Guest guest Posted May 5, 2007 Report Share Posted May 5, 2007 To all of the men in this group..You should know that your wives love you and only want to make things easier for you... I'm on the other side of the taking care situation. My husband does many of the things I used to do! He often does the wash and often shops for the big stuff and cooks too!!. I know how much I would prefer to do these things myself, but am so grateful that he does them for me. I can save my energy for my grand daughter and my kids. He had surgery this winter and felt guilty that he couldn't help as much and I did take on a bit too much, but that's what marriage is all about anyway!!! After almost 42 years we just do what needs to be done...we don't keep score...we just do it. I'm certain that you tell your wives how much you love them and appreciate their help..they do need to hear that once in a while...just a hint! Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley Harold wrote: > > > > Hi everyone, my name is and I appreciate being a member of your > > group. I was diagnosed just about 2 years ago now and went to rehab > > and am continuing with what the hospital calls phase 3 where you have > > a director, but take your own stats and write them into a sheet. It's > > a nice group with people with different forms of COPD, unfortunately > > I'm the only one with IPF so they don't feel like I do. After reading > > some of the posts on this site I see others having the same problems > > and feelings that I have so I can relate with them. I live in New > > Hampshire in a mobile home in a park, it's a coop park and there are > > many nice people here. I was the operations manager doing everything > > for everyone, but now I can't do the physical stuff for them or > > myself. It's hard seeing my wife trying to do a lot of the physical > > things I used to do. Well just a little to introduce myself. > > > > God be with you all, HCarson, sawman23us hey , I was told I had IPF in 2005 and we all on here know what u are going through.I don't get on here to much but I still read a lot of the post on here,I say a specal prayer every night for our group,just don't feel you are alone in this because there are a lot of good people on here that you can talk to and a lot of friends.I knowq what you mean when you said your wife does the things you use to do because my wife does that also. > > > No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.467 / Virus Database: 269.6.4/790 - Release Date: 5/5/2007 10:34 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2007 Report Share Posted May 6, 2007 Judy, I've been reading all your posts in regard to you upcoming move. Mike and I are seriously looking to move into a ranch style house from our two story very soon. I'm learning from your writing what I should be doing. I've already told my three "kids" to get their stuff out of the basement and closets before I start to throw things away...I've also invited them to "shop" in the storage for the things I don't use anymore for company, etc. If they don't want the serving things I'm going to sell them on ebay or give them to a charity to sell. I've begun to pare down my clothing, shoes and handbags...eliminating all the things I used to wear only for work. I was amazed at the amount of things I no longer need. Good Will is getting an entire working wardrobe for some lucky ladies. I don't know how you can juggle moving and the Tx evaluation at the same time...just all the traveling would do me in. Your stories about your o2 adventures is amazing,..I use liquid o2 and never have had such trouble. Maybe you should look into that delivery system....It's reliable..needs no electricity and isn't noisy.The large -in house- tank lasts 8 days at 2-2.5. You might need more frequent fill ups. I can fill up portable Helios machines for going out..I take an extra if I plan to be away more than 5 hours ( I need 2-2.5 lpm) There is also in the car sized liquid tanks that last for 4 days at that rate...if you need more they give you another one and set up for refills at your destination. So far I've had no trouble. Please take care of yourself...don't do too much each day. You have to rest..I find everyother day activity/rest is good for me when possible. Having your son as a next door neighbor will be so comforting for you. Good luck on your move and with theTx evaluation and again TAKE CARE OF YOURSELF. Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley cbayjpw wrote: , Welcome to the group. Yes it is hard not to be able to do the physical things you used to do. But I have learned the hard way not to try to do too much. With my move coming up May 15th I have been really busy getting ready the last 6 weeks along with all the tests and doctor visits for my transplant evaluation. But I have learned the hard way that when I do too much I pay the price. One night I could not use my right hand at all. Thur. night this week I suddenly could not use my left hand. If you want to keep on living you have to accept the help of other people. A thing that can be frustrating though is those people out in the world who are so rude they will rush right by you when you are in an electric cart going into the grocery store or smokers who walk right up to you when you are using oxygen. Or people who continue to ask questions whether it is in person or on the phone after you told them you can't talk because you are too short of breath at that momemt. They just don't get it. Judy IPF 11/06 > > Hi everyone, my name is and I appreciate being a member of your > group. I was diagnosed just about 2 years ago now and went to rehab > and am continuing with what the hospital calls phase 3 where you have > a director, but take your own stats and write them into a sheet. It's > a nice group with people with different forms of COPD, unfortunately > I'm the only