not really that difficult however to understand why some members hesitate to take on a project like this, even if there part of the project is relatively small.

Sometimes it's easy to lose sight of the ongoing battle some of us are waging just to maintain our lives. It's hard to tell how much someone is struggling with the minutiae of this illness from their board posts. Taking on an additional project can be daunting even if it's something you think is important.

Trust me I agree this is a great and important idea. I do think the questionaire idea would be much easier for the average person to cope with rather than just being told to 'write your story'. I want to see this work out, and I'm not trying to dampen anyones enthusiasm. I think I'm just trying to explain why you haven't seen the groundswell that you expected.

Here's something that may illustrate this better. Our statistics are always compared to breast cancer because we lose roughly the same number of people to PF each year as die from breast cancer. But here is a critical difference. There are literally millions of 'breast cancer survivors' out there. Those comparatively healthy survivors are out there advocating, working, raising money and awareness. We don't have legions of survivors out there. Sorry to be blunt but we die rather uniformly. Some sooner, some later but this disease is virtually 100% fatal at the present. That contributes to the lack of awareness in the general public, many times we don't live long enough or feel well enough to get the attention necessary to change what needs to be changed.

So we start where we can and do what's possible. I'm excited because I do think this is important. I just want to be cautious about appearing to criticise those who for whatever reason choose not to participate. All of us are already carrying a 'supersize' burden. This disease is a major drain on all our energy and resource and our focus on the board needs to be one of support and understanding.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tue, November 10, 2009 2:05:59 PMSubject: Re: Book

I feel strongly that there is a market for such a book, especially if we base it on our stories, most of which

we have heard in bits and pieces on this board. However, what I haven't heard is any enthusiasm from

the board members. This puzzles me because so many of us complain about how many people do not acknowledge or are unaware of how terrible the disease is and that our live styles had nothing to do with

our having it. Only we, acting collectively, can bring significate public recognition to how devastating

PF, in all its many manfestations, has on us as individuals and our families.

I am willing to work on such a book, but only if the group is for it and willing to work for it, and will

put as much energy and time into a book as they do in posting to this board. If they did, I think

they would find it very cathartic.

To my knowledge, except for the Fibrosis Foundation, we have no person nor group standing up in

public fighting for us. We have no one to blame except ourselves. We need to do it. And I know

we can. Jack79/IPF - UIP/dx06/05 Maine

From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, November 9, 2009 10:01:04 AMSubject: Re: Book

I have been thinking about the book idea, and wouldn't mind getting involved with a project like that. One thing I was mulling over was that it would be nice to include a collection of people's "stories": who they are (using an alias, if preferred), what is their DX, how was it found, what are they doing for it, what advice do they wish to offer, etc, etc. We (I?) could write up a questionnaire including all the above, and more, and people could submit their answers. Someone (or several "someones") could write the individual stories, maybe in consultation with the individual, and the story would be sent to the individual for approval before being published.

We could have a chapter on tips for living, an oxygen primer, hospice, etc, etc.

What do board members think about that?

Barbara McD

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

Beautiful Western NC

Attitude is everything.

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, November 9, 2009 8:31:47 AMSubject: Re: Re: PF from radiation

Cees,

First of all, no one is going to "give you hell". What you need is a hug and some solutions. Unfortunately I'm about 2800 miles to your east so that lets the hug out and solutions to our problems are few and far between aren't they?

From a practical point of view it just feels like you need a reason to get up in the morning. Have you thought about volunteering in your community? You are an intelligent, well educated woman Cees, and there are many places where your strengths and talents could be put to good use. The board has been good for me. Moderating here has helped me regain my sense of perspective about my own situation. But a few months ago I realized I needed to do something that would also get me out of the house and away from the computer. I haven't mentioned it here before but I'm training to be a "court appointed special advocate" or guardian ad litem in the family court system. I will be assigned to be the voice of one child. I'm told that most volunteer g.a.l.'s devote approximately 6-8 hours a month. I'm looking forward to getting started.

I only use this as an example. There are tons of opportunities in any community. Doing something for someone else is the best way to regain a sense of perspective about our own situations. Since your family isn't near, reaching out into your community is the next logical step. Many of us have similar family situations to what you describe. My brothers are content to ignore my illness going on the theory I suppose that if they don't acknowledge it, it doesn't exist.

