Re: Re: Fwd:

[Guest guest]

There's are very old saying: not sure that i am saying it correctly but -- from the time you are born, there are two things in life: taxes and death.

all living things die eventually--even plants, how and when are the unknowns, painless and later are the "ideals"Pink Joyce IPF 3/06 Pennsylvania

Subject: Re: Fwd:To: Breathe-Support Date: Saturday, November 22, 2008, 3:19 AM

Bob/PeggyThe word terminal is really a pretty poor term. It is used for this andmany other diseases when the more correct term would be "there is nocure." Life is terminal. It is a disease that there is no cure for andultimately if we don't die of something else first it might be our causeof death. Well, you know what? I have kidney problems. Guess they areterminal by that definition because there isn't a cure and ultimately ifI didn't die of something else they might be the cause of my death.I had to go look up and see if there was an official medical definitionof terminal. NIH says "A Disease that can not be cured and will causedeath." Does that mean tomorrow? Or within 100 years? Tel me after I'mgone which "terminal" disease took me. I guess I've always disliked theword from the time I found out that to go get on an airplane I had to goto a "terminal".Its that word and its

use that I think leads so many doctors to diagnoseand leave you feeling hopeless. I'm like Joyce said in that I don't feelterminal. I'm either alive or I'm not and I just pinched myself and itstill hurt so I must be alive.>> Hi Group, I wasn't going to post this but I just read Bob > post about finding out today we are terminal. Bob I am so sorry you> didn't know and had to find out in this way.> Are you going to Penn ? Anyhow maybe this will give you a little> insight as to what some of us have gone through.>> Please ask any questions you have and vent here. We understand like> no one without this> disease does.. WE GET IT..>> God Bless You. Take Care of You. We are all in this

fight together.> You are not alone.>>> 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.">>> >>>>>>>> Begin forwarded message:>> Date: November 21, 2008 10:20:12 PM EST> To: denise randel dnsrndl@...>> Peggy , Diagnosed 6/04 IPF.> 66 years old. Married 40 years. 3 children, 6 grandchildren.> God Blessed.>>> #1 I had just moved to another city and went to see a primary doc> for the first time.> Just a get acquainted visit. She looked at my fingers and said "You> have heart problems"> They were bluish. and a little clubbed. I had had to stop wearing>

acrylic nails a year before> because they would pop off. Little did I know.> She scheduled me for a HRCT the next afternoon. The tech told me to> wait on the report and take it right to my Doc. Well on top of the> report said STAT. I knew that couldn't be good so from there she sent> me to a pulmonary Doc. here in Ocala. He> says -within two min- you have fibrosis and will have a lung biopsy> and will wake up from surgery with> two tubes coming from your back and at that point I said "NO I won't.> My daughter was with me and we left shortly there after. He didn't> tell me anything> about the disease or that it was terminal. I never went back. To> make a long story short. I wound up at Shands at UF. after three or> four months> I went on line and looked it up. And read I was terminal. I then> found the Pulmonary fibrosis foundation and joined the

support group.> They are my life line. MY Air Family.>> #2 & 3 Very surprised and stunned. I re-read everything I could find> on line. On the way to my next appointment at Shands I just ask my> daughter how long she had known this disease was terminal. She said> from the first visit. She didn't know how to tell me. We cried and> talked and prayed the hour long trip to Shands that day.> She and my husband had talked about it but were to stunned to talk> about it. The first thing I told her was " God has a plan and I want> his will to be done"> I told my husband the same thing that evening. I did pray a lot for> strength and peace with all this. I did have peace beyond. I told my> family I did not want this home to become a place of mourning anddread.>> #4 My friends and family all cried within two minutes and I wound up> holding them,

consoling them and praying for strength for them. God> was so good to me through the news breaking part.>> #5 I think they all spread the word very quickly. I told them all> not to fear I am not going anywhere> until my time comes. And I didn't think it was soon.>> #6 My surprises all came 6 months or so after diagnosis. I didn't see> friends and some family members> for a few months at a time. That was heart breaking.>> #7 I am treated totally different. It swings to not looking at me or> to much sympathy. It is very hard to deal with at times. Things have> gotten better over time.>> #8 I was put on 60 mg. of prednisone because of an infection and> gained 70 pounds in 8 weeks. That was almost as life changing as> having this disease. Craving sweets, shaking, aching joints, NO> sleep, shaking some more. Grew hair on my face. Face

