Re: Re: How PF has improved my life

[Guest guest]

PF improved my life because of rehab - bringing exercise into my life on a regular schedule

also, i am getting an education about things i never would have thought about

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: How PF has improved my lifeTo: Breathe-Support Date: Friday, March 27, 2009, 2:14 PM

I appreciate each day more. I appreciate my husband more. I do not run around half crazy because of some schedule I didn't make and can't keep up with. I do not mind sitting at red lights or standing in line to purchase something. Because I can stand in line and drive myself around and work. I have learned to say NO. I don't feel guilty about not doing something or going somewhere when I just don't feel like it. I don't say Oh I'm fine when I'm clearly not. Good question Bruce. You get points for asking it. S, Lubbock, TXNSIP w/PF 12/2006 et al >> Ok....I know to some, especially newcomers, this is an insane topic.> But, I know there are many ways in which the diagnosis and subsequent> events have actually made my life

better. I know things I've gained. I'm> going to reserve my list a bit and just want to hear others answer.> While none of us would have chosen to have PF, I think it's important to> remind ourselves of the good aspects of our lives and to instill among> the newcomers the hope, not of a cure, but of a good life. So, what have> you gained or what is better than before or what have you done since> diagnosis that you might not have otherwise?>

[Guest guest]

I have started a bucket list!!

bucket list So far it is not very long, but I did ride a roller coaster at Dollywood last year which is something I would NEVER have done before. Probably will never do it again, but it was fun and I am glad I did it. I have never tried lobster and that is on my list still to do.

I have found that ANYTHING and I mean ANYTHING can wait until you feel like doing it and if you never feel like doing it, oh well. I don't stress myself out anymore over I might be a few minutes late getting somewhere or if my trash has to wait a couple of days before I take it out (I have it out of sight, though). If I have to empty the dishwasher today and that is all the housework I get done, then fine, the rest can wait. Life is to short to worry about the stupid stuff that will go on without you long after you are no longer in this world. I take time when walking my dog to notice the birds in the park and the squirrels and I pay attention to when the flowers are blooming and things that I have taken for granted for so many years just because I was always "too busy." Some days I work in my pajamas all day and don't even get dressed or comb my hair if I feel like the brush is just too

heavy. No one is going to see me anyway working from home and Gizzy really doesn't care what I look like!! I have found that my little dog is fast becoming my best friend in the world and it takes so little to make him happy. Most of all, had it not been for these STUPID diseases, I would not have found any of you and for that I thank God everyday!!

For all the angels in this group -- CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Friday, March 27, 2009 1:14:55 PMSubject: Re: How PF has improved my life

I appreciate each day more. I appreciate my husband more. I do not run around half crazy because of some schedule I didn't make and can't keep up with. I do not mind sitting at red lights or standing in line to purchase something. Because I can stand in line and drive myself around and work. I have learned to say NO. I don't feel guilty about not doing something or going somewhere when I just don't feel like it. I don't say Oh I'm fine when I'm clearly not. Good question Bruce. You get points for asking it. S, Lubbock, TXNSIP w/PF 12/2006 et al >> Ok....I know to some, especially newcomers, this is an insane topic.> But, I know there are many ways in which the diagnosis and

subsequent> events have actually made my life better. I know things I've gained. I'm> going to reserve my list a bit and just want to hear others answer.> While none of us would have chosen to have PF, I think it's important to> remind ourselves of the good aspects of our lives and to instill among> the newcomers the hope, not of a cure, but of a good life. So, what have> you gained or what is better than before or what have you done since> diagnosis that you might not have otherwise?>

[Guest guest]

I have started a bucket list!!

bucket list So far it is not very long, but I did ride a roller coaster at Dollywood last year which is something I would NEVER have done before. Probably will never do it again, but it was fun and I am glad I did it. I have never tried lobster and that is on my list still to do.

