Guest guest Posted November 12, 2009 Report Share Posted November 12, 2009 Dawn. You're a neighbor!!! I live in Blue Bell ( right outside Philly) Welcome to the group..there are several of us in PA! We just have to figure when and where to meet. Pink Joyce lives in Langhorne, Adrienne lives in Philly, Patti lives in Cherry Hill,Tom lives in Gilbertsville, and Bob lives somewhere on NE PA. I can't recall anyone else. I'm certain that there is a girl near Lancaster..just don't remember her name. Hey. all Pennsylvanians ...post please!!!! We need to have a meet and greet! 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   Dawn Urso wrote:  Thank you, each day I learn a little more,  Dawn 43, Newtown Square, PA PF from radiation 07/2008 From: Sher Bauman <bofus6 (AT) verizon (DOT) net> To: Breathe-Support Sent: Thu, November 12, 2009 5:35:22 PM Subject: Re: Re: Book   Dawn...whatever you did to send this post, it came through fine...and everyone can see it. If you want a special subject or question just put it in the 'subject' line. If you want to respond to a post you just read, click on reply and you type in your response and send... I personally like getting mail from the group in my personal 'Inbox. Others prefer reading and answering from the web page. No silly questions here! MamaSher; 71, IPF 3-2006, OR. Don't fret about tomorrow, God is already there! ----- Original Message ----- From: Dawn Urso To: Breathe-Support@ yahoogroups. com Sent: Thursday, November 12, 2009 2:17 PM Subject: Re: Re: Book  I am so confused, sorry. Is this how I can answer/comment to the entire group or do I have to answer each person individually who responded to me? The posts are now in an "inbox" format but I was also looking at them through "my groups". Anyway, I hope this works. Since I am new to this whole thing I just asked Leanne to send me that informational packet. If I'm doing this wrong please someone let me know. Is there a "how to for dummies" for yahoo groups???  Cees, you have a terrific project to create and what an oppotunity to make a difference. I'm on board for writing a story and think the questionnaire is a great idea. I don't mind using my real name it's already out there for a lot of cancer & BMT sites. The more people we can reach out to the better, you will be a force to be reckoned with!!!!  Thank you so much to the entire group for sharing and helping me see that I am not alone in this crazy thing. Your words of encouragement and life experience are truly priceless, thanks.  Now for another question, IPF and PF. From what I understand IPF has an unknown cause and PF a known cause? Does that change medications that can be used to help? Like mine is from radiation treatments.. PF means scarring, how can anything undo that? What is Pirfenidone? I saw posts someplace but I can't find them now. Is that for both, IPF & PF?  Thanks, Dawn From: Jack Marshall <mrshlljck (AT) yahoo (DOT) com> To: Breathe-Support@ yahoogroups. com Sent: Thu, November 12, 2009 4:53:37 PM Subject: Re: Re: Book  Oh MamaSher! Surely you know that to misspell is human.  Jack 79/IPF - UIP/dx06/05 Maine From: Sher Bauman <bofus6 (AT) verizon (DOT) net> To: Breathe-Support@ yahoogroups. com Sent: Wed, November 11, 2009 8:18:34 PM Subject: Re: Re: Book   boy oh boy, I sure misspelled fictitious! Sorry gang! MamaSher; 71, IPF 3-2006, OR. Don't fret about tomorrow, God is already there! ----- Original Message ----- From: Joyce T Rosenberg To: Breathe-Support@ yahoogroups. com Sent: Wednesday, November 11, 2009 4:47 PM Subject: Re: Re: Book  i think anonymous or fictitious names is the way to go Pink Joyce R (IPF 3/06)  IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Embarq Customer <pattijo05@embarqmai l.com> Subject: Re: Re: Book To: Breathe-Support@ yahoogroups. com Date: Wednesday, November 11, 2009, 7:49 AM  I'm agreeable to any info from my posts being printed, anonymously though. Re: Book                        Jack, I wholeheartedly agree with you about the heart-wrenching posts, "told from the heart," that would make this book a huge success among the general public. That's why I wrote that most members could just cut & paste previous posts to tell their stories because they were already so good. But Barbara & Beth make a really good point. Just because you & I have been writing on demand our whole lives doesn't mean the general public feels comfortable doing it. I think you said you taught college students like I did. Maybe your students were already good writing majors, but many of mine weren't, so I totally understand how people can be intimidated by a writing project. That's why I think a Questionnaire is a great idea. For one thing, we'll get responses from a lot more people, which I know you're hoping to see. And who knows? Sometimes just having a question to answer gets the juices flowing & stories come pouring out. So go for it, Barbara. I can't wait to see the Questionnaire. I think that's one thing that really can be posted on the Files section of our website, so everyone can download a copy. I would ask that you run it past a couple of us on the committee before you submit it though. Mostly because we might have an idea for another question to include & the read-only Files section can't easily be edited. For example, I think we should include a question asking permission to possibly use info from people's past postings with the caveat that they will have final approval over any edited version that's attributed to them. Whaddya ya'll think? Cees, S 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...
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