Guest guest Posted May 25, 2008 Report Share Posted May 25, 2008 Alana, The only book I know of on PF is an Ebook that someone posted a link to back a couple of months ago. K was it you? It's more of a personal journey kind of book rather than information. Unfortunately (or fortunately I guess) this disease is not common enough for there to be alot written about it outside of the professional literature. Which is what makes groups like this so much more important to me. If anyone knows of a book that is helpful please let everyone know! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Thank you! I appreciate you all making me feel so welcome and helping me with questions. I did go to the library today and in all of the Hall County Library System, there are no books on PF. What's up with that? Can anyone recommend any PF books to me?Also, just in His great & mysterious plan, my pastor's sermon was on grieving. WOW! I was surrounded by my friends & there were quite a few tears dripping out everywhere.I know one thing, I can't wait until 1:00 on Friday, to meet with Dr. .Alana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2008 Report Share Posted May 25, 2008 Alana... You'll go through all sorts of feelings. Shock, denial, anger, grief, acceptance, then up and down through them all again. I think grief is one of the harder ones. We grieve for our family, kids, friends, pets and finally ourselves. That's a lot of grieving! We all did/do. Check on the home page or files, I think you'll find as much on PF here as anywhere. There just isn't much knowledge. Go on the internet and Google. I'm anxious too for your appt. Let us know! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Thank you! I appreciate you all making me feel so welcome and helping me with questions. I did go to the library today and in all of the Hall County Library System, there are no books on PF. What's up with that? Can anyone recommend any PF books to me?Also, just in His great & mysterious plan, my pastor's sermon was on grieving. WOW! I was surrounded by my friends & there were quite a few tears dripping out everywhere.I know one thing, I can't wait until 1:00 on Friday, to meet with Dr. .Alana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2008 Report Share Posted May 25, 2008 I just wish I would quit crying. > > Alana... You'll go through all sorts of feelings. Shock, denial, anger, grief, acceptance, then up and down through them all again. I think grief is one of the harder ones. We grieve for our family, kids, friends, pets and finally ourselves. That's a lot of grieving! We all did/do. > Check on the home page or files, I think you'll find as much on PF here as anywhere. There just isn't much knowledge. Go on the internet and Google. > I'm anxious too for your appt. Let us know! > > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. > Don't fret about tomorrow, God is already there! > > Thank you! > > > I appreciate you all making me feel so welcome and helping me with > questions. > I did go to the library today and in all of the Hall County Library > System, there are no books on PF. What's up with that? Can anyone > recommend any PF books to me? > Also, just in His great & mysterious plan, my pastor's sermon was on > grieving. WOW! I was surrounded by my friends & there were quite a > few tears dripping out everywhere. > I know one thing, I can't wait until 1:00 on Friday, to meet with > Dr. . > > Alana > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2008 Report Share Posted May 25, 2008 Alana...you will quit crying when all these feelings are cried out. Don't expect so much from yourself. Time takes time...... What you can do is educate yourself and keep yourself in as good shape as you can. We all help each other through this stinkin' disease...one day you may be helping me. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Thank you!> > > I appreciate you all making me feel so welcome and helping me with > questions. > I did go to the library today and in all of the Hall County Library > System, there are no books on PF. What's up with that? Can anyone > recommend any PF books to me?> Also, just in His great & mysterious plan, my pastor's sermon was on > grieving. WOW! I was surrounded by my friends & there were quite a > few tears dripping out everywhere.> I know one thing, I can't wait until 1:00 on Friday, to meet with > Dr. .> > Alana> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2008 Report Share Posted May 25, 2008 Hi Alana! Well, I can honestly say that without Lexipro (anti-depressant) I would still be bawling. I'm just that kind of woman. Maybe it is just all the estrogen inside me. I am about the bawlingst person I know. I would be in the grocery store and someone I barely knew would come up and say "How's Don?" and I would just stand there and bawl. Geesh there is an eternal fountain inside of me. Well, I'm better since Lexipro but prayer has helped a lot too. You have tapped a source here that will help you through doctors, med's, oxygen, depression, and the whole gamet of this disease. Keep posting and help is forth coming. K IllinoisSher Bauman wrote: Alana...you will quit crying when all these feelings are cried out. Don't expect so much from yourself. Time takes time...... What you can do is educate yourself and keep yourself in as good shape as you can. We all help each other through this stinkin' disease...one day you may be helping me. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Thank you!> > > I appreciate you all making me feel so welcome and helping me with > questions. > I did go to the library today and in all of the Hall County Library > System, there are no books on PF. What's up with that? Can anyone > recommend any PF books to me?> Also, just in His great & mysterious plan, my pastor's sermon was on > grieving. WOW! I was surrounded by my friends & there were quite a > few tears dripping out everywhere.> I know one thing, I can't wait until 1:00 on Friday, to meet with > Dr. .> > Alana> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2008 Report Share Posted May 25, 2008 Alana, Crying is a good thing. I always say that tears wash the soul. Crying tires you out, cleans out the fears, makes you blow the snot out of your head.....all good things. Grief is the most difficult part of this disease for me. I work hard against it, but I grieve for the me that is lost. The independant me. The one in control. The glue that held this family together. I grieve for the ability to yawn, to sneeze...I mean really sneeze and yawn. I feel so sad that I cannot even read to my little grandchildren without bouts of coughing and spitting. A good fit of laughter creates another fit of coughing. I grieve for the trips I will never take, now. For the walks in the wood, the cookouts, the playing in the snow........the list goes on and on. But, in the end, nothing changes. I have to accept this or let my remaining life be ruined. I have made it 11 years since biopsy. Not all great years. Lots of sickness and suffering. But, I have hugged 4 more grandkids since then. I have had so many slobbery baby kisses that I have lost count. I have watched my older grandsons become strong young men, my grandaughter a thing of beauty. I have walked beside the best man that God ever put on this earth. For these things, I am so grateful. You will work through this, Alana. You have no choice. Asking for drugs to help is o.k. Asking for therapy is o.k. Being real with a friend is a very good thing. This group has been so very good for me. I hope that we can be good for you and you will be good for us. We will listen and we will care. If I were there I would hug you and wipe the tears away. Please know that we do understand. Everyone of us has been where you are.......time and time again. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > think grief is one of the harder ones. We grieve for our family, > kids, friends, pets and finally ourselves. That's a lot of grieving! > We all did/do.> > Check on the home page or files, I think you'll find as much on PF > here as anywhere. There just isn't much knowledge. Go on the internet > and Google.> > I'm anxious too for your appt. Let us know!> > > > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> > Don't fret about tomorrow, God is already there!> > > > Thank you!> > > > > > I appreciate you all making me feel so welcome and helping me > with > > questions. > > I did go to the library today and in all of the Hall County > Library > > System, there are no books on PF. What's up with that? Can anyone > > recommend any PF books to me?> > Also, just in His great & mysterious plan, my pastor's sermon was > on > > grieving. WOW! I was surrounded by my friends & there were quite > a > > few tears dripping out everywhere.> > I know one thing, I can't wait until 1:00 on Friday, to meet with > > Dr. .> > > > Alana> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2008 Report Share Posted May 25, 2008 God bless you Joyce! You warmed my heart too. K IllinoisJoyce wrote: Alana, Crying is a good thing. I always say that tears wash the soul. Crying tires you out, cleans out the fears, makes you blow the snot out of your head.....all good things. Grief is the most difficult part of this disease for me. I work hard against it, but I grieve for the me that is lost. The independant me. The one in control. The glue that held this family together. I grieve for the ability to yawn, to sneeze...I mean really sneeze and yawn. I feel so sad that I cannot even read to my little grandchildren without bouts of coughing and spitting. A good fit of laughter creates another fit of coughing. I grieve for the trips I will never take, now. For the walks in the wood, the cookouts, the playing in the snow........the list goes on and on. But, in the end, nothing changes. I have to accept this or let my remaining life be ruined. I have made it 11 years since biopsy. Not all great years. Lots of sickness and suffering. But, I have hugged 4 more grandkids since then. I have had so many slobbery baby kisses that I have lost count. I have watched my older grandsons become strong young men, my grandaughter a thing of beauty. I have walked beside the best man that God ever put on this earth. For these things, I am so grateful. You will work through this, Alana. You have no choice. Asking for drugs to help is o.k. Asking for therapy is o.k. Being real with a friend is a very good thing. This group has been so very good for me. I hope that we can be good for you and you will be good for us. We will listen and we will care. If I were there I would hug you and wipe the tears away. Please know that we do understand. Everyone of us has been where you are.......time and time again. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > think grief is one of the harder ones. We grieve for our family, > kids, friends, pets and finally ourselves. That's a lot of grieving! > We all did/do.> > Check on the home page or files, I think you'll find as much on PF > here as anywhere. There just isn't much knowledge. Go on the internet > and Google.> > I'm anxious too for your appt. Let us know!> > > > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> > Don't fret about tomorrow, God is already there!> > > > Thank you!> > > > > > I appreciate you all making me feel so welcome and helping me > with > > questions. > > I did go to the library today and in all of the Hall County > Library > > System, there are no books on PF. What's up with that? Can anyone > > recommend any PF books to me?> > Also, just in His great & mysterious plan, my pastor's sermon was > on > > grieving. WOW! I was surrounded by my friends & there were quite > a > > few tears dripping out everywhere.> > I know one thing, I can't wait until 1:00 on Friday, to meet with > > Dr. .> > > > Alana> >> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2008 Report Share Posted May 25, 2008 Yes, you can read the book on http://books.google.com and type in Never Tell Them You're Dying by Barry . It is a great book. You will laugh and cry.It was good. Kennelly Illinois Beth wrote: Alana, The only book I know of on PF is an Ebook that someone posted a link to back a couple of months ago. K was it you? It's more of a personal journey kind of book rather than information. Unfortunately (or fortunately I guess) this disease is not common enough for there to be alot written about it outside of the professional literature. Which is what makes groups like this so much more important to me. If anyone knows of a book that is helpful please let everyone know! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Thank you! I appreciate you all making me feel so welcome and helping me with questions. I did go to the library today and in all of the Hall County Library System, there are no books on PF. What's up with that? Can anyone recommend any PF books to me?Also, just in His great & mysterious plan, my pastor's sermon was on grieving. WOW! I was surrounded by my friends & there were quite a few tears dripping out everywhere.I know one thing, I can't wait until 1:00 on Friday, to meet with Dr. .Alana K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2008 Report Share Posted May 26, 2008 Hi Jack, The booklet you refer to is the same organization this group is affiliated with. Leanne Storch owns this site.She is a wonderful smart sweet woman that has this disease also. If you haven't already done it, call her and she can send you a lot of information. Look on the home page under links, there is a lot of good information there. There are people here that can answer about any questions you may have. Things that the Dr.s don't address, like how to live with this monster chasing us. I don't recall if you are on 02 or not. OD (oxygen deprivation) is one joke we sometimes use when we forget things. Take Care of you. Peggy, ipf 6/04 Florida Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God. I found a decent booklet called "Patient Information Handbook", subtitiled optimistically "A Cure is Just a Breath Away", from the Pulmonary Fibrosis Foundation. I think the web site is www.pulmonaryfibrosisfoundation.org. It is not on the booklet. You can call or write Pulmonary Fibrosis Foundation, 1332 No. Halstead Street, Ste 201, Chicago, IL 60622. In addition to info on fibrosis, it gives other sources of information. There is no charge, but a donation is accepted. JackIPF 6/05 - UIP 5/08 Thank you!I appreciate you all making me feel so welcome and helping me with questions. I did go to the library today and in all of the Hall County Library System, there are no books on PF. What's up with that? Can anyone recommend any PF books to me?Also, just in His great & mysterious plan, my pastor's sermon was on grieving. WOW! I was surrounded by my friends & there were quite a few tears dripping out everywhere.I know one thing, I can't wait until 1:00 on Friday, to meet with Dr. .Alana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2008 Report Share Posted May 26, 2008 http://www.pulmonaryfibrosis.org/education.htmhttp://www.coalitionforpf.org/AboutUs/resources.aspSo sites for booklets PJack Marshall wrote: I found a decent booklet called "Patient Information Handbook", subtitiled optimistically "A Cure is Just a Breath Away", from the Pulmonary Fibrosis Foundation. I think the web site is www.pulmonaryfibrosisfoundation.org. It is not on the booklet. You can call or write Pulmonary Fibrosis Foundation, 1332 No. Halstead Street, Ste 201, Chicago, IL 60622. In addition to info on fibrosis, it gives other sources of information. There is no charge, but a donation is accepted. Jack IPF 6/05 - UIP 5/08 Thank you! I appreciate you all making me feel so welcome and helping me with questions. I did go to the library today and in all of the Hall County Library System, there are no books on PF. What's up with that? Can anyone recommend any PF books to me?Also, just in His great & mysterious plan, my pastor's sermon was on grieving. WOW! I was surrounded by my friends & there were quite a few tears dripping out everywhere.I know one thing, I can't wait until 1:00 on Friday, to meet with Dr. .Alana P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59 Quote Link to comment Share on other sites More sharing options...
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