Re: Everyone

[Guest guest]

Sandie... I've been watching for a post from you and wondering how you are doing.

I've been doing more lurking than posting too. I do like knowing how everyone is.

You must be so weary, continuing to deal with "your stuff". You're doing all you can and that's good enough!

I so wish there were more answers for you though.

A big hug today and thanks for asking about me.

Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there!

Everyone

Hi everyone I come and go and just read and not respond. I have been around well last week I spent a few days in the hospital for some heart related testing but other then that I have been around. Been sick like normal but pushing on; I have been busy with working my two jobs and in college full time then add the normal day to day stuff I just don't have a lot of time left over. Which is good because for me I need to stay busy and focused otherwise things can consume me and right now I would rather push forward then let sickness take over. No I don't know what I have and I don't have the energy to keep going to doctors, to much time, effort, money and energy to waste on them so I just will deal with the sicknesses as they come and hope for the best. Its all I can do at this time. Zena – I haven't forgotten to mail you some things just haven't made it to the post office but I will! I haven't seen your post yet on how things went at the hospital and I have looked so I can only say I hope they went well! I did see the part about the bugs on your 02 backpack, reminds me of your boots, so awesome of you!Gwynne – You are always in my thoughts and prayers and I pray that the call will come ASAP.Joyce – I haven't seen the post on her yet accept some new medication and stuff so I really hope she is doing better, I hope your stable and I sure hope they got you a soft, squishy mattress to sleep on!Brett- My HEART literally sank and the tears ran down my face! Why on earth would a god like ours do that to a family! I am glad that there is 3 of you to face the world together and that you are so strong for your brothers! I can say that I feel for and can completely understand how he feels and see exactly how he is dealing with it. Maybe some day he will change his mind I hope that it is sooner then later. In your post you said Corey went to the U of M, is the University of Minnesota, or Michigan or where exactly? I thought you lived in California or somewhere like that. Sorry I could be confused. See as I right this tears are running down my face, my deepest prayers and thoughts are with you and your brothers through this time and I will always think of the strength that you have! May – I am here just not responding is all! Tammy – I hope you stop smoking again, for your own sake if you don't take charge of yourself then no one else will, one step forward at a time, I know you can do it, I have faith in you, so just set another date and move forward! Tina – I haven't read much on you lately so I hope all is well with you! You are such a young person and I truly admire your self strength! Keep on moving forward! Babs- Gosh the wolf story and the hippie that was a good one, I can always get a good laugh out of you; your stories are always great and lighten the mood for me. I am sorry about he knees and I hope you get them new ones sooner then later! lou – how is the puppy, she is just darling! Bruce – Glad you got all your questions answered and the new doc is a good one. Its nice to have that. – I miss your stories and I agree with who ever said it you could make millions for the visitors bureau! Sher – How are things going? I hope well for you.Peggy, Leanne, beth, Kathie, , Jim, Wally, and anyone else I may have missed, I didn't forget just a lapse in brain activity this morning, must be all that Algebra I had to do last night completely clueless when it comes to that stuff, YUCK. Either way you're all in my thoughts and prayers each and every day.Take care of yourselves!Sandie

[Guest guest]

Hi Sandie

I do know what you mean about taking the illnesses as they come. Sometimes we can have far too much time to think about things. I really hope you get some answers soon.

Don't panic about getting stuff in the post to me, I'm the worlds worst. Really. I only put our neices christmas pressie in the post on monday Well we didn't know for sure that we weren't going to see them over the holidays until the holidays were over!

I had less tests than I anticipated, which was due to me having had quite a few of them in November. I'd also had my full lung function done only the week before, so they were still valid too. I got to see my lungs! Well a CT scan anyway, which was interesting. My right lung is completely scarred up, there is some normal tissue in the right lung, but the normal tissue accounts for just 27% of my entire lungs. Unfortunately the normal tissue is surrounded by active disease.