Your medical insurance situation is a huge problem for you and I share your frustration. The fact that there is no pulmonary rehab is borderline criminal in my opinion. I know that one of our members (I think it's Joyce Rudy) participates in a "medically supervised exercise" program. You might want to ask around if there's something like that you can join. Failing that you might ask your doctor if he can prescribe a session or two with a respiratory therapist and/or a physical therapist to come up with an exercise program you can carry out on your own if necessary. It's less than ideal but it would be something.

I also want to thank you for your offer to help with editing a book of the personal stories of our members. This is a huge project and is an idea that has been floating around here for a long time. I think that it may be daunting for many of us to consider writing about our personal struggles but your offer stands and I appreciate it more than you know.

Cees, I don't know if any of this helps in any way at all. Please stick with us. I think this board can help us all just to feel less alone. The isolation of this disease, of feeling as though there is no one else who understands is overwhelming. That's the most important function of this board to dispel that and roll back that dark cloud. Come here and you instantly know you're not alone.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: ceesnews <ceesnews (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, November 9, 2009 3:48:49 AMSubject: Re: PF from radiation

Thank you, Bruce, for your answers to Dawn about quality of life because I desperately needed to hear it. I don't really feel any better, but I'm going to try to implement some of your suggestions. I feel like such a whining hypochondriac compared to you, Dawn. I'm still in the early stages of PF ( & likely other diseases but nobody seems to know yet.) But I've been really depressed lately & wondering why I should even try to go on. (BTW, I'm already on anti-depressants & have been for awhile. I KNOW they've been helping.)I'm depressed about problems that can't be made better by anti-depressants. Of course, No. 1 is this damn disease.I have no family w/in 700 miles. Divorced many years & no children. My siblings are spread out across the country & both parents are gone already. After my dx, I decided to host our 2nd family reunion at my house last summer because I didn't know what my future held. My

family was so surprised by "how good I looked" that they figure I must be exaggerating about this disease & don't want to hear about it anymore. (I saw some comments about this phenomenon on the board recently.)I'm not working anymore because of this disease & pretty much stopped seeing most of my friends a couple years ago because of a major blow-up w/my best friend. (BTW, I already tried to reconcile but she blew me off. Ironically, she's a respiratory therapist. But our blow-up was over how badly she treats her own mother, who has COPD. This was before I had any idea about my own disease.)My dearest friend now is in the last stages of emphysema & will be leaving us soon. He's actually more active than I am & puts me to shame. But I just don't seem to care enough about my own life to get active.I have a TERRIBLE attitude. I'm really angry about being stuck w/an HMO that won't let me go to a Center for Excellence

hospital or even get a 2nd opinion outside of its own program doctors unless I pay. It DOESN'T EVEN HAVE a pulmonary rehab program! And my pulmodoc got upset w/my email questions & refused to answer except during appts that I have to co-pay. (BTW, I was finally able to get an appt for next Thurs.)I spend most of my time on the phone & computer fighting w/bureaucracies. It took 8 months to get my cell phone co. to finally admit it overcharged me & return the money. Meanwhile, it cut off my service & put me thru hell. I'm fighting with one credit card co. for refusing to cancel pmt. to another business that defrauded me, & I'm fighting w/another credit card co. that just raised my rate to 24.99%. I was paying 3.99% because I have really good credit & have never been late. (I think they've learned I'm on disability & figure I'm an easy touch now.) I can stop using the card, but that won't help me pay the

balance.I'm filling out form after form to apply for anything that might help me, but they take SO long. I don't leave the house much anymore except for medical & dental appts, to buy groceries or visit my dying friend.My dog & 2 cats all died last year of old age, which devastated me. (Lesson learned -- NEVER get all your pets around the same age.) I finally got a darling 6-yr-old cat a few months ago. She's the one bright spot in my life.There's a saying about how life w/o purpose has no value & that's how I feel. I got really excited about the PF book idea or even writing a letter to the AMA & volunteered to collect & edit information. But nobody sent me anything or even acknowledged my offer.I'm so sorry to just whine on & on, especially since physically, I still have it so much better than many of you. But it just doesn't seem like there's anything to look forward to except worse medical

problems -- no purpose, no reason to keep going.I know I deserve it if you guys give me hell, but I honestly don't think I could handle it unless you do it really gently. I burst into tears over just about everything these days.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]

MB/Jack

A couple of comments.

