Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Caro....thanks so much for the personal glimpse! Now I can kinda' picture you better....yes, do post some pictures! I want to add to what Bruce said to you.... When I went on the interview a week ago to return to volunteer work, I met with a group of (new) people. I took my o2 with me and got it out of the way...my dx and at times I may need to us o2. Took all of 2 minutes and meeting resumed. No one looked at me strangely and I didn't feel one bit self-conscious. I hope this helps a little more.........Sounds like you're making plans for something that hasn't happened yet. When the time does come, you'll be ready! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Caro/MB/WaltTo: Breathe-Support@ yahoogroups. comDate: Thursday, May 1, 2008, 12:30 PM Caro... I really admire your spunk to do the exercise/outside for a walk....! I'm going to rehab again...went previously.. .a couple different times....now will go again. Today. Really need the conditioning. Hey, take it easy on the new "toy". I know how some of us are...we go at things like we're killing snakes with a stick! MB... You paint a wonderful picture of you on the little deck. I missed something... .are you visiting family in NY? Walt... You do have a tough decision to make! Do the Drs. have some sort of educated guess by scans/x-rays/ blood work what strain you have? I'm not a good person to ask because I will not do a lung bio....there is no guarantee it will be absolutely definitive and if it's IPF (you don't say what strain you have) there is no treatment/cure anyway. Prednisone is about the only med used and it has ghastly side effects....I won't take the med either. There are different opinions Walt....Bruce had a bio, and although painful, he would do it again....I'm sure he will respond to you. Are you on O2....do you need more O2??? God guide you........ Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Sher/Caro Oh that made me think of something and laugh. I found myself Saturday night with just me and eight caregivers. I walked to and from dinner with (Peggy), Mike (Leanne) and Eddie (Jane). Not only did they not look at me strangely checking my sats, they would have all scolded had I not, they are so use to it. I turned up as I needed, but they were always prepared to slow down if I needed. We did have to take some steps due to a broken elevator button. The concern and then the rest at the top was so automatic for them. My family and friends here are so use to it. The convenience store clerks are, my doctors and their offices. If I sound sob I'm going to be asked if my sats are ok because those commonly around me are educated. They all sometimes check theirs too. So, its created an awareness on their part that if they did start experiencing shortness of breath its something they should have checked. They know a measurement they never knew before and know what a six minute walk is. They understand the effect of exertion on someone with PF. As to the use of oxygen, I broke through the initial barrier the first night home with it when I got hungry for a snack and had to decide not to let it keep me from going to the convenience store. That was when I made myself refuse to not do anything just because I have to take the 30 extra seconds to get ready. As to around others, oh I admit to the same vanity as every one else. The tube in my nose certainly isn't conducive to meeting and getting some " hot date. " However, the reality is its part of me and to those who matter and my friends and even new friends I've made it doesn't matter to them. I doesn't even normally affect hugs although a large group hug with everyone with a tank, well except poor Teri who almost got smothered by Peggy, Jane and Leanne and me (especially being so much shorter), you might have to adjust them to the side a bit. I know its not the same but I do sort of compare it to becoming use to wearing glasses. Oh, I know so many girls I knew when young who absolutely were destroyed knowing they had to and wore them as little as possible even if they couldn't see. Yes, I tried contacts along the way and dreamed of Radial K when young and then Lasik, neither of which was ever an option for me. Now I look to cataract surgery and the lens and much smaller glasses. But I've worn glasses 53 years so far and oxygen less than one. I'd gladly wear oxygen 53......lol > > From: Sher Bauman bofuswbcable (DOT) net> > Subject: Caro/MB/Walt > To: Breathe-Support@ yahoogroups. com > Date: Thursday, May 1, 2008, 12:30 PM > > > Caro... I really admire your spunk to do the exercise/outside for a walk....! I'm going to rehab again...went previously.. .a couple different times....now will go again. Today. Really need the conditioning. Hey, take it easy on the new " toy " . I know how some of us are...we go at things like we're killing snakes with a stick! > MB... You paint a wonderful picture of you on the little deck. I missed something... .are you visiting family in NY? > Walt... You do have a tough decision to make! Do the Drs. have some sort of educated guess by scans/x-rays/ blood work what strain you have? > I'm not a good person to ask because I will not do a lung bio....there is no guarantee it will be absolutely definitive and if it's IPF (you don't say what strain you have) there is no treatment/cure anyway. Prednisone is about the only med used and it has ghastly side effects....I won't take the med either. > There are different opinions Walt....Bruce had a bio, and although painful, he would do it again....I'm sure he will respond to you. > Are you on O2....do you need more O2??? > God guide you........ > > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. > Don't fret about tomorrow, God is already there! > > > > ------------------------------------------------ > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > > ------------------------------------------------ > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > > ------------------------------------------------ > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > > ------------------------------------------------ > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > > > > K > Central Il > Hubby ipf- 2006 > As for me and my house, we will serve the Lord > 14 > > > -------------------------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > > > > > ---------------------------------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > > > > > -------------------------------------------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > > > > > ------------------------------------------------------------------------\ ------ > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 You all are so wonderful!! Every time I am down or worried about even the things that haven't happened yet, I know I can come here and always feel better. I just absolutely love you guys!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: Re: Caro/MB/Walt/SherTo: Breathe-Support Date: Monday, May 5, 2008, 12:24 PM Sher/CaroOh that made me think of something and laugh. I found myself Saturdaynight with just me and eight caregivers. I walked to and from dinnerwith (Peggy), Mike (Leanne) and Eddie (Jane). Not only did they notlook at me strangely checking my sats, they would have all scolded had Inot, they are so use to it. I turned up as I needed, but they werealways prepared to slow down if I needed. We did have to take some stepsdue to a broken elevator button. The concern and then the rest at thetop was so automatic for them. My family and friends here are so use toit. The convenience store clerks are, my doctors and their offices. If Isound sob I'm going to be asked if my sats are ok because those commonlyaround me are educated. They all sometimes check theirs too. So, itscreated an awareness on their part that if they did start experiencingshortness of breath its something they should have checked. They know ameasurement they never knew before and know what a six minute walk is.They understand the effect of exertion on someone with PF.As to the use of oxygen, I broke through the initial barrier the firstnight home with it when I got hungry for a snack and had to decide notto let it keep me from going to the convenience store. That was when Imade myself refuse to not do anything just because I have to take the 30extra seconds to get ready. As to around others, oh I admit to the samevanity as every one else. The tube in my nose certainly isn't conduciveto meeting and getting some "hot date." However, the reality is its partof me and to those who matter and my friends and even new friends I'vemade it doesn't matter to them. I doesn't even normally affect hugsalthough a large group hug with everyone with a tank, well except poorTeri who almost got smothered by Peggy, Jane and Leanne and me(especially being so much shorter), you might have to adjust them to theside a bit.I know its not the same but I do sort of compare it to becoming use towearing glasses. Oh, I know so many girls I knew when young whoabsolutely were destroyed knowing they had to and wore them as little aspossible even if they couldn't see. Yes, I tried contacts along the wayand dreamed of Radial K when young and then Lasik, neither of which wasever an option for me. Now I look to cataract surgery and the lens andmuch smaller glasses. But I've worn glasses 53 years so far and oxygenless than one. I'd gladly wear oxygen 53......lol>> From: Sher Bauman bofuswbcable (DOT) net>> Subject: Caro/MB/Walt> To: Breathe-Support@ yahoogroups. com> Date: Thursday, May 1, 2008, 12:30 PM>>> Caro... I really admire your spunk to do the exercise/outside for awalk....! I'm going to rehab again...went previously.. .a coupledifferent times....now will go again. Today. Really need theconditioning. Hey, take it easy on the new "toy". I know how some of usare...we go at things like we're killing snakes with a stick!> MB... You paint a wonderful picture of you on the little deck. Imissed something... .are you visiting family in NY?> Walt... You do have a tough decision to make! Do the Drs. have somesort of educated guess by scans/x-rays/ blood work what strain you have?> I'm not a good person to ask because I will not do a lung bio....thereis no guarantee it will be absolutely definitive and if it's IPF (youdon't say what strain you have) there is no treatment/cure anyway.Prednisone is about the only med used and it has ghastly sideeffects....I won't take the med either.> There are different opinions Walt....Bruce had a bio, and althoughpainful, he would do it again....I'm sure he will respond to you.> Are you on O2....do you need more O2???> God guide you........>> Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> Don't fret about tomorrow, God is already there!>>>> ------------ --------- --------- --------- ---------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>>> ------------ --------- --------- --------- ---------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>>> ------------ --------- --------- --------- ---------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>>> ------------ --------- --------- --------- ---------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>>>>> K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14>>> ------------ --------- --------- --------- --------- --> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>>>>>> ------------ --------- --------- --------- --------- --------- -> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>>>>>> ------------ --------- --------- --------- --------- --------- -> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>>>>>>------------ --------- --------- --------- --------- --------- -\------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Hang in there girl! We gotcha covered. K IllinoisCarolyn Wade wrote: You all are so wonderful!! Every time I am down or worried about even the things that haven't happened yet, I know I can come here and always feel better. I just absolutely love you guys!!CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi--- On Mon, 5/5/08, Bruce Moreland <brucemorelandgmail> wrote: From: Bruce Moreland <brucemorelandgmail>Subject: Re: Caro/MB/Walt/SherTo: Breathe-Support Date: Monday, May 5, 2008, 12:24 PM Sher/CaroOh that made me think of something and laugh. I found myself Saturdaynight with just me and eight caregivers. I walked to and from dinnerwith (Peggy), Mike (Leanne) and Eddie (Jane). Not only did they notlook at me strangely checking my sats, they would have all scolded had Inot, they are so use to it. I turned up as I needed, but they werealways prepared to slow down if I needed. We did have to take some stepsdue to a broken elevator button. The concern and then the rest at thetop was so automatic for them. My family and friends here are so use toit. The convenience store clerks are, my doctors and their offices. If Isound sob I'm going to be asked if my sats are ok because those commonlyaround me are educated. They all sometimes check theirs too. So, itscreated an awareness on their part that if they did start experiencingshortness of breath its something they should have checked. They know ameasurement they never knew before and know what a six minute walk is.They understand the effect of exertion on someone with PF.As to the use of oxygen, I broke through the initial barrier the firstnight home with it when I got hungry for a snack and had to decide notto let it keep me from going to the convenience store. That was when Imade myself refuse to not do anything just because I have to take the 30extra seconds to get ready. As to around others, oh I admit to the samevanity as every one else. The tube in my nose certainly isn't conduciveto meeting and getting some "hot date." However, the reality is its partof me and to those who matter and my friends and even new friends I'vemade it doesn't matter to them. I doesn't even normally affect hugsalthough a large group hug with everyone with a tank, well except poorTeri who almost got smothered by Peggy, Jane and Leanne and me(especially being so much shorter), you might have to adjust them to theside a bit.I know its not the same but I do sort of compare it to becoming use towearing glasses. Oh, I know so many girls I knew when young whoabsolutely were destroyed knowing they had to and wore them as little aspossible even if they couldn't see. Yes, I tried contacts along the wayand dreamed of Radial K when young and then Lasik, neither of which wasever an option for me. Now I look to cataract surgery and the lens andmuch smaller glasses. But I've worn glasses 53 years so far and oxygenless than one. I'd gladly wear oxygen 53......lol>> From: Sher Bauman bofuswbcable (DOT) net>> Subject: Caro/MB/Walt> To: Breathe-Support@ yahoogroups. com> Date: Thursday, May 1, 2008, 12:30 PM>>> Caro... I really admire your spunk to do the exercise/outside for awalk....! I'm going to rehab again...went previously.. .a coupledifferent times....now will go again. Today. Really need theconditioning. Hey, take it easy on the new "toy". I know how some of usare...we go at things like we're killing snakes with a stick!> MB... You paint a wonderful picture of you on the little deck. Imissed something... .are you visiting family in NY?> Walt... You do have a tough decision to make! Do the Drs. have somesort of educated guess by scans/x-rays/ blood work what strain you have?> I'm not a good person to ask because I will not do a lung bio....thereis no guarantee it will be absolutely definitive and if it's IPF (youdon't say what strain you have) there is no treatment/cure anyway.Prednisone is about the only med used and it has ghastly sideeffects....I won't take the med either.> There are different opinions Walt....Bruce had a bio, and althoughpainful, he would do it again....I'm sure he will respond to you.> Are you on O2....do you need more O2???> God guide you........>> Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> Don't fret about tomorrow, God is already there!>>>> ------------ --------- --------- --------- ---------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>>> ------------ --------- --------- --------- ---------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>>> ------------ --------- --------- --------- ---------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>>> ------------ --------- --------- --------- ---------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>>>>> K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14>>> ------------ --------- --------- --------- --------- --> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>>>>>> ------------ --------- --------- --------- --------- --------- -> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>>>>>> ------------ --------- --------- --------- --------- --------- -> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.>>>>>>------------ --------- --------- --------- --------- --------- -\------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit now.> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Caro We're glad you feel good coming here to be with your friends. I was talking in San about how I feel for those who don't have a place like this to go, either a local or online support group. If not for here, I would not know a single person in the world who had my disease. Without here I'd be making decisions such as the one I face today about treatment with so little information and something I feel so strongly about is informed choices. I don't think there are right and wrong decisions just informed and uninformed ones. And, uninformed ones are not good because they lead to way too many surprises and regrets and too much second guessing. Quote Link to comment Share on other sites More sharing options...
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