Love Ze xxx>> Hi everyone I come and go and just read and not respond. I have been > around well last week I spent a few days in the hospital for some > heart related testing but other then that I have been around. Been > sick like normal but pushing on; I have been busy with working my two > jobs and in college full time then add the normal day to day stuff I > just don't have a lot of time left over. Which is good because for > me I need to stay busy and focused otherwise things can consume me > and right now I would rather push forward then let sickness take > over. No I don't know what I have and I don't have the energy to > keep going to doctors, to much time, effort, money and energy to > waste on them so I just will deal with the sicknesses as they come > and hope for the best. Its all I can do at this time. > > Zena – I haven't forgotten to mail you some things just haven't made > it to the post office but I will! I haven't seen your post yet on how > things went at the hospital and I have looked so I can only say I > hope they went well! I did see the part about the bugs on your 02 > backpack, reminds me of your boots, so awesome of you!> > Gwynne – You are always in my thoughts and prayers and I pray that > the call will come ASAP.> > Joyce – I haven't seen the post on her yet accept some new medication > and stuff so I really hope she is doing better, I hope your stable > and I sure hope they got you a soft, squishy mattress to sleep on!> > Brett- My HEART literally sank and the tears ran down my face! Why > on earth would a god like ours do that to a family! I am glad that > there is 3 of you to face the world together and that you are so > strong for your brothers! I can say that I feel for and can > completely understand how he feels and see exactly how he is dealing > with it. Maybe some day he will change his mind I hope that it is > sooner then later. In your post you said Corey went to the U of M, > is the University of Minnesota, or Michigan or where exactly? I > thought you lived in California or somewhere like that. Sorry I could > be confused. See as I right this tears are running down my face, my > deepest prayers and thoughts are with you and your brothers through > this time and I will always think of the strength that you have! > > > May – I am here just not responding is all! > > Tammy – I hope you stop smoking again, for your own sake if you don't > take charge of yourself then no one else will, one step forward at a > time, I know you can do it, I have faith in you, so just set another > date and move forward! > > > Tina – I haven't read much on you lately so I hope all is well with > you! You are such a young person and I truly admire your self > strength! Keep on moving forward! > > Babs- Gosh the wolf story and the hippie that was a good one, I can > always get a good laugh out of you; your stories are always great and > lighten the mood for me. I am sorry about he knees and I hope you > get them new ones sooner then later! > > lou – how is the puppy, she is just darling! > > Bruce – Glad you got all your questions answered and the new doc is a > good one. Its nice to have that.> > – I miss your stories and I agree with who ever said it you > could make millions for the visitors bureau! > > Sher – How are things going? I hope well for you.> > Peggy, Leanne, beth, Kathie, , Jim, Wally, and anyone else > I may have missed, I didn't forget just a lapse in brain activity > this morning, must be all that Algebra I had to do last night > completely clueless when it comes to that stuff, YUCK. Either way > you're all in my thoughts and prayers each and every day.> > > Take care of yourselves!> > Sandie>

[Guest guest]

Sandie, good to hear from you again, I'd tell you to stay strong, but

it sounds like you are doing that and then some. I've been dealing

with PF for a long time and I know that I have periods when I just

say " no " . No to being sick, no to seeing doctors, no to PF. It

isn't easy when you are wearing the " nose hose " but I say " yes " to

denial. lol

Kathie WA NSIP'96, PH 03, bronchiectasis 05

>

> Hi everyone I come and go and just read and not respond. I have

been

> around well last week I spent a few days in the hospital for some

> heart related testing but other then that I have been around. Been

> sick like normal but pushing on; I have been busy with working my

two

> jobs and in college full time then add the normal day to day stuff

I

> just don't have a lot of time left over. Which is good because for

> me I need to stay busy and focused otherwise things can consume me

> and right now I would rather push forward then let sickness take

> over. No I don't know what I have and I don't have the energy to

> keep going to doctors, to much time, effort, money and energy to

> waste on them so I just will deal with the sicknesses as they come

> and hope for the best. Its all I can do at this time.