First, we have the Files section of this site. Thats the perfect place

to collect articles or paragraphs or stories or anything else related to

the book. Even if it doesn't ever make it to a book, then the

information is there and can be used. I don't think it's necessary to

complicate too much when there's a nice mechanism here that all of us

can access and that can benefit newcomers from the start rather than

waiting for a completed product.

Second, as to creating awareness of the disease, we do a little of that

every day, but major awareness isn't going to happen until we get that

celebrity factor. If Cook's brother had been a victim of PF

instead of cancer we would have gotten it a year ago through American

Idol. If a celebrity died and Hollywood rallied to have an annual fund

raiser in their memory, we'd get it. I tried to get something going from

the death of Goulet, but sadly, never got a call, letter or email

responded to. There are now links on his website to PFF and CPF but

thats basically it. Now, I'm not meaning to disparage friends or family

because they have their own issues to deal with that we can't know. They

don't have a responsibility.

Third, I think its great that many here are excited about this but I

also applaud Beth warning against pressure or guilt. I don't mean

to offend anyone, but my life isn't about PF and I'm not going to let it

consume 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 may

be considered by many to be selfish. But I spent most of my life being

the opposite and now that my time is short, I have to make choices. I've

thought about books or web sites or articles or other things before and

I know that I'd get into them and want to make them better and do more

and pretty soon I'd be obsessing over them and it would be like having a

full time job again and I wouldn't be taking advantage of my remaining

time as I want to. Odds are great that I have less than 2 years and it

could be less than that and I say that not to be morbid and not because

I think much of death. But I do think of all the things that I can do

for pleasure today and don't know that I'll be able to in months even. I

love my family on the forum and participating here, but I had to set

that as my limit. I'll attend fund raisers like crazy Wally's (want to

see if he's reading) but I won't organize. I'd go to a support group and

once thought about organizing one for the DFW area. But, I realized that

it was just too much for me. I can't mentally or emotionally commit to

projects such as that. I admire all those who can.

So for those with the energy and desire I encourage forging ahead. I do

again suggest using the files section here and making the project as

simple as possible. Each person needs to weigh the project with other

things in their lives. I'm glad there are crusaders. I'm thankful every

day for those like Leanne. I see what she does. I also worry about her

trying to do too much sometimes....it's allowed.

PF is a cause close to all of us. It's very personal. I educate where I

can. Traveling I found so many opportunities to respond to questions and

hand out brochures but only when they asked. However, there too. I don't

expect too much of my friends or others. There are so many worthy

causes. Who decides which is most worthy? There are certainly worse

diseases than PF (Alzheimers is the first that comes to my mind). There

is 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 Connective

Tissue Diseases are those impacting so many of us. Treatments will be

discovered. Future generations will benefit. There's just so much to be

done for this and many other diseases. But just look at those that

killed huge numbers in the past and now are under control.

Beth points out the difference between PF and Breast Cancer. Maybe

we need a massive campaign just to encourage 6 minute walks, something

so simple to detect lung conditions and lead to more diagnosis. But,

unfortunately, we can't promise cures with early detection. I crusaded

to everyone I knew some few years ago to get Colonoscopies. Why? They

save lives. Find colon cancer early and it can be treated. I know. I had

a resection and removal of a pre-cancerous tumor. So until we have the

same, there will be greater crusades for breast cancer and colon cancer.

Also, we may do ourselves disservices when we state so clearly there is

no treatment for PF. I see it all the time. Define " Treatment. " First

for some forms there are proven treatments. But for all forms there are

things to do to make life better and avoid complications. I consider

those treatments. We're treating here every day we tell someone to get

an oximeter. Oxygen is a proven treatment to improve quality of life and

lessen the likelihood of PH. Avoiding germs and getting quick medical

care are treatments. Pulmonary Rehab is a treatment. Management of the

disease 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 great

treatment. Here I've learned more about living with the disease than I

could have any other way. Here I've had incredible mentors. Here I have

so many great role models. But, fortunately, here I've also met some

incredible people and that is far beyond sharing a disease. When I think

of them I don't think first of PF. I think of the wonderful people they

are and then realize that they have PF. PF doesn't define Peggy and

. They are a loving couple with loving friends and family. Peggy is

a hugger. is a gentle giant. Peggy spreads love. Beth is a

nurse, a mother, a daughter, a gardener, a friend. I could go down the

list for dozens of you.

