Caro

December 26, 2008

Caro,

It is so good to hear from you and so sorry you have been ill. I had a wonderful Christmas also. Too much food and too many goodies but it was delicious! AND I too am starting my diet today. My son in law and brother in law were layed off last month and for us it was a "gift restricted" holiday, but it really didn't matter. The kids had a blast and less gift opening meant more time for eating and playing. I hope you are feeling better soon- R. (52) Sarcoid/PF 3/2006 Carlsbad, California

From: Sher Bauman <bofus (AT) wbcable (DOT) net>Subject: From Mama SherTo: Breathe-Support@ yahoogroups. comDate: Thursday, December 25, 2008, 4:55 PM

Hi All...well our Christmas visit w/kids was short and sweet but we are home already. Stayed overnight last night and today about noon the snow started down in buckets so we shoved our stuff in the car and headed home...just in case.

I don't know the reason but these two recent holidays seem particularly special. T-day was so nice and we had such a nice morning with the kids/grandkids today.

I seem to be aware of family more than a few months ago.

Lysa fixed a wonderful breakfast of Quiche, bacon, sausage, hash browns and fresh cut pears. So good! They always have a "Jesus Cake" so Lysa read a short story about Jesus' birth and we all sang Happy Birthday to Jesus and enjoyed a piece of cake.

I hope all of you had a day as filled with love and goodies as we had.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

January 1, 2009

MB...I hope the pukey bug passes soon...giggle. Take care of you!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

new and scared> > > Hi > My name is Eileen. I was diagnosed w IPF/UIP in May 2007. I have > actually been doing very well till this Thanksgiving. I got the flu > and my oxygen dropped. The doctor put me on 02 temporarily saying he > thought I would go back up but I have not. Monday he told me I have to > face the possibility my fibrosis has worsened and I will need to stay > on 02. I happen to be off from work this week so I am trying to take > it easy but I am scared. I am so tired. How am I going to keep > working? If I don't work we will lose our house. Not a good market to > have to sell now. I am just scared and need someone who knows what it > is like to talk to.>

January 1, 2009

MB...I hope the pukey bug passes soon...giggle. Take care of you!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

new and scared> > > Hi > My name is Eileen. I was diagnosed w IPF/UIP in May 2007. I have > actually been doing very well till this Thanksgiving. I got the flu > and my oxygen dropped. The doctor put me on 02 temporarily saying he > thought I would go back up but I have not. Monday he told me I have to > face the possibility my fibrosis has worsened and I will need to stay > on 02. I happen to be off from work this week so I am trying to take > it easy but I am scared. I am so tired. How am I going to keep > working? If I don't work we will lose our house. Not a good market to > have to sell now. I am just scared and need someone who knows what it > is like to talk to.>

January 1, 2009

MB...I hope the pukey bug passes soon...giggle. Take care of you!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

new and scared> > > Hi > My name is Eileen. I was diagnosed w IPF/UIP in May 2007. I have > actually been doing very well till this Thanksgiving. I got the flu > and my oxygen dropped. The doctor put me on 02 temporarily saying he > thought I would go back up but I have not. Monday he told me I have to > face the possibility my fibrosis has worsened and I will need to stay > on 02. I happen to be off from work this week so I am trying to take > it easy but I am scared. I am so tired. How am I going to keep > working? If I don't work we will lose our house. Not a good market to > have to sell now. I am just scared and need someone who knows what it > is like to talk to.>

January 23, 2009

Hi Carolyn.

My name is Margaret and this is my third day in the group. I am so touched by your situation. I am sick myself and above all else, I want to reconcile with my daughter before it is too late for both of our sakes. I will also tell you that your son's situation is of his own doing, he is an adult, responsible and accountable for himself and IT IS NOT YOUR FAULT! Don't worry about what others might say, they do not know what is in your heart.

There is a poem that I will send to you as soon as I can copy it. I am not a fast typist at all. Right now, know that I am thinking of you and sending my prayers.