>

> Zena – I haven't forgotten to mail you some things just haven't

made

> it to the post office but I will! I haven't seen your post yet on

how

> things went at the hospital and I have looked so I can only say I

> hope they went well! I did see the part about the bugs on your 02

> backpack, reminds me of your boots, so awesome of you!

>

> Gwynne – You are always in my thoughts and prayers and I pray that

> the call will come ASAP.

>

> Joyce – I haven't seen the post on her yet accept some new

medication

> and stuff so I really hope she is doing better, I hope your stable

> and I sure hope they got you a soft, squishy mattress to sleep on!

>

> Brett- My HEART literally sank and the tears ran down my face! Why

> on earth would a god like ours do that to a family! I am glad that

> there is 3 of you to face the world together and that you are so

> strong for your brothers! I can say that I feel for and can

> completely understand how he feels and see exactly how he is

dealing

> with it. Maybe some day he will change his mind I hope that it is

> sooner then later. In your post you said Corey went to the U of M,

> is the University of Minnesota, or Michigan or where exactly? I

> thought you lived in California or somewhere like that. Sorry I

could

> be confused. See as I right this tears are running down my face,

my

> deepest prayers and thoughts are with you and your brothers through

> this time and I will always think of the strength that you have!

>

>

> May – I am here just not responding is all!

>

> Tammy – I hope you stop smoking again, for your own sake if you

don't

> take charge of yourself then no one else will, one step forward at

a

> time, I know you can do it, I have faith in you, so just set

another

> date and move forward!

>

>

> Tina – I haven't read much on you lately so I hope all is well with

> you! You are such a young person and I truly admire your self

> strength! Keep on moving forward!

>

> Babs- Gosh the wolf story and the hippie that was a good one, I can

> always get a good laugh out of you; your stories are always great

and

> lighten the mood for me. I am sorry about he knees and I hope you

> get them new ones sooner then later!

>

> lou – how is the puppy, she is just darling!

>

> Bruce – Glad you got all your questions answered and the new doc is

a

> good one. Its nice to have that.

>

> – I miss your stories and I agree with who ever said it you

> could make millions for the visitors bureau!

>

> Sher – How are things going? I hope well for you.

>

> Peggy, Leanne, beth, Kathie, , Jim, Wally, and anyone

else

> I may have missed, I didn't forget just a lapse in brain activity

> this morning, must be all that Algebra I had to do last night

> completely clueless when it comes to that stuff, YUCK. Either way

> you're all in my thoughts and prayers each and every day.

>

>

> Take care of yourselves!

>

> Sandie

>

[Guest guest]

To pray is divine. To hope is human. I also read more than I respond being relatively new. But I watch and learn about keep on trucking because through Miracles there may be things coming that can help some or prayerfully all of us. I just seen on the news they other night about Generative tissue growth by using our own cells. enstein is alive and well. Please keep the faith and never ever give up. We owe this to our selves and our creator to strive and give hope to others as so many of you do. Sometimes I marvel at the strength of this group and know that I have found the right place at this point in my disease.

Boyne, Ca. COPD/ IPF/ Sleep Apnea

Re: Everyone

Sandie, good to hear from you again, I'd tell you to stay strong, but it sounds like you are doing that and then some. I've been dealing with PF for a long time and I know that I have periods when I just say "no". No to being sick, no to seeing doctors, no to PF. It isn't easy when you are wearing the "nose hose" but I say "yes" to denial. lolKathie WA NSIP'96, PH 03, bronchiectasis 05>> Hi everyone I come and go and just read and not respond. I have been > around well last week I spent a few days in the hospital for some > heart related testing but other then that I have been around. Been > sick like normal but pushing on; I have been busy with working my two > jobs and in college

full time then add the normal day to day stuff I > just don't have a lot of time left over. Which is good because for > me I need to stay busy and focused otherwise things can consume me > and right now I would rather push forward then let sickness take > over. No I don't know what I have and I don't have the energy to > keep going to doctors, to much time, effort, money and energy to > waste on them so I just will deal with the sicknesses as they come > and hope for the best. Its all I can do at this time. > > Zena – I haven't forgotten to mail you some things just haven't made > it to the post office but I will! I haven't seen your post yet on how > things went at the hospital and I have looked so I can only say I > hope they went well! I did see the part about the bugs on your 02 > backpack, reminds me of your boots, so awesome of you!>

