Re: RUDE QUESTIONS

[Guest guest]

Hi everyone, I believe this is why I dont get help from any relatives, they all think becaused Mum smoked 40years ago, this is why she is ill, they dont recognise it has anything to do with the arthritis.

Last year we went to a golden wedding anniversary but couldnt stay too long as we had further to travel back further than most of the others, the aunt whose party it was wrote to my mum thanking us for attending but saying it was a shame we had to leave because room was so smokey and she thought that was ironic considering how much mum used to smoke.

Mum has been poorly and as Joyce suggested I got in touch with our surgery nurse and she has referred Mum to have Macmillan nurse come to house for assessment for some respite care. She cant even leave her mask off to eat now but putting the canula on for this short time helps otherwise she loses the ability to speak.

I think things in the uk as far as oxygen goes is different than in the US. We get concentrators free and also the company that supplies the units send a cheque to us every month for the value of the electricity used by the units.

Thanks for suggestion of home hospice liaison Im sure its going to help enormously,

love Ann (Carer,UK) XXXXX

[Guest guest]

Joyce D--i have the idea, i need someone to do the art work pink Joyce wrote: You design it, I'll buy it! > , > I have been asked many times about smoking. I never smoked and if I did, why would a perfect stranger ask about your personal habits. One woman asked me as I went through check out at the grocery, "How many packs a day did you smoke, honey?" I could have asked her just how many Snickers she ate a day to get so fat.> I love the kids questions, however. A little guy asked me the other day why I had a rope around my face? I let him listen to the puffing and explained to him about it...he in

turn let me see his toy that made multicolor sparkles. Cool!> Hugs, Joyce D.> PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA > > > > > > > Pink Joyce IPF 3/06 Pennslvania > > ---------------------------------> Ahhh...imagining that irresistible "new car" smell?> Check outnew cars at Yahoo! Autos.>Pink Joyce IPF 3/06 Pennslvania

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.

[Guest guest]

ditto pink Beth wrote: , I know exactly what you mean. So many that I considered friends have really disappointed me. The weird looks and stares and in some cases the downright abandonment of our "friendship" has

been most disheartening. Sigh... Folks are human after all and we all do the best we can but it's ironic how when we most need caring and warmth some people just turn away. I realize it's out of fear in most cases but it does hurt. That's what makes everyone here that much more precious to me! Beth in NY Fibrotic NSIP 06/06 Don't try to explain it, just nod your head. Breathe in, breathe out. Move

on. J. Buffett Re: RUDE QUESTIONS its not the questions so much as the looks i get when i am out with my oxygen.don't get me wrong it does bother me somewhat with the stares and such but the stares of strangers do not bother me as much as the looks i get from family or people i considered close friends sometimes... ......those looks are worse than any that any other person could give. LCH 10-05>> > ,> > I have been asked many times about smoking. I never smoked and if I> did, why would a perfect stranger ask about your personal habits. One> woman asked me as I went through check out at the grocery, "How many> packs a day did you smoke, honey?" I could have asked her just how many> Snickers she ate a day to get so fat.> > I love the kids questions, however. A little guy asked me the other day> why I had a rope around my face? I let him listen to the puffing and> explained to him about it...he in turn let me see his toy that made> multicolor sparkles. [] Cool!> > Hugs, Joyce D.> > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004

INDIANA> Pink Joyce IPF 3/06 Pennslvania

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.

[Guest guest]

I think that's a great idea! I'd buy a lot! :-)Have a great day designing! :-)Cyndi (DAD PF 12/05) CaliforniaJoyce T Rosenberg wrote: Fundraising idea: create a T-shirt one side will say "Pulmonary Fibrosis--it takes your breath away." The other side will say "No, I did not smoke!" There is a cute "sick" dragon on one of the teacher websites that I put on the back of one of my t-shirts. There

is also a poem by Jack Prelutsky about a sick dragon and one about a dragon in the rain whose flame went out. pink Joyce <janne5303> wrote: , I have been asked many times about smoking. I never smoked and if I did, why would a perfect stranger ask about your personal habits. One woman asked me as I went through check out at the grocery, "How many packs a day did you smoke, honey?" I could have asked her just how many Snickers she ate a day to get so fat. I love the kids questions,

however. A little guy asked me the other day why I had a rope around my face? I let him listen to the puffing and explained to him about it...he in turn let me see his toy that made multicolor sparkles. Cool! Hugs, Joyce D. PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA ! ; Pink Joyce IPF 3/06 Pennslvania Ahhh...imagining that irresistible "new car" smell?

Check out new cars at Yahoo! Autos.

[Guest guest]

Love the snickers comment! My dad came to my classroom the other day for an assembly. The kids (2nd graders) Never said anything about his oxygen until later when I was giving a spelling test. The spelling word was father. I said, "You met my father today!"A little girl raised her hand and said, "Mrs. your father is special just like my Papa!" I asked, "What do you mean?'" She replied, " He needs help breathing!" It was so sweet, and my dad has since been to my room 3 times to read stories to them. They are so sweet to him!Cyndi (DAD, PF 12/05)Joyce wrote: , I have been asked many times about smoking. I never smoked and if I did, why would a perfect stranger ask about your personal habits. One woman asked me as I went through check out at the grocery, "How many packs a day did you smoke, honey?" I could have asked her just how many Snickers she ate a day to get so fat. I love the kids questions, however. A little guy asked me the other day why I had a rope around my face? I let him listen to the puffing and explained to him about it...he in turn let me see his toy that made multicolor sparkles. Cool! Hugs, Joyce D. PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA

[Guest guest]

Joyce...I love the T shirt idea!!!

-- Z.fibriotic NSIP/05/PA Potter, reader,carousel lover, and MomMom to Darah "I'm gonna be iron like a lion in Zion." Bob Marley

-------------- Original message --------------

Fundraising idea: create a T-shirt

one side will say "Pulmonary Fibrosis--it takes your breath away." The other side will say "No, I did not smoke!"

There is a cute "sick" dragon on one of the teacher websites that I put on the back of one of my t-shirts.

There is also a poem by Jack Prelutsky about a sick dragon and one about a dragon in the rain whose flame went out.

pink Joyce <janne5303> wrote:

,

I have been asked many times about smoking. I never smoked and if I did, why would a perfect stranger ask about your personal habits. One woman asked me as I went through check out at the grocery, "How many packs a day did you smoke, honey?" I could have asked her just how many Snickers she ate a day to get so fat.

I love the kids questions, however. A little guy asked me the other day why I had a rope around my face? I let him listen to the puffing and explained to him about it...he in turn let me see his toy that made multicolor sparkles. Cool!

Hugs, Joyce D.

PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA

Pink Joyce IPF 3/06 Pennslvania

Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos.

[Guest guest]

, Those friends and family .....they are scared for you. The o2 reminds them that you indeed are sick.

-- Z.fibriotic NSIP/05/PA Potter, reader,carousel lover, and MomMom to Darah "I'm gonna be iron like a lion in Zion." Bob Marley

-------------- Original message --------------

its not the questions so much as the looks i get when i am out with my oxygen.don't get me wrong it does bother me somewhat with the stares and such but the stares of strangers do not bother me as much as the looks i get from family or people i considered close friends sometimes.........those looks are worse than any that any other person could give. LCH 10-05>> > ,> > I have been asked many times about smoking. I never smoked and if I> did, why would a perfect stranger ask about your personal habits. One> woman asked me as I went through check out at the grocery, "How many> packs a day did you smoke, honey?" I could have asked her just how many> Snickers she ate a day to get so fat.> > I love the kids questions, however. A little guy asked me the other day> why I had a rope around my face? I let him listen to the puffing and> explained to him about it...he in turn let me see his toy that made> multicolor sparkles. [] Cool!> > Hugs, Joyce D.> > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA>

[Guest guest]

Cyndi, I LOVED this story! Thanks for sharing. Kids do say the darndest things! Leanne wrote: Love the snickers comment! My dad came to my classroom the other day for an assembly. The kids (2nd graders) Never said anything about his oxygen until later when I was giving a spelling test. The spelling word was father. I said, "You met my father today!"A little girl raised her

hand and said, "Mrs. your father is special just like my Papa!" I asked, "What do you mean?'" She replied, " He needs help breathing!" It was so sweet, and my dad has since been to my room 3 times to read stories to them. They are so sweet to him!Cyndi (DAD, PF 12/05)Joyce <janne5303> wrote: , I have been asked many times about smoking. I never smoked and if I did, why would a perfect stranger ask about your personal habits. One woman asked me as I went through check out at the grocery, "How many packs a day did you smoke, honey?" I could have asked her just how many Snickers she ate a day to get so fat. I love the kids questions, however. A little guy asked me the other day why I had a rope around my face? I let him listen to the puffing and explained to him about it...he in turn let me see his toy that made multicolor sparkles. Cool! Hugs, Joyce D. PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.

