Re: Kathie re: Redondo Beach

[Guest guest]

Kerry I spent a couple of weeks there last year. I loved it, it had a

" community " or almost

" small town " feeling while having everything a person could want so close. At

least for me

there was the beach, movies, beach, shopping, beach, groceries and oh! Did I

mention the

beach. Maybe not your 20th but for sure the 25th and many more thereafter.

Kathie WA

nsip '96

> > > > > > >

> > > > > > > Gwynnie....I prefer 'end stage' to 'terminal' as a

> reference

> > > > point too! I like 'late stage'

> > > > > > even better....it DOES help explain where we are to

> those who

> > > > want/need to know.

> > > > > Yeah.

> > > > > > From now on I'll use " late stage " if I need a

> description.

> > > > > > > Yes Gwynnie, you have proven one can be in late stage

> > > > progression for a long while.

> > > > > > > I agree, we do grieve our losses.

> > > > > > > I hope this post finds your O2 closer to being met! How

> > > > frustrating!!

> > > > > > > Love to you too friend.

> > > > > > >

> > > > > > >

> > > > > > > Mama-Sher, age 69. IPF 3-06, OR.

> > > > > > > Don't fret about tomorrow, God is already there!

> > > > > > >

> > > > > > > continuous air flow;

> quality of life

> > > > > > >

> > > > > > >

> > > > > > > Kerry,

> > > > > > > I can completely identify with having a hard time

> > > > > > > imagining taking a deep breath. It's been so many

> > > > > > > years. Another thing I do remember but miss

> > > > > > > terribly is blessed silence - the kind I knew before

> > > > > > > having a high flow hose up the nose. aahhhhh.

> > > > > > > Thank you for the hummingbird pics.They're simply

> > > > > > > amazing creatures. At my other house, they used to

> > > > > > > love my hybiscus blooms.

> > > > > > >

> > > > > > > Geeta and Newbies,

> > > > > > > If you're on pulse and still have the feeling that

> you're

> > > > > > > having to pull a little too hard for a good breath, you

> > > > > > > need either a higher flow pulse or it's time to go to

> > > > > > > continuous. It creeps up on you, so watch your sats

> > > > > > > and how you feel (and don't wait for your doctor to

> > > > > > > tell you when it's time, although of course talk to

> your

> > > > > > > doctor). If pulse isn't adequate for you any more,

> you'll

> > > > > > > show it and feel it. Probably some people can get by

> > > > > > > with continuous for exertion and pulse at rest. I got

> > > > > > > a portable tank that had both before I needed

> > > > > > > continuous all the time, because I knew that was

> > > > > > > coming. If you need continuous, don't try to make

> > > > > > > do with pulse, because it hurts your body. Once you

> > > > > > > leave pulse, you leave it permanently. My portables

> > > > > > > only have continuous now that I'm on a very high

> > > > > > > flow.

> > > > > > >

> > > > > > > Mama Sher,

> > > > > > > I'm right there with you about being up front, direct,

> > > > > > > forthright, etc. It isn't for everyone. When I got sick

> > > > > > > I was told I was in the mild to moderate stage of IPF.

> > > > > > > My doctors never used the term " end stage " or any

> > > > > > > other term until I asked them. When I'm asked, I

> > > > > > > always say I have a serious illness that's chronic

> > > > > > > and progressive.

> > > > > > > I'm not really bothered by the term end stage, because

> > > > > > > I refuse to be defined by the disease at any stage. In

> > > > > > > some ways knowing the term helps me to accept my

> > > > > > > limitations - there's a REASON why I can't do certain

> > > > > > > things anymore. I don't even call this MY disease...

> it's

> > > > > > > a disease I happen to have.

> > > > > > > I actually prefer end stage to terminal, because in

> truth

> > > > > > > our disease is still terminal, and can begin to

> progress

> > > > > > > quickly, even in the earliest stages (which is one of

> the

> > > > > > > first things you read if you do any research, although

> I

> > > > > > > think many people read right past that part).

> Fortunately,

> > > > > > > I have already proven that you can be in late stage for

> > > > > > > a long time - forget the 6-month or whatever time

> > > > > > > frame that some people equate to it - and I'm still

> > > > > > > loving the word " stable. " Unless you saw me on a

> > > > > > > stay-in-bed day, you wouldn't define me by my illness

> > > > > > > either.