> Gwynne – You are always in my thoughts and prayers and I pray that > the call will come ASAP.> > Joyce – I haven't seen the post on her yet accept some new medication > and stuff so I really hope she is doing better, I hope your stable > and I sure hope they got you a soft, squishy mattress to sleep on!> > Brett- My HEART literally sank and the tears ran down my face! Why > on earth would a god like ours do that to a family! I am glad that > there is 3 of you to face the world together and that you are so > strong for your brothers! I can say that I feel for and can > completely understand how he feels and see exactly how he is dealing > with it. Maybe some day he will change his mind I hope that it is > sooner then later. In your post you said Corey went to the U of M, > is the University of Minnesota, or Michigan or where

exactly? I > thought you lived in California or somewhere like that. Sorry I could > be confused. See as I right this tears are running down my face, my > deepest prayers and thoughts are with you and your brothers through > this time and I will always think of the strength that you have! > > > May – I am here just not responding is all! > > Tammy – I hope you stop smoking again, for your own sake if you don't > take charge of yourself then no one else will, one step forward at a > time, I know you can do it, I have faith in you, so just set another > date and move forward! > > > Tina – I haven't read much on you lately so I hope all is well with > you! You are such a young person and I truly admire your self > strength! Keep on moving forward! > > Babs- Gosh the wolf story and the hippie that was

a good one, I can > always get a good laugh out of you; your stories are always great and > lighten the mood for me. I am sorry about he knees and I hope you > get them new ones sooner then later! > > lou – how is the puppy, she is just darling! > > Bruce – Glad you got all your questions answered and the new doc is a > good one. Its nice to have that.> > – I miss your stories and I agree with who ever said it you > could make millions for the visitors bureau! > > Sher – How are things going? I hope well for you.> > Peggy, Leanne, beth, Kathie, , Jim, Wally, and anyone else > I may have missed, I didn't forget just a lapse in brain activity > this morning, must be all that Algebra I had to do last night > completely clueless when it comes to that stuff, YUCK. Either way > you're all

in my thoughts and prayers each and every day.> > > Take care of yourselves!> > Sandie>

[Guest guest]

... there are a lot of folks living in CA. It would be nice if you could gather. I think R is having a gathering in Sept.

I think we're all glad we're here. Post again.

Sher, 69, IPF 3-06, Sleep Apnea, OR.Don't fret about tomorrow, God is already there!