Margaret

To: Breathe-Support Sent: Thursday, January 22, 2009 3:10:27 PMSubject: Re: Caro

I have missed you all, too, MB, soOOO much!! I am promising myself and every one of you to keep in touch more often. The thing that got me so bad with my son is that he called me the day before asking me for help with his rent and I told him if he could just hold out a couple of more weeks, I was getting my tax refund and I could help him then. The next night I get a call from my older son thinking he was going to tell me he had gotten kicked out of his apartment, but he said no, I don't think he will be going anywhere for awhile. My heart just dropped. I totally lost it. I think I cried for 3 days straight until I finally made myself sick. I haven't been to see him yet. Have to fill out forms and all to be able to visit and he is about 4 hours away in another county closer to the coast near Gulfport. My old car is so raggedy plus with all the problems I have getting out anyway, I don't know when

I will get to see him again. I keep telling myself, if only I would have had the money when he asked me. My oldest son said not to think that, because if he was going to do it, he was going to do it anyway, maybe not that week, but the next week or the next when he got behind on his rent again. I just keep wondering where I went wrong. He lived with me for 19 years and said he finally had a place to go and stay on his own with some friends. After sleeping on a park bench for 2 months, he finally called me and I went and picked him up and it was so awful. I think he probably had not showered in weeks. I got him a room for rent, bought him food, washed his clothes, fixed his raggedier (is that a word??) than mine car, then my oldest son paid for his room the next week because he "still couldn't find a job." When the third week came up, my oldest son let him move in with him on the condition that he had

30 days to get a job or he had to move out. He got a job and eventually got his own apartment when my oldest son moved out into another apartment and he took over the lease on that one. I even told him at Christmas this year how proud I was of him and that he had come so far from where he was 2 years ago sleeping on a park bench. Then this happened. I will probably die while he is prison. So sad. I just wish I could have done something else. My oldest son tells me to stop worrying about him and that if that if that is what he was doing when he was out, he is probably better off in jail. I am just thankful he didn't get killed. They stole guns from a man's house and the man came home early. He ran through the woods and got caught by the K-9's. If he would have been carrying one of those guns instead of leaving them in the getaway car and running, he probably would have been shot. I

am just thankful he is still alive. My oldest son told me I need to be worrying about myself, but I just think whatever they say about me, they will say, and I will deal with it and go on. Guess I will have to do the same with my youngest son, but it seems harder to deal with than the illness.

CaroCaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: CaroTo: Breathe-Support@ yahoogroups. comDate: Wednesday, January 21, 2009, 5:23 PM

Caro,

Hi there girl! Just wondering how you are doing. Let us know when you have a chance!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

January 23, 2009

Hi Carolyn.

My name is Margaret and this is my third day in the group. I am so touched by your situation. I am sick myself and above all else, I want to reconcile with my daughter before it is too late for both of our sakes. I will also tell you that your son's situation is of his own doing, he is an adult, responsible and accountable for himself and IT IS NOT YOUR FAULT! Don't worry about what others might say, they do not know what is in your heart.

There is a poem that I will send to you as soon as I can copy it. I am not a fast typist at all. Right now, know that I am thinking of you and sending my prayers.

Margaret

To: Breathe-Support Sent: Thursday, January 22, 2009 3:10:27 PMSubject: Re: Caro

I have missed you all, too, MB, soOOO much!! I am promising myself and every one of you to keep in touch more often. The thing that got me so bad with my son is that he called me the day before asking me for help with his rent and I told him if he could just hold out a couple of more weeks, I was getting my tax refund and I could help him then. The next night I get a call from my older son thinking he was going to tell me he had gotten kicked out of his apartment, but he said no, I don't think he will be going anywhere for awhile. My heart just dropped. I totally lost it. I think I cried for 3 days straight until I finally made myself sick. I haven't been to see him yet. Have to fill out forms and all to be able to visit and he is about 4 hours away in another county closer to the coast near Gulfport. My old car is so raggedy plus with all the problems I have getting out anyway, I don't know when

I will get to see him again. I keep telling myself, if only I would have had the money when he asked me. My oldest son said not to think that, because if he was going to do it, he was going to do it anyway, maybe not that week, but the next week or the next when he got behind on his rent again. I just keep wondering where I went wrong. He lived with me for 19 years and said he finally had a place to go and stay on his own with some friends. After sleeping on a park bench for 2 months, he finally called me and I went and picked him up and it was so awful. I think he probably had not showered in weeks. I got him a room for rent, bought him food, washed his clothes, fixed his raggedier (is that a word??) than mine car, then my oldest son paid for his room the next week because he "still couldn't find a job." When the third week came up, my oldest son let him move in with him on the condition that he had

30 days to get a job or he had to move out. He got a job and eventually got his own apartment when my oldest son moved out into another apartment and he took over the lease on that one. I even told him at Christmas this year how proud I was of him and that he had come so far from where he was 2 years ago sleeping on a park bench. Then this happened. I will probably die while he is prison. So sad. I just wish I could have done something else. My oldest son tells me to stop worrying about him and that if that if that is what he was doing when he was out, he is probably better off in jail. I am just thankful he didn't get killed. They stole guns from a man's house and the man came home early. He ran through the woods and got caught by the K-9's. If he would have been carrying one of those guns instead of leaving them in the getaway car and running, he probably would have been shot. I

am just thankful he is still alive. My oldest son told me I need to be worrying about myself, but I just think whatever they say about me, they will say, and I will deal with it and go on. Guess I will have to do the same with my youngest son, but it seems harder to deal with than the illness.

CaroCaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: CaroTo: Breathe-Support@ yahoogroups. comDate: Wednesday, January 21, 2009, 5:23 PM

Caro,

Hi there girl! Just wondering how you are doing. Let us know when you have a chance!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

January 23, 2009

Hi again, the poem, On Children, is in the book The Prophet by Kahlil Gibran. I found his writings way back in 1969, the year I first started teaching, and have kept it in mind during rough patches with my only child.

And a woman who held a babe against

her bosom said, Speak to us of Children.

And he said:

Your children are not your children.

They are the sons and daughters of Life's

longing for itself.

They come through you but not from

you.

And though they are with you yet they

belong not to you.

You may give them your love but not

your thoughts,

For they have their own thoughts.

You may house their bodies but not

their souls,

For their souls belong in the house of to-

morrow, which you can not visit, not even

in your dreams.

You may strive to be like them, but seek

not to make them like you.

For life goes not backward nor tarries

with yesterday.

You are the bows from which your chil-

dren as living arrows are sent forth.

The archer sees the mark upon the the path

of the infinite, and He bends you with His

might that His arrows may go swift and far.

Let your bending in the archer's hand

be for gladness;

For even as He loves the arrow that flies,

so He loves also the bow that is stable.

It is something to ponder... and reading poetry is supposed to lower your blood pressure and give you a sense of well being. Hope this helps.

Love ya, from a Florida girl that got lost in Alaska. I wonder how much of me is left after the brain freeze and lack of oxygen...

Margaret

________________________________To: Breathe-Support Sent: Thursday, January 22, 2009 3:34:21 PMSubject: Re: CaroOh Jon, what a wonderful saying!! and it is so true!! I told my oldest son if he gets to talk to him before I do, just to tell him how much I love him and I always will.CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08MississippiFrom: Jon Egger <revegger (AT) gmail (DOT) com>Subject: Re: CaroTo: Breathe-Support@ yahoogroups. comDate: Thursday, January 22, 2009, 6:29 PMHang in there, Caro.They say about children: "When they are little they step on our toes,when they are big they step on our

hearts."Peace and blessings,jonsarcoid 1/09-- Two wrongs don't make a right,but two 's make an airplane.

January 23, 2009

Hi again, the poem, On Children, is in the book The Prophet by Kahlil Gibran. I found his writings way back in 1969, the year I first started teaching, and have kept it in mind during rough patches with my only child.

And a woman who held a babe against

her bosom said, Speak to us of Children.

And he said:

Your children are not your children.

They are the sons and daughters of Life's

longing for itself.

They come through you but not from

you.

And though they are with you yet they

belong not to you.

You may give them your love but not

your thoughts,

For they have their own thoughts.

You may house their bodies but not

their souls,

For their souls belong in the house of to-

morrow, which you can not visit, not even

in your dreams.

You may strive to be like them, but seek

not to make them like you.

For life goes not backward nor tarries

with yesterday.

You are the bows from which your chil-

dren as living arrows are sent forth.

The archer sees the mark upon the the path

of the infinite, and He bends you with His

might that His arrows may go swift and far.

Let your bending in the archer's hand

be for gladness;

For even as He loves the arrow that flies,

so He loves also the bow that is stable.

It is something to ponder... and reading poetry is supposed to lower your blood pressure and give you a sense of well being. Hope this helps.

Love ya, from a Florida girl that got lost in Alaska. I wonder how much of me is left after the brain freeze and lack of oxygen...

Margaret

________________________________To: Breathe-Support Sent: Thursday, January 22, 2009 3:34:21 PMSubject: Re: CaroOh Jon, what a wonderful saying!! and it is so true!! I told my oldest son if he gets to talk to him before I do, just to tell him how much I love him and I always will.CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08MississippiFrom: Jon Egger <revegger (AT) gmail (DOT) com>Subject: Re: CaroTo: Breathe-Support@ yahoogroups. comDate: Thursday, January 22, 2009, 6:29 PMHang in there, Caro.They say about children: "When they are little they step on our toes,when they are big they step on our

hearts."Peace and blessings,jonsarcoid 1/09-- Two wrongs don't make a right,but two 's make an airplane.