blew up like a> balloon. I looked like a freak. I went up from a 14 to a 20 and had> nothing that fit. I cried about my closet full of clothes I had> bought just before we moved.>>> #9 No I didn't try any other treatments. There is not a treatment for> IPF.>> #10 My whole world crashed. We had just moved from our family home> of 40 years. We had planned a retirement here in the Ocala National> Forest. Moved into a new home and have yet to get to finnish> decorating and doing things I would love to do. They seem unimportant> now. But at times I look around and feel like I have been robbed.> cheated and Oh so bruised.> When I look at my sweet wonderful husband and think of how he will> get along after I am gone. It> breaks my heart. He has been in training--cooking, laundry, cleaning.> I am not afraid of death but this dying part

is really rough.> I wish there was a way to explain how hard it is to NOT be able to> breath or yawn.. take a deep breath.>> #11 Oh I do look at life much differently. . I am more conscious of my> spiritual life than before.> I can now see Gods greatness in things that I took for granted most> of my life. I do not for the life of me know how others make it> without faith. Life is GOOD.>> #12 The best advise I can give is don't panic, KNOW you are not going> to die tomorrow. You still have a life to live. You do not have an> expiration date stamped on your body.. LIVE.>>>> 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.">>>

>

[Guest guest]

Thanks Peggy, I’m fine, or not sunk

in yet whatever, Just never saw it put into words yet. I do want to thank all

of you for your caring, Great job Bruce, being first always get its due. Good

or bad. At least first. Bob

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Joyce T Rosenberg

Sent: Saturday, November 22, 2008

8:30 AM

To: Breathe-Support

Subject: Re: Re:

Fwd:

There's are very old saying: not sure that i

am saying it correctly but -- from the time you are born, there are two

things in life: taxes and death.

all living things die eventually--even plants, how and when are the unknowns,

painless and later are the " ideals "

Pink Joyce IPF

3/06 Pennsylvania

From: Bruce Moreland

<brucemoreland (AT) gmail (DOT) com>

Subject: Re: Fwd:

To: Breathe-Support

Date: Saturday, November 22, 2008, 3:19 AM

Bob/Peggy

The word terminal is really a pretty poor term. It is used for this and

many other diseases when the more correct term would be " there is no

cure. " Life is terminal. It is a disease that there is no cure for and

ultimately if we don't die of something else first it might be our cause

of death. Well, you know what? I have kidney problems. Guess they are

terminal by that definition because there isn't a cure and ultimately if

I didn't die of something else they might be the cause of my death.

I had to go look up and see if there was an official medical definition

of terminal. NIH says " A Disease that can not be cured and will cause

death. " Does that mean tomorrow? Or within 100 years? Tel me after I'm

gone which " terminal " disease took me. I guess I've always disliked

the

word from the time I found out that to go get on an airplane I had to go

to a " terminal " .

Its that word and its use that I think leads so many doctors to diagnose

and leave you feeling hopeless. I'm like Joyce said in that I don't feel

terminal. I'm either alive or I'm not and I just pinched myself and it

still hurt so I must be alive.

>

> Hi Group, I wasn't going to post this but I just read Bob

> post about finding out today we are terminal. Bob I am so sorry you

> didn't know and had to find out in this way.

> Are you going to Penn ? Anyhow maybe this will give you a little

> insight as to what some of us have gone through.

>

> Please ask any questions you have and vent here. We understand like

> no one without this

> disease does.. WE GET IT..

>

> God Bless You. Take Care of You. We are all in this fight together.

> You are not alone.

>

>

> 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. "

>

>

> 

>

>

>

>

>

>

>

> Begin forwarded message:

>

> From: Peggy pac1773@...