Re: Everyone

Sandie, good to hear from you again, I'd tell you to stay strong, but it sounds like you are doing that and then some. I've been dealing with PF for a long time and I know that I have periods when I just say "no". No to being sick, no to seeing doctors, no to PF. It isn't easy when you are wearing the "nose hose" but I say "yes" to denial. lolKathie WA NSIP'96, PH 03, bronchiectasis 05>> Hi everyone I come and go and just read and not respond. I have been > around well last week I spent a few days in the hospital for some > heart related testing but other then that I have been around. Been > sick like normal but pushing on; I have been busy with working my two > jobs and in college full time then add the normal day to day stuff I > just don't have a lot of time left over. Which is good because for > me I need to stay busy and focused otherwise things can consume me > and right now I would rather push forward then let sickness take > over. No I don't know what I have and I don't have the energy to > keep going to doctors, to much time, effort, money and energy to > waste on them so I just will deal with the sicknesses as they come > and hope for the best. Its all I can do at this time. > > Zena – I haven't forgotten to mail you some things just haven't made > it to the post office but I will! I haven't seen your post yet on how > things went at the hospital and I have looked so I can only say I > hope they went well! I did see the part about the bugs on your 02 > backpack, reminds me of your boots, so awesome of you!> > Gwynne – You are always in my thoughts and prayers and I pray that > the call will come ASAP.> > Joyce – I haven't seen the post on her yet accept some new medication > and stuff so I really hope she is doing better, I hope your stable > and I sure hope they got you a soft, squishy mattress to sleep on!> > Brett- My HEART literally sank and the tears ran down my face! Why > on earth would a god like ours do that to a family! I am glad that > there is 3 of you to face the world together and that you are so > strong for your brothers! I can say that I feel for and can > completely understand how he feels and see exactly how he is dealing > with it. Maybe some day he will change his mind I hope that it is > sooner then later. In your post you said Corey went to the U of M, > is the University of Minnesota, or Michigan or where exactly? I > thought you lived in California or somewhere like that. Sorry I could > be confused. See as I right this tears are running down my face, my > deepest prayers and thoughts are with you and your brothers through > this time and I will always think of the strength that you have! > > > May – I am here just not responding is all! > > Tammy – I hope you stop smoking again, for your own sake if you don't > take charge of yourself then no one else will, one step forward at a > time, I know you can do it, I have faith in you, so just set another > date and move forward! > > > Tina – I haven't read much on you lately so I hope all is well with > you! You are such a young person and I truly admire your self > strength! Keep on moving forward! > > Babs- Gosh the wolf story and the hippie that was a good one, I can > always get a good laugh out of you; your stories are always great and > lighten the mood for me. I am sorry about he knees and I hope you > get them new ones sooner then later! > > lou – how is the puppy, she is just darling! > > Bruce – Glad you got all your questions answered and the new doc is a > good one. Its nice to have that.> > – I miss your stories and I agree with who ever said it you > could make millions for the visitors bureau! > > Sher – How are things going? I hope well for you.> > Peggy, Leanne, beth, Kathie, , Jim, Wally, and anyone else > I may have missed, I didn't forget just a lapse in brain activity > this morning, must be all that Algebra I had to do last night > completely clueless when it comes to that stuff, YUCK. Either way > you're all in my thoughts and prayers each and every day.> > > Take care of yourselves!> > Sandie>

[Guest guest]

I just caught up with all the posts and everyone responded to Joyce

with such open and loving words. I sometimes wonder how I survived

11 years without this wonderful group of people.

Kathie

> > >

> > >

> > > Hi Boys and Girls,

> > >

> > > I have been up since 5 a.m. reading posts. Slept good in my

new

> > bed.

> > > It is the first night's sleep since I can't remember when.

There

> > was no

> > > sleep before the hospital and certainly none while there. What

a

> > zoo!

> > >

> > > I have sat here in my quiet house full of sleeping people with

> tears

> > > streaming down my face, reading of your concern for me. I am

> > > overwhelmed that you care so much. So many of us have never

met

> > and yet

> > > there is such rapport and a genuine heartfelt connection. To

> know

> > that

> > > all the while that I was so frightened and felt totally alone,

you

> > > people were sending up prayers all over this planet to our

Father

> > on my

> > > behalf..... And, that you cared enough to hold my name up to

him

> is

> > > AWESOME!

> > >

> > > I have been on the other side. When one of you have been

> undergoing

> > > biopsy or in the hospital and seriously ill, I have spent the

day

> > > praying and waiting for word. I never knew that it was

possible

> to

> > care

> > > that much for a virtual stranger. But, when I look at these

> posts

> > and

> > > realize that you really do care for me and about me, it just

> fills

> > my

> > > heart up.

> > >

> > > When I knew Kerry was coming to the hospital, I was more

excited

> > than

> > > when anyone else came. She was struggling to even talk and was

> so

> > out

> > > of breath. I knew that she had put forth great effort to get

> there

> > and

> > > to bring me just what I wanted. She walked way too far from

the

> > parking

> > > garage through that giant hospital complex just to see me.