Well, thats more than enough for now. Didn't mean to write a book in

discussing the book.

> > >

> > > 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]

just a suggestion ,

The questionaire could include,

1. The most difficult phase/ experience through the journey of the disease.

2. The list of all sinificant experiences.

I hope I am not sounding silly or stupid.

Geeta

> > >

> > > 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]

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 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???

> > > >

> > >

> >

>

[Guest guest]

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/Introduction 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 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???

> > >

> >

>

[Guest guest]

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]

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

To: Breathe-Support Sent: 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]

Barbara

glad to hear you started the questionnaire

i started the folder for tips -- please keep those tips coming

the cooking with gas issue has been up for discussion many times

a section on safely cooking with gas while on oxygen is a great topic for the book

i can already hear people saying "no, no, no,! get rid of the gas stove and buy an electric one"

for many people that is not practical and for those of us who cook with gas, we are still here

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, 2:21 PM

Jack:

Hear, hear!!! (Or should I say "here, here"?) We need a couple-three people to lead the effort, but we need all who can to help with the content. We could donate the proceeds to the Pulmonary Fibrosis Foundation. I'm in, Cees is in, and now you for sure, Jack. I'm starting to write the questionnaire NOW.

B

Barbara McD

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

Beautiful Western NC

Attitude is everything.

From: Jack Marshall <mrshlljck (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, November 10, 2009 2:05:59 PMSubject: Re: Book

I feel strongly that there is a market for such a book, especially if we base it on our stories, most of which

we have heard in bits and pieces on this board. However, what I haven't heard is any enthusiasm from

the board members. This puzzles me because so many of us complain about how many people do not acknowledge or are unaware of how terrible the disease is and that our live styles had nothing to do with

our having it. Only we, acting collectively, can bring significate public recognition to how devastating

PF, in all its many manfestations, has on us as individuals and our families.

I am willing to work on such a book, but only if the group is for it and willing to work for it, and will

put as much energy and time into a book as they do in posting to this board. If they did, I think

they would find it very cathartic.

To my knowledge, except for the Fibrosis Foundation, we have no person nor group standing up in

public fighting for us. We have no one to blame except ourselves. We need to do it. And I know

we can. Jack79/IPF - UIP/dx06/05 Maine

From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, November 9, 2009 10:01:04 AMSubject: Re: Book

I have been thinking about the book idea, and wouldn't mind getting involved with a project like that. One thing I was mulling over was that it would be nice to include a collection of people's "stories": who they are (using an alias, if preferred), what is their DX, how was it found, what are they doing for it, what advice do they wish to offer, etc, etc. We (I?) could write up a questionnaire including all the above, and more, and people could submit their answers. Someone (or several "someones") could write the individual stories, maybe in consultation with the individual, and the story would be sent to the individual for approval before being published.

We could have a chapter on tips for living, an oxygen primer, hospice, etc, etc.

What do board members think about that?

Barbara McD

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

Beautiful Western NC

Attitude is everything.

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, November 9, 2009 8:31:47 AMSubject: Re: Re: PF from radiation

Cees,

First of all, no one is going to "give you hell". What you need is a hug and some solutions. Unfortunately I'm about 2800 miles to your east so that lets the hug out and solutions to our problems are few and far between aren't they?

From a practical point of view it just feels like you need a reason to get up in the morning. Have you thought about volunteering in your community? You are an intelligent, well educated woman Cees, and there are many places where your strengths and talents could be put to good use. The board has been good for me. Moderating here has helped me regain my sense of perspective about my own situation. But a few months ago I realized I needed to do something that would also get me out of the house and away from the computer. I haven't mentioned it here before but I'm training to be a "court appointed special advocate" or guardian ad litem in the family court system. I will be assigned to be the voice of one child. I'm told that most volunteer g.a.l.'s devote approximately 6-8 hours a month. I'm looking forward to getting started.

I only use this as an example. There are tons of opportunities in any community. Doing something for someone else is the best way to regain a sense of perspective about our own situations. Since your family isn't near, reaching out into your community is the next logical step. Many of us have similar family situations to what you describe. My brothers are content to ignore my illness going on the theory I suppose that if they don't acknowledge it, it doesn't exist.

