PF brochures

[Guest guest]

Hello everyone, If anyone would like pulmonary fibrosis brochures, please let me know. I would be happy to send them out to anyone who wants them. I've finally put them in my BOA just in case someone is curious about why I have a hose up my nose. Leanne uip 1/03 Patient Advocate Pulmonary Fibrosis Foundation Joyce wrote: Joanie, Maybe we should carry PF brochures around with us. RE: "Tell me again what IPF means and > how did he get it? At least some people are asking....most people assume we have it because we were heavy smokers! Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA > > >> > > to all,> > > thank you, you're all wonderful i'm so happy i found you, > iwasn't> > sure > > > if this was all in my head , i keeping thinking i could do > better,> > but > > > each time i'd get so awful tired, i' going for my breathing test> > on the > > > 29th. and start rehab the 30th, and there'e a group that meets at> > the > > > hospital once a month i'll go there, if anyone has any more> > helpful > > > advice send it along. thank you so much.> > > helen> > >> >>

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[Guest guest]

Yes, I would like one please.

Dee s

5981 Indian Canyon Drive., Banning, CA 92220

PF brochures

Hello everyone,

If anyone would like pulmonary fibrosis brochures, please let me know. I would be happy to send them out to anyone who wants them. I've finally put them in my BOA just in case someone is curious about why I have a hose up my nose.

Leanne uip 1/03

Patient Advocate

Pulmonary Fibrosis Foundation

Joyce <janne5303> wrote:

Joanie,

Maybe we should carry PF brochures around with us. RE: "Tell me again what IPF means and > how did he get it?> cough?)! I know those questions and statements bring a knowing > smile to each of you - > Love and light, Joanie> > > > > > >> > > to all,> > > thank you, you're all wonderful i'm so happy i found you, > iwasn't> > sure > > > if this was all in my head , i keeping thinking i could do > better,> > but > > > each time i'd get so awful tired, i' going for my breathing test> > on the > > > 29th. and start rehab the 30th, and there'e a group that meets at> > the > > > hospital once a month i'll go there, if anyone has any more> > helpful > > > advice send it along. thank you so much.> > > helen> > >> >>

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[Guest guest]

Hey Leanne, carrying brochures sounds like a great idea. Will you send me 4-5? Thanks. Sher ipf 5-06

PF brochures

Hello everyone,

If anyone would like pulmonary fibrosis brochures, please let me know. I would be happy to send them out to anyone who wants them. I've finally put them in my BOA just in case someone is curious about why I have a hose up my nose.

Leanne uip 1/03

Patient Advocate

Pulmonary Fibrosis Foundation

Joyce <janne5303> wrote:

Joanie,

Maybe we should carry PF brochures around with us. RE: "Tell me again what IPF means and > how did he get it? At least some people are asking....most people assume we have it because we were heavy smokers!

Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA > > >> > > to all,> > > thank you, you're all wonderful i'm so happy i found you, > iwasn't> > sure > > > if this was all in my head , i keeping thinking i could do > better,> > but > > > each time i'd get so awful tired, i' going for my breathing test> > on the > > > 29th. and start rehab the 30th, and there'e a group that meets at> > the > > > hospital once a month i'll go there, if anyone has any more> > helpful > > > advice send it along. thank you so much.> > > helen> > >> >>

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[Guest guest]

Peggy,

I don't take NAC (although I do use acetylcysteine in my nebulizer). But, I don't think NAC is responsible for cramps. The doc told me it is because of poor circulation.

I take a Quinine pill at bedtime and it usually gets me through the night....not always. Tonic water is supposed to be good also. Heat on legs or feet (even tho we are not supposed to use heating pads) is good. I have a 'bed buddy' that I heat in the microwave and wrap on my legs at night. Trouble is, it gets cold and here comes the cramps.

I get them sometimes throughout the day...even in my hands...do you?