But,

> > when I

> > > saw her face I knew that she knew. That is what I felt when I

> saw

> > you

> > > guys in Chattanooga. That is what I feel when I come

here.....I

> > know

> > > that you know. You can try explaining it to people and thier

> eyes

> > glaze

> > > over. You people need no explaining. I knew how Kerry felt

when

> > she

> > > walked in that door. When I was in Chicago last year and

Leanne

> > came to

> > > my daughter's house, traipsing through the snow in zero

> > > weather....walking up the stairs, not able to even get her

breath

> > to say

> > > hello....I knew.

> > >

> > > I am saying all this to say Thank You for being here, for

sharing

> > > yourself with me and with each other. I am urging those of you

> who

> > feel

> > > that you have nothing to say, say anything, just let us know

that

> > you

> > > are there. This group needs to survive when we are gone. So

many

> > > people, including me, have been helped through this group. We

> > learn so

> > > much from each other. We hold each other up through the bad

> > times. We

> > > are growing and we are talking and the word will get out. I

> would

> > love

> > > to believe there will come a day when not one person on this

> planet

> > will

> > > ask the stupid question, " what is pulmonary fibrosis? "

> > >

> > > I am still really weak and tired, this is an ordeal and I aim

to

> > survive

> > > it. I just need a little help from my friends and I KNOW that

I

> > have

> > > that here.

> > >

> > > I love you all, Joyce Dalton

> > >

> >

>

[Guest guest]

Kathie.

Everytime a new member joins I think of and worry about all those who

don't know of anywhere to go for support. Without forums, I would

have never even communicated with anyone else with PF and certainly

never met anyone with IPF like myself. I would feel so frustrated not

knowing what to expect and not knowing what seems so simple and we

take for granted. Plus, not having anyone who understands to share

with has to be so tough.

Just thinking of things I wouldn't know and the extremes are so

funny. While I wouldn't know much about transplant and especially the

facilities closest to me or how to live when I reach the stage of

requiring 8-10 liters, I wouldn't know so many simple things. I

couldn't have asked about Mattress Genie, which I love. I wouldn't

know about AYR, which really does help. I'd not have my current

oxygen supplier who is incredible. I would think my residual pain

from my VATS was unusual and I'd be more worried. I might not have

been so paranoid about connecting my humidifier part, although I was

quite much so of that to start with. I wouldn't know about the

glasses out there to run your cannula through or softhose.com, even

though I haven't tried either yet. I wouldn't know about puritan for

NAC. I would have been less comfortable recently doing the six days

of prednisone. I would have thought the fact that my oxygen drops

when I first sit strange and worried (of course soon comes right back

up). I wouldn't have known to get copies of everything and therefore

so much I wouldn't have known that I do since I got those copies. I

wouldn't have known I can skip all lines at Disneyworld. I wouldn't

have known how critical keeping my eye on my GERD is. Then most of

all just look at all the people I wouldn't have known.

But, I could make a list of all the things I have learned here than

enhance my life with PF and that list would be a mile long, with the

friends at the top. Then I see the survey and how few were ever told

anything about such a site by their doctors. Ok, that makes me pretty

angry. I'll guarantee if you had Parkinson's your Neurologist would

tell you about support groups. Pulmonologists seem way to satisfied

to diagnose you with a terminal disease and say thats it, when their

oath says they should be helping us learn how to live with the

disease. Thank God for this board.

> > > >

> > > >

> > > > Hi Boys and Girls,

> > > >

> > > > I have been up since 5 a.m. reading posts. Slept good in my

> new

> > > bed.

> > > > It is the first night's sleep since I can't remember when.

> There

> > > was no

> > > > sleep before the hospital and certainly none while there.

What

> a

> > > zoo!

> > > >

> > > > I have sat here in my quiet house full of sleeping people

with

> > tears

> > > > streaming down my face, reading of your concern for me. I am

> > > > overwhelmed that you care so much. So many of us have never

> met

> > > and yet

> > > > there is such rapport and a genuine heartfelt connection. To

> > know

> > > that

> > > > all the while that I was so frightened and felt totally

alone,

> you

> > > > people were sending up prayers all over this planet to our

> Father

> > > on my

> > > > behalf..... And, that you cared enough to hold my name up to

> him

> > is

> > > > AWESOME!