[Guest guest]

Z,

Wouldn't it be great if we could all be six forever?

Hugs, Joyce >> Joyce D. I have also had charming conversations with young children about my o2. At a baby-shower this winter, a little 6year old boy who I didn't know ( he was a cousin of the mommy-to -be)> came over to me, handed me one of his balloons and asked" What happened to you?" in the sweetest little voice. No judgement..just curiousity. I explained that o2 helped me to breathe better and let him feel and hear the puffs. He said OK and just kept playing with the other balloons he was holding. > I found his mom and told her how kind her son was and she thanked me. It was so positive!!> --> Z.fibriotic NSIP/05/PA > Potter, reader,carousel lover, and MomMom to Darah > "I'm gonna be iron like a lion in Zion." Bob Marley> > -------------- Original message -------------- > From: "Joyce" janne5303@... > , > I have been asked many times about smoking. I never smoked and if I did, why would a perfect stranger ask about your personal habits. One woman asked me as I went through check out at the grocery, "How many packs a day did you smoke, honey?" I could have asked her just how many Snickers she ate a day to get so fat.> I love the kids questions, however. A little guy asked me the other day why I had a rope around my face? I let him listen to the puffing and explained to him about it...he in turn let me see his toy that made multicolor sparkles. Cool!> Hugs, Joyce D.> PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA>

[Guest guest]

Cyndi, I remember the first time I saw the pics of your Dad... TEDDY BEAR!!! It's absolutely no wonder the kids just fell for him. If I met him I don't think I would notice the tubing... I'd just want to hug him! That is so great he's a guest reader... what a win/win situation. When my Dad (70 year old, multi-angioplasty's, stints, fused vertebrae and he still seems in tip top condition to me) was visiting last I volunteered him to go help out in my daughters kindergarten P.E. class, she loved it. He and my Mom both volunteered at my elementary school when I was there. Kerry IPF '01 S. IN wrote: Love the snickers comment! My dad came to my classroom the other day for an assembly. The kids (2nd graders) Never said anything about his oxygen until later when I was giving a spelling test. The spelling word was father. I said, "You met my father today!"A little girl raised her hand and said, "Mrs. your father is special just like my Papa!" I asked, "What do you mean?'" She replied, " He needs help breathing!" It was so sweet, and my dad has since been to my room 3 times to read stories to them. They are so sweet to him!Cyndi (DAD, PF 12/05)Joyce <janne5303> wrote: , I have been asked many times about smoking. I never smoked and if I did, why would a perfect stranger ask about your personal habits. One woman asked me as I went through check out at the grocery, "How many packs a day did you smoke, honey?" I could have asked her just how many Snickers she ate a day to get so fat. I love the kids questions, however. A little guy asked me the other day why I had a rope around my face? I let him listen to the puffing and explained to him about it...he in turn let me see his toy that made multicolor sparkles. Cool! Hugs, Joyce D. PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.

[Guest guest]

HI all,

I went to Va beach this weekend, first time out and about in a long time. I noticed while my husband was pushing me,

I'm unable to walk now without my sats dropping even on 6-8 fl . Trying to get more info on hi ox mask, anywho back to my story. While he was pushing and on the boardwalk and while I was sitting soaking up some fresh air and sun (hadn't done that in so loooong - really miss it), I noticed some people staring at me, I just smiled and continued enjoying myself and the beautiful view, then I realize, if I could tell them only one thing it would be to enjoy live and the time they have.

I also noticed some people look away from you or not directly at you, they don't want to face the reality of life and that is death happens to everyone, sooner or later.

I was smiling and enjoying myself and most all my friends and family carter to me and my needs, so I have no complaints there.

Sometimes we are a reminder that things could be worse or this could be you sitting here. I don't mind questions about the air or my weight for that matter, for all I know they may think I'm too fat and can't walk. I'm only 50 lbs over weight so I don't think that is so bad, but I do need to lose.

I just say hi when someone is staring and maybe they have a question or not. I don't think the stares are always bad, as

I 'm looking off at times usually at nothing and lost in my mind thinking on something and someone may think I'm staring at them when in fact I'm not, just and observation. I think sometimes we may be critical since it feels like it is always happening, when in fact it isn't always the same people, but it is always you that feels the stares.

I try to be pleasant even when I don't feel like it, as this is what God wants me to do.

Donna in DE