one with IPF so they don't feel like I do. After reading > some of the posts on this site I see others having the same problems > and feelings that I have so I can relate with them. I live in New > Hampshire in a mobile home in a park, it's a coop park and there are > many nice people here. I was the operations manager doing everything > for everyone, but now I can't do the physical stuff for them or > myself. It's hard seeing my wife trying to do a lot of the physical > things I used to do. Well just a little to introduce myself. > > God be with you all, > No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.467 / Virus Database: 269.6.4/790 - Release Date: 5/5/2007 10:34 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2007 Report Share Posted May 6, 2007 ...I want to comment on your post here. My husband does just about everything now...I do keep the house picked up (we're both clean people anyway) but he now vacuums and does all the 'heavier' work. He does all the shopping, 95% of the cooking and all the laundry. Which for us entails carrying it across a wide driveway to the laundry room. We live in an UPSTAIRS apt so he is up and down the stairs. And he is 76! Never a cross word or glance, never a complaint or long sigh. I am so blessed I have tears in my eyes as I write this. Plus he takes our little Lola up and down to potty. He is soon facing knee surgery and we will do the best we can for each other. I am so lucky! Hope today is a good one for you. Sher ipf 3-06 OR."Don't worry about tomorrow, God is already there" Re: Re: New to the group To all of the men in this group..You should know that your wives love you and only want to make things easier for you...I'm on the other side of the taking care situation. My husband does many of the things I used to do! He often does the wash and often shops for the big stuff and cooks too!!. I know how much I would prefer to do these things myself, but am so grateful that he does them for me. I can save my energy for my grand daughter and my kids. He had surgery this winter and felt guilty that he couldn't help as much and I did take on a bit too much, but that's what marriage is all about anyway!!! After almost 42 years we just do what needs to be done...we don't keep score...we just do it.I'm certain that you tell your wives how much you love them and appreciate their help..they do need to hear that once in a while...just a hint! Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob MarleyHarold wrote: > >> > Hi everyone, my name is and I appreciate being a member of your > > group. I was diagnosed just about 2 years ago now and went to rehab > > and am continuing with what the hospital calls phase 3 where you have > > a director, but take your own stats and write them into a sheet. It's > > a nice group with people with different forms of COPD, unfortunately > > I'm the only one with IPF so they don't feel like I do. After reading > > some of the posts on this site I see others having the same problems > > and feelings that I have so I can relate with them. I live in New > > Hampshire in a mobile home in a park, it's a coop park and there are > > many nice people here. I was the operations manager doing everything > > for everyone, but now I can't do the physical stuff for them or > > myself. It's hard seeing my wife trying to do a lot of the physical > > things I used to do. Well just a little to introduce myself.> > > > God be with you all, HCarson, sawman23us hey , I was told I had IPF in 2005 and we all on here know what u are going through.I don't get on here to much but I still read a lot of the post on here,I say a specal prayer every night for our group,just don't feel you are alone in this because there are a lot of good people on here that you can talk to and a lot of friends.I knowq what you mean when you said your wife does the things you use to do because my wife does that also. > >> No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.467 / Virus Database: 269.6.4/790 - Release Date: 5/5/2007 10:34 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2007 Report Share Posted May 6, 2007 Sher, We are both really fortunate to have such wonderful men in our lives. Living with our diseases would be so much more horrible if these great guys were not there for us. The steps are of course a problem for me...Mike is probably going to need knee replacement on at least one of his knees within the next year, so we're looking now for a one floor rancher in the area. You are definitely blessed!!!We both are! Hope your Sunday is wonderful!!! -- 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 --------- Re: Re: New to the group To all of the men in this group..You should know that your wives love you and only want to make things easier for you...I'm on the other side of the taking care situation. My husband does many of the things I used to do! He often does the wash and often shops for the big stuff and cooks too!!. I know how much I would prefer to do these things myself, but am so grateful that he does them for me. I can save my energy for my grand daughter and my kids. He had surgery this winter and felt guilty that he couldn't help as much and I did take on a bit too much, but that's what marriage is all about anyway!!! After almost 42 years we just do what needs to be done...we don't keep score...we just do it.I'm certain that you tell your wives how much you love them and appreciate their help..they do need to hear that once in a while...just a hint! Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob MarleyHarold wrote: > >> > Hi everyone, my name is and I a ppreciate being a member of your > > group. I was diagnosed just about 2 years ago now and went to rehab > > and am continuing with what the hospital calls phase 3 where you have > > a director, but take your own stats and write them into a sheet. It's > > a nice group with people with different forms of COPD, unfortunately > > I'm the only one with IPF so they don't feel like I do. After reading > > some of the posts on this site I see others having the same problems > > and feelings that I have so I can relate with them. I live in New > > Hampshire in a mobile home in a park, it's a coop park and there are > > many nice people here. I was the operations manager doing everything > > for everyone, but now I can't do the physical stuff for them or > > myself. It's hard seeing my wife trying to do a lot of the physical > > things I used to do. Well just a little to introduce myself.> > > > God be with you all, HCarson, sawman23us hey , I was told I had IPF in 2005 and we all on here know what u are going through.I don't get on here to much but I still read a lot of the post on here,I say a specal prayer every night for our group,just don't feel you are alone in this because there are a lot of good people on here that you can talk to and a lot of friends.I knowq what you mean when you said your wife does the things you use to do because my wife does that also. > >> No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.467 / Virus Database: 269.6.4/790 - Release Date: 5/5/2007 10:34 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2007 Report Share Posted May 7, 2007 Hi Joyce, I am on oxygen, when I first was diagnosed my doctor put me on just at night and when doing physical exertion. Now I use it all the time, 3 at night, 1 to 2 when on the tanks and 3 when exercising. I've done Yoga and Qi Gong for years and it keeps me flexable and focus my breathing. I don't take any meds for IPF just Lipitor, Toprol, Aciphex, alprazolam, Fluoxetine, and an aspirin. Those cover having had a heart attach in 99, reflux, depression, colosterol problems and hopefully that will cover it for a while. My doctor is involved in different studies, but the one going on now required me to be at 35 or higher and I only made 34, so didn't make the study. A coworker and friend from Barbados had a saying " WHO FEELS IT KNOWS IT " I never quite understood it, but now I get it, so I'll close for now, H. from New Hampshire. --- Joyce wrote: > > Hi and welcome to our group. I know it must be > so difficult for > men to deal with loss of strength, especially those > of you who are used > to doing carpentry, yard work, and 'man stuff'. > > Are you using oxygen yet? What medications are you > on? Have you had a > decline since being diagnosed or are you holding > steady? > > We are glad to have you here. When you post will > you sign off with your > name and last name initial. We have a couple of > other s. We also > add our diagnosis and state, but you don't have to. > I hope we can help > each other. That is why we are here. > > Hugs, Joyce D. > > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 > INDIANA > > > > > > > Hi everyone, my name is and I appreciate > being a member of your > > group. I was diagnosed just about 2 years ago now > and went to rehab > > and am continuing with what the hospital calls > phase 3 where you have > > a director, but take your own stats and write them > into a sheet. It's > > a nice group with people with different forms of > COPD, unfortunately > > I'm the only one with IPF so they don't feel like > I do. After reading > > some of the posts on this site I see others having > the same problems > > and feelings that I have so I can relate with > them. I live in New > > Hampshire in a mobile home in a park, it's a coop > park and there are > > many nice people here. I was the operations > manager doing everything > > for everyone, but now I can't do the physical > stuff for them or > > myself. It's hard seeing my wife trying to do a > lot of the physical > > things I used to do. Well just a little to > introduce myself. > > > > God be with you all, > > > > > ________________________________________________________________________________\ ____ We won't tell. Get more on shows you hate to love (and love to hate): Yahoo! TV's Guilty Pleasures list. http://tv.yahoo.com/collections/265 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2007 Report Share Posted May 7, 2007 H. I so agree with your friend..."WHO FEELS IT KNOWS IT!!!" That just about sums up all the sh-- we are going through...excuse the sort of curse word!!!! I also started out on o2 ( 2 lpm)at night and with exertion 22 months ago. . I now need o2 for most of the day and night except if I'm sitting and reading or watching TV . Even so, after about an hour I begin to feel SOB, I check my SAT number with the oximeter, and often find that the number has gone down below 90 and I put the stupid tubes back!!!!! Sorry...I'm a bit angry tonight and my words definitely show that emotion. Isn't it interesting that "Short of Breath" is SOB and it really is an SOB!!!! Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley Hidler wrote: Hi Joyce, I am on oxygen, when I first was diagnosed my doctor put me on just at night and when doing physical exertion. Now I use it all the time, 3 at night, 1 to 2 when on the tanks and 3 when exercising. I've done Yoga and Qi Gong for years and it keeps me flexable and focus my breathing. I don't take any meds for IPF just Lipitor, Toprol, Aciphex, alprazolam, Fluoxetine, and an aspirin. Those cover having had a heart attach in 99, reflux, depression, colosterol problems and hopefully that will cover it for a while. My doctor is involved in different studies, but the one going on now required me to be at 35 or higher and I only made 34, so didn't make the study. A coworker and friend from Barbados had a saying " WHO FEELS IT KNOWS IT " I never quite understood it, but now I get it, so I'll close for now, H. from New Hampshire. --- Joyce <janne5303> wrote: > > Hi and welcome to our group. I know it must be > so difficult for > men to deal with