I have found that ANYTHING and I mean ANYTHING can wait until you feel like doing it and if you never feel like doing it, oh well. I don't stress myself out anymore over I might be a few minutes late getting somewhere or if my trash has to wait a couple of days before I take it out (I have it out of sight, though). If I have to empty the dishwasher today and that is all the housework I get done, then fine, the rest can wait. Life is to short to worry about the stupid stuff that will go on without you long after you are no longer in this world. I take time when walking my dog to notice the birds in the park and the squirrels and I pay attention to when the flowers are blooming and things that I have taken for granted for so many years just because I was always "too busy." Some days I work in my pajamas all day and don't even get dressed or comb my hair if I feel like the brush is just too

heavy. No one is going to see me anyway working from home and Gizzy really doesn't care what I look like!! I have found that my little dog is fast becoming my best friend in the world and it takes so little to make him happy. Most of all, had it not been for these STUPID diseases, I would not have found any of you and for that I thank God everyday!!

For all the angels in this group -- CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Friday, March 27, 2009 1:14:55 PMSubject: Re: How PF has improved my life

I appreciate each day more. I appreciate my husband more. I do not run around half crazy because of some schedule I didn't make and can't keep up with. I do not mind sitting at red lights or standing in line to purchase something. Because I can stand in line and drive myself around and work. I have learned to say NO. I don't feel guilty about not doing something or going somewhere when I just don't feel like it. I don't say Oh I'm fine when I'm clearly not. Good question Bruce. You get points for asking it. S, Lubbock, TXNSIP w/PF 12/2006 et al >> Ok....I know to some, especially newcomers, this is an insane topic.> But, I know there are many ways in which the diagnosis and

subsequent> events have actually made my life better. I know things I've gained. I'm> going to reserve my list a bit and just want to hear others answer.> While none of us would have chosen to have PF, I think it's important to> remind ourselves of the good aspects of our lives and to instill among> the newcomers the hope, not of a cure, but of a good life. So, what have> you gained or what is better than before or what have you done since> diagnosis that you might not have otherwise?>

[Guest guest]

Caro....did you ever put up a picture of your little gizzy? I'd love to see what he looks like.

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

Re: How PF has improved my life

I appreciate each day more. I appreciate my husband more. I do not run around half crazy because of some schedule I didn't make and can't keep up with. I do not mind sitting at red lights or standing in line to purchase something. Because I can stand in line and drive myself around and work. I have learned to say NO. I don't feel guilty about not doing something or going somewhere when I just don't feel like it. I don't say Oh I'm fine when I'm clearly not. Good question Bruce. You get points for asking it. S, Lubbock, TXNSIP w/PF 12/2006 et al >> Ok....I know to some, especially newcomers, this is an insane topic.> But, I know there are many ways in which the diagnosis and subsequent> events have actually made my life better. I know things I've gained. I'm> going to reserve my list a bit and just want to hear others answer.> While none of us would have chosen to have PF, I think it's important to> remind ourselves of the good aspects of our lives and to instill among> the newcomers the hope, not of a cure, but of a good life. So, what have> you gained or what is better than before or what have you done since> diagnosis that you might not have otherwise?>

[Guest guest]

Caro....did you ever put up a picture of your little gizzy? I'd love to see what he looks like.

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

Re: How PF has improved my life

I appreciate each day more. I appreciate my husband more. I do not run around half crazy because of some schedule I didn't make and can't keep up with. I do not mind sitting at red lights or standing in line to purchase something. Because I can stand in line and drive myself around and work. I have learned to say NO. I don't feel guilty about not doing something or going somewhere when I just don't feel like it. I don't say Oh I'm fine when I'm clearly not. Good question Bruce. You get points for asking it. S, Lubbock, TXNSIP w/PF 12/2006 et al >> Ok....I know to some, especially newcomers, this is an insane topic.> But, I know there are many ways in which the diagnosis and subsequent> events have actually made my life better. I know things I've gained. I'm> going to reserve my list a bit and just want to hear others answer.> While none of us would have chosen to have PF, I think it's important to> remind ourselves of the good aspects of our lives and to instill among> the newcomers the hope, not of a cure, but of a good life. So, what have> you gained or what is better than before or what have you done since> diagnosis that you might not have otherwise?>