> > > > > > > My quality of life has taken some dips, and I've

> grieved

> > > > > > > the losses. My activities have been curtailed, but so

> far

> > > > > > > I'm still able to ensure that I will have quality of

> life

> > > > > > > in ways that are appropriate and meaningful to me. I

> > > > > > > know you live that way already. Guess I'm in a pretty

> > > > > > > pensive mood, but I had a good day. Love to you.

> > > > > > >

> > > > > > > Hugs and blessings,

> > > > > > > Gwynne 56 IPF 7/04 listed for transplant 3/07 and

> > > > > > > 2/08 Texas

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Kerry I spent a couple of weeks there last year. I loved it, it had a

" community " or almost

" small town " feeling while having everything a person could want so close. At

least for me

there was the beach, movies, beach, shopping, beach, groceries and oh! Did I

mention the

beach. Maybe not your 20th but for sure the 25th and many more thereafter.

Kathie WA

nsip '96

> > > > > > >

> > > > > > > Gwynnie....I prefer 'end stage' to 'terminal' as a

> reference

> > > > point too! I like 'late stage'

> > > > > > even better....it DOES help explain where we are to

> those who

> > > > want/need to know.

> > > > > Yeah.

> > > > > > From now on I'll use " late stage " if I need a

> description.

> > > > > > > Yes Gwynnie, you have proven one can be in late stage

> > > > progression for a long while.

> > > > > > > I agree, we do grieve our losses.

> > > > > > > I hope this post finds your O2 closer to being met! How

> > > > frustrating!!

> > > > > > > Love to you too friend.

> > > > > > >

> > > > > > >

> > > > > > > Mama-Sher, age 69. IPF 3-06, OR.

> > > > > > > Don't fret about tomorrow, God is already there!

> > > > > > >

> > > > > > > continuous air flow;

> quality of life

> > > > > > >

> > > > > > >

> > > > > > > Kerry,

> > > > > > > I can completely identify with having a hard time

> > > > > > > imagining taking a deep breath. It's been so many

> > > > > > > years. Another thing I do remember but miss

> > > > > > > terribly is blessed silence - the kind I knew before

> > > > > > > having a high flow hose up the nose. aahhhhh.

> > > > > > > Thank you for the hummingbird pics.They're simply

> > > > > > > amazing creatures. At my other house, they used to

> > > > > > > love my hybiscus blooms.

> > > > > > >

> > > > > > > Geeta and Newbies,

> > > > > > > If you're on pulse and still have the feeling that

> you're

> > > > > > > having to pull a little too hard for a good breath, you

> > > > > > > need either a higher flow pulse or it's time to go to

> > > > > > > continuous. It creeps up on you, so watch your sats

> > > > > > > and how you feel (and don't wait for your doctor to

> > > > > > > tell you when it's time, although of course talk to

> your

> > > > > > > doctor). If pulse isn't adequate for you any more,

> you'll

> > > > > > > show it and feel it. Probably some people can get by

> > > > > > > with continuous for exertion and pulse at rest. I got

> > > > > > > a portable tank that had both before I needed

> > > > > > > continuous all the time, because I knew that was

> > > > > > > coming. If you need continuous, don't try to make

> > > > > > > do with pulse, because it hurts your body. Once you

> > > > > > > leave pulse, you leave it permanently. My portables

> > > > > > > only have continuous now that I'm on a very high

> > > > > > > flow.

> > > > > > >

> > > > > > > Mama Sher,

> > > > > > > I'm right there with you about being up front, direct,

> > > > > > > forthright, etc. It isn't for everyone. When I got sick

> > > > > > > I was told I was in the mild to moderate stage of IPF.

> > > > > > > My doctors never used the term " end stage " or any

> > > > > > > other term until I asked them. When I'm asked, I

> > > > > > > always say I have a serious illness that's chronic

> > > > > > > and progressive.

> > > > > > > I'm not really bothered by the term end stage, because

> > > > > > > I refuse to be defined by the disease at any stage. In

> > > > > > > some ways knowing the term helps me to accept my

> > > > > > > limitations - there's a REASON why I can't do certain

> > > > > > > things anymore. I don't even call this MY disease...

