Guest guest Posted November 9, 2009 Report Share Posted November 9, 2009 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. To: Breathe-Support Sent: 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???> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2009 Report Share Posted November 9, 2009 Very good idea!! I myself kept putting off sending in my story due to laziness .Filling up a quwestionaire would e easier 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??? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2009 Report Share Posted November 10, 2009 I love the idea of a book and a cook book . I will help in anyway I can but I have no formal training in this area. Let me know it is exciting. KAREN IPF 2/07 Il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2009 Report Share Posted November 10, 2009 Jack, Cees, Barbara et al...Count me in! Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara     “I’m gonna be iron like a lion in Zionâ€Â Bob Marley Vinca Minor-periwinkle is my flower   Barbara McD wrote:  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 Sent: Tue, November 10, 2009 2:05:59 PM Subject: 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.  Jack 79/IPF - UIP/dx06/05 Maine From: Barbara McD <bamny (AT) yahoo (DOT) com> To: Breathe-Support@ yahoogroups. com Sent: Mon, November 9, 2009 10:01:04 AM Subject: 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. com Sent: Mon, November 9, 2009 8:31:47 AM Subject: 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. com Sent: Mon, November 9, 2009 3:48:49 AM Subject: 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 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??? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2009 Report Share Posted November 12, 2009 Dawn PF include all forms of lung diseases with fibrosis or scarring of the lungs. That is over 200 forms. It is also interchangeable with the term ILD, Interstitial Lung Diseases. IPF is very specific. It is not PF of undetermined cause. It is UIP, Usual Interstitial Pneumonitis (a specific and most common form of PF) of undetermined cause. Pirfenidone is a drug that is not currently approved and was disappointing in the clinical trials but is currently applying for approval. > >> > >> > >>> > > > > >> > >> > >>> > > > 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??? > >> > >> > >>> > > > > >> > >> > >>> > > > >> > >> > >>> > > >> > >> > >>> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >>Â Â Â Â > >> > >>Â Â Â Â > >> > >> > >> > >>Â Â Â Â > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 Hi , I have that book, and read it, It really didn't do a lot for me, but then you know how books are, everybody gets something different out of what they read, so I hope you enjoy it, I know she basically had to give up acting, I thing I read that somewhere else, not sure. enjoy. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) Hi all, I've just received TWO copies of Duffy's excellent book in the mail today - one which I ordered from the States (secondhand, but v good condition) and one which a friend kindly sent me ... I clearly don't need *both*. I'm happy to post my extra copy to anyone who'd like it in Australia ... if there's no takers locally (who will get preference), I can ship it overseas if you're prepared to pay for the postage (I have a PayPal account). Please send me a private email (ie reply to sender (denise@...) rather than the whole group), if you're interested. This is the book : http://www.amazon.com/Model-Patient-Life-Incurable-Wise-Ass/dp/B000C4SYES/ Cheers, ........................................................................................................ http://sutherland-studios.com.au Dummies author : http://tinyurl.com/CodesandCryptograms http://tinyurl.com/WordSearches ........................................................................................................ Quote Link to comment Share on other sites More sharing options...
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