> > > >

> > > > I have been on the other side. When one of you have been

> > undergoing

> > > > biopsy or in the hospital and seriously ill, I have spent the

> day

> > > > praying and waiting for word. I never knew that it was

> possible

> > to

> > > care

> > > > that much for a virtual stranger. But, when I look at these

> > posts

> > > and

> > > > realize that you really do care for me and about me, it just

> > fills

> > > my

> > > > heart up.

> > > >

> > > > When I knew Kerry was coming to the hospital, I was more

> excited

> > > than

> > > > when anyone else came. She was struggling to even talk and

was

> > so

> > > out

> > > > of breath. I knew that she had put forth great effort to get

> > there

> > > and

> > > > to bring me just what I wanted. She walked way too far from

> the

> > > parking

> > > > garage through that giant hospital complex just to see me.

> But,

> > > when I

> > > > saw her face I knew that she knew. That is what I felt when

I

> > saw

> > > you

> > > > guys in Chattanooga. That is what I feel when I come

> here.....I

> > > know

> > > > that you know. You can try explaining it to people and thier

> > eyes

> > > glaze

> > > > over. You people need no explaining. I knew how Kerry felt

> when

> > > she

> > > > walked in that door. When I was in Chicago last year and

> Leanne

> > > came to

> > > > my daughter's house, traipsing through the snow in zero

> > > > weather....walking up the stairs, not able to even get her

> breath

> > > to say

> > > > hello....I knew.

> > > >

> > > > I am saying all this to say Thank You for being here, for

> sharing

> > > > yourself with me and with each other. I am urging those of

you

> > who

> > > feel

> > > > that you have nothing to say, say anything, just let us know

> that

> > > you

> > > > are there. This group needs to survive when we are gone. So

> many

> > > > people, including me, have been helped through this group.

We

> > > learn so

> > > > much from each other. We hold each other up through the bad

> > > times. We

> > > > are growing and we are talking and the word will get out. I

> > would

> > > love

> > > > to believe there will come a day when not one person on this

> > planet

> > > will

> > > > ask the stupid question, " what is pulmonary fibrosis? "

> > > >

> > > > I am still really weak and tired, this is an ordeal and I aim

> to

> > > survive

> > > > it. I just need a little help from my friends and I KNOW

that

> I

> > > have

> > > > that here.

> > > >

> > > > I love you all, Joyce Dalton

> > > >

> > >

> >

>

[Guest guest]

Bruce... new Dr. did put me on Pepcid for the GERD. I didn't think I 'needed it'... she explained the importance. Maybe it's no wonder I have felt so so lousy. I've been doing nothing about my disease. Last Dr. didn't prescribe anything 'to do'...new Dr. has me now on the Pepcid, O2, nighttime oximetry, did some testing and blood work and will do more on the 12th of March.

Sher, 69, IPF 3-06, Sleep Apnea, OR.Don't fret about tomorrow, God is already there!