> it's

> > > > > > > a disease I happen to have.

> > > > > > > I actually prefer end stage to terminal, because in

> truth

> > > > > > > our disease is still terminal, and can begin to

> progress

> > > > > > > quickly, even in the earliest stages (which is one of

> the

> > > > > > > first things you read if you do any research, although

> I

> > > > > > > think many people read right past that part).

> Fortunately,

> > > > > > > I have already proven that you can be in late stage for

> > > > > > > a long time - forget the 6-month or whatever time

> > > > > > > frame that some people equate to it - and I'm still

> > > > > > > loving the word " stable. " Unless you saw me on a

> > > > > > > stay-in-bed day, you wouldn't define me by my illness

> > > > > > > either.

> > > > > > > My quality of life has taken some dips, and I've

> grieved

> > > > > > > the losses. My activities have been curtailed, but so

> far

> > > > > > > I'm still able to ensure that I will have quality of

> life

> > > > > > > in ways that are appropriate and meaningful to me. I

> > > > > > > know you live that way already. Guess I'm in a pretty

> > > > > > > pensive mood, but I had a good day. Love to you.

> > > > > > >

> > > > > > > Hugs and blessings,

> > > > > > > Gwynne 56 IPF 7/04 listed for transplant 3/07 and

> > > > > > > 2/08 Texas

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Kerry...yes, I did see your post under Kerry's previously.

I take it you personally will not go on the vent. I dread that too, if it ever should come up for me.

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

continuous air flow; quality of life> > > > > >> > > > > >> > > > > > Kerry,> > > > > > I can completely identify with having a hard time> > > > > > imagining taking a deep breath. It's been so many> > > > > > years. Another thing I do remember but miss> > > > > > terribly is blessed silence - the kind I knew before> > > > > > having a high flow hose up the nose. aahhhhh.> > > > > > Thank you for the hummingbird pics.They're simply> > > > > > amazing creatures. At my other house, they used to> > > > > > love my hybiscus blooms.> > > > > >> > > > > > Geeta and Newbies,> > > > > > If you're on pulse and still have the feeling that you're> > > > > > having to pull a little too hard for a good breath, you> > > > > > need either a higher flow pulse or it's time to go to> > > > > > continuous. It creeps up on you, so watch your sats> > > > > > and how you feel (and don't wait for your doctor to> > > > > > tell you when it's time, although of course talk to your> > > > > > doctor). If pulse isn't adequate for you any more, you'll> > > > > > show it and feel it. Probably some people can get by> > > > > > with continuous for exertion and pulse at rest. I got> > > > > > a portable tank that had both before I needed> > > > > > continuous all the time, because I knew that was> > > > > > coming. If you need continuous, don't try to make> > > > > > do with pulse, because it hurts your body. Once you> > > > > > leave pulse, you leave it permanently. My portables> > > > > > only have continuous now that I'm on a very high> > > > > > flow.> > > > > >> > > > > > Mama Sher,> > > > > > I'm right there with you about being up front, direct,> > > > > > forthright, etc. It isn't for everyone. When I got sick> > > > > > I was told I was in the mild to moderate stage of IPF.> > > > > > My doctors never used the term "end stage" or any> > > > > > other term until I asked them. When I'm asked, I> > > > > > always say I have a serious illness that's chronic> > > > > > and progressive.> > > > > > I'm not really bothered by the term end stage, because> > > > > > I refuse to be defined by the disease at any stage. In> > > > > > some ways knowing the term helps me to accept my> > > > > > limitations - there's a REASON why I can't do certain> > > > > > things anymore. I don't even call this MY disease... it's> > > > > > a disease I happen to have.> > > > > > I actually prefer end stage to terminal, because in truth> > > > > > our disease is still terminal, and can begin to progress> > > > > > quickly, even in the earliest stages (which is one of the> > > > > > first things you read if you do any research, although I> > > > > > think many people read right past that part). Fortunately,> > > > > > I have already proven that you can be in late stage for> > > > > > a long time - forget the 6-month or whatever time> > > > > > frame that some people equate to it - and I'm still> > > > > > loving the word "stable." Unless you saw me on a> > > > > > stay-in-bed day, you wouldn't define me by my illness> > > > > > either.> > > > > > My quality of life has taken some dips, and I've grieved> > > > > > the losses. My activities have been curtailed, but so far> > > > > > I'm still able to ensure that I will have quality of life> > > > > > in ways that are appropriate and meaningful to me. I> > > > > > know you live that way already. Guess I'm in a pretty> > > > > > pensive mood, but I had a good day. Love to you.> > > > > >> > > > > > Hugs and blessings,> > > > > > Gwynne 56 IPF 7/04 listed for transplant 3/07 and> > > > > > 2/08 Texas> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

