Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Pink...I'm known to be pretty blunt at times and not to mince words...Guess that's why I'm 'mamasher'...;o) I love each person here and really care how they do. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Beth- I meant by becoming an invalid that I could only be away from home for a couple of hours and then had to return home. I did not mean to imply that oxygen made you an invalid. I will keepp after my supplier. I have no intentions of letting this condition stand but I can do no more then request for a better portable until I return from Jewish because I can't leave them until I return. And, I don't feel oxygen makes you an invalid. It's the restriction of time that I was refering too. As to my 'denial" I don't know what to say. I keep thinking I must have cheated on the pulmonary tests or something. Yet, I was sitting without oxygen for a long time and took my O2 and it was only at 91. If National Jewish says I have it then I will believe. I am really really upset that I have this disease. For the past 10 years my life has been so wonderful and I wanted it to continure until I am 100 and died in my sleep. during that time I had noticed that things were getting harder and harder to do and gave up on doing many things but I just thought I was lazy. I am fat and thought that was the problem and that I was lazy. When bringing the groceries from the car to the house became a prolem I bought a wagon and called my self a lazy fat slob but then putting them away becamje a problem I called myslef lazy again. I am sorry if I hurt your feelings. Joyce Rudy AZ IPF 11-08 Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Beth- I meant by becoming an invalid that I could only be away from home for a couple of hours and then had to return home. I did not mean to imply that oxygen made you an invalid. I will keepp after my supplier. I have no intentions of letting this condition stand but I can do no more then request for a better portable until I return from Jewish because I can't leave them until I return. And, I don't feel oxygen makes you an invalid. It's the restriction of time that I was refering too. As to my 'denial" I don't know what to say. I keep thinking I must have cheated on the pulmonary tests or something. Yet, I was sitting without oxygen for a long time and took my O2 and it was only at 91. If National Jewish says I have it then I will believe. I am really really upset that I have this disease. For the past 10 years my life has been so wonderful and I wanted it to continure until I am 100 and died in my sleep. during that time I had noticed that things were getting harder and harder to do and gave up on doing many things but I just thought I was lazy. I am fat and thought that was the problem and that I was lazy. When bringing the groceries from the car to the house became a prolem I bought a wagon and called my self a lazy fat slob but then putting them away becamje a problem I called myslef lazy again. I am sorry if I hurt your feelings. Joyce Rudy AZ IPF 11-08 Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Beth- I meant by becoming an invalid that I could only be away from home for a couple of hours and then had to return home. I did not mean to imply that oxygen made you an invalid. I will keepp after my supplier. I have no intentions of letting this condition stand but I can do no more then request for a better portable until I return from Jewish because I can't leave them until I return. And, I don't feel oxygen makes you an invalid. It's the restriction of time that I was refering too. As to my 'denial" I don't know what to say. I keep thinking I must have cheated on the pulmonary tests or something. Yet, I was sitting without oxygen for a long time and took my O2 and it was only at 91. If National Jewish says I have it then I will believe. I am really really upset that I have this disease. For the past 10 years my life has been so wonderful and I wanted it to continure until I am 100 and died in my sleep. during that time I had noticed that things were getting harder and harder to do and gave up on doing many things but I just thought I was lazy. I am fat and thought that was the problem and that I was lazy. When bringing the groceries from the car to the house became a prolem I bought a wagon and called my self a lazy fat slob but then putting them away becamje a problem I called myslef lazy again. I am sorry if I hurt your feelings. Joyce Rudy AZ IPF 11-08 Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Joyce, You did not hurt my feelings, I am just concerned that you have a somewhat distorted image of what your life has to be like on oxygen. I would encourage you to keep after your O2 supplier as you said. But keep after them in a very specific way. Tell them; "I'm away from home for 6 (or whatever it is) hours every day. I need a way to be supplied with oxygen while I'm out of the house." As Bruce pointed out any supplier can get lrger portables as the manufacturer makes all sizes. Or another option is to switch to compressed O2 in tanks and you can take as many tanks with you as you will need for the day. I do understand about denial but you did not 'cheat' on your pulmonary function test. That makes no sense at all. If you do or you don't have fibrosis, the specialists at Jewish will be able to tell you that. I hope that at that time you will be able to begin to work through the denial and move forward to claim the rest of your life. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Saturday, March 7, 2009 1:44:26 PMSubject: Re: Oxygen Beth- I meant by becoming an invalid that I could only be away from home for a couple of hours and then had to return home. I did not mean to imply that oxygen made you an invalid. I will keepp after my supplier. I have no intentions of letting this condition stand but I can do no more then request for a better portable until I return from Jewish because I can't leave them until I return. And, I don't feel oxygen makes you an invalid. It's the restriction of time that I was refering too. As to my 'denial" I don't know what to say. I keep thinking I must have cheated on the pulmonary tests or something. Yet, I was sitting without oxygen for a long time and took my O2 and it was only at 91. If National Jewish says I have it then I will believe. I am really really upset that I have this disease. For the past 10 years my life has been so wonderful and I wanted it to continure until I am 100 and died in my sleep. during that time I had noticed that things were getting harder and harder to do and gave up on doing many things but I just thought I was lazy. I am fat and thought that was the problem and that I was lazy. When bringing the groceries from the car to the house became a prolem I bought a wagon and called my self a lazy fat slob but then putting them away becamje a problem I called myslef lazy again. I am sorry if I hurt your feelings. Joyce Rudy AZ IPF 11-08 Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Joyce, You did not hurt my feelings, I am just concerned that you have a somewhat distorted image of what your life has to be like on oxygen. I would encourage you to keep after your O2 supplier as you said. But keep after them in a very specific way. Tell them; "I'm away from home for 6 (or whatever it is) hours every day. I need a way to be supplied with oxygen while I'm out of the house." As Bruce pointed out any supplier can get lrger portables as the manufacturer makes all sizes. Or another option is to switch to compressed O2 in tanks and you can take as many tanks with you as you will need for the day. I do understand about denial but you did not 'cheat' on your pulmonary function test. That makes no sense at all. If you do or you don't have fibrosis, the specialists at Jewish will be able to tell you that. I hope that at that time you will be able to begin to work through the denial and move forward to claim the rest of your life. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Saturday, March 7, 2009 1:44:26 PMSubject: Re: Oxygen Beth- I meant by becoming an invalid that I could only be away from home for a couple of hours and then had to return home. I did not mean to imply that oxygen made you an invalid. I will keepp after my supplier. I have no intentions of letting this condition stand but I can do no more then request for a better portable until I return from Jewish because I can't leave them until I return. And, I don't feel oxygen makes you an invalid. It's the restriction of time that I was refering too. As to my 'denial" I don't know what to say. I keep thinking I must have cheated on the pulmonary tests or something. Yet, I was sitting without oxygen for a long time and took my O2 and it was only at 91. If National Jewish says I have it then I will believe. I am really really upset that I have this disease. For the past 10 years my life has been so wonderful and I wanted it to continure until I am 100 and died in my sleep. during that time I had noticed that things were getting harder and harder to do and gave up on doing many things but I just thought I was lazy. I am fat and thought that was the problem and that I was lazy. When bringing the groceries from the car to the house became a prolem I bought a wagon and called my self a lazy fat slob but then putting them away becamje a problem I called myslef lazy again. I am sorry if I hurt your feelings. Joyce Rudy AZ IPF 11-08 Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Joyce, You did not hurt my feelings, I am just concerned that you have a somewhat distorted image of what your life has to be like on oxygen. I would encourage you to keep after your O2 supplier as you said. But keep after them in a very specific way. Tell them; "I'm away from home for 6 (or whatever it is) hours every day. I need a way to be supplied with oxygen while I'm out of the house." As Bruce pointed out any supplier can get lrger portables as the manufacturer makes all sizes. Or another option is to switch to compressed O2 in tanks and you can take as many tanks with you as you will need for the day. I do understand about denial but you did not 'cheat' on your pulmonary function test. That makes no sense at all. If you do or you don't have fibrosis, the specialists at Jewish will be able to tell you that. I hope that at that time you will be able to begin to work through the denial and move forward to claim the rest of your life. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Saturday, March 7, 2009 1:44:26 PMSubject: Re: Oxygen Beth- I meant by becoming an invalid that I could only be away from home for a couple of hours and then had to return home. I did not mean to imply that oxygen made you an invalid. I will keepp after my supplier. I have no intentions of letting this condition stand but I can do no more then request for a better portable until I return from Jewish because I can't leave them until I return. And, I don't feel oxygen makes you an invalid. It's the restriction of time that I was refering too. As to my 'denial" I don't know what to say. I keep thinking I must have cheated on the pulmonary tests or something. Yet, I was sitting without oxygen for a long time and took my O2 and it was only at 91. If National Jewish says I have it then I will believe. I am really really upset that I have this disease. For the past 10 years my life has been so wonderful and I wanted it to continure until I am 100 and died in my sleep. during that time I had noticed that things were getting harder and harder to do and gave up on doing many things but I just thought I was lazy. I am fat and thought that was the problem and that I was lazy. When bringing the groceries from the car to the house became a prolem I bought a wagon and called my self a lazy fat slob but then putting them away becamje a problem I called myslef lazy again. I am sorry if I hurt your feelings. Joyce Rudy AZ IPF 11-08 Oxygen I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF!Joyce AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 You refer to the last ten years. They're done. Now think of today and the rest of life and make it the best you can. I can honestly say that the last 21 months of my life has been among the best periods of my life. It can be. Oxygen is my enabler to be able to do that. I live each day as full as I can. I live each year literally as if it's my last. I plan those things I don't want to not get in and I do them. I do make decisions based on the realities. That's why my lease on the house and I are going to get has a clause allowing her to terminate it if I die. Thats also why I'm not focused on my finances at 65 knowing I probably won't make it, but thinking of what does the most for my quality of life today. Yes, there are obstacles we face. But we either say we'll find a way to overcome them or we give up on life. MB is one of the best examples I know. Her entire life was uprooted and she relocated and found herself there without insurance and yet she found a way to overcome it all. Having met her, I only wish I lived closer. We had a great lunch together but I'm sure we could juice up with oxygen and enjoy so many things in the NC area if I lived there. Follow people like her. When I first joined, the first person I met in person with PF was Gwynne. She was quite an example and model and mentor. When I saw this beautiful lady going to all the trouble to get dolled up and out to meet me for lunch even though she was much further advanced than me, I respected that and said, " this is how I want to be " . I heard her talk about her still busy schedule and lunch with friends and such. My first trip on oxygen was a short one to Tulsa for a couple of days. I had encountered an ER trip just a few weeks before. There were many excuses not to go. But I knew two things. First, if Gwynne was still going I certainly could. Two, if I found excuses this early not to go, I'd never do anything. Excuses would always be there. I honestly felt like if I backed out I'd be insulting her, someone further alone and making no excuses. Once I made Tulsa then so many others followed right behind. MB and Leanne and I sort of joked about our traveling competition. But, more, it was reminder to each of us and incentive to keep going. They were two more members I chose to imitate. There are only two things that will stop me from doing what I want to enjoy today. First, I will not expose myself to sick people and germs. Second, shortage of money. Otherwise, I can and will do it. > > Beth- I meant by becoming an invalid that I could only be away from home for a couple of hours and then had to return home. I did not mean to imply that oxygen made you an invalid. I will keepp after my supplier. I have no intentions of letting this condition stand but I can do no more then request for a better portable until I return from Jewish because I can't leave them until I return. And, I don't feel oxygen makes you an invalid. It's the restriction of time that I was refering too. As to my 'denial " I don't know what to say. I keep thinking I must have cheated on the pulmonary tests or something. Yet, I was sitting without oxygen for a long time and took my O2 and it was only at 91. If National Jewish says I have it then I will believe. I am really really upset that I have this disease. For the past 10 years my life has been so wonderful and I wanted it to continure until I am 100 and died in my sleep. during that time I had noticed that things were getting harder and harder to do and gave up on doing many things but