Re: , for Don

[Guest guest]

Please let him know he isn't alone. We can't know exactly how he feels

but we all hate this horrible disease. Some of us aren't as bad as him,

some are worse. Some have had the same horrors with prednisone while

others haven't. I took a poll and 71% of those responding from here

suffered from depression. Some did before the disease, some did before

and it got worse, some didn't until the after the disease. I suspect of

those on prednisone the percentage would be even higher.

We all cry. We all feel sorry for ourselves. We all suffer from such an

unfair and undeserved disease. There isn't one person here who hasn't at

least for a fleeting moment wondered if it was worth battling or if they

were strong enough. Evel Kneival broke trillions of bones and did every

insane and daring thing known to man, but PF brought him to his knees

and ultimately led to his death. However, he also found strength to live

till the end and served on the Board of Pulmonary Fibrosis Foundation

while making public service announcements.

We all have searched and continue to search for answers. There are no

absolutes with this disease. What works for one doesn't for another. We

disagree on things. Doctors disagree. We struggle with decisions. If you

tell me you have most diseases, I can go look up and tell you what to

take to treat it and even cure it. No one can tell you how to treat this

one and there is no cure.

But, most of us still find we have lives to live. Oh, some days we may

not feel it. But, we find what gives our live value and quality and

pleasure. Life isn't as we imagined or dreamed it would be. But, we

follow others before us and find a way to make the most of it. I may

appear strong sometimes, but by myself I'm not. I'm fragile. I came here

and got strength in addition to that from my counselor. I have role

models here. I can name dozens of them. They give me courage. They don't

make me happy about the hand I've been dealt. But, they do help me learn

how to play the cards. Personally, I know far worse is to come for me.

However, I've seen how others have endured and thrived. And, most of

all, I know when I get there, I have a place to come where I can be

completely honest and get the support I need.

He's not the first person to say here (even indirectly) that they wish

they were dead or were ready for it to end. It's allowed. It's honest.

It's real. We cry when we read it but we also understand how one can

feel that way. Then we see the one who felt that way a few weeks ago but

now is smiling through her typed words again. We know that we probably

will not experience the miracle of a cure. But, we do get miracles of

good days and a little joy and some happiness along the way and we

appreciate those more than we ever imagined we could.

> > > > > > >

> > > > > > > Sher,

> > > > > > > I'm happy to hear the doctors have switched your

diagnosis.

> NSIP

> > > > > > is definitely preferable to IPF, the life expectancy is much

> longer

> > > > > > and as a bonus, it does not always progress. As a matter of

> fact,

> > > > > > Dr. on at Duke just told me last month that he's seen

> > > > patients

> > > > > > with NSIP who have been " stable for decades. " I mean I know

> that my

> > > > > > experience may be different but anything that gives us hope

is

> > > > > > helpful!

> > > > > > > Have they switched your dx based on the behavior of the

> > > > disease or

> > > > > > also on the ct scan results? NSIP is usually very

identifiable

> > > > by CT

> > > > > > scan. To identify the type of NSIP (fibrotic, cellular or

> mixed)

> > > > you

> > > > > > would need a biopsy. But at this point it probably doesn't

> > > > matter as

> > > > > > long as your stable. I understand why you wouldn't put

> yourself

> > > > > > through that. I don't regret my biopsy but I totally get why

> you've

> > > > > > chosen not to go down that road.

> > > > > > > In the meantime, celebrate stability!! Stable is my happy

> word!!

> > > > > > > Beth

> > > > > > > Age 48 Fibrotic NSIP 06/06

> > > > > > >

> > > > > > > Change everything. Love and Forgive

> > > > > > >

> > > > > >

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > > Caro

> > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP

01/08,

> > > > RHEUMATOID ARTHRITIS 03/08

> > > > Mississippi

> > > > ____________ _________ _________ _________ _________ __

> > > >

[Guest guest]

, you will find that you are stronger than you think you are, but allow yourself to not be strong all the time. It's ok, it's allowed. You're doing well by getting as much info as you can, which can make things less scary for both you and Don.

Keep well and have a massive ((((((((((hug))))))))))

Love Ze xxx> > > > > > > >> > > > > > > > Sher,> > > > > > > > I'm happy to hear the doctors have switched your> diagnosis.> > NSIP> > > > > > > is definitely preferable to IPF, the life expectancy is much> > longer> > > > > > > and as a bonus, it does not always progress. As a matter of> > fact,> > > > > > > Dr. on at Duke just told me last month that he's seen> > > > > patients> > > > > > > with NSIP who have been "stable for decades." I mean I know> > that my> > > > > > > experience may be different but anything that gives us hope> is> > > > > > > helpful!> > > > > > > > Have they switched your dx based on the behavior of the> > > > > disease or> > > > > > > also on the ct scan results? NSIP is usually very> identifiable> > > > > by CT> > > > > > > scan. To identify the type of NSIP (fibrotic, cellular or> > mixed)> > > > > you> > > > > > > would need a biopsy. But at this point it probably doesn't> > > > > matter as> > > > > > > long as your stable. I understand why you wouldn't put> > yourself> > > > > > > through that. I don't regret my biopsy but I totally get why> > you've> > > > > > > chosen not to go down that road.> > > > > > > > In the meantime, celebrate stability!! Stable is my happy> > word!!> > > > > > > > Beth> > > > > > > > Age 48 Fibrotic NSIP 06/06> > > > > > > >> > > > > > > > Change everything. Love and Forgive> > > > > > > >> > > > > > >> > > > > >> > > > >> > > > >> > > > >> > > > >> > > > > Caro> > > > > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP> 01/08,> > > > > RHEUMATOID ARTHRITIS 03/08> > > > > Mississippi> > > > > ____________ _________ _________ _________ _________ __> > > > >