> Date: November 21, 2008 10:20:12 PM EST

> To: denise randel dnsrndl@...

>

> Peggy , Diagnosed 6/04 IPF.

> 66 years old. Married 40 years. 3 children, 6 grandchildren.

> God Blessed.

>

>

> #1 I had just moved to another city and went to see a primary doc

> for the first time.

> Just a get acquainted visit. She looked at my fingers and said " You

> have heart problems "

> They were bluish. and a little clubbed. I had had to stop wearing

> acrylic nails a year before

> because they would pop off. Little did I know.

> She scheduled me for a HRCT the next afternoon. The tech told me to

> wait on the report and take it right to my Doc. Well on top of the

> report said STAT. I knew that couldn't be good so from there she sent

> me to a pulmonary Doc. here in Ocala.

He

> says -within two min- you have fibrosis and will have a lung biopsy

> and will wake up from surgery with

> two tubes coming from your back and at that point I said " NO I

won't.

> My daughter was with me and we left shortly there after. He didn't

> tell me anything

> about the disease or that it was terminal. I never went back. To

> make a long story short. I wound up at Shands at UF. after three or

> four months

> I went on line and looked it up. And read I was terminal. I then

> found the Pulmonary fibrosis foundation and joined the support group.

> They are my life line. MY Air Family.

>

> #2 & 3 Very surprised and stunned. I re-read everything I could find

> on line. On the way to my next appointment at Shands I just ask my

> daughter how long she had known this disease was terminal. She said

> from the first visit. She didn't know how to tell me. We cried and

> talked and prayed the hour long trip to Shands that day.

> She and my husband had talked about it but were to stunned to talk

> about it. The first thing I told her was " God has a plan and I

want

> his will to be done "

> I told my husband the same thing that evening. I did pray a lot for

> strength and peace with all this. I did have peace beyond. I told my

> family I did not want this home to become a place of mourning and

dread.

>

> #4 My friends and family all cried within two minutes and I wound up

> holding them, consoling them and praying for strength for them. God

> was so good to me through the news breaking part.

>

> #5 I think they all spread the word very quickly. I told them all

> not to fear I am not going anywhere

> until my time comes. And I didn't think it was soon.

>

> #6 My surprises all came 6 months or so after diagnosis. I didn't see

> friends and some family members

> for a few months at a time. That was heart breaking.

>

> #7 I am treated totally different. It swings to not looking at me or

> to much sympathy. It is very hard to deal with at times. Things have

> gotten better over time.

>

> #8 I was put on 60 mg. of prednisone because of an infection and

> gained 70 pounds in 8 weeks. That was almost as life changing as

> having this disease. Craving sweets, shaking, aching joints, NO

> sleep, shaking some more. Grew hair on my face. Face blew up like a

> balloon. I looked like a freak. I went up from a 14 to a 20 and had

> nothing that fit. I cried about my closet full of clothes I had

> bought just before we moved.

>

>

> #9 No I didn't try any other treatments. There is not a treatment for

> IPF.

>

> #10 My whole world crashed. We had just moved from our family home

> of 40 years. We had planned a retirement here in the Ocala National

> Forest. Moved into a new home and have

yet to get to finnish

> decorating and doing things I would love to do. They seem unimportant

> now. But at times I look around and feel like I have been robbed.

> cheated and Oh so bruised.

> When I look at my sweet wonderful husband and think of how he will

> get along after I am gone. It

> breaks my heart. He has been in training--cooking, laundry, cleaning.

> I am not afraid of death but this dying part is really rough.

> I wish there was a way to explain how hard it is to NOT be able to

> breath or yawn.. take a deep breath.

>

> #11 Oh I do look at life much differently. . I am more conscious of my

> spiritual life than before.

> I can now see Gods greatness in things that I took for granted most

> of my life. I do not for the life of me know how others make it

> without faith. Life is GOOD.

>

> #12 The best advise I can give is don't panic, KNOW you are not going

> to die tomorrow. You still have a life to live. You do not have an

> expiration date stamped on your body.. LIVE.

>

>

>

> 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. "

>

>

> 

>