I just thought I was lazy. I am fat and thought that was the problem and that I was lazy. When bringing the groceries from the car to the house became a prolem I bought a wagon and called my self a lazy fat slob but then putting them away becamje a problem I called myslef lazy again. I am sorry if I hurt your feelings. Joyce Rudy AZ IPF 11-08 > Oxygen > > > I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF! > > Joyce AZ IPF 11-08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 You refer to the last ten years. They're done. Now think of today and the rest of life and make it the best you can. I can honestly say that the last 21 months of my life has been among the best periods of my life. It can be. Oxygen is my enabler to be able to do that. I live each day as full as I can. I live each year literally as if it's my last. I plan those things I don't want to not get in and I do them. I do make decisions based on the realities. That's why my lease on the house and I are going to get has a clause allowing her to terminate it if I die. Thats also why I'm not focused on my finances at 65 knowing I probably won't make it, but thinking of what does the most for my quality of life today. Yes, there are obstacles we face. But we either say we'll find a way to overcome them or we give up on life. MB is one of the best examples I know. Her entire life was uprooted and she relocated and found herself there without insurance and yet she found a way to overcome it all. Having met her, I only wish I lived closer. We had a great lunch together but I'm sure we could juice up with oxygen and enjoy so many things in the NC area if I lived there. Follow people like her. When I first joined, the first person I met in person with PF was Gwynne. She was quite an example and model and mentor. When I saw this beautiful lady going to all the trouble to get dolled up and out to meet me for lunch even though she was much further advanced than me, I respected that and said, " this is how I want to be " . I heard her talk about her still busy schedule and lunch with friends and such. My first trip on oxygen was a short one to Tulsa for a couple of days. I had encountered an ER trip just a few weeks before. There were many excuses not to go. But I knew two things. First, if Gwynne was still going I certainly could. Two, if I found excuses this early not to go, I'd never do anything. Excuses would always be there. I honestly felt like if I backed out I'd be insulting her, someone further alone and making no excuses. Once I made Tulsa then so many others followed right behind. MB and Leanne and I sort of joked about our traveling competition. But, more, it was reminder to each of us and incentive to keep going. They were two more members I chose to imitate. There are only two things that will stop me from doing what I want to enjoy today. First, I will not expose myself to sick people and germs. Second, shortage of money. Otherwise, I can and will do it. > > Beth- I meant by becoming an invalid that I could only be away from home for a couple of hours and then had to return home. I did not mean to imply that oxygen made you an invalid. I will keepp after my supplier. I have no intentions of letting this condition stand but I can do no more then request for a better portable until I return from Jewish because I can't leave them until I return. And, I don't feel oxygen makes you an invalid. It's the restriction of time that I was refering too. As to my 'denial " I don't know what to say. I keep thinking I must have cheated on the pulmonary tests or something. Yet, I was sitting without oxygen for a long time and took my O2 and it was only at 91. If National Jewish says I have it then I will believe. I am really really upset that I have this disease. For the past 10 years my life has been so wonderful and I wanted it to continure until I am 100 and died in my sleep. during that time I had noticed that things were getting harder and harder to do and gave up on doing many things but I just thought I was lazy. I am fat and thought that was the problem and that I was lazy. When bringing the groceries from the car to the house became a prolem I bought a wagon and called my self a lazy fat slob but then putting them away becamje a problem I called myslef lazy again. I am sorry if I hurt your feelings. Joyce Rudy AZ IPF 11-08 > Oxygen > > > I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF! > > Joyce AZ IPF 11-08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Joyce, Like many folks on here, I too need oxygen to get out and about and do things that I have always done. I have now been on O2 24/7 since Jan. 2008. My needs have recently increased. Despite all this, I am still getting around as well as ever. Being on O2 has not prevented me from going to DisneyWorld for a week this past December, or going away for overnights or long weekends. This coming week I am going to accompany my wife to a 4 day conference in Saratoga Springs, NY. My O2 provider has been incredibly helpful in making all of this possible. I have a large tank for liquid oxygen from which I refill my Helios portable unit. I now also have a smaller tank that I can take in the car