January 23, 2009

Take Beth's words to heart.

To: Breathe-Support Sent: Thursday, January 22, 2009 3:55:58 PMSubject: Re: Caro

Caro,

You are not responsible for this. Don't take it on because it will hurt you and it won't help him. The truth is he made a bad decision and now there will be consequences. Ultimately he can choose to learn from this and get his act together or not. It's up to him.

All you can do is love him and I know you do because I know how much I love my 23 year old. Even back when he was doing things that broke my heart into a million pieces....drugs, alcohol etc etc I loved him.

In the meantime the best thing you can do for yourself and for him is to take care of you. You may not be able to see him right now but you can most likely write to him. Even if you don't know where to send it right now, write him a letter. Tell him what you're feeling and how much you love him. It's a way to let some of those feelings out instead of holding them all inside.

You are in my thoughts and prayers!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Carolyn Wade <carowade4444@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, January 22, 2009 7:10:27 PMSubject: Re: Caro

I have missed you all, too, MB, soOOO much!! I am promising myself and every one of you to keep in touch more often. The thing that got me so bad with my son is that he called me the day before asking me for help with his rent and I told him if he could just hold out a couple of more weeks, I was getting my tax refund and I could help him then. The next night I get a call from my older son thinking he was going to tell me he had gotten kicked out of his apartment, but he said no, I don't think he will be going anywhere for awhile. My heart just dropped. I totally lost it. I think I cried for 3 days straight until I finally made myself sick. I haven't been to see him yet. Have to fill out forms and all to be able to visit and he is about 4 hours away in another county closer to the coast near Gulfport. My old car is so raggedy plus with all the problems I have getting out anyway, I don't know when

I will get to see him again. I keep telling myself, if only I would have had the money when he asked me. My oldest son said not to think that, because if he was going to do it, he was going to do it anyway, maybe not that week, but the next week or the next when he got behind on his rent again. I just keep wondering where I went wrong. He lived with me for 19 years and said he finally had a place to go and stay on his own with some friends. After sleeping on a park bench for 2 months, he finally called me and I went and picked him up and it was so awful. I think he probably had not showered in weeks. I got him a room for rent, bought him food, washed his clothes, fixed his raggedier (is that a word??) than mine car, then my oldest son paid for his room the next week because he "still couldn't find a job." When the third week came up, my oldest son let him move in with him on the condition that he had

30 days to get a job or he had to move out. He got a job and eventually got his own apartment when my oldest son moved out into another apartment and he took over the lease on that one. I even told him at Christmas this year how proud I was of him and that he had come so far from where he was 2 years ago sleeping on a park bench. Then this happened. I will probably die while he is prison. So sad. I just wish I could have done something else. My oldest son tells me to stop worrying about him and that if that if that is what he was doing when he was out, he is probably better off in jail. I am just thankful he didn't get killed. They stole guns from a man's house and the man came home early. He ran through the woods and got caught by the K-9's. If he would have been carrying one of those guns instead of leaving them in the getaway car and running, he probably would have been shot. I

am just thankful he is still alive. My oldest son told me I need to be worrying about myself, but I just think whatever they say about me, they will say, and I will deal with it and go on. Guess I will have to do the same with my youngest son, but it seems harder to deal with than the illness.

CaroCaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: CaroTo: Breathe-Support@ yahoogroups. comDate: Wednesday, January 21, 2009, 5:23 PM

Caro,

Hi there girl! Just wondering how you are doing. Let us know when you have a chance!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

January 24, 2009

Thank you again Margaret for the poem and the prayers. I hope you can reconcile with your daughter. My son and I are still on good terms, although I have not seen him since he was arrested. I am sure when he sees me he will know just from that how heartbroken I am and he will surely be ashamed. He is really not a bad kid, like I said, he just got with the wrong people and I guess was looking for an easy way out. I have tried a million times to teach him that if you don't work for it, you just don't get it, but I guess it did not sink in. I am still hoping that maybe with good behavior he will come out of this with only a year or two prison time, but it does not look good. Thanks again for caring, If I can help with your situation, just let me know. I hope it works out for you. Take care --CaroASTHMA

1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: CaroTo: Breathe-Support@ yahoogroups. comDate: Wednesday, January 21, 2009, 5:23 PM