Your medical insurance situation is a huge problem for you and I share your frustration. The fact that there is no pulmonary rehab is borderline criminal in my opinion. I know that one of our members (I think it's Joyce Rudy) participates in a "medically supervised exercise" program. You might want to ask around if there's something like that you can join. Failing that you might ask your doctor if he can prescribe a session or two with a respiratory therapist and/or a physical therapist to come up with an exercise program you can carry out on your own if necessary. It's less than ideal but it would be something.

I also want to thank you for your offer to help with editing a book of the personal stories of our members. This is a huge project and is an idea that has been floating around here for a long time. I think that it may be daunting for many of us to consider writing about our personal struggles but your offer stands and I appreciate it more than you know.

Cees, I don't know if any of this helps in any way at all. Please stick with us. I think this board can help us all just to feel less alone. The isolation of this disease, of feeling as though there is no one else who understands is overwhelming. That's the most important function of this board to dispel that and roll back that dark cloud. Come here and you instantly know you're not alone.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: ceesnews <ceesnews (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, November 9, 2009 3:48:49 AMSubject: Re: PF from radiation

Thank you, Bruce, for your answers to Dawn about quality of life because I desperately needed to hear it. I don't really feel any better, but I'm going to try to implement some of your suggestions. I feel like such a whining hypochondriac compared to you, Dawn. I'm still in the early stages of PF ( & likely other diseases but nobody seems to know yet.) But I've been really depressed lately & wondering why I should even try to go on. (BTW, I'm already on anti-depressants & have been for awhile. I KNOW they've been helping.)I'm depressed about problems that can't be made better by anti-depressants. Of course, No. 1 is this damn disease.I have no family w/in 700 miles. Divorced many years & no children. My siblings are spread out across the country & both parents are gone already. After my dx, I decided to host our 2nd family reunion at my house last summer because I didn't know what my future held. My

family was so surprised by "how good I looked" that they figure I must be exaggerating about this disease & don't want to hear about it anymore. (I saw some comments about this phenomenon on the board recently.)I'm not working anymore because of this disease & pretty much stopped seeing most of my friends a couple years ago because of a major blow-up w/my best friend. (BTW, I already tried to reconcile but she blew me off. Ironically, she's a respiratory therapist. But our blow-up was over how badly she treats her own mother, who has COPD. This was before I had any idea about my own disease.)My dearest friend now is in the last stages of emphysema & will be leaving us soon. He's actually more active than I am & puts me to shame. But I just don't seem to care enough about my own life to get active.I have a TERRIBLE attitude. I'm really angry about being stuck w/an HMO that won't let me go to a Center for Excellence

hospital or even get a 2nd opinion outside of its own program doctors unless I pay. It DOESN'T EVEN HAVE a pulmonary rehab program! And my pulmodoc got upset w/my email questions & refused to answer except during appts that I have to co-pay. (BTW, I was finally able to get an appt for next Thurs.)I spend most of my time on the phone & computer fighting w/bureaucracies. It took 8 months to get my cell phone co. to finally admit it overcharged me & return the money. Meanwhile, it cut off my service & put me thru hell. I'm fighting with one credit card co. for refusing to cancel pmt. to another business that defrauded me, & I'm fighting w/another credit card co. that just raised my rate to 24.99%. I was paying 3.99% because I have really good credit & have never been late. (I think they've learned I'm on disability & figure I'm an easy touch now.) I can stop using the card, but that won't help me pay the

balance.I'm filling out form after form to apply for anything that might help me, but they take SO long. I don't leave the house much anymore except for medical & dental appts, to buy groceries or visit my dying friend.My dog & 2 cats all died last year of old age, which devastated me. (Lesson learned -- NEVER get all your pets around the same age.) I finally got a darling 6-yr-old cat a few months ago. She's the one bright spot in my life.There's a saying about how life w/o purpose has no value & that's how I feel. I got really excited about the PF book idea or even writing a letter to the AMA & volunteered to collect & edit information. But nobody sent me anything or even acknowledged my offer.I'm so sorry to just whine on & on, especially since physically, I still have it so much better than many of you. But it just doesn't seem like there's anything to look forward to except worse medical

problems -- no purpose, no reason to keep going.I know I deserve it if you guys give me hell, but I honestly don't think I could handle it unless you do it really gently. I burst into tears over just about everything these days.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 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

