Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 Hello Cees, I do the short posts.Happy BirthdayBeverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Re: A BookTo: Breathe-Support Date: Monday, October 5, 2009, 10:31 PM Hi again everybody! Sorry it took so long to reply to all the terrific responses I got to my posting about a possible book, the American Lung (aka COPD) Assoc, and questions about the alphabet soup of diseases we all suffer from. Been pretty busy the last few days, & today is my birthday (60--Sheesh! How did that happen? No celebrating, just took calls & answered emails from family & friends.) I just reached the end of a 5-day mega dose of Zithromax also since my pulmonologist diagnosed acute bronchitis last week. (Which was kinda weird because I felt much better than I did the week before when my GP did nothing except give me flu & pneumonia shots.) I want to thank everyone who posted info recently that has really helped me, whether in response to my post or others, but I can't keep track of everyone yet. I also had some problems reading the Daily Digests & just found a few replies today on the website that I missed when they were first posted Sat. or Sun. I should warn you all that I seem to be incapable of writing brief posts or emails to anybody. I pretty much cut myself off from outside contact in the year since I was diagnosed & put on disability. Seems like I'm just now starting to make outside contacts again, so words & ideas are suddenly spilling out all over. I want to thank Ken for posting the info about the book/memoir he read about PF. I've been pretty engrossed in this free online book for the last couple days and am nearly finished. It's "Never Tell Them You're Dying" by married couple Barry and Kerry at http://books. google.com/. Lots of humorous anecdotes about his frustrations with the medical & insurance systems, etc., but also some touching personal accounts of the loving support he received from family & friends and the stages of grief they experienced. Really illuminating. It does some of the stuff I want to see in a collaborative book about PF but not enough. I still think this group should write a book & try to get it published, maybe even with an accompanying book by caregivers. As a newcomer to this group, I have to tell you, Beth, how impressed I am with your extensive knowledge about these diseases, your hard work & what seems like your limitless patience & empathy. I hope this comparison doesn't bother you, but what I see is a large family held together by a strong & loving mother -- the kind of mom that all the neighborhood kids wish they had. I'm really glad I found this great family. I've got a million other things to add, but they can wait till another day. Oh . . . except to answer Miranda's question. I live in Anaheim, about a mile & a half from Disneyland. I'm not familiar with Duarte, but I know the valley up there a little bit. I worked at newspapers in Glendale & Burbank back when you were probably in kindergarten. I see by the members list that somebody else lives near me in Cerritos, but I don't remember the name. Meanwhile, I have some more questions if you all don't mind. 1. What is Blue Shirt Friday? When did it start? How did it start? I think I get the reasoning, but it would be nice to have it spelled out. Are there specific shirts to wear that say something about PF or the Foundation? How much & how do I get one? Or is any blue shirt OK? 2. What is the Sacramento trip about? I can't find anything that explains the purpose. 3. What is NAC? Bob said he improved when taking it even though he's not taking any prescriptions. Is this something we can purchase over the counter? Wow! Looks like I already wrote a book. Sorry about that. Thanks for all your support. Cees, S. Calif., IHP 10/08 > > > From: Beth <mbmurtha@.. .> > Subject: Re: A Book > To: Breathe-Support@ yahoogroups. com > Date: Sunday, October 4, 2009, 8:23 AM > > > > > > > > > > Ted, > I'm sorry to hear that you find this site such a "great pain in the butt". When I looked I found that you receive the posts via the Daily Digest. I also find the digest to be a less than ideal way to read the postings on this board. You do have two other choices. > You can have the posts sent to you as individual emails or you can read them directly from the board. Either of these choices will reduce the repetition that you see on the digest. > Choosing to receive them as emails will mean you get anywhere from approximately 15-75 emails in a 24 period. If you don't want to receive all that email then maybe reading the posts directly from the board is a good solution. You can do that here: > > http://health. groups.yahoo. com/group/ Breathe-Support/ messages > > There is also information in the file area of the board that may be of interest to you and others. You can find that here: > http://health. groups.yahoo. com/group/ Breathe-Support/ files/ > > I hope some of this helps you to get more out of the group! > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > From: TED KOULBACK <mbrsj07 (AT) sbcglobal (DOT) net> > To: Breathe-Support@ yahoogroups. com > Sent: Sun, October 4, 2009 4:03:32 AM > Subject: A Book > > > > > > My opinion is that a book would be a great help to anyone with ILD..especially newbies like me. The Breath-Support site is great source of info but also a great pain in the butt. In order to learn anything new you have to read the same posts over and over ad nauseum. Like by the time I wade through everything, I've forgotten my question. Seems to me there has to be a better way of communicating than the present method. > Peace, > Ted, 79, IL,dx March 09 > Want what you have; Be who you are; Do what you can > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2009 Report Share Posted October 6, 2009 HAPPY BIRTHDAY Cees! HAPPY BIRTHDAY TO YOU! MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! A Book> > > > > > My opinion is that a book would be a great help to anyone with ILD..especially newbies like me. The Breath-Support site is great source of info but also a great pain in the butt. In order to learn anything new you have to read the same posts over and over ad nauseum. Like by the time I wade through everything, I've forgotten my question. Seems to me there has to be a better way of communicating than the present method.> Peace,> Ted, 79, IL,dx March 09> Want what you have; Be who you are; Do what you can> > Quote Link to comment Share on other sites More sharing options...
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