loss of strength, especially those > of you who are used > to doing carpentry, yard work, and 'man stuff'. > > Are you using oxygen yet? What medications are you > on? Have you had a > decline since being diagnosed or are you holding > steady? > > We are glad to have you here. When you post will > you sign off with your > name and last name initial. We have a couple of > other s. We also > add our diagnosis and state, but you don't have to. > I hope we can help > each other. That is why we are here. > > Hugs, Joyce D. > > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 > INDIANA > > > > > > > Hi everyone, my name is and I appreciate > being a member of your > > group. I was diagnosed just about 2 years ago now > and went to rehab > > and am continuing with what the hospital calls > phase 3 where you have > > a director, but take your own stats and write them > into a sheet. It's > > a nice group with people with different forms of > COPD, unfortunately > > I'm the only one with IPF so they don't feel like > I do. After reading > > some of the posts on this site I see others having > the same problems > > and feelings that I have so I can relate with > them. I live in New > > Hampshire in a mobile home in a park, it's a coop > park and there are > > many nice people here. I was the operations > manager doing everything > > for everyone, but now I can't do the physical > stuff for them or > > myself. It's hard seeing my wife trying to do a > lot of the physical > > things I used to do. Well just a little to > introduce myself. > > > > God be with you all, > > > > > __________________________________________________________ We won't tell. Get more on shows you hate to love (and love to hate): Yahoo! TV's Guilty Pleasures list. http://tv.yahoo.com/collections/265 No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.467 / Virus Database: 269.6.5/792 - Release Date: 5/6/2007 9:01 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2007 Report Share Posted May 9, 2007 Hi Z, I have to share this, being short of breath. I bought an adjustable bed a while back to help me sleep, it's the kind that vibrates. Well last night at 4 AM I woke up feeling squashed and shaken with a headache. It seems that the bed raised up to a sitting up position and began vibrating on the highest setting. I jumped out of bed and tried to get it to stop, it wouldn't so I unplugged it and used the emergency stop to lower it. I still had a wapper of a headache so I tested my sat level, it was low, I wasn't getting enough air so I used my emergency tank. After a few minutes my level went back up, I switched hoses and went back to the pump and my air was fine. Talk about SOB and " WHO FEELS IT KNOWS IT " . Have a better day today. --- linda zion wrote: > H. I so agree with your friend... " WHO FEELS > IT KNOWS IT!!! " > That just about sums up all the sh-- we are > going through...excuse > the sort of curse word!!!! I also started out on > o2 ( 2 lpm)at night > and with exertion 22 months ago. . I now need o2 > for most of the day > and night except if I'm sitting and reading or > watching TV . Even so, > after about an hour I begin to feel SOB, I check my > SAT number with the > oximeter, and often find that the number has gone > down below 90 and I > put the stupid tubes back!!!!! Sorry...I'm a bit > angry tonight and my > words definitely show that emotion. Isn't it > interesting that " Short of > Breath " is SOB and it really is an SOB!!!! > > > Z fibriotic NSIP/o5/PA > > > Potter, reader,carousel lover and MomMom to Darah > > > * " I'm gonna be iron like a lion in Zion " Bob > Marley* > > > > Hidler wrote: > > > Hi Joyce, > > I am on oxygen, when I first was diagnosed my > doctor > > put me on just at night and when doing physical > > exertion. Now I use it all the time, 3 at night, 1 > to > > 2 when on the tanks and 3 when exercising. I've > done > > Yoga and Qi Gong for years and it keeps me > flexable > > and focus my breathing. I don't take any meds for > IPF > > just Lipitor, Toprol, Aciphex, alprazolam, > Fluoxetine, > > and an aspirin. Those cover having had a heart > attach > > in 99, reflux, depression, colosterol problems and > > hopefully that will cover it for a while. My > doctor is > > involved in different studies, but the one going > on > > now required me to be at 35 or higher and I only > made > > 34, so didn't make the study. > > A coworker and friend from Barbados had a saying " > WHO > > FEELS IT KNOWS IT " I never quite understood it, > but > > now I get it, so I'll close for now, > > H. from New Hampshire. > > --- Joyce <janne5303@... > <mailto:janne5303%40yahoo.com>> wrote: > > > > > > > > Hi and welcome to our group. I know it must > be > > > so difficult for > > > men to deal with loss of strength, especially > those > > > of you who are used > > > to doing carpentry, yard work, and 'man stuff'. > > > > > > Are you using oxygen yet? What medications are > you > > > on? Have you had a > > > decline since being diagnosed or are you holding > > > steady? > > > > > > We are glad to have you here. When you post will > > > you sign off with your > > > name and last name initial. We have a couple of > > > other s. We also > > > add our diagnosis and state, but you don't have > to. > > > I hope we can help > > > each other. That is why we are here. > > > > > > Hugs, Joyce D. > > > > > > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS > 2004 > > > INDIANA > > > > > > > > > > > > > > > > > Hi everyone, my name is and I appreciate > > > being a member of your > > > > group. I was diagnosed just about 2 years ago > now > > > and went to rehab > > > > and am continuing with what the hospital calls > > > phase 3 where you have > > > > a director, but take your own stats and write > them > > > into a sheet. It's > > > > a nice group with people with different forms > of > > > COPD, unfortunately > > > > I'm the only one with IPF so they don't feel > like > > > I do. After reading > > > > some of the posts on this site I see others > having > > > the same problems > > > > and feelings that I have so I can relate with > > > them. I live in New > > > > Hampshire in a mobile home in a park, it's a > coop > > > park and there are > > > > many nice people here. I was the operations > > > manager doing everything > > > > for everyone, but now I can't do the physical > > > stuff for them or > > > > myself. It's hard seeing my wife trying to do > a > > > lot of the physical > > > > things I used to do. Well just a little to > > > introduce myself. > > > > > > > > God be with you all, > > > > > > > > > > > > > > > > > > __________________________________________________________ > > We won't tell. Get more on shows you hate to love > > (and love to hate): Yahoo! TV's Guilty Pleasures > list. > > http://tv.yahoo.com/collections/265 > <http://tv.yahoo.com/collections/265> > > > > > > > >------------------------------------------------------------------------ > > > >No virus found in this incoming message. > >Checked by AVG Free Edition. > >Version: 7.5.467 / Virus Database: 269.6.5/792 - > Release Date: 5/6/2007 9:01 PM > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2007 Report Share Posted May 9, 2007 Hi Z, I have to share this, being short of breath. I bought an adjustable bed a while back to help me sleep, it's the kind that vibrates. Well last night at 4 AM I woke up feeling squashed and shaken with a headache. It seems that the bed raised up to a sitting up position and began vibrating on the highest setting. I jumped out of bed and tried to get it to stop, it wouldn't so I unplugged it and used the emergency stop to lower it. I still had a wapper of a headache so I tested my sat level, it was low, I wasn't getting enough air so I used my emergency tank. After a few minutes my level went back up, I switched hoses and went back to the pump and my air was fine. Talk about SOB and " WHO FEELS IT KNOWS IT " . Have a better day today. H. from New Hampshire " WHO FEELS IT KNOWS IT " --- linda zion wrote: > H. I so agree with your friend... " WHO FEELS > IT KNOWS IT!!! " > That just about sums up all the sh-- we are > going through...excuse > the sort of curse word!!!! I also started out on > o2 ( 2 lpm)at night > and with exertion 22 months ago. . I now need o2 > for most of the day > and night except if I'm sitting and reading or > watching TV . Even so, > after about an hour I begin to feel SOB, I check my > SAT number with the > oximeter, and often find that the number has gone > down below 90 and I > put the stupid tubes back!!!!! Sorry...I'm a bit > angry tonight and my > words definitely show that emotion. Isn't it > interesting that " Short of > Breath " is SOB and it really is an SOB!!!! > > > Z fibriotic NSIP/o5/PA > > > Potter, reader,carousel lover and MomMom to Darah > > > * " I'm gonna be iron like a lion in Zion " Bob > Marley* > > > > Hidler wrote: > > > Hi Joyce, > > I am on oxygen, when I first was diagnosed my > doctor > > put me on just at night and when doing physical > > exertion. Now I use it all the time, 3 at night, 1 > to > > 2 when on the tanks and 3 when exercising. I've > done > > Yoga and Qi Gong for years and it keeps me > flexable > > and focus my breathing. I don't take any meds for > IPF > > just Lipitor, Toprol, Aciphex, alprazolam, > Fluoxetine, > > and an aspirin. Those cover having had a heart > attach > > in 99, reflux, depression, colosterol problems and > > hopefully that will cover it for a while. My > doctor is > > involved in different studies, but the one going > on > > now required me to be at 35 or higher and I only > made > > 34, so didn't make the study. > > A coworker and friend from Barbados had a saying " > WHO > > FEELS IT KNOWS IT " I never quite understood it, > but > > now I get it, so I'll close for now, > > H. from New Hampshire. > > --- Joyce <janne5303@... > <mailto:janne5303%40yahoo.com>> wrote: > > > > > > > > Hi and welcome to our group. I know it must > be > > > so difficult for > > > men to deal with loss of strength, especially > those > > > of you who are used > > > to doing carpentry, yard work, and 'man stuff'. > > > > > > Are you using oxygen yet? What medications are > you > > > on? Have you had a > > > decline since being diagnosed or are you holding > > > steady? > > > > > > We are glad to have you here. When you post will > > > you sign off with your > > > name and last name initial. We have a couple of > > > other s. We also > > > add our diagnosis and state, but you don't have > to. > > > I hope we can help > > > each other. That is why we are here. > > > > > > Hugs, Joyce D. > > > > > > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS > 2004 > > > INDIANA > > > > > > > > > > > > > > > > > Hi everyone, my name is and I appreciate > > > being a member of your > > > > group. I was diagnosed just about 2 years ago > now > > > and went to rehab > > > > and am continuing with what the hospital calls > > > phase 3 where you have > > > > a director, but take your own stats and write > them > > > into a sheet. It's > > > > a nice group with people with different forms > of > > > COPD, unfortunately > > > > I'm the only one with IPF so they don't feel > like > > > I do. After reading > > > > some of the posts on this site I see others > having > > > the same problems > > > > and feelings that I have so I can relate with > > > them. I live in New > > > > Hampshire in a mobile home in a park, it's a > coop > > > park and there are > > > > many nice people here. I was the operations > > > manager doing everything > > > > for everyone, but now I can't do the physical > > > stuff for them or > > > > myself. It's hard seeing my wife trying to do > a > > > lot of the physical > > > > things I used to do. Well just a