Caro,

Hi there girl! Just wondering how you are doing. Let us know when you have a chance!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

January 24, 2009

Thank you again Margaret for the poem and the prayers. I hope you can reconcile with your daughter. My son and I are still on good terms, although I have not seen him since he was arrested. I am sure when he sees me he will know just from that how heartbroken I am and he will surely be ashamed. He is really not a bad kid, like I said, he just got with the wrong people and I guess was looking for an easy way out. I have tried a million times to teach him that if you don't work for it, you just don't get it, but I guess it did not sink in. I am still hoping that maybe with good behavior he will come out of this with only a year or two prison time, but it does not look good. Thanks again for caring, If I can help with your situation, just let me know. I hope it works out for you. Take care --CaroASTHMA

1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: CaroTo: Breathe-Support@ yahoogroups. comDate: Wednesday, January 21, 2009, 5:23 PM

Caro,

Hi there girl! Just wondering how you are doing. Let us know when you have a chance!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

January 24, 2009

Thank you again Margaret for the poem and the prayers. I hope you can reconcile with your daughter. My son and I are still on good terms, although I have not seen him since he was arrested. I am sure when he sees me he will know just from that how heartbroken I am and he will surely be ashamed. He is really not a bad kid, like I said, he just got with the wrong people and I guess was looking for an easy way out. I have tried a million times to teach him that if you don't work for it, you just don't get it, but I guess it did not sink in. I am still hoping that maybe with good behavior he will come out of this with only a year or two prison time, but it does not look good. Thanks again for caring, If I can help with your situation, just let me know. I hope it works out for you. Take care --CaroASTHMA

1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi

From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: CaroTo: Breathe-Support@ yahoogroups. comDate: Wednesday, January 21, 2009, 5:23 PM

Caro,

Hi there girl! Just wondering how you are doing. Let us know when you have a chance!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