Re: Everyone

Kathie. Everytime a new member joins I think of and worry about all those who don't know of anywhere to go for support. Without forums, I would have never even communicated with anyone else with PF and certainly never met anyone with IPF like myself. I would feel so frustrated not knowing what to expect and not knowing what seems so simple and we take for granted. Plus, not having anyone who understands to share with has to be so tough. Just thinking of things I wouldn't know and the extremes are so funny. While I wouldn't know much about transplant and especially the facilities closest to me or how to live when I reach the stage of requiring 8-10 liters, I wouldn't know so many simple things. I couldn't have asked about Mattress Genie, which I love. I wouldn't know about AYR, which really does help. I'd not have my current oxygen supplier who is incredible. I would think my residual pain from my VATS was unusual and I'd be more worried. I might not have been so paranoid about connecting my humidifier part, although I was quite much so of that to start with. I wouldn't know about the glasses out there to run your cannula through or softhose.com, even though I haven't tried either yet. I wouldn't know about puritan for NAC. I would have been less comfortable recently doing the six days of prednisone. I would have thought the fact that my oxygen drops when I first sit strange and worried (of course soon comes right back up). I wouldn't have known to get copies of everything and therefore so much I wouldn't have known that I do since I got those copies. I wouldn't have known I can skip all lines at Disneyworld. I wouldn't have known how critical keeping my eye on my GERD is. Then most of all just look at all the people I wouldn't have known.But, I could make a list of all the things I have learned here than enhance my life with PF and that list would be a mile long, with the friends at the top. Then I see the survey and how few were ever told anything about such a site by their doctors. Ok, that makes me pretty angry. I'll guarantee if you had Parkinson's your Neurologist would tell you about support groups. Pulmonologists seem way to satisfied to diagnose you with a terminal disease and say thats it, when their oath says they should be helping us learn how to live with the disease. Thank God for this board.> > > >> > > > > > > > Hi Boys and Girls,> > > > > > > > I have been up since 5 a.m. reading posts. Slept good in my > new > > > bed. > > > > It is the first night's sleep since I can't remember when. > There > > > was no> > > > sleep before the hospital and certainly none while there. What > a > > > zoo!> > > > > > > > I have sat here in my quiet house full of sleeping people with > > tears> > > > streaming down my face, reading of your concern for me. I am> > > > overwhelmed that you care so much. So many of us have never > met > > > and yet> > > > there is such rapport and a genuine heartfelt connection. To > > know > > > that> > > > all the while that I was so frightened and felt totally alone, > you> > > > people were sending up prayers all over this planet to our > Father > > > on my> > > > behalf..... And, that you cared enough to hold my name up to > him > > is> > > > AWESOME!> > > > > > > > I have been on the other side. When one of you have been > > undergoing> > > > biopsy or in the hospital and seriously ill, I have spent the > day> > > > praying and waiting for word. I never knew that it was > possible > > to > > > care> > > > that much for a virtual stranger. But, when I look at these > > posts > > > and> > > > realize that you really do care for me and about me, it just > > fills > > > my> > > > heart up.> > > > > > > > When I knew Kerry was coming to the hospital, I was more > excited > > > than> > > > when anyone else came. She was struggling to even talk and was > > so > > > out> > > > of breath. I knew that she had put forth great effort to get > > there > > > and> > > > to bring me just what I wanted. She walked way too far from > the > > > parking> > > > garage through that giant hospital complex just to see me. > But, > > > when I> > > > saw her face I knew that she knew. That is what I felt when I > > saw > > > you> > > > guys in Chattanooga. That is what I feel when I come > here.....I > > > know> > > > that you know. You can try explaining it to people and thier > > eyes > > > glaze> > > > over. You people need no explaining. I knew how Kerry felt > when > > > she> > > > walked in that door. When I was in Chicago last year and > Leanne > > > came to> > > > my daughter's house, traipsing through the snow in zero> > > > weather....walking up the stairs, not able to even get her > breath > > > to say> > > > hello....I knew.> > > > > > > > I am saying all this to say Thank You for being here, for > sharing> > > > yourself with me and with each other. I am urging those of you > > who > > > feel> > > > that you have nothing to say, say anything, just let us know > that > > > you> > > > are there. This group needs to survive when we are gone. So > many> > > > people, including me, have been helped through this group. We > > > learn so> > > > much from each other. We hold each other up through the bad > > > times. We> > > > are growing and we are talking and the word will get out. I > > would > > > love> > > > to believe there will come a day when not one person on this > > planet > > > will> > > > ask the stupid question, "what is pulmonary fibrosis?"> > > > > > > > I am still really weak and tired, this is an ordeal and I aim > to > > > survive> > > > it. I just need a little help from my friends and I KNOW that > I > > > have> > > > that here.> > > > > > > > I love you all, Joyce Dalton> > > >> > >> >>