little to > > > introduce myself. > > > > > > > > God be with you all, > > > > > > > > > > > > > > > > > > __________________________________________________________ > > We won't tell. Get more on shows you hate to love > > (and love to hate): Yahoo! TV's Guilty Pleasures > list. > > http://tv.yahoo.com/collections/265 > <http://tv.yahoo.com/collections/265> > > > > > > > >------------------------------------------------------------------------ > > > >No virus found in this incoming message. > >Checked by AVG Free Edition. > >Version: 7.5.467 / Virus Database: 269.6.5/792 - > Release Date: 5/6/2007 9:01 PM > > > > > ________________________________________________________________________________\ ____ Never miss an email again! Yahoo! Toolbar alerts you the instant new Mail arrives. http://tools.search.yahoo.com/toolbar/features/mail/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2007 Report Share Posted May 9, 2007 Howdy , Welcome to the group. But hate the reason you had to seek us out. But you are amongst a group of very caring, wonderful and well informed people battling the same Monster. I don't do a lot of posting in here, but I read in here a whole lot. Much information and tons of strength are gleaned from reading the posts provided by our fellow members. I appreciate everyone in here for their strength of will and character, for their compassion and unwavering desire to share what they can with others young and old, new member or not. Wally Holmesly nsip 10/06 west Texas Hidler wrote: Hi Z, I have to share this, being short of breath. I boughtan adjustable bed a while back to help me sleep, it'sthe kind that vibrates. Well last night at 4 AM I wokeup feeling squashed and shaken with a headache. Itseems that the bed raised up to a sitting up positionand began vibrating on the highest setting. I jumpedout of bed and tried to get it to stop, it wouldn't soI unplugged it and used the emergency stop to lowerit. I still had a wapper of a headache so I tested mysat level, it was low, I wasn't getting enough air soI used my emergency tank. After a few minutes my levelwent back up, I switched hoses and went back to thepump and my air was fine. Talk about SOB and " WHOFEELS IT KNOWS IT ". Have a better day today. H. from New Hampshire" WHO FEELS IT KNOWS IT "--- linda zion <ljz741comcast (DOT) net> wrote:> H. I so agree with your friend..."WHO FEELS> IT KNOWS IT!!!" > That just about sums up all the sh-- we are> going through...excuse > the sort of curse word!!!! I also started out on> o2 ( 2 lpm)at night > and with exertion 22 months ago. . I now need o2> for most of the day > and night except if I'm sitting and reading or> watching TV . Even so, > after about an hour I begin to feel SOB, I check my> SAT number with the > oximeter, and often find that the number has gone> down below 90 and I > put the stupid tubes back!!!!! Sorry...I'm a bit> angry tonight and my > words definitely show that emotion. Isn't it> interesting that "Short of > Breath" is SOB and it really is an SOB!!!!> > > Z fibriotic NSIP/o5/PA > > > Potter, reader,carousel lover and MomMom to Darah > > > *"I'm gonna be iron like a lion in Zion" Bob> Marley*> > > > Hidler wrote:> > > Hi Joyce,> > I am on oxygen, when I first was diagnosed my> doctor> > put me on just at night and when doing physical> > exertion. Now I use it all the time, 3 at night, 1> to> > 2 when on the tanks and 3 when exercising. I've> done> > Yoga and Qi Gong for years and it keeps me> flexable> > and focus my breathing. I don't take any meds for> IPF> > just Lipitor, Toprol, Aciphex, alprazolam,> Fluoxetine,> > and an aspirin. Those cover having had a heart> attach> > in 99, reflux, depression, colosterol problems and> > hopefully that will cover it for a while. My> doctor is> > involved in different studies, but the one going> on> > now required me to be at 35 or higher and I only> made> > 34, so didn't make the study.> > A coworker and friend from Barbados had a saying "> WHO> > FEELS IT KNOWS IT " I never quite understood it,> but> > now I get it, so I'll close for now,> > H. from New Hampshire.> > --- Joyce <janne5303> <mailto:janne5303%40yahoo.com>> wrote:> >> > >> > > Hi and welcome to our group. I know it must> be> > > so difficult for> > > men to deal with loss of strength, especially> those> > > of you who are used> > > to doing carpentry, yard work, and 'man stuff'.> > >> > > Are you using oxygen yet? What medications are> you> > > on? Have you had a> > > decline since being diagnosed or are you holding> > > steady?> > >> > > We are glad to have you here. When you post will> > > you sign off with your> > > name and last name initial. We have a couple of> > > other s. We also> > > add our diagnosis and state, but you don't have> to.> > > I hope we can help> > > each other. That is why we are here.> > >> > > Hugs, Joyce D.> > >> > > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS> 2004> > > INDIANA> > >> > >> > > > > > >> > > > Hi everyone, my name is and I appreciate> > > being a member of your> > > > group. I was diagnosed just about 2 years ago> now> > > and went to rehab> > > > and am continuing with what the hospital calls> > > phase 3 where you have> > > > a director, but take your own stats and write> them> > > into a sheet. It's> > > > a nice group with people with different forms> of> > > COPD, unfortunately> > > > I'm the only one with IPF so they don't feel> like> > > I do. After reading> > > > some of the posts on this site I see others> having> > > the same problems> > > > and feelings that I have so I can relate with> > > them. I live in New> > > > Hampshire in a mobile home in a park, it's a> coop> > > park and there are> > > > many nice people here. I was the operations> > > manager doing everything> > > > for everyone, but now I can't do the physical> > > stuff for them or> > > > myself. It's hard seeing my wife trying to do> a> > > lot of the physical> > > > things I used to do. Well just a little to> > > introduce myself.