February 19, 2009

Caro, If you even have a thought that you might need 02 don't wait around. You will feel so much better with it. I am sure you probably need it at night now. Our respiratory slows so much when we sleep we need 02. You will be surprised how well you feel in the AM. Don't play around to much.. Love & Prayers, PeggyFlorida, 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." Thanks . I am just finding more and more that I get SOB doing things that even 6 months ago I could do and it didn't bother me, like vacuuming the floor, or climbing a flight of stairs with a bag of groceries. Some days I struggle to have enough breath to eat and just give me and throw it in the trash. My pulmo wanted to put me on O2 with exertion last visit (last month) but he agreed to trial me on Ventolin inhaler with exertion first and go back in April and let him know how it goes. Guess I haven't really been using the inhaler like I should. I had better crack down on it this next month or he will definitely say O2 and I really don't think I'm quite ready for that yet. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08MississippiFrom: Zion <ljz741 (AT) verizon (DOT) net>To: Breathe-Support Sent: Thursday, February 19, 2009 3:13:16 PMSubject: Re: weight supportCaro, Eating uses a lot of O2. Yes, I get SOB while eating and have to use the O2while eating. After eating the SOB continues unless I've been on the O2 the entire time.There have been occasions when even with the O2 I am uncomfortable after eating and cannotget up right away to clean away the dishes etc. Often, things like that have to wait a while. Z 65, fibriotic NSIP/o5/PAAnd “mild” PH/10/07 and Reynaud’s too!!No, NSIP was not self-inflicted…I never smoked!Potter, reader,carousel lover and MomMom to Darahand Sara “I’m gonna be iron like a lion in Zion” Bob MarleyVinca Minor-periwinkle is my flower Carolyn Wade wrote:Since we are on the subject of eating, I was meaning to ask if anyone else has problems breathing when they eat? I have just noticed this happening to me over the last couple of months and it is really frustrating. Even if I eat small bites and eat slow, I still get short of breath. I am going back to Birmingham to UAB the first week of March and am definitely going to ask for some helpful hints. Was just curious if this is one of the things that is "supposed" to happen with UIP. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08MississippiFrom: friend.patti <friend.patti@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, February 18, 2009 8:15:12 PMSubject: weight supportmargaretso glad you had a great day; send the receipe for soup.. mine wasn't such a good day, felt bloated all day and of course like you said short of breath when over eat. but it was an emotional eating frenzy.. plan to try and eat healthy starting again.. Like MB says it isn't about losing weight it is about learning to eat right and still enjoy your food. To learn not live to eat. which i think at times is my theory.. Keep up the good work. patti nj, ipf 7'06, raynauds, scleroderma, PH 2'07> >> > Jack,> > Dr. Weil's websiteÂ has alot of information on an anti-inflammatory diet. Here is a link to his food pyramid:> > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- Inflammatory- Food-Pyramid. html> > > > I realize thatÂ this may be controversial to some people.. I'm not saying anyone shouldÂ make the same changes I have, just sharing what I've been working onÂ diet wise. I feel very comfortable with this partly because I'mÂ working with a nutritionist at Duke who is completely familiar with my medical situation and my history and more importantlyÂ I' m doing this with the blessing and encouragement of both my pulmonologist and my rheumatologist at Duke.> > Â > > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06Â Dermatomyositi s 11/08> > Â > > "May you never take one single breath for granted"> > > > > > > > > > ____________ _________ _________ __> > From: Jack Marshall mrshlljck@ .> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 4:04:42 PM> > Subject: Re: Re: Support to Lose Weight> > > > > > MB, I've never heard of an anti-inflammatory diet, but I am very interested in one.Â Can you share info> > on what it consists of?> > Â Jack> > 79/IPF - UIP/dx06/05 Maine > > > > > > > > > > ____________ _________ _________ __> > From: Beth mbmurtha (AT) yahoo (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 2:35:19 PM> > Subject: Re: Re: Support to Lose Weight> > > > > > Sue,> > I struggle with the same issue that you've all been talkingÂ about. I need to lose around the same amount as you do in order to go any further with transplant. Fortunately I am still considered way to healthy (I find that somewhat amusing) to be consideredÂ for transplant, overweight or not. But I also realize that could change at any time. > > MyÂ nsip seems to have been caused by the dermatomyositis which means that theoretically controlling my auto-immune condition helps to prevent worsening of myÂ lungÂ condition. Can't count on that obviously. Who do you see at Duke? I see Lake on, heÂ has told me that life expectancy with nsip (both fibrotic and cellular) varies tremendously from stats similar to IPF as you said to literally decadesÂ of stability. It may ultimately depend on what caused it. > > > > What I'm doing right now is radically different from anything else I've ever done.Â I've begunÂ working with a nutritionist from the Duke Center for Living and have begun eating an 'anti-inflammation' diet.Â I'm not at all focusing on losing weight (though I am) it's more about choosing to eat foods that can help my body be as healthy as possible. I don't know how this will work for me over the long haul but I'm giving it a go cause what I've done up till now hasn't gotten me anything but aggravation.> > > > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06Â Dermatomyositi s 11/08> > Â > > "May you never take one single breath for granted"> > > > > > > > > > ____________ _________ _________ __> > From: Sue Dassel sdassel (AT) verizon (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 10:17:40 AM> > Subject: Re: Support to Lose Weight> > > > > > Hi friends:Â I'd like to jump in here.Â I have always had a weight problem and have also been on Cellcept (3000 mg / day) and prednisone (now down to 5 mg) for the past 15 months.Â I gained about 25 lbs and now need to lose 100 lbs to be considered for a transplant at Duke.Â That 100 lbs might as well be 1000 lbs.Â I am looking into a lap band or bypass and would be approved from an ins. Standpoint, but before being considered Ihave to get an EKG, and a recent PFT, a psychologist eval and some other test.Â I am in the process of getting this info together.Â My pulmodoc at Duke has hesitantly said he would approve of this procedure for me.Â My local pulmodoc told me it's almost impossible to lose weight on prednisone and I don't want to go through a lap band procedure if I'm only going to lose a small amount of weight. The other thing he told me was that fibrotic NSIP is very close to IPF in terms of life expectancy.Â Â My last PFT done> > here locally was not very good from the diffusion standpoint â€"only 19% of predictedâ€"but the lung volume and other tests were not bad at all.Â Â Â Â Â Â Doc said there may be a variation in equipment from here to Duke so I guess my test in March will tell more.> > I am going back to Duke in March, and I have a feeling he isgoing to change the meds and probably up the prednisone.Â I am really in a quandary.> > I know part of my eating is psychological and the thought of a diet when dealing with this terminal disease is almost too much for me to handle.Â I don't want to feel deprived.Â It's not that I eat much in quantity because I feel terrible if I have overeaten, I just make the wrong choices so I don't feel deprived.> > There, I got it off my chest..Â Any suggestions/ recommendations would be welcome.> > Sue D.> > 62 yr old,Â Fibrotic NSIP dx 9/07,Â VA> > Â > >>No virus found in this incoming message.