To: Breathe-Support Sent: 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]

a statement like that could be saved into a file and used in the book with the author's permission

i have a tips file,

we need someone to start a feelings file

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 Cc: ceesnews@...Date: Tuesday, November 10, 2009, 4:15 PM

Hi Cees,

I think you have a great idea about the book. I'm not sure I have anything to offer, but I'll continue to think what I could do. I do think we need to have a separate site to filter this info. To do it on the board would just overwhelm the board. Thanks for the energy and enthusiasm. We need it.

I also understand your rant the other day because I have many of them but I figure that is why we are hear to support one another.

AB

From: ceesnews <ceesnews (AT) yahoo (DOT) com>Subject: Re: BookTo: Breathe-Support@ yahoogroups. comDate: Tuesday, November 10, 2009, 8:11 AM

OK everybody, enough talking. It's time for us to start doing.Do I sound bossy? Then, it's all the fault of this group. As Beth said, obviously I desperately need a reason to get out of bed in the morning. And in the year since I was diagnosed, nothing has gotten me as excited as the thought of working on this book. When nobody sent me any stories & nothing else happened, I was pretty heartbroken.But since we're talking about it again, I don't want the opportunity to slip away. My brain seems to be working on overtime & I can't shut it off even to sleep. I think it's time to set up a committee or list of volunteers or whatever to get this show on the road.From what I've gathered, we have several professional writers & editors on this board, including me. Some of us, and a couple other talented people, have already expressed an interest in working on this book project. I think this is a great start &

we should begin delegating assignments. So here we are & what we've offered to do so far:Cees (me) -- Would love to work on editing personal stories, help organize chapters & chapter content, & maybe narrate some of it.Jack Marshall -- Offered to help w/editing when retirement starts in next month or 2 but didn't mention any specific area of interest. He suggested a possible title: VOICES FROM THE LUNGS. Pink Joyce -- Offered to collect a list of practical tips for living with PF.Barbara McD -- Offered to create a Questionnaire to help people organize their life stories with sections such as "who they are, what their DX is, how was it found, what are they doing for it, what advice do they wish to offer, etc, etc." Fay -- Offered to help write & edit in general and help organize chapters & chapter content. Beth -- Offered to help in any way. As Jack suggested & I agree,

it's "critical to the book for Beth (and Bruce) to write the medical story." Mama Sher -- Has given good editing suggestions so far. Not sure if she has a special interest in any particular section.That's all I can remember right now. Am I missing any volunteer committee members? Please everyone jump in w/any suggestions you have or offers to work on the committee. But I think that any actual decisions should wait for a discussion by the actual committee members. We can meet in another chatroom or on the phone or personal emails or whatever the group thinks. Of course, we'd bring decisions back to the board for final approval.The rest of you should start thinking about writing down your stories. DO NOT PANIC! Personally, I think most of you could just copy & paste things you've already posted on this board about your lives. That's how good they are. Do NOT worry about spelling, punctuation, grammar, etc. Some of

us are editors and/or writing teachers & have spent our lives working with copy that needs some help. In fact, I wish my college students could write as well as everything I've seen on this board. And for those who are too intimidated to start writing anything on their own, Barbara will soon have a Questionnaire to help you out.Peggy said some stories were submitted to Leanne a while back. I asked Leanne about them in one of my posts, but she probably never saw it. I'll email her personally & check on those.This is a team project, so any & all ideas, suggestions, etc. are more than welcome. I don't want to tie up the board postings too badly though, so after things start settling down & real work starts getting done, I'm thinking the discussion & planning should move to its own venue.I'm stepping off my soapbox now to give the rest of you a chance, but let's not allow this project to die out, OK?

Please? (And let me know if I'm being too bossy. Sometimes I intimidate people w/o meaning to.)Cees, S 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]

this is also a great feeling/factual statement that could go into a feelings file

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, 5:43 PM

Jack,

I agree that the idea for a book is an excellent one and I will do EVERYTHING I can to help. It's not really that difficult however to understand why some members hesitate to take on a project like this, even if there part of the project is relatively small.