Hugs, Joyce

PF 1997 Bronchiectasis 2004 INDIANA > > > >> > > > to all,> > > > thank you, you're all wonderful i'm so happy i found you,> > iwasn't> > > sure > > > > if this was all in my head , i keeping thinking i could do> > better,> > > but > > > > each time i'd get so awful tired, i' going for my breathing test> > > on the > > > > 29th. and start rehab the 30th, and there'e a group that meets at> > > the > > > > hospital once a month i'll go there, if anyone has any more> > > helpful > > > > advice send it along. thank you so much.> > > > helen> > > >> > >> >> > > > > > > > Check out the all-new Yahoo! Mail beta> <http://us.rd.yahoo.com/evt=43257/*http://advision.webevents.yahoo.com/mailb> eta> - Fire up a more powerful email and get things done faster.>

[Guest guest]

Thanks Peggy for answering Joanie. I've been swamped....Sher coined the phrase BOA and it caught on! Leanne uip 1/03Peggy wrote: BOA is our Bag Of Air.. I put up a picture of a bag I have and a lot of people bought them. They are a purse. and hold every thing you can imagine. They are called Back Savers form LL Bean. Love and Prayers, Peggy 9/04 ipf Florida HI - What's yuor BOA?!Yes! Please send to me 5

brochures.Joanie KilmonPO Box 214Huntingtown, MD 20639Thanks, Leanne!> > > >> > > > to all,> > > > thank you, you're all wonderful i'm so happy i found you, > > iwasn't> > > sure > > > > if this was all in my head , i keeping thinking i could do > > better,> > > but > > > > each time i'd get so awful tired, i' going for my breathing test> > > on the > > > > 29th. and start rehab the 30th, and there'e a group that meets at> > > the > > > > hospital once a month i'll go there, if anyone

has any more> > > helpful > > > > advice send it along. thank you so much.> > > > helen> > > >> > >> >> > > > > > > ---------------------------------> Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get things done faster.>

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, My heart feels for you because having this disease is so very exhausting. But, whenever I strat feeling sorry for myself I try and remember all of the good years that I have had and how lucky I am to have lived until I was 70. I wake up each morning thankful to G-d that I am still here . You are in my prayers and my warmest regards are sent to you. Louise/ipf/96/ California Holloway wrote: Joyce, I think it hasn’t dawned on me that I am not ever going to get better. I wake up each morning and say is this the day I am going to breathe again? Having friends here made me realize how debilitated I am. My husband makes snide little remarks when I can’t do something. That doesn’t help at all. I have turned up theo2 and am going to put on my go pack this weekend when company has left and see what I

actually can do. This group is a lifeline I agree. Florida From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of JoyceSent: Tuesday, November 28, 2006 9:11 PMTo: Breathe-Support Subject: Re: PF brochures Diane, Yeah, it hurts to be left out. I miss out on so many things. Whenever I am out, I watch women that are my age and how easily they walk across the parking lot..or lift thier grandchild...or pick up a carton of cokes... We had friends come up from Georgia last winter and I know they got bored because everything they wanted to do was impossible for me. My close friends and my husband are wonderful about it all, but life goes on all around me and it does get lonely at times. I have to stop and think of God's mercy to me in letting me outlive my time and the joys

that he has brought to me during these years of extra time. Some days it is just hard to see the sunshine through the dark clouds. I understand. Hugs, Joyce PF 1997 Bronchiectasis 2004 Indiana > >

>> > > Hi,> > >! ; > > > I have had consistently low potassium since having thi s disease. I take> a> > > prescribed potassium pill every day.> > > > > > Thanks for the NAC info. These are capsules.> > > > > > Some one had posted about swimming. I swim almost every day. I feel like> a> > > teenager in the pool. I can breathe etc. The minute I get out I need the> > o2.> > > > > > I often wish I didn't have the damned oximeter. I huffed and puffed> > before.> > > My sats were probably low for years. I feel fine then I stick that> > oximeter> > > on my finger and my sats are 71. I never would have known. Very> > dep! ressing.> > > > > > Florida P.F.4/2006 > > > > > > > > > >

> > _____ > > > > > > From: Breathe-Suppor> >>

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[Guest guest]

Hi , One time I was headed to the car, 90 plus degrees and had my air on 4 but the humidity was high. I needed to get into the car quickly and said OK stop and tell me right now why you can't breath....GGGRRRR I wanted so badly to just slap him but I waited and when I got my breath and said Oh it could be because I have a fatal lung disease and the humidity is about 110. AND don't ever make the mistake of asking me that again..he hasn't.