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Version: 8.0.237 / Virus Database: 270.11.0/1959 - Release Date: 02/18/09 20:55:00

February 19, 2009

Well, I need less oxygen when sleeping because I am not exerting myself but that is just another difference between us all. That was documented by my 24 hours of wearing the device that measures the oxygen and heart rate while going about daily activities and sleeping.

To: Breathe-Support Sent: Thursday, February 19, 2009 1:35:12 PMSubject: Re: CaroCaro, If you even have a thought that you might need 02 don't wait around. You will feel so much better with it. I am sure you probably need it at night now. Our respiratory slows so much when we sleep we need 02. You will be surprised how well you feel in the AM. Don't play around to much..

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."

Thanks . I am just finding more and more that I get SOB doing things that even 6 months ago I could do and it didn't bother me, like vacuuming the floor, or climbing a flight of stairs with a bag of groceries. Some days I struggle to have enough breath to eat and just give me and throw it in the trash. My pulmo wanted to put me on O2 with exertion last visit (last month) but he agreed to trial me on Ventolin inhaler with exertion first and go back in April and let him know how it goes. Guess I haven't really been using the inhaler like I should. I had better crack down on it this next month or he will definitely say O2 and I really don't think I'm quite ready for that yet. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,

RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi

From: Zion <ljz741 (AT) verizon (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Thursday, February 19, 2009 3:13:16 PMSubject: Re: weight support

Caro, Eating uses a lot of O2. Yes, I get SOB while eating and have to use the O2while eating. After eating the SOB continues unless I've been on the O2 the entire time.There have been occasions when even with the O2 I am uncomfortable after eating and cannotget up right away to clean away the dishes etc. Often, things like that have to wait a while.

Z 65, fibriotic NSIP/o5/PA

And â€œmildâ€ PH/10/07 and Reynaudâ€™s too!!

No, NSIP was not self-inflictedâ€¦I never smoked!

Potter, reader,carousel lover and MomMom to Darah

and Sara

â€œIâ€™m gonna be iron like a lion in Zionâ€ Bob Marley

Vinca Minor-periwinkle is my flower

Carolyn Wade wrote:

Since we are on the subject of eating, I was meaning to ask if anyone else has problems breathing when they eat? I have just noticed this happening to me over the last couple of months and it is really frustrating. Even if I eat small bites and eat slow, I still get short of breath. I am going back to Birmingham to UAB the first week of March and am definitely going to ask for some helpful hints. Was just curious if this is one of the things that is "supposed" to happen with UIP. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi

From: friend.patti <friend.patti@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, February 18, 2009 8:15:12 PMSubject: weight support

margaretso glad you had a great day; send the receipe for soup.. mine wasn't such a good day, felt bloated all day and of course like you said short of breath when over eat. but it was an emotional eating frenzy.. plan to try and eat healthy starting again.. Like MB says it isn't about losing weight it is about learning to eat right and still enjoy your food. To learn not live to eat. which i think

at times is my theory.. Keep up the good work. patti nj, ipf 7'06, raynauds, scleroderma, PH 2'07> >> > Jack,> > Dr. Weil's websiteÃ‚ has alot of information on an anti-inflammatory diet. Here is a link to his food pyramid:> > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- Inflammatory- Food-Pyramid. html> > > > I realize thatÃ‚ this may be controversial to some people.. I'm not saying anyone shouldÃ‚ make the same changes I have, just sharing what I've been working onÃ‚ diet wise. I feel very comfortable with this partly because I'mÃ‚ working with a nutritionist at Duke who is completely familiar with my medical situation and my history and more importantlyÃ‚ I' m doing this with the blessing and encouragement of both my pulmonologist and my rheumatologist at Duke.> > Ã‚ >

> Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06Ã‚ Dermatomyositi s 11/08> > Ã‚ > > "May you never take one single breath for granted"> > > > > > > > > > ____________ _________ _________ __> > From: Jack Marshall mrshlljck@ .> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17,

2009 4:04:42 PM> > Subject: Re: Re: Support to Lose Weight> > > > > > MB, I've never heard of an anti-inflammatory diet, but I am very interested in one.Ã‚ Can you share info> > on what it consists of?> > Ã‚ Jack> > 79/IPF - UIP/dx06/05 Maine > > > > >

> > > > > ____________ _________ _________ __> > From: Beth mbmurtha (AT) yahoo (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 2:35:19 PM> > Subject: Re: Re: Support to Lose Weight> > > > > > Sue,> > I struggle with the same issue that you've all been talkingÃ‚ about. I need to lose around the same amount as you do in order to go any further with transplant. Fortunately I am still considered way to healthy (I find that somewhat amusing) to be consideredÃ‚ for transplant, overweight or not. But I also realize that could change at any time. > > MyÃ‚ nsip seems to have been caused by the dermatomyositis which means that theoretically controlling my auto-immune condition helps to prevent worsening of myÃ‚ lungÃ‚ condition. Can't count on that obviously. Who do you see at Duke? I see Lake on, heÃ‚ has told me that life expectancy with nsip (both fibrotic and cellular) varies tremendously from stats similar to IPF as you said to literally decadesÃ‚ of stability. It may ultimately depend on what caused it. > > > > What I'm doing right now is radically different from anything else I've ever done.Ã‚ I've begunÃ‚ working with a nutritionist from the Duke Center for Living and have begun eating an 'anti-inflammation' diet.Ã‚ I'm not at all focusing on losing weight (though I am) it's more about choosing to eat foods that can help my body be as healthy as possible. I don't know how this will work for me over the long haul but I'm giving it a go cause what I've done up till now hasn't gotten me anything but aggravation.> > > > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06Ã‚ Dermatomyositi s 11/08> > Ã‚ > > "May you never take one single breath for granted"> > > > > > > > > >

____________ _________ _________ __> > From: Sue Dassel sdassel (AT) verizon (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 10:17:40 AM> > Subject: Re: Support to Lose Weight> > > > > > Hi friends:Ã‚ I'd like to jump in here.Ã‚ I have always had a weight problem and have also been on Cellcept (3000 mg / day) and prednisone (now down to 5 mg) for the past 15 months.Ã‚ I gained about 25 lbs and now need to lose 100 lbs to be considered for a transplant at Duke.Ã‚ That 100 lbs might as well be 1000 lbs.Ã‚ I am looking into a lap band or bypass and would be approved from an ins. Standpoint, but before being considered Ihave to get an EKG, and a recent PFT, a psychologist eval and some other test.Ã‚ I am in the process of getting this info together.Ã‚ My pulmodoc at Duke has hesitantly said he would approve of this procedure for me.Ã‚ My local pulmodoc told me it's almost impossible to lose weight on prednisone and I don't want to go through a lap band procedure if I'm only going to lose a small amount of weight. The other thing he told me was that fibrotic NSIP is very close to IPF in terms of life expectancy.Ã‚ Ã‚ My last PFT done> > here locally was not very good from the diffusion standpoint Ã¢â‚¬"only 19% of predictedÃ¢â‚¬"but the lung volume and other tests were not bad at all.Ã‚ Ã‚ Ã‚ Ã‚ Ã‚ Ã‚ Doc said there may be a variation in equipment from here to Duke so I guess my test in March will tell more.> > I am going back to Duke in March, and I have a feeling he isgoing to change the meds and probably up the prednisone.Ã‚ I am really in a quandary.> > I know part of my eating is psychological and the thought of a diet when dealing with this terminal disease is almost too much for me to handle.Ã‚ I don't want to feel deprived.Ã‚ It's not that I eat much in quantity because I feel terrible if I have overeaten, I just make the wrong choices so I don't feel deprived.> > There, I got it off my chest..Ã‚ Any suggestions/ recommendations would be welcome.> > Sue D.> > 62 yr old,Ã‚ Fibrotic NSIP dx 9/07,Ã‚ VA> > Ã‚ > >>No virus found in this incoming message.

Checked by AVG - www.avg.com Version: 8.0.237 / Virus Database: 270.11.0/1959 - Release Date: 02/18/09 20:55:00

February 20, 2009

Thanks Peggy. I am going to UAB in Birmingham on March 3 and I have already made a list of questions to ask when I get there. I have to go for PFTs first and then see the doc. I am also going to mention that my liver tests were elevated even though my pulmodude said it wasn't enough to worry about. These guys are specialists in PF and I want their opinion, too, even though I really do trust my pulmodude. I will definitely ask about the oxygen, too. How are u doing? CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi

To: Breathe-Support Sent: Thursday, February 19, 2009 4:35:12 PMSubject: Re: CaroCaro, If you even have a thought that you might need 02 don't wait around. You will feel so much better with it. I am sure you probably need it at night now. Our respiratory slows so much when we sleep we need 02. You will be surprised how well you feel in the AM. Don't play around to much..