Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Thank you for the information, Beth. I've been wondering if things are getting worse, or if it's just that I'm more aware of these things than I was before I knew I had IPF. I am not presently on oxygen, and I've decided not to do the steriods at this time. I have another pulmonary function test scheduled in January, and I'll see what (if anything) has changed by then; I can always opt for the steriods then. I do not know what you mean by "stats of 95". Please explain, if you don't mind. Beth wrote: Barbara, Welcome! I'm glad you've joined us though I'm sorry that you have reason to. I'd like to say that fatigue, tiredness, exhaustion whatever you want to call it is most definitely a part of this disease. After the shortness of breath and cough the fatigue is my next most prominent symptom. And it's the symptom that is the least understood by those around me. My sister (who's a physician by the way) claims that I'm "only limited by the amount of O2 I have with me". That is only true up to a point. I can do everything right, use the correct amount of O2, maintain my sats at 95 or better at all times and I will still be exhausted and need a nap after a given amount of activity. I think there is some logical, if not visible explanation for this. We have to work harder just to get air into our lungs, coughing takes a tremendous amount of energy, lugging O2 around outside the house uses up energy....our lives are just more physically taxing than the average healthy individual. Emotionally it is also completely draining to have this disease. To walk around 24/7 knowing you have a fatal illness takes a toll. It is depressing and it is tiring. Even if I'm not actively thinking about it, it's there and it wears on me. You ask if you're just being "indulgent" with yourself or slightly depressed. You may be slightly depressed. It's appropriate and it would be surprising if anyone newly diagnosed with this condition did not become somewhat depressed. I was diagnosed in June of 06 and I still have times when it all just feels overwhelming and I feel depressed. At one point I was on Zoloft (an anti-depressant) for awhile and if I need to do that again, I will. It also helped me to see a counselor for several months. It helped me to have an outlet for my feelings instead of keeping them bottled up inside me. As for being indulgent, I think that a certain amount of indulging ourselves is a good thing. It's the balance that matters and that's something that will come over time. There are days when I push myself and focus on accomplishing tasks and there are pajama days when I hang out at home and my best friend is my recliner. Be patient with yourself and it will sort itself out. In the meantime, look after you. Make taking care of yourself your first priority. Eat well, rest when you need it, use your O2 when you need to and know that you didn't come with an expiration date. I was diagnosed nearly 2 and a half years ago and I'm still plugging away and I don't intend to stop anytime soon! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support Sent: Saturday, October 25, 2008 9:25:22 AMSubject: Re: Re: questions I am another "newbie", having been diagnosed with IPF about 3-4 weeks ago. While I wonder what's in store for me personally, I've been lurking on this site long enough to know that everyone's situation is different. I do appreciate when people post specific info on the disease, and I can feel the friendship and love that members have for one another. I feel pretty good, exsept for the coughing, and the wheezing, and the shortness of breath that occurs through even minor exertion. I do wonder if the tiredness I feel is attributable to the IPF, or if I'm just being indulgent (or maybe slightly depressed - een though I don't think so). Is tiredness part of the illness, do you think?Sher Bauman <bofus (AT) wbcable (DOT) net> wrote: HI to both Diane and Mark... As you've read, it's sad when newbies join us but you are in the best place you can be as we share this disease. There is always someone to answer a question, give support, love us unconditionally, give us sound information and on and on. I'm sorry you don't have a lot of family support...all the more reason to stay close to the board. I was dx (diagnosed) 3-06 and have remained fairly stable until a few months ago and then noticed more and more sob.