with me to refill when I am going to be away from home for a full day, or even one or two nights. Anything more than that and they arrange for the appropriate equipment to be at my destination. All of this is to echo what others have said - if the O2 has been prescribed for you, then it is vitally important to your good health! What ever your needs, your supplier should, and based on your prescription, must, make sure those needs are met. It can be done, so just don't take no for an answer. My Helios portable can last me for up to 12 hours, and has. You will be surprised at how quickly you will get used to the O2 and get to look at it as a friend, not an imposition. Remember, it ENABLES, it doesn't DISABLE. Steve aka...Knip IPF Dx 9/07 confirmed via VATS 12/07 57 New Hampshire > > Beth- I meant by becoming an invalid that I could only be away from home for a couple of hours and then had to return home. I did not mean to imply that oxygen made you an invalid. I will keepp after my supplier. I have no intentions of letting this condition stand but I can do no more then request for a better portable until I return from Jewish because I can't leave them until I return. And, I don't feel oxygen makes you an invalid. It's the restriction of time that I was refering too. As to my 'denial " I don't know what to say. I keep thinking I must have cheated on the pulmonary tests or something. Yet, I was sitting without oxygen for a long time and took my O2 and it was only at 91. If National Jewish says I have it then I will believe. I am really really upset that I have this disease. For the past 10 years my life has been so wonderful and I wanted it to continure until I am 100 and died in my sleep. during that time I had noticed that things were getting harder and harder to do and gave up on doing many things but I just thought I was lazy. I am fat and thought that was the problem and that I was lazy. When bringing the groceries from the car to the house became a prolem I bought a wagon and called my self a lazy fat slob but then putting them away becamje a problem I called myslef lazy again. I am sorry if I hurt your feelings. Joyce Rudy AZ IPF 11-08 > Oxygen > > > I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF! > > Joyce AZ IPF 11-08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Joyce, Like many folks on here, I too need oxygen to get out and about and do things that I have always done. I have now been on O2 24/7 since Jan. 2008. My needs have recently increased. Despite all this, I am still getting around as well as ever. Being on O2 has not prevented me from going to DisneyWorld for a week this past December, or going away for overnights or long weekends. This coming week I am going to accompany my wife to a 4 day conference in Saratoga Springs, NY. My O2 provider has been incredibly helpful in making all of this possible. I have a large tank for liquid oxygen from which I refill my Helios portable unit. I now also have a smaller tank that I can take in the car with me to refill when I am going to be away from home for a full day, or even one or two nights. Anything more than that and they arrange for the appropriate equipment to be at my destination. All of this is to echo what others have said - if the O2 has been prescribed for you, then it is vitally important to your good health! What ever your needs, your supplier should, and based on your prescription, must, make sure those needs are met. It can be done, so just don't take no for an answer. My Helios portable can last me for up to 12 hours, and has. You will be surprised at how quickly you will get used to the O2 and get to look at it as a friend, not an imposition. Remember, it ENABLES, it doesn't DISABLE. Steve aka...Knip IPF Dx 9/07 confirmed via VATS 12/07 57 New Hampshire > > Beth- I meant by becoming an invalid that I could only be away from home for a couple of hours and then had to return home. I did not mean to imply that oxygen made you an invalid. I will keepp after my supplier. I have no intentions of letting this condition stand but I can do no more then request for a better portable until I return from Jewish because I can't leave them until I return. And, I don't feel oxygen makes you an invalid. It's the restriction of time that I was refering too. As to my 'denial " I don't know what to say. I keep thinking I must have cheated on the pulmonary tests or something. Yet, I was sitting without oxygen for a long time and took my O2 and it was only at 91. If National Jewish says I have it then I will believe. I am really really upset that I have this disease. For the past 10 years my life has been so wonderful and I wanted it to continure until I am 100 and died in my sleep. during that time I had noticed that things were getting harder and harder to do and gave up on doing many things but I just thought I was lazy. I am fat and thought that was the problem and that I was lazy. When bringing the groceries from the car to the house became a prolem I bought a wagon and called my self a lazy fat slob but then putting them away becamje a problem I called myslef lazy again. I am sorry if I hurt your feelings. Joyce Rudy AZ IPF 11-08 > Oxygen > > > I am beginnning to think I don';t have IPF. Because my new oxygen supplier only has portables for liquid oxygen that hold 2-3 hours of oxygen I have been without oxygen for the last couple of days when out and I feel just fine. I am beginning to thik that being on oxygen these last few months has healed my lungs and now they are ok....but as far as I know I haven't been breathless but then Ihaven't noticed my breathing. so maybe luck is with me and I don't have IPF! > > Joyce AZ IPF 11-08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Joyce, people in this air family love and care about you... We want you to love and care for yourself. Margaret 62 Anchorage, Alaska Pneumonitis 97, PH 06, COPD, PF, respiratory & heart failure 08 I enjoy traveling, photography, gardening, sewing, home decorating, playing with my toys & classical music aka Grammie Goose To: Breathe-Support Sent: Saturday, March 7, 2009 10:25:55 AMSubject: Re: Oxygen You refer to the last ten years. They're done. Now think of today andthe rest of life and make it the best you can. I can honestly say thatthe last 21 months of my life has been among the best periods of mylife. It can be. Oxygen is my enabler to be able to do that. I live eachday as full as I can. I live each year literally as if it's my last. Iplan those things I don't want to not get in and I do them. I do makedecisions based on the realities. That's why my lease on the house and I are going to get has a clause allowing her to terminate itif I die. Thats also why I'm not focused on my finances at 65 knowing Iprobably won't make it, but thinking of what does the most for myquality of life today. Yes, there are obstacles we face. But we eithersay we'll find a way to overcome them or we give up on life.MB is one of the best examples I know.. Her entire life was uprooted andshe relocated and found herself there without insurance and yet shefound a way to overcome it all. Having met her, I only wish I livedcloser. We had a great lunch together but I'm sure we could juice upwith oxygen and enjoy so many things in the NC area if I lived there.Follow people like her.When I first joined, the first person I met in person with PF wasGwynne. She was quite an example and model and mentor. When I saw thisbeautiful lady going to all the trouble to get dolled up and out to meetme for lunch even though she was much further advanced than me, Irespected that and said, "this is how I want to be". I heard her talkabout her still busy schedule and lunch with friends and such. My firsttrip on oxygen was a short one to Tulsa for a couple of days. I hadencountered an ER trip just a few weeks before. There were many excusesnot to go. But I knew two things. First, if Gwynne was still going Icertainly could. Two, if I found excuses this early not to go, I'd neverdo anything. Excuses would always be there. I honestly felt like if Ibacked out I'd be insulting her, someone further alone and making noexcuses. Once I made Tulsa then so many others followed right behind. MBand Leanne and I sort of joked about our traveling competition. But,more, it was reminder to each of us and incentive to keep going. Theywere two more members I chose to imitate.There are only two things that will stop me from doing what I want toenjoy today. First, I will not expose myself to sick people and germs.Second, shortage of money. Otherwise, I can and will do it.>> Beth- I meant by becoming an invalid that I could only be awayfrom home for a couple of hours and then had to return home. I did notmean to imply that oxygen made you an invalid. I will keepp after mysupplier. I have no intentions of letting this condition stand but I cando no more then request for a better portable until I return from Jewishbecause I can't leave them until I return. And, I don't feel oxygenmakes you an invalid. It's the restriction of time that I was referingtoo. As to my 'denial" I don't know what to say. I keep thinking I musthave cheated on the pulmonary tests or something. Yet, I was sittingwithout oxygen for a long time and took my O2 and it was only at 91. IfNational Jewish says I have it then I will believe. I am really reallyupset that I have this disease. For the past 10 years my life has beenso wonderful and I wanted it to continure until I am 100 and died in mysleep. during that time I had noticed that things were getting harderand harder to do and gave up on doing many things but I just thought Iwas lazy. I am fat and thought that was the problem and that I was lazy.When bringing the groceries from the car to the house became a prolem Ibought a wagon and called my self a lazy fat slob but then putting themaway becamje a problem I called myslef lazy again. I am sorry if I hurtyour feelings. Joyce Rudy AZ IPF 11-08> Oxygen>>> I am beginnning to think I don';t have IPF. Because my new oxygensupplier only has portables for liquid oxygen that hold 2-3 hours ofoxygen I have been without oxygen for the last couple of days when outand I feel just fine. I am beginning to thik that being on oxygen theselast few months has healed my lungs and now they are ok....but as far asI know I haven't been breathless but then Ihaven't noticed my breathing.so maybe luck is with me and I don't have IPF!