[Guest guest]

I FINALLY GOT PICS POSTED!!! All my bunch and just some sewing I do whenever I feel like it. Hope you all like them!! At least now you can see how fat I have gotten from the prednisone!! CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Friday, March 27, 2009 7:10:01 PMSubject: Re: Re: How PF has improved my life

Caro....did you ever put up a picture of your little gizzy? I'd love to see what he looks like.

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

Re: How PF has improved my life

I appreciate each day more. I appreciate my husband more. I do not run around half crazy because of some schedule I didn't make and can't keep up with. I do not mind sitting at red lights or standing in line to purchase something. Because I can stand in line and drive myself around and work. I have learned to say NO. I don't feel guilty about not doing something or going somewhere when I just don't feel like it. I don't say Oh I'm fine when I'm clearly not. Good question Bruce. You get points for asking it. S, Lubbock, TXNSIP w/PF 12/2006 et al >> Ok....I know to some, especially newcomers, this is an insane topic.> But, I know there are many ways in which the diagnosis and

subsequent> events have actually made my life better. I know things I've gained. I'm> going to reserve my list a bit and just want to hear others answer.> While none of us would have chosen to have PF, I think it's important to> remind ourselves of the good aspects of our lives and to instill among> the newcomers the hope, not of a cure, but of a good life. So, what have> you gained or what is better than before or what have you done since> diagnosis that you might not have otherwise?>

[Guest guest]

Eileen

Congratulations on your Irish citizenship! I'm a tad jealous. My family has been in the states since the time of the famine so I'm too many generations removed to qualify.

My paternal grandfather's family is from Kerry on the west coast. Where is yours from?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, March 27, 2009 9:28:10 PMSubject: Re: How PF has improved my life

Hi BruceYou are so right. Finding out I had IPF in May 07 was very scary and very upsetting but then I figured "Hell, whatever time I have left do I want to spend it being sad, scared and miserable; or enjoying every single moment I have?". I chose the latter. I was 55 at the time and had always thought that ONE DAY I would love to learn to play the piano. So, I have been taking piano lessons and I absolutely love it. I could not even read a single note of music and now I can play Beethoven and Brahms. My inlaws loved that I was taking piano lessons and gave me an old piano my husband had learned to play on as a child. I also knew for a long time that as a grandchild of four people born in Ireland, I could become an Irish citizen and still keep my American citizenship. In November 2008 I officially was entered into the Irish Foreign books registry as an Irish Citizen. I could never be more prouder than being American but this is the second

best!! These are two things that I am sure I would never have gotten around to if not for the dreaded diagnosis!Life should not be measured by the breaths we take; but by the moments that take our breath away!Eileen 57 IPF/UIP May 07>> Me too Jackie boy. I love ya.> MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > How PF has improved my life> > > Ok.....I know to some, especially newcomers, this is an insane topic.> But, I know there are many ways in which the diagnosis and subsequent> events have actually made my life better. I know things I've gained. I'm> going to reserve my list a bit and just want to hear others answer.> While none of us would have chosen to have PF, I think it's important to> remind ourselves of the good aspects of our lives and to instill among> the newcomers the hope, not of a cure, but of a good life. So,

what have> you gained or what is better than before or what have you done since> diagnosis that you might not have otherwise?>

[Guest guest]

Thanks for the pics. now I can put your face to you posts!

Gizzy is adorable. And the boys too.

How much weight have you gained on prednisone? You don't look so fat to me.

I gotta love ya in the glasses!