> > > >> > > > God be with you all, > > > >> > >> > >> > >> >> >>__________________________________________________________> > We won't tell. Get more on shows you hate to love> > (and love to hate): Yahoo! TV's Guilty Pleasures> list.> > http://tv.yahoo.com/collections/265> <http://tv.yahoo.com/collections/265>> >> > > >>>----------------------------------------------------------> >> >No virus found in this incoming message.> >Checked by AVG Free Edition. > >Version: 7.5.467 / Virus Database: 269.6.5/792 -> Release Date: 5/6/2007 9:01 PM> > > >> __________________________________________________________Never miss an email again!Yahoo! Toolbar alerts you the instant new Mail arrives.http://tools.search.yahoo.com/toolbar/features/mail/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2007 Report Share Posted May 11, 2007 Hi Wally, I've only been on a short time, but this group has really made a difference for me. When you go to support groups for COPD and nobody has IPF you don't learn the things you learn with this group. One example talking and becoming short of breath, until I joined this group I didn't know it happens to all of us. Now I let people know right off talking takes my breath away. H. from New Hampshire 4/06 " WHO KNOWS IT FEELS IT " --- WALLY HOLMESLY wrote: > Howdy , > > Welcome to the group. But hate the reason you had > to seek us out. But you are amongst a group of very > caring, wonderful and well informed people battling > the same Monster. I don't do a lot of posting in > here, but I read in here a whole lot. Much > information and tons of strength are gleaned from > reading the posts provided by our fellow members. I > appreciate everyone in here for their strength of > will and character, for their compassion and > unwavering desire to share what they can with others > young and old, new member or not. > > Wally Holmesly nsip 10/06 west Texas > > > Hidler wrote: > Hi Z, > I have to share this, being short of breath. I > bought > an adjustable bed a while back to help me sleep, > it's > the kind that vibrates. Well last night at 4 AM I > woke > up feeling squashed and shaken with a headache. It > seems that the bed raised up to a sitting up > position > and began vibrating on the highest setting. I jumped > out of bed and tried to get it to stop, it wouldn't > so > I unplugged it and used the emergency stop to lower > it. I still had a wapper of a headache so I tested > my > sat level, it was low, I wasn't getting enough air > so > I used my emergency tank. After a few minutes my > level > went back up, I switched hoses and went back to the > pump and my air was fine. Talk about SOB and " WHO > FEELS IT KNOWS IT " . Have a better day today. > H. from New Hampshire > " WHO FEELS IT KNOWS IT " > --- linda zion wrote: > > > H. I so agree with your friend... " WHO FEELS > > IT KNOWS IT!!! " > > That just about sums up all the sh-- we are > > going through...excuse > > the sort of curse word!!!! I also started out on > > o2 ( 2 lpm)at night > > and with exertion 22 months ago. . I now need o2 > > for most of the day > > and night except if I'm sitting and reading or > > watching TV . Even so, > > after about an hour I begin to feel SOB, I check > my > > SAT number with the > > oximeter, and often find that the number has gone > > down below 90 and I > > put the stupid tubes back!!!!! Sorry...I'm a bit > > angry tonight and my > > words definitely show that emotion. Isn't it > > interesting that " Short of > > Breath " is SOB and it really is an SOB!!!! > > > > > > Z fibriotic NSIP/o5/PA > > > > > > Potter, reader,carousel lover and MomMom to Darah > > > > > > * " I'm gonna be iron like a lion in Zion " Bob > > Marley* > > > > > > > > Hidler wrote: > > > > > Hi Joyce, > > > I am on oxygen, when I first was diagnosed my > > doctor > > > put me on just at night and when doing physical > > > exertion. Now I use it all the time, 3 at night, > 1 > > to > > > 2 when on the tanks and 3 when exercising. I've > > done > > > Yoga and Qi Gong for years and it keeps me > > flexable > > > and focus my breathing. I don't take any meds > for > > IPF > > > just Lipitor, Toprol, Aciphex, alprazolam, > > Fluoxetine, > > > and an aspirin. Those cover having had a heart > > attach > > > in 99, reflux, depression, colosterol problems > and > > > hopefully that will cover it for a while. My > > doctor is > > > involved in different studies, but the one going > > on > > > now required me to be at 35 or higher and I only > > made > > > 34, so didn't make the study. > > > A coworker and friend from Barbados had a saying > " > > WHO > > > FEELS IT KNOWS IT " I never quite understood it, > > but > > > now I get it, so I'll close for now, > > > H. from New Hampshire. > > > --- Joyce <janne5303@... > > <mailto:janne5303%40yahoo.com>> wrote: > > > > > > > > > > > Hi and welcome to our group. I know it > must > > be > > > > so difficult for > > > > men to deal with loss of strength, especially > > those > > > > of you who are used > > > > to doing carpentry, yard work, and 'man > stuff'. > > > > > > > > Are you using oxygen yet? What medications are > > you > > > > on? Have you had a > > > > decline since being diagnosed or are you > holding > > > > steady? > > > > > > > > We are glad to have you here. When you post > will > > > > you sign off with your > > > > name and last name initial. We have a couple > of > > > > other s. We also > > > > add our diagnosis and state, but you don't > have > > to. > > > > I hope we can help > > > > each other. That is why we are here. > > > > > > > > Hugs, Joyce D. > > > > > > > > PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS > > 2004 > > > > INDIANA > > > > > > > > > > > > > > > > > > > > > > Hi everyone, my name is and I > appreciate > > > > being a member of your > > > > > group. I was diagnosed just about 2 years > ago > > now > > > > and went to rehab > > > > > and am continuing with what the hospital > calls > > > > phase 3 where you have > > > > > a director, but take your own stats and > write > > them > > > > into a sheet. It's > > > > > a nice group with people with different > forms > > of > > > > COPD, unfortunately > > > > > I'm the only one with IPF so they don't feel > > like > > > > I do. After reading > > > > > some of the posts on this site I see others > > having > > > > the same problems > > > > > and feelings that I have so I can relate > with > > > > them. I live in New > > > > > Hampshire in a mobile home in a park, it's a > > coop > > > > park and there are > > > > > many nice people here. I was the operations > > > > manager doing everything > > > > > for everyone, but now I can't do the > physical > > > > stuff for them or > > > > > myself. It's hard seeing my wife trying to > do > > a > > > > lot of the physical > > > > > things I used to do. Well just a little to > > > > introduce myself. > > > > > > === message truncated === ________________________________________________________________________________\ ____ Food fight? Enjoy some healthy debate in the Yahoo! Answers Food & Drink Q & A. http://answers.yahoo.com/dir/?link=list & sid=396545367 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2007 Report Share Posted May 11, 2007 linda--when i moved last year, I called fox chase cancer center--marilyn fein--they came to the house and picked up all my stuff, in fact, i called them a few times and once even after the move pink linda zion wrote: Judy, I've been reading all your posts in regard to you upcoming move. Mike and I are seriously looking to move into a ranch style house from our two story very soon. I'm learning from your writing what I should be doing. I've already told my three "kids" to get their stuff out of the basement and closets before I start to throw things away...I've also invited them to "shop" in the storage for the things I don't use anymore for company, etc. If they don't want the serving things I'm going to sell them on ebay or give them to a charity to sell. I've begun to pare down my clothing, shoes and handbags...eliminating all the things I used to wear only for work. I was amazed at the amount of things I no longer need. Good Will is getting an entire working wardrobe for some lucky ladies. I don't know how you can juggle moving and the Tx evaluation at the same time...just all the traveling would do me in. Your stories about your o2 adventures is amazing,..I use liquid o2 and never have had such trouble. Maybe you should look into that delivery system....It's reliable..needs no electricity and isn't noisy.The large -in house- tank lasts 8 days at 2-2.5. You might need more frequent fill ups. I can fill up portable Helios machines for going out..I take an extra if I plan to be away more than 5 hours ( I need 2-2.5 lpm) There is also in the car sized liquid tanks that last for 4 days at that rate...if you need more they give you another one and set up for refills at your destination.So far I've had no trouble. Please take care of yourself...don't do too much each day. You have to rest..I find everyother day activity/rest is good for me when possible.Having your son as a next door neighbor will be so comforting for you. Good luck on your move and with theTx evaluation and again TAKE CARE OF YOURSELF. Z fibriotic NSIP/o5/PA Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marleycbayjpw wrote: , Welcome to the group. Yes it is hard not to be able to do the physical things you used to do. But I have learned the hard way not to try to do too much. With my move coming up May 15th I have been really busy getting ready the last 6 weeks along with all the tests and doctor visits for my transplant evaluation. But I have learned the hard way that when I do too much I pay the price. One night I could not use my right hand at all. Thur. night this week I suddenly could not use my left hand. If you want to keep on living you have to accept the help of other people. A thing that can be frustrating though is those people out in the world who are so rude they will rush right by you when you are in an electric cart going into the grocery store or smokers who walk right up to you when you are using oxygen. Or people who continue to ask questions whether it is in person or on the phone after you told them you can't talk because you are too short of breath at that momemt. They just don't get it.Judy IPF 11/06>> Hi everyone, my name is and I appreciate being a member of your > group. I was diagnosed just about 2 years ago now and went to rehab > and am continuing with what the hospital calls phase 3 where you have > a director, but take your own stats and write them into a sheet. It's > a nice group with people with different forms of COPD, unfortunately > I'm the only one with IPF so they don't feel like I do. After reading > some of the posts on this site I see others having the same problems > and feelings that I have so I can relate with them. I live in New > Hampshire in a mobile home in a park, it's a coop park and there are > many nice people here. I was the operations manager doing everything > for everyone, but now I can't do the physical stuff for them or > myself. It's hard seeing my wife trying to do a lot of the physical > things I used to do. Well just a little to introduce myself.> > God be with you all, > No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.467 / Virus Database: 269.6.4/790 - Release Date: 5/5/2007 10:34 AM Pink Joyce IPF 3/06 Pennslvania You snooze, you lose. Get messages ASAP with AutoCheck in the all-new Yahoo! Mail Beta. Quote Link to comment Share on other sites More sharing options...
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