>> Joyce AZ IPF 11-08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2009 Report Share Posted March 7, 2009 Joyce, people in this air family love and care about you... We want you to love and care for yourself. Margaret 62 Anchorage, Alaska Pneumonitis 97, PH 06, COPD, PF, respiratory & heart failure 08 I enjoy traveling, photography, gardening, sewing, home decorating, playing with my toys & classical music aka Grammie Goose To: Breathe-Support Sent: Saturday, March 7, 2009 10:25:55 AMSubject: Re: Oxygen You refer to the last ten years. They're done. Now think of today andthe rest of life and make it the best you can. I can honestly say thatthe last 21 months of my life has been among the best periods of mylife. It can be. Oxygen is my enabler to be able to do that. I live eachday as full as I can. I live each year literally as if it's my last. Iplan those things I don't want to not get in and I do them. I do makedecisions based on the realities. That's why my lease on the house and I are going to get has a clause allowing her to terminate itif I die. Thats also why I'm not focused on my finances at 65 knowing Iprobably won't make it, but thinking of what does the most for myquality of life today. Yes, there are obstacles we face. But we eithersay we'll find a way to overcome them or we give up on life.MB is one of the best examples I know.. Her entire life was uprooted andshe relocated and found herself there without insurance and yet shefound a way to overcome it all. Having met her, I only wish I livedcloser. We had a great lunch together but I'm sure we could juice upwith oxygen and enjoy so many things in the NC area if I lived there.Follow people like her.When I first joined, the first person I met in person with PF wasGwynne. She was quite an example and model and mentor. When I saw thisbeautiful lady going to all the trouble to get dolled up and out to meetme for lunch even though she was much further advanced than me, Irespected that and said, "this is how I want to be". I heard her talkabout her still busy schedule and lunch with friends and such. My firsttrip on oxygen was a short one to Tulsa for a couple of days. I hadencountered an ER trip just a few weeks before. There were many excusesnot to go. But I knew two things. First, if Gwynne was still going Icertainly could. Two, if I found excuses this early not to go, I'd neverdo anything. Excuses would always be there. I honestly felt like if Ibacked out I'd be insulting her, someone further alone and making noexcuses. Once I made Tulsa then so many others followed right behind. MBand Leanne and I sort of joked about our traveling competition. But,more, it was reminder to each of us and incentive to keep going. Theywere two more members I chose to imitate.There are only two things that will stop me from doing what I want toenjoy today. First, I will not expose myself to sick people and germs.Second, shortage of money. Otherwise, I can and will do it.>> Beth- I meant by becoming an invalid that I could only be awayfrom home for a couple of hours and then had to return home. I did notmean to imply that oxygen made you an invalid. I will keepp after mysupplier. I have no intentions of letting this condition stand but I cando no more then request for a better portable until I return from Jewishbecause I can't leave them until I return. And, I don't feel oxygenmakes you an invalid. It's the restriction of time that I was referingtoo. As to my 'denial" I don't know what to say. I keep thinking I musthave cheated on the pulmonary tests or something. Yet, I was sittingwithout oxygen for a long time and took my O2 and it was only at 91. IfNational Jewish says I have it then I will believe. I am really reallyupset that I have this disease. For the past 10 years my life has beenso wonderful and I wanted it to continure until I am 100 and died in mysleep. during that time I had noticed that things were getting harderand harder to do and gave up on doing many things but I just thought Iwas lazy. I am fat and thought that was the problem and that I was lazy.When bringing the groceries from the car to the house became a prolem Ibought a wagon and called my self a lazy fat slob but then putting themaway becamje a problem I called myslef lazy again. I am sorry if I hurtyour feelings. Joyce Rudy AZ IPF 11-08> Oxygen>>> I am beginnning to think I don';t have IPF. Because my new oxygensupplier only has portables for liquid oxygen that hold 2-3 hours ofoxygen I have been without oxygen for the last couple of days when outand I feel just fine. I am beginning to thik that being on oxygen theselast few months has healed my lungs and now they are ok....but as far asI know I haven't been breathless but then Ihaven't noticed my breathing.so maybe luck is with me and I don't have IPF!>> Joyce AZ IPF 11-08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 when i use demand instead of continuous, it lasts longer i use demand when sitting, continuous when walking, C4 is the highest i use when at rehabespecially while on the treadmill Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: OxygenTo: Breathe-Support Date: Saturday, March 7, 2009, 12:10 PM SherWhen I sit in the car I look at my oximeter. As it raises I turn theoxygen down. If my drive is short I may only get it down to 2 lpm or 1lpm. If my ride is long, I'll typically be able to turn it off. If I'mout and about for 4 hours or so during the day, my oxygen will thereforebe from 0 to 4 lpm at various times. Depending on the nature of that dayI might average under 2 lpm or over 3 lpm so a single fill of myMarathon might last 3 to 6 hours. My stroller would last nearly doublethat if I used it. But many days if I'm active and using the Marathon Iwill refill it from the backseat of the van at least once if not twiceduring the day.>> From: JOYCE RUDY greycharlie@ ...> Subject: Re: Oxygen> To: Breathe-Support@ yahoogroups. com> Date: Thursday, March 5, 2009, 9:34 PM>>> Beth-I am not using oxygen when out because the company I changedto to get oxygen for my trip only has a tank for liquid oxyghen thatlasts 2 hours...3 if I use it at a lower setting. Since I am gone for6-8 hours when I am out I don't use any oxygen. It's not enough time. Ittakes me 30 min each way to get to town and that leaves me only 1 hourto do my errands and other things. Not acceptable. So I am withoutoxygen. Joyce AZ> Oxygen>>> I am beginnning to think I don';t have IPF. Because my new oxygensupplier only has portables for liquid oxygen that hold 2-3 hours ofoxygen I have been without oxygen for the last couple of days when outand I feel just fine. I am beginning to thik that being on oxygen theselast few months has healed my lungs and now they are ok....but as far asI know I haven't been breathless but then Ihaven't noticed my breathing.so maybe luck is with me and I don't have IPF!>> Joyce AZ IPF 11-08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 when i use demand instead of continuous, it lasts longer i use demand when sitting, continuous when walking, C4 is the highest i use when at rehabespecially while on the treadmill Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: OxygenTo: Breathe-Support Date: Saturday, March 7, 2009, 12:10 PM SherWhen I sit in the car I look at my oximeter. As it raises I turn theoxygen down. If my drive is short I may only get it down to 2 lpm or 1lpm. If my ride is long, I'll typically be able to turn it off. If I'mout and about for 4 hours or so during the day, my oxygen will thereforebe from 0 to 4 lpm at various times. Depending on the nature of that dayI might average under 2 lpm or over 3 lpm so a single fill of myMarathon might last 3 to 6 hours. My stroller would last nearly doublethat if I used it. But many days if I'm active and using the Marathon Iwill refill it from the backseat of the van at least once if not twiceduring the day.>> From: JOYCE RUDY greycharlie@ ...> Subject: Re: Oxygen> To: Breathe-Support@ yahoogroups. com> Date: Thursday, March 5, 2009, 9:34 PM>>> Beth-I am not using oxygen when out because the company I changedto to get oxygen for my trip only has a tank for liquid oxyghen thatlasts 2 hours...3 if I use it at a lower setting. Since I am gone for6-8 hours when I am out I don't use any oxygen. It's not enough time. Ittakes me 30 min each way to get to town and that leaves me only 1 hourto do my errands and other things. Not acceptable. So I am withoutoxygen. Joyce AZ> Oxygen>>> I am beginnning to think I don';t have IPF. Because my new oxygensupplier only has portables for liquid oxygen that hold 2-3 hours ofoxygen I have been without oxygen for the last couple of days when outand I feel just fine. I am beginning to thik that being on oxygen theselast few months has healed my lungs and now they are ok....but as far asI know I haven't been breathless but then Ihaven't noticed my breathing.so maybe luck is with me and I don't have IPF!>> Joyce AZ IPF 11-08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Pink My sinuses have been so bad I haven't been able to use demand at all for at least a month. I use continuous on 3 or 4 lpm when active and less when not moving around or sitting. I use continuous on 5 lpm on the treadmill. > > > > From: JOYCE RUDY greycharlie@ ... > > Subject: Re: Oxygen > > To: Breathe-Support@ yahoogroups. com > > Date: Thursday, March 5, 2009, 9:34 PM > > > > > > Beth-I am not using oxygen when out because the company I changed > to to get oxygen for my trip only has a tank for liquid oxyghen that > lasts 2 hours...3 if I use it at a lower setting. Since I am gone for > 6-8 hours when I am out I don't use any oxygen. It's not enough time. It > takes me 30 min each way to get to town and that leaves me only 1 hour > to do my errands and other things. Not acceptable. So I am without > oxygen. Joyce AZ > > Oxygen > > > > > > I am beginnning to think I don';t have IPF. Because my new oxygen > supplier only has portables for liquid oxygen that hold 2-3 hours of > oxygen I have been without oxygen for the last couple of days when out > and I feel just fine. I am beginning to thik that being on oxygen these > last few months has healed my lungs and now they are ok....but as far as > I know I haven't been breathless but then Ihaven't noticed my breathing. > so maybe luck is with me and I don't have IPF! > > > > Joyce AZ IPF 11-08 > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.