(shortness of breath). Less energy. I'm anxious to see the pulmonologist next month as see where I am now. I too remember, we do not have a date stamped on our fannies for expiration! And I may die with something totally unrelated. Anyway, welcome to you both. Diane: How do you know you have "such a short time left"? What have you been told? Are you seeing a good pulmo, have you had extensive testing, x-rays and so on? It's hard to be positive but time does give us acceptance and courage. I'm tired all the time too. I seldom go out...but I do what I can inside. Now I'm crocheting toys for the kids for Christmas. Whoopee huh? Walt: Have you ever been in Oregon? I swear there was a photographer right here in Canby OR who closed down and his name I think was Mark y. Can't be. Don't dread the O2. It will help and you will feel better. Remember, O2 protects our other organs too and we need enough! Let's hope we are trading emails 10 years from now. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: questions >> Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane>Hi Diane and welcome to where I was almost a year ago when I learned I have PF after I had heart bypass surgery. I am 59 with a full time job and a photography business on the side. I have been suffering from excerise induced shortness of breath (duh)but am ok as long as I stop and wait a couple minutes to recover. My wife has learned to walk slower!I have home oxygen and only use it at night for now. I'm not looking forward to going on ox full time. Yuck! The only advise I can offer is hand in there and don't panic. We may be trading e-mails 10 years from now for all we know.Markpf 11/07 Raleigh, NC Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Hi Barbara, What I referred to was "sats" (not stats) and that is a shorthand way of saying Oxygen saturations. That refers to the level of oxygen in our bloodstream at any given time. Normal O2 sats are in the high 90's, 97-99. Anything below about 90 leads to organ damage. When the oxygen level in our bloodstream falls below 90 for more than a few minutes ( and by few I mean 4 or 5 at the most) cells begin to die, brain cells, liver cells, kidney cells, heart cells, muscle cells. Low oxygen levels can cause a heart attack. Keeping our sats at more normal levels is how we protect the rest of our bodies from the effects of this disease. You don't mention whether you've had a 6 minute walk or any other test of your O2 levels. If you have not it would be a good thing to request. Where are you located? I live in Durham NC about 10 minutes from Duke University Medical Center. I moved here specifically to be close to Duke which has an excellent interstitial lung disease department. It might be worthwhile to look into being evaluated at a university medical center as they have access to the most up to date information on our disease. Please let us know if you have any questions at all. We've all been in your position and we're happy to help! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle To: Breathe-Support Sent: Saturday, October 25, 2008 10:35:33 AMSubject: Re: Re: questions Thank you for the information, Beth. I've been wondering if things are getting worse, or if it's just that I'm more aware of these things than I was before I knew I had IPF. I am not presently on oxygen, and I've decided not to do the steriods at this time. I have another pulmonary function test scheduled in January, and I'll see what (if anything) has changed by then; I can always opt for the steriods then. I do not know what you mean by "stats of 95". Please explain, if you don't mind. Beth <mbmurtha (AT) yahoo (DOT) com> wrote: Barbara, Welcome! I'm glad you've joined us though I'm sorry that you have reason to. I'd like to say that fatigue, tiredness, exhaustion whatever you want to call it is most definitely a part of this disease. After the shortness of breath and cough the fatigue is my next most prominent symptom. And it's the symptom that is the least understood by those around me. My sister (who's a physician by the way) claims that I'm "only limited by the amount of O2 I have with me". That is only true up to a point. I can do everything right, use the correct amount of O2, maintain my sats at 95 or better at all times and I will still be exhausted and need a nap after a given amount of activity. I think there is some logical, if not visible explanation for this. We have to work harder just to get air into our lungs, coughing takes a tremendous amount of energy, lugging O2 around outside the house uses up energy....our lives are just more physically taxing than the average healthy individual. Emotionally it is also completely draining to have this disease. To walk around 24/7 knowing you have a fatal illness takes a toll. It is depressing and it is tiring. Even if I'm not actively thinking about it, it's there and it wears on me. You ask if you're just being "indulgent" with yourself or slightly depressed. You may be slightly depressed. It's appropriate and it would be surprising if anyone newly diagnosed with this condition did not become somewhat depressed. I was diagnosed in June of 06 and I still have times when it all just feels overwhelