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Peggy,

I'm not familiar with concentrators, so I can't speak

about them. I've always been on liquid. But whenever

my 02 needs have increased, it has happened rather

quickly. Maybe I will notice my sats dropping more

over the period of 3 weeks or so, and in retrospect

will realize that I've made a jump in the need for more

02. I've never stayed at any one liter flow for more

than 6 months since the first year.

At my flow, movement of any kind - for short distance,

long distance, upper body, lower body, coughing,

putting on a blouse or a pair of pants, bending, lifting,

carrying anything, talking, standing up suddenly - all

make my sats drop, no matter what I've got my 02 set

on. I definitely can't empty the trash, and I've got a stair

lift chair for the 7 stairs from my garage to my kitchen.

How low do your sats typically go when they drop? At

90, you might just need to slow down (some more).

I'm sorry you are so frustrated, and I can certainly

empathize with you. Seems like frustration is such a

huge part of our lives with this beast.

It would be awesome If you did come through this

neck of the woods when you go to San . It's

so great that Beth and Leanne are coming to

visit you - lucky duck!!!!!!!

Tina,

I'm so glad the new doctor seems like a keeper! Hang

on to him. It's a crime that we have to work so hard to

find qualified and caring physicians. It's horrifying to

think about the hair-raising experiences that you and

Babs and so many of us have had and continue to have

in hospitals or doctors' offices. The system is definitely

badly flawed.

I'm sorry you have reached the " severe " point, but you

have a wonderful attitude. Going to San alone

sounds like a perfect gift to give yourself at a time when

you really need it. There's nothing selfish about it. I'm so

glad you get to go.

Mama Sher,

Burnt out ILD? That sounds like something he made up

after taking a correspondence class. For sure your new

doc can do better than that, I'm betting.

Geeta,

Congratulations and best of wishes to your son and his

new bride-to-be. I'm sure you're very proud, and busy!

I hope you can post some photos of the wedding - we'd

love to see.

Hugs and blessings,

Gwynne 56 IPF 7/04 listed for transplant 3/07 Texas

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Gwynne, My saturation doesn't drop nearly like Joyce, and you. I don't think I could make it. The lowest I have dropped I think is 83. I felt like an elephant was sitting on me. I guess I am a wimp, even though I know I have a high pain tolerance I have a low 02 tolerance. Some days I just feel like a rag. Then I think of all y'all have been through and I am just amazed. I do have such HEROs to look up to and learn how to cope with this monster. I Thank everyone of you for your support and prayers.Love & Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up.

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Peggy,

I just walked back from my laundry room to my hospital room/office....we don't know what to call this room.....anyway a distance of about 20 feet and my 02 fell to 67. It is miserable. The doc told me that when it drops like that to sit and rest 30 minutes. How many 30 minutes are in a day???

The long acting nitroglycerin pills are keeping the pain down.

The high flow cannula and tubing are quieter. But, you won't like that cannula. I get so grumpy when I am trying to hear something and all I can hear is this gale force wind blowing up my nose. I use my mask at night sometimes and even during the day.

As soon, as these docs decide how they want to try and kill me....I want to get the Trans-tracheal done. This new doc is all for it. It would be so wonderful not to have this rubber hose wrapped all over my head. Aaaaargh!

I am going tomorrow for all day testing. I got the new HRCT report and it said Idiopathic. I have had so many different names put to this PF. Everytime I do an HRCT or some other scan at a hospital that does not have old records, they name it something else. In the end what does it matter. Sometimes I think if they just clumped all the PF diseases together and put one name to it....maybe it would make more of an impact on the medical world.

This report is the first one that said Pulmonary Hypertension. I had a hunch because of the plummeting 02. It said that both coronary arteries were enlarged.

I will know more on the 4th of Feb, when I see the Duke Doc again.

Peggy, I think you will have the Grumpies, real soon. I see them lurking in your posts. Keep smiling that great smile, they hate smiles.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Gwynne, My saturation doesn't drop nearly like Joyce, and you. > I don't think I could make it. The lowest I have dropped I think is > 83. I felt like an elephant was sitting on me. I guess I am a wimp, > even though I know I have a high pain tolerance I have a low 02 > tolerance. Some days I just feel like a rag. Then I think of all > y'all have been through and I am just amazed. I do have such HEROs to > look up to and learn how to cope with this monster. I Thank everyone > of you for your support and prayers.> > > > Love & Prayers, Peggy> ipf 6/04> > Worry looks around.> Sorry looks back,> Faith looks up.>

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Joyce

I tried to imagine the pain as I read your post. Of course, i can't.

I just can hope you've created a space to sit where as many of the

things you enjoy are as close as possible. I do often think of the

days when I'll be stuck primarily where I'm sitting right now and

what I can do to make it more bearable. But thats imagining, not

experiencing.

I wonder if more of us shouldn't be having the trans-tracheal and

earlier while we can better handle the procedure. I find an unfounded

prejudice against it here. But I think many have gotten at least some

relief from it. My first pulmonologist had the audactiy to call it a

woman's vanity thing. What horrible ignorance.

I know we all await your February 4 visit. Just remember always that

we do care and you can give us all the grumpies you want. You've

earned that right. I'm glad at least you can visit with us here and

know you're surrounded by a community of love.

> >

> > Gwynne, My saturation doesn't drop nearly like Joyce, and

you.

> > I don't think I could make it. The lowest I have dropped I think

is

> > 83. I felt like an elephant was sitting on me. I guess I am a

wimp,

> > even though I know I have a high pain tolerance I have a low 02

> > tolerance. Some days I just feel like a rag. Then I think of all

> > y'all have been through and I am just amazed. I do have such

HEROs to

> > look up to and learn how to cope with this monster. I Thank

everyone

> > of you for your support and prayers.

> >

> >

> >

> > Love & Prayers, Peggy

> > ipf 6/04

> >

> > Worry looks around.

> > Sorry looks back,

> > Faith looks up.

> >

>

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Peggy.,

Believe me, this is no Queen room. One of my daughters had this room. She used to say it was so small that she had to go out into the hall to change her mind!

The pain that I had was when my 02 would drop down into the 70's and below. It felt like a spiked steel band around my chest, just under my arms....then the pain would spread into my shoulders, neck and ears. Ending with a headache. Doc said it was Angina. The med helped it, but I still have vague pain. He told me to call my cardiologist, which I did, and got no return call. Nice.

One of my tests tomorrow is an echocardiagram. Might give some answers.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Oh Joyce, I am not going to have the grumpys. I will go hurt somebody > at the 02 company if I do. Ask I probably already have them. > Believe it or not this puppy keeps me sane.> I am going to be thinking of the perfect name for your Queen room. > Maybe we should run a contest.> > I do hope you have the Trans-tracheal done just to give you relief > from the hose up the nose. That is if that's what you want. I'm glad > the nitro is helping.> > I know this sounds stupid but exactly where is the pain? In your > chest? Lungs?> The only pain I have is when I lay down at night my chest hurt quite > a bit.> > I love you and do wish I could do something for you. I would be a > captain for you.> > > > > Love and Prayers, Peggy> ipf 6/04> > Worry looks around.> Sorry looks back,> Faith looks up.>

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I can assure you I thought of worse things than you are....lol

> > > >

> > > > Gwynne, My saturation doesn't drop nearly like Joyce,

and

> > you.

> > > > I don't think I could make it. The lowest I have dropped I

think

> > is

> > > > 83. I felt like an elephant was sitting on me. I guess I am a

> > wimp,

> > > > even though I know I have a high pain tolerance I have a low

02

> > > > tolerance. Some days I just feel like a rag. Then I think of

all

> > > > y'all have been through and I am just amazed. I do have such

> > HEROs to

> > > > look up to and learn how to cope with this monster. I Thank

> > everyone

> > > > of you for your support and prayers.

> > > >

> > > >

> > > >

> > > > Love & Prayers, Peggy

> > > > ipf 6/04

> > > >

> > > > Worry looks around.

> > > > Sorry looks back,

> > > > Faith looks up.

> > > >

> > >

> >

>

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Joyce:

Air?

I thought you were going for a fillup of gas through the nose...lol

> > > >

> > > > Gwynne, My saturation doesn't drop nearly like Joyce,

and

> > you.

> > > > I don't think I could make it. The lowest I have dropped I

think

> > is

> > > > 83. I felt like an elephant was sitting on me. I guess I am a

> > wimp,

> > > > even though I know I have a high pain tolerance I have a low

02

> > > > tolerance. Some days I just feel like a rag. Then I think of

all

> > > > y'all have been through and I am just amazed. I do have such

> > HEROs to

> > > > look up to and learn how to cope with this monster. I Thank

> > everyone

> > > > of you for your support and prayers.

> > > >

> > > >

> > > >

> > > > Love & Prayers, Peggy

> > > > ipf 6/04

> > > >

> > > > Worry looks around.

> > > > Sorry looks back,

> > > > Faith looks up.

> > > >

> > >

> >

>

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Thanks , I will. It has been awhile since I have had one. Not my favorite test. What are you taking for PH and is it working?

Hugs, Joyce> >> > Oh Joyce, I am not going to have the grumpys. I will go hurt somebody > > at the 02 company if I do. Ask I probably already have them. > > Believe it or not this puppy keeps me sane.> > I am going to be thinking of the perfect name for your Queen room. > > Maybe we should run a contest.> > > > I do hope you have the Trans-tracheal done just to give you relief > > from the hose up the nose. That is if that's what you want. I'm glad > > the nitro is helping.> > > > I know this sounds stupid but exactly where is the pain? In your > > chest? Lungs?> > The only pain I have is when I lay down at night my chest hurt quite > > a bit.> > > > I love you and do wish I could do something for you. I would be a > > captain for you.> > > > > > > > > > Love and Prayers, Peggy> > ipf 6/04> > > > Worry looks around.> > Sorry looks back,> > Faith looks up.> >> > > > > > > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59> > ---------------------------------> Never miss a thing. Make Yahoo your homepage.>

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Has Tracleer had any side effects for you? Has your insurance fought paying? Other than the numbers, can you feel the difference from taking it?

If this turns out to be PH, I actually diagnosed it myself. My pulmo said that since I was clear on my cath 18 months ago, he doubted it. I knew the symptoms matched....I am the one who asked to be checked....just in case. The Duke Doc agreed, so if it is there, it is my find.

That is why we need to be aware of all aspects of this disease and educate ourselves to recognize the red flags. Over the ten years that I have survived since biopsy, there were many times that I insisted that a particular test be done and was rarely wrong as to my own diagnosis. Wish I was paid well.

Later,

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong. > > >> > > Oh Joyce, I am not going to have the grumpys. I will go hurt somebody > > > at the 02 company if I do. Ask I probably already have them. > > > Believe it or not this puppy keeps me sane.> > > I am going to be thinking of the perfect name for your Queen room. > > > Maybe we should run a contest.> > > > > > I do hope you have the Trans-tracheal done just to give you relief > > > from the hose up the nose. That is if that's what you want. I'm glad > > > the nitro is helping.> > > > > > I know this sounds stupid but exactly where is the pain? In your > > > chest? Lungs?> > > The only pain I have is when I lay down at night my chest hurt quite > > > a bit.> > > > > > I love you and do wish I could do something for you. I would be a > > > captain for you.> > > > > > > > > > > > > > > Love and Prayers, Peggy> > > ipf 6/04> > > > > > Worry looks around.> > > Sorry looks back,> > > Faith looks up.> > >> > > > > > > > > > > > > > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59> > > > ---------------------------------> > Never miss a thing. Make Yahoo your homepage.> >> > > > > > > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59> > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>

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Joyce

They so don't get what you just said. We understand our bodies. I

don't know a person in the world who likes going to doctors and just

goes for kicks. When we tell a doctor something is wrong it probably

is.

I even had a psychiatrist include in her notes the term somatization.

Somatization disorder is a chronic condition in which there are

numerous physical complaints. These complaints can last for years,

and result in substantial impairment. The physical symptoms are

caused by psychological problems, and no underlying physical problem

can be identified. I got extremely angry and slammed the door and

left when she didn't think there were physical problems as I was

about to go to the doctors.

Well, never one time did I go that there wasn't a problem. My

counselor always believed there was something not being found. As my

new pulmonologist said, " well, it turns out she certainly was right. "

The funniest thing was when I applied for social security disability,

the psychologist reviewing saw the word in the notes that said

somatization. She said, how can she write that with the list of all

the things you have. The medical doctor reviewing was actually more

concerned than mine about some issues and not only included that but

encouraged me very strongly to go to UTSW for second opinions.

To this date I have never reported a problem and there not been one.

I know my body. I know when its right and when something different or

new is going on.

So does everyone on here. My Primary didn't believe me but one 6

minute walk and he sure did. When it was stomach or esophagus the

Upper GI's and Endoscopies always supported. The ear surgery

supported an ear problem. The colon resection supported a problem. My

confirmed neurological issues supported a problem. As it turns out I

was always underreporting, never over. For 18 months I said I just

couldn't get enough breath to get started back on a treadmill before

the three attacks and my complaints got me a 6 minute walk.

Listen to us. The last thing in the world we want is to go to the

doctor. The last thing is to have another issue. If we say something

is wrong, it is.

> > > >

> > > > Oh Joyce, I am not going to have the grumpys. I will go hurt

> somebody

> > > > at the 02 company if I do. Ask I probably already have

them.

> > > > Believe it or not this puppy keeps me sane.

> > > > I am going to be thinking of the perfect name for your Queen

room.

> > > > Maybe we should run a contest.

> > > >

> > > > I do hope you have the Trans-tracheal done just to give you

relief

> > > > from the hose up the nose. That is if that's what you want.

I'm

> glad

> > > > the nitro is helping.

> > > >

> > > > I know this sounds stupid but exactly where is the pain? In

your

> > > > chest? Lungs?

> > > > The only pain I have is when I lay down at night my chest hurt

> quite

> > > > a bit.

> > > >

> > > > I love you and do wish I could do something for you. I would

be a

> > > > captain for you.

> > > >

> > > >

> > > >

> > > >

> > > > Love and Prayers, Peggy

> > > > ipf 6/04

> > > >

> > > > Worry looks around.

> > > > Sorry looks back,

> > > > Faith looks up.

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06,

ILL

> yo 59

> > >

> > > ---------------------------------

> > > Never miss a thing. Make Yahoo your homepage.

> > >

> >

> >

> >

> >

> >

> >

> > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06,

ILL yo

> 59

> >

> > ---------------------------------

> > Be a better friend, newshound, and know-it-all with Yahoo!

Mobile. Try

> it now.

> >

>

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Joyce,

I am so sorry to hear about the progression of your illness. I, too,

have had many names for my dx. I think that NSIP was settled on just

because I have been fortunate to live so long with it. I think I

first heard PAH about 5 years ago and then started taking Tracleer.

It must be doing some good because the progression has been slow.

Two weeks ago I first heard the words bronchiectasis. Evidently

noted on CT in 2005. I missed seeing it and none of my docs

mentioned it even though that was the year I started getting one

infection after another and telling them I felt like I had chronic

bronchitis. Oh well! Like you I don't care what they call it. In

my case they can't fix it.

Enough about me, take care of yourself, do things that make you feel

good. You are very brave.

Kathie WA NSIP '96, PAH '03 Bronchiectasis '05

> >

> > Gwynne, My saturation doesn't drop nearly like Joyce, and

you.

> > I don't think I could make it. The lowest I have dropped I think

is

> > 83. I felt like an elephant was sitting on me. I guess I am a

wimp,

> > even though I know I have a high pain tolerance I have a low 02

> > tolerance. Some days I just feel like a rag. Then I think of all

> > y'all have been through and I am just amazed. I do have such

HEROs to

> > look up to and learn how to cope with this monster. I Thank

everyone

> > of you for your support and prayers.

> >

> >

> >

> > Love & Prayers, Peggy

> > ipf 6/04

> >

> > Worry looks around.

> > Sorry looks back,

> > Faith looks up.

> >

>

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Kathie,

I have also lived a long time since diagnosis. Was sick for a few years before biopsy. The new pulmo said he thought NSIP. Report said Idiopathic. I have about 12 different names that have been put to it. What does it matter, in the end....it all does the same job on our lungs. I have had good medical treatment. And, I have worked hard to help myself. And, most important...God has answered many, many prayers. I am so thankful for the time that I have been given.

For me, Bronchiectasis has been the worst part of this disease. I spend hours every day just keeping the gunk out of my lungs. It is so easy to get infections with so much mucus lurking around.

Keep fighting the fight! I am!

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > > Gwynne, My saturation doesn't drop nearly like Joyce, and > you.> > > I don't think I could make it. The lowest I have dropped I think > is> > > 83. I felt like an elephant was sitting on me. I guess I am a > wimp,> > > even though I know I have a high pain tolerance I have a low 02> > > tolerance. Some days I just feel like a rag. Then I think of all> > > y'all have been through and I am just amazed. I do have such > HEROs to> > > look up to and learn how to cope with this monster. I Thank > everyone> > > of you for your support and prayers.> > >> > >> > >> > > Love & Prayers, Peggy> > > ipf 6/04> > >> > > Worry looks around.> > > Sorry looks back,> > > Faith looks up.> > >> >>

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Joyce, Like you I have worked very hard and during this time I have

received many blessings. Thanks for responding even though you have

had such a rough day. Treat yourself well!

Kathie

> > > >

> > > > Gwynne, My saturation doesn't drop nearly like Joyce,

and

> > you.

> > > > I don't think I could make it. The lowest I have dropped I

think

> > is

> > > > 83. I felt like an elephant was sitting on me. I guess I am a

> > wimp,

> > > > even though I know I have a high pain tolerance I have a low

02

> > > > tolerance. Some days I just feel like a rag. Then I think of

all

> > > > y'all have been through and I am just amazed. I do have such

> > HEROs to

> > > > look up to and learn how to cope with this monster. I Thank

> > everyone

> > > > of you for your support and prayers.

> > > >

> > > >

> > > >

> > > > Love & Prayers, Peggy

> > > > ipf 6/04

> > > >

> > > > Worry looks around.

> > > > Sorry looks back,

> > > > Faith looks up.

> > > >

> > >

> >

>

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here...I've been reading for ages..to many to reply to BUT I MUST put in my 2 cents on THIS one...howse about "THE THRONE ROOM"...Thrones look very grand but every Royal ever to comment on them say they are dashed uncomfortable!

>> Oh Joyce, I am not going to have the grumpys. I will go hurt somebody > at the 02 company if I do. Ask I probably already have them. > Believe it or not this puppy keeps me sane.> I am going to be thinking of the perfect name for your Queen room. > Maybe we should run a contest.> > I do hope you have the Trans-tracheal done just to give you relief > from the hose up the nose. That is if that's what you want. I'm glad > the nitro is helping.> > I know this sounds stupid but exactly where is the pain? In your > chest? Lungs?> The only pain I have is when I lay down at night my chest hurt quite > a bit.> > I love you and do wish I could do something for you. I would be a > captain for you.> > > > > Love and Prayers, Peggy> ipf 6/04> > Worry looks around.> Sorry looks back,> Faith looks up.>

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returns...

Throne in some american slang also refers to toilet and unfortunately

for Joyce right now that rings too true.

> >

> > Oh Joyce, I am not going to have the grumpys. I will go hurt

somebody

> > at the 02 company if I do. Ask I probably already have them.

> > Believe it or not this puppy keeps me sane.

> > I am going to be thinking of the perfect name for your Queen room.

> > Maybe we should run a contest.

> >

> > I do hope you have the Trans-tracheal done just to give you relief

> > from the hose up the nose. That is if that's what you want. I'm

glad

> > the nitro is helping.

> >

> > I know this sounds stupid but exactly where is the pain? In your

> > chest? Lungs?

> > The only pain I have is when I lay down at night my chest hurt

quite

> > a bit.

> >

> > I love you and do wish I could do something for you. I would be a

> > captain for you.

> >

> >

> >

> >

> > Love and Prayers, Peggy

> > ipf 6/04

> >

> > Worry looks around.

> > Sorry looks back,

> > Faith looks up.

> >

>

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I concur with . A throne is usually an antique if not a relic. Any chair that's actually comfortable gets too worn out to last that long!

Love Ze x> >> > Oh Joyce, I am not going to have the grumpys. I will go hurt somebody> > at the 02 company if I do. Ask I probably already have them.> > Believe it or not this puppy keeps me sane.> > I am going to be thinking of the perfect name for your Queen room.> > Maybe we should run a contest.> >> > I do hope you have the Trans-tracheal done just to give you relief> > from the hose up the nose. That is if that's what you want. I'm glad> > the nitro is helping.> >> > I know this sounds stupid but exactly where is the pain? In your> > chest? Lungs?> > The only pain I have is when I lay down at night my chest hurt quite> > a bit.> >> > I love you and do wish I could do something for you. I would be a> > captain for you.> >> >> >> >> > Love and Prayers, Peggy> > ipf 6/04> >> > Worry looks around.> > Sorry looks back,> > Faith looks up.> >>

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And before Bruce translates for me, I'm well aware that the throne room is another term for the toilet, but judging by Joyces experience, I don't think it's inappropriate in this case

Love Ze xx> > >> > > Oh Joyce, I am not going to have the grumpys. I will go hurt> somebody> > > at the 02 company if I do. Ask I probably already have them.> > > Believe it or not this puppy keeps me sane.> > > I am going to be thinking of the perfect name for your Queen room.> > > Maybe we should run a contest.> > >> > > I do hope you have the Trans-tracheal done just to give you relief> > > from the hose up the nose. That is if that's what you want. I'm glad> > > the nitro is helping.> > >> > > I know this sounds stupid but exactly where is the pain? In your> > > chest? Lungs?> > > The only pain I have is when I lay down at night my chest hurt quite> > > a bit.> > >> > > I love you and do wish I could do something for you. I would be a> > > captain for you.> > >> > >> > >> > >> > > Love and Prayers, Peggy> > > ipf 6/04> > >> > > Worry looks around.> > > Sorry looks back,> > > Faith looks up.> > >> >>

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Yes, it does here too Bruce...I've always had a giggle imagining her Maj (Betty II) ascending her 'Throne'....

GIO

> > >> > > Oh Joyce, I am not going to have the grumpys. I will go hurt > somebody> > > at the 02 company if I do. Ask I probably already have them.> > > Believe it or not this puppy keeps me sane.> > > I am going to be thinking of the perfect name for your Queen room.> > > Maybe we should run a contest.> > >> > > I do hope you have the Trans-tracheal done just to give you relief> > > from the hose up the nose. That is if that's what you want. I'm > glad> > > the nitro is helping.> > >> > > I know this sounds stupid but exactly where is the pain? In your> > > chest? Lungs?> > > The only pain I have is when I lay down at night my chest hurt > quite> > > a bit.> > >> > > I love you and do wish I could do something for you. I would be a> > > captain for you.> > >> > >> > >> > >> > > Love and Prayers, Peggy> > > ipf 6/04> > >> > > Worry looks around.> > > Sorry looks back,> > > Faith looks up.> > >> >>

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