He has read a lot more about this monster since the early days and is now very understanding and helpful.

Don't push yourself to hard, Keep an eye on your sat. levels. you will be so very tired but feel much better when you see that you CAN DO. So enjoy yourself. As far as not getting better, I have had times where I just crash for a few days then I'm back up and feeling great so every day is different. Just thank our good Lord for each day we are granted.

Let us know about your adventure. God Bless...

Love and Prayers, Peggy 9/04 ipf Florida

Joyce,

I think it hasn¹t dawned on me that I am not ever going to get better. I wake up each morning and say is this the day I am going to breathe again?

Having friends here made me realize how debilitated I am. My husband makes snide little remarks when I can¹t do something. That doesn¹t help at all.

I have turned up theo2 and am going to put on my go pack this weekend when company has left and see what I actually can do.

This group is a lifeline I agree.

Florida

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

Sent: Tuesday, November 28, 2006 9:11 PM

To: Breathe-Support

Subject: Re: PF brochures

Diane,

Yeah, it hurts to be left out. I miss out on so many things. Whenever I am out, I watch women that are my age and how easily they walk across the parking lot..or lift thier grandchild...or pick up a carton of cokes...

We had friends come up from Georgia last winter and I know they got bored because everything they wanted to do was impossible for me. My close friends and my husband are wonderful about it all, but life goes on all around me and it does get lonely at times.

I have to stop and think of God's mercy to me in letting me outlive my time and the joys that he has brought to me during these years of extra time. Some days it is just hard to see the sunshine through the dark clouds. I understand.

Hugs, Joyce PF 1997 Bronchiectasis 2004 Indiana

> > >

> > > Hi,

> > >! ;

> > > I have had consistently low potassium since having thi s disease. I take

> a

> > > prescribed potassium pill every day.

> > >

> > > Thanks for the NAC info. These are capsules.

> > >

> > > Some one had posted about swimming. I swim almost every day. I feel like

> a

> > > teenager in the pool. I can breathe etc. The minute I get out I need the

> > o2.

> > >

> > > I often wish I didn't have the damned oximeter. I huffed and puffed

> > before.

> > > My sats were probably low for years. I feel fine then I stick that

> > oximeter

> > > on my finger and my sats are 71. I never would have known. Very

> > dep! ressing.

> > >

> > > Florida P.F.4/2006

> > >

> > >

> > >

> > > _____

> > >

> > > From: Breathe-Suppor

> >

>

[Guest guest]

The truth is Sher loves us and we love her.. we are all going to be here for a LONG LONG time..

Love and Prayers, Peggy 9/04 ipf Florida

Diane...when I was first diagnosed (May '06) I was sure I was going to die within a week! Well, maybe a few months anyway.

When I was told that was not going to happen I was able to relax a bit.

I'm still in mild stage...have another workup in Dec. When I've progressed to the final stage then I will deal with that then. I tell myself I'm not going to worry about " that " now. I'll worry about " that " then. It helps ME.

I'm pretty sedentary but that's the way it is for me.

I don't respond to every post but I read nearly every one. It helps just to have the connection.

Have a good day.

Love, Sher ipf 5-06

Re: PF brochures

Diane,

Yeah, it hurts to be left out. I miss out on so many things. Whenever I am out, I watch women that are my age and how easily they walk across the parking lot..or lift thier grandchild...or pick up a carton of cokes...

We had friends come up from Georgia last winter and I know they got bored because everything they wanted to do was impossible for me. My close friends and my husband are wonderful about it all, but life goes on all around me and it does get lonely at times.

I have to stop and think of God's mercy to me in letting me outlive my time and the joys that he has brought to me during these years of extra time. Some days it is just hard to see the sunshine through the dark clouds. I understand.

Hugs, Joyce PF 1997 Bronchiectasis 2004 Indiana

> > >

> > > Hi,

> > >! ;

> > > I have had consistently low potassium since having thi s disease. I take

> a

> > > prescribed potassium pill every day.

> > >

> > > Thanks for the NAC info. These are capsules.