Kerry...yes, I did see your post under Kerry's previously.

I take it you personally will not go on the vent. I dread that too, if it ever should come up for me.

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

continuous air flow; quality of life> > > > > >> > > > > >> > > > > > Kerry,> > > > > > I can completely identify with having a hard time> > > > > > imagining taking a deep breath. It's been so many> > > > > > years. Another thing I do remember but miss> > > > > > terribly is blessed silence - the kind I knew before> > > > > > having a high flow hose up the nose. aahhhhh.> > > > > > Thank you for the hummingbird pics.They're simply> > > > > > amazing creatures. At my other house, they used to> > > > > > love my hybiscus blooms.> > > > > >> > > > > > Geeta and Newbies,> > > > > > If you're on pulse and still have the feeling that you're> > > > > > having to pull a little too hard for a good breath, you> > > > > > need either a higher flow pulse or it's time to go to> > > > > > continuous. It creeps up on you, so watch your sats> > > > > > and how you feel (and don't wait for your doctor to> > > > > > tell you when it's time, although of course talk to your> > > > > > doctor). If pulse isn't adequate for you any more, you'll> > > > > > show it and feel it. Probably some people can get by> > > > > > with continuous for exertion and pulse at rest. I got> > > > > > a portable tank that had both before I needed> > > > > > continuous all the time, because I knew that was> > > > > > coming. If you need continuous, don't try to make> > > > > > do with pulse, because it hurts your body. Once you> > > > > > leave pulse, you leave it permanently. My portables> > > > > > only have continuous now that I'm on a very high> > > > > > flow.> > > > > >> > > > > > Mama Sher,> > > > > > I'm right there with you about being up front, direct,> > > > > > forthright, etc. It isn't for everyone. When I got sick> > > > > > I was told I was in the mild to moderate stage of IPF.> > > > > > My doctors never used the term "end stage" or any> > > > > > other term until I asked them. When I'm asked, I> > > > > > always say I have a serious illness that's chronic> > > > > > and progressive.> > > > > > I'm not really bothered by the term end stage, because> > > > > > I refuse to be defined by the disease at any stage. In> > > > > > some ways knowing the term helps me to accept my> > > > > > limitations - there's a REASON why I can't do certain> > > > > > things anymore. I don't even call this MY disease... it's> > > > > > a disease I happen to have.> > > > > > I actually prefer end stage to terminal, because in truth> > > > > > our disease is still terminal, and can begin to progress> > > > > > quickly, even in the earliest stages (which is one of the> > > > > > first things you read if you do any research, although I> > > > > > think many people read right past that part). Fortunately,> > > > > > I have already proven that you can be in late stage for> > > > > > a long time - forget the 6-month or whatever time> > > > > > frame that some people equate to it - and I'm still> > > > > > loving the word "stable." Unless you saw me on a> > > > > > stay-in-bed day, you wouldn't define me by my illness> > > > > > either.> > > > > > My quality of life has taken some dips, and I've grieved> > > > > > the losses. My activities have been curtailed, but so far> > > > > > I'm still able to ensure that I will have quality of life> > > > > > in ways that are appropriate and meaningful to me. I> > > > > > know you live that way already. Guess I'm in a pretty> > > > > > pensive mood, but I had a good day. Love to you.> > > > > >> > > > > > Hugs and blessings,> > > > > > Gwynne 56 IPF 7/04 listed for transplant 3/07 and> > > > > > 2/08 Texas> > > > > >> > > > >> > > >> > >> >>