Re: Book/ Jack

[Guest guest]

Jack, At one time we sent our stories to Leanne with thoughts of a book. There was someone else involved so it didn't happen. I would love to do it.. I wish I had an idea how to start where to quit and all the things that make a story worth reading. i had posted one a long time ago. maybe I'll send it to you (if I can find it) and see if it might be close to what you are thinking. Spelling, grammar.. ??????? just the way it is.. lol Love & Prayers, Peggy Florida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." 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 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. BethModeratorFibrotic 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???> >>