Sometimes it's easy to lose sight of the ongoing battle some of us are waging just to maintain our lives. It's hard to tell how much someone is struggling with the minutiae of this illness from their board posts. Taking on an additional project can be daunting even if it's something you think is important.

Trust me I agree this is a great and important idea. I do think the questionaire idea would be much easier for the average person to cope with rather than just being told to 'write your story'. I want to see this work out, and I'm not trying to dampen anyones enthusiasm. I think I'm just trying to explain why you haven't seen the groundswell that you expected.

Here's something that may illustrate this better. Our statistics are always compared to breast cancer because we lose roughly the same number of people to PF each year as die from breast cancer. But here is a critical difference. There are literally millions of 'breast cancer survivors' out there. Those comparatively healthy survivors are out there advocating, working, raising money and awareness. We don't have legions of survivors out there. Sorry to be blunt but we die rather uniformly. Some sooner, some later but this disease is virtually 100% fatal at the present. That contributes to the lack of awareness in the general public, many times we don't live long enough or feel well enough to get the attention necessary to change what needs to be changed.

So we start where we can and do what's possible. I'm excited because I do think this is important. I just want to be cautious about appearing to criticise those who for whatever reason choose not to participate. All of us are already carrying a 'supersize' burden. This disease is a major drain on all our energy and resource and our focus on the board needs to be one of support and understanding.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Jack Marshall <mrshlljck (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, November 10, 2009 2:05:59 PMSubject: Re: Book

I feel strongly that there is a market for such a book, especially if we base it on our stories, most of which

we have heard in bits and pieces on this board. However, what I haven't heard is any enthusiasm from

the board members. This puzzles me because so many of us complain about how many people do not acknowledge or are unaware of how terrible the disease is and that our live styles had nothing to do with

our having it. Only we, acting collectively, can bring significate public recognition to how devastating

PF, in all its many manfestations, has on us as individuals and our families.

I am willing to work on such a book, but only if the group is for it and willing to work for it, and will

put as much energy and time into a book as they do in posting to this board. If they did, I think

they would find it very cathartic.

To my knowledge, except for the Fibrosis Foundation, we have no person nor group standing up in

public fighting for us. We have no one to blame except ourselves. We need to do it. And I know

we can. Jack79/IPF - UIP/dx06/05 Maine

From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, November 9, 2009 10:01:04 AMSubject: Re: Book

I have been thinking about the book idea, and wouldn't mind getting involved with a project like that. One thing I was mulling over was that it would be nice to include a collection of people's "stories": who they are (using an alias, if preferred), what is their DX, how was it found, what are they doing for it, what advice do they wish to offer, etc, etc. We (I?) could write up a questionnaire including all the above, and more, and people could submit their answers. Someone (or several "someones") could write the individual stories, maybe in consultation with the individual, and the story would be sent to the individual for approval before being published.

We could have a chapter on tips for living, an oxygen primer, hospice, etc, etc.

What do board members think about that?

Barbara McD

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

Beautiful Western NC

Attitude is everything.

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, November 9, 2009 8:31:47 AMSubject: Re: Re: PF from radiation

Cees,

First of all, no one is going to "give you hell". What you need is a hug and some solutions. Unfortunately I'm about 2800 miles to your east so that lets the hug out and solutions to our problems are few and far between aren't they?

From a practical point of view it just feels like you need a reason to get up in the morning. Have you thought about volunteering in your community? You are an intelligent, well educated woman Cees, and there are many places where your strengths and talents could be put to good use. The board has been good for me. Moderating here has helped me regain my sense of perspective about my own situation. But a few months ago I realized I needed to do something that would also get me out of the house and away from the computer. I haven't mentioned it here before but I'm training to be a "court appointed special advocate" or guardian ad litem in the family court system. I will be assigned to be the voice of one child. I'm told that most volunteer g.a.l.'s devote approximately 6-8 hours a month. I'm looking forward to getting started.

I only use this as an example. There are tons of opportunities in any community. Doing something for someone else is the best way to regain a sense of perspective about our own situations. Since your family isn't near, reaching out into your community is the next logical step. Many of us have similar family situations to what you describe. My brothers are content to ignore my illness going on the theory I suppose that if they don't acknowledge it, it doesn't exist.