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

Re: How PF has improved my life

I appreciate each day more. I appreciate my husband more. I do not run around half crazy because of some schedule I didn't make and can't keep up with. I do not mind sitting at red lights or standing in line to purchase something. Because I can stand in line and drive myself around and work. I have learned to say NO. I don't feel guilty about not doing something or going somewhere when I just don't feel like it. I don't say Oh I'm fine when I'm clearly not. Good question Bruce. You get points for asking it. S, Lubbock, TXNSIP w/PF 12/2006 et al >> Ok....I know to some, especially newcomers, this is an insane topic.> But, I know there are many ways in which the diagnosis and subsequent> events have actually made my life better. I know things I've gained. I'm> going to reserve my list a bit and just want to hear others answer.> While none of us would have chosen to have PF, I think it's important to> remind ourselves of the good aspects of our lives and to instill among> the newcomers the hope, not of a cure, but of a good life. So, what have> you gained or what is better than before or what have you done since> diagnosis that you might not have otherwise?>

[Guest guest]

A wonderful story, Jane. It underscores once again that a positive attitude will triumph over a negative attirude any time. Never say I can't, even when you can't. By trying, you eventually will, and you illustrate the point brilliantly. Thanks for sharing. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Sunday, March 29, 2009 11:05:57 AMSubject: Re: How PF has improved my life

I wanted to break in and talk about playing the piano. It has been my life since the age of nearly 8 years old! My very fitst teacher goes to church with us and at our dinner last May she spoke about how my sister & I did not pratice!

When I went to the rehab hospital in Chattanooga 4 and 1/2 years ago, a recreation therapist came to my room to interview me when I first arrived. (The PT and OT really scared me when they came, I thought "This is going to be rough!) When the recreation therapist came, I felt more at ease. She asked me what I liked to do and I talked about the computer. Then she asked me what job I had performed and I told her that I was a piano teacher. From that day forward, whenever she came to get me for therapy, she rolled me downstairs to the piano. The first day, she put it in a room where others were doing PT and OT stuff. My first attempt at playing was awful! But the others didn't think so. I was glad that I did not know anyone there who knew me. But it must have helped as it helped me. I could barely lift my left hand to the keyboard. I am making sure now that I keep

on playing as I play for the 3 year olds at church while they sing. I used to do a lot of professional playing but now I am satisfied to play for myself and for others to help. I did not realize how much it has helped me in the struggle to get back somewhat what I had. When I started the rehab, I could not even lift my left arm. And now I can. Thanks to God.

Love & Toodles

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> > > >> > > > Me too Jackie boy. I love ya.> > > > MamaSher; 70, IPF 3-06, OR.> > > > Nasturtiums> > > > Don't fret about tomorrow, God is already there!> > > >> > > >

How PF has improved my life> > > >> > > >> > > > Ok.....I know to some, especially newcomers, this is an insane> > topic.> > > > But, I know there are many ways in which the diagnosis

and> > subsequent> > > > events have actually made my life better. I know things I've gained.> > I'm> > > > going to reserve my list a bit and just want to hear others answer.> > > > While none of us would have chosen to have PF, I think it's> > important to> > > > remind ourselves of the good aspects of our lives and to instill> > among> > > > the newcomers the hope, not of a cure, but of a good life.. So, what> > have> > > > you gained or what is better than before or what have you done since> > > > diagnosis that you might not have otherwise?> > > >> > >> >>

[Guest guest]

Jane... I don't remember reading this about you before. A great success story!

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

How PF has improved my life> > > >> > > >> > > > Ok.....I know to some, especially newcomers, this is an insane> > topic.> > > > But, I know there are many ways in which the diagnosis and> > subsequent> > > > events have actually made my life better. I know things I've gained.> > I'm> > > > going to reserve my list a bit and just want to hear others answer.> > > > While none of us would have chosen to have PF, I think it's> > important to> > > > remind ourselves of the good aspects of our lives and to instill> > among> > > > the newcomers the hope, not of a cure, but of a good life.. So, what> > have> > > > you gained or what is better than before or what have you done since> > > > diagnosis that you might not have otherwise?> > > >> > >> >>