> > >

> > > Some one had posted about swimming. I swim almost every day. I feel like

> a

> > > teenager in the pool. I can breathe etc. The minute I get out I need the

> > o2.

> > >

> > > I often wish I didn't have the damned oximeter. I huffed and puffed

> > before.

> > > My sats were probably low for years. I feel fine then I stick that

> > oximeter

> > > on my finger and my sats are 71. I never would have known. Very

> > dep! ressing.

> > >

> > > Florida P.F.4/2006

> > >

> > >

> > >

> > > _____

> > >

> > > From: Breathe-Suppor

> >

>

[Guest guest]

Peggy, thanks for your loving words! They mean so much to me. Being loved is always welcome! Not having family (except MY children) and coming from a pretty sick bunch at that, being loved was not something I felt a lot of. I feel it here on this board and it helps me cope.

Love to you too girlfriend!

Sher ipf 5-06

"Don't worry about tomorrow, God is already there"

RE: Re: PF brochuresJoyce, I think it hasn’t dawned on me that I am not ever going to get better. I wake up each morning and say is this the day I am going to breathe again? Having friends here made me realize how debilitated I am. My husband makes snide little remarks when I can’t do something. That doesn’t help at all. I have turned up theo2 and am going to put on my go pack this weekend when company has left and see what I actually can do. This group is a lifeline I agree. Florida

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of JoyceSent: Tuesday, November 28, 2006 9:11 PMTo: Breathe-Support Subject: Re: PF brochuresDiane, Yeah, it hurts to be left out. I miss out on so many things. Whenever I am out, I watch women that are my age and how easily they walk across the parking lot..or lift thier grandchild...or pick up a carton of cokes... We had friends come up from Georgia last winter and I know they got bored because everything they wanted to do was impossible for me. My close friends and my husband are wonderful about it all, but life goes on all around me and it does get lonely at times. I have to stop and think of God's mercy to me in letting me outlive my time and the joys that he has brought to me during these years of extra time. Some days it is just hard to see the sunshine through the dark clouds. I understand. Hugs, Joyce PF 1997 Bronchiectasis 2004 Indiana > > >> > > Hi,> > >! ; > > > I have had consistently low potassium since having thi s disease. I take> a> > > prescribed potassium pill every day.> > > > > > Thanks for the NAC info. These are capsules.> > > > > > Some one had posted about swimming. I swim almost every day. I feel like> a> > > teenager in the pool. I can breathe etc. The minute I get out I need the> > o2.> > > > > > I often wish I didn't have the damned oximeter. I huffed and puffed> > before.> > > My sats were probably low for years. I feel fine then I stick that> > oximeter> > > on my finger and my sats are 71. I never would have known. Very> > dep! ressing.> > > > > > Florida P.F.4/2006 > > > > > > > > > > > > _____ > > > > > > From: Breathe-Suppor> >>

[Guest guest]

That is a great idea Leanne! I would like some to give my dad. 13455 Aspen Grove Corona, CA 92880.I hope you are feeling better! Cyndi (DAD PF 12/05)Leanne Storch wrote: Hello everyone, If anyone would like pulmonary fibrosis brochures, please let me know. I would be happy to send them out to anyone who wants them. I've finally put them in my BOA just in case someone is curious about why I have a hose up my nose.

Leanne uip 1/03 Patient Advocate Pulmonary Fibrosis Foundation Joyce <janne5303> wrote: Joanie, Maybe we should carry PF brochures around with us. RE: "Tell me again what IPF means and > how did he get it? At least some people are asking....most people assume we have it because we were heavy smokers! Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA > > >> > > to all,> > > thank you, you're all wonderful i'm so happy i found you, > iwasn't> > sure > > > if this was all in my head , i keeping thinking i could do > better,> > but > > > each time i'd get so awful tired, i' going for my breathing test> > on the > > > 29th. and start rehab the 30th, and there'e a group that meets at> > the > > > hospital once a month i'll go there, if anyone has any

more> > helpful > > > advice send it along. thank you so much.> > > helen> > >> >> Check out the all-new Yahoo! Mail beta - Fire up a more powerful email and get things done faster.