Your medical insurance situation is a huge problem for you and I share your frustration. The fact that there is no pulmonary rehab is borderline criminal in my opinion. I know that one of our members (I think it's Joyce Rudy) participates in a "medically supervised exercise" program. You might want to ask around if there's something like that you can join. Failing that you might ask your doctor if he can prescribe a session or two with a respiratory therapist and/or a physical therapist to come up with an exercise program you can carry out on your own if necessary. It's less than ideal but it would be something.

I also want to thank you for your offer to help with editing a book of the personal stories of our members. This is a huge project and is an idea that has been floating around here for a long time. I think that it may be daunting for many of us to consider writing about our personal struggles but your offer stands and I appreciate it more than you know.

Cees, I don't know if any of this helps in any way at all. Please stick with us. I think this board can help us all just to feel less alone. The isolation of this disease, of feeling as though there is no one else who understands is overwhelming. That's the most important function of this board to dispel that and roll back that dark cloud. Come here and you instantly know you're not alone.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: ceesnews <ceesnews (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Mon, November 9, 2009 3:48:49 AMSubject: Re: PF from radiation

Thank you, Bruce, for your answers to Dawn about quality of life because I desperately needed to hear it. I don't really feel any better, but I'm going to try to implement some of your suggestions. I feel like such a whining hypochondriac compared to you, Dawn. I'm still in the early stages of PF ( & likely other diseases but nobody seems to know yet.) But I've been really depressed lately & wondering why I should even try to go on. (BTW, I'm already on anti-depressants & have been for awhile. I KNOW they've been helping.)I'm depressed about problems that can't be made better by anti-depressants. Of course, No. 1 is this damn disease.I have no family w/in 700 miles. Divorced many years & no children. My siblings are spread out across the country & both parents are gone already. After my dx, I decided to host our 2nd family reunion at my house last summer because I didn't know what my future held. My

family was so surprised by "how good I looked" that they figure I must be exaggerating about this disease & don't want to hear about it anymore. (I saw some comments about this phenomenon on the board recently.)I'm not working anymore because of this disease & pretty much stopped seeing most of my friends a couple years ago because of a major blow-up w/my best friend. (BTW, I already tried to reconcile but she blew me off. Ironically, she's a respiratory therapist. But our blow-up was over how badly she treats her own mother, who has COPD. This was before I had any idea about my own disease.)My dearest friend now is in the last stages of emphysema & will be leaving us soon. He's actually more active than I am & puts me to shame. But I just don't seem to care enough about my own life to get active.I have a TERRIBLE attitude. I'm really angry about being stuck w/an HMO that won't let me go to a Center for Excellence

hospital or even get a 2nd opinion outside of its own program doctors unless I pay. It DOESN'T EVEN HAVE a pulmonary rehab program! And my pulmodoc got upset w/my email questions & refused to answer except during appts that I have to co-pay. (BTW, I was finally able to get an appt for next Thurs.)I spend most of my time on the phone & computer fighting w/bureaucracies. It took 8 months to get my cell phone co. to finally admit it overcharged me & return the money. Meanwhile, it cut off my service & put me thru hell. I'm fighting with one credit card co. for refusing to cancel pmt. to another business that defrauded me, & I'm fighting w/another credit card co. that just raised my rate to 24.99%. I was paying 3.99% because I have really good credit & have never been late. (I think they've learned I'm on disability & figure I'm an easy touch now.) I can stop using the card, but that won't help me pay the

balance.I'm filling out form after form to apply for anything that might help me, but they take SO long. I don't leave the house much anymore except for medical & dental appts, to buy groceries or visit my dying friend.My dog & 2 cats all died last year of old age, which devastated me. (Lesson learned -- NEVER get all your pets around the same age.) I finally got a darling 6-yr-old cat a few months ago. She's the one bright spot in my life.There's a saying about how life w/o purpose has no value & that's how I feel. I got really excited about the PF book idea or even writing a letter to the AMA & volunteered to collect & edit information. But nobody sent me anything or even acknowledged my offer.I'm so sorry to just whine on & on, especially since physically, I still have it so much better than many of you. But it just doesn't seem like there's anything to look forward to except worse medical

problems -- no purpose, no reason to keep going.I know I deserve it if you guys give me hell, but I honestly don't think I could handle it unless you do it really gently. I burst into tears over just about everything these days.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

i didn't read every word -- too long for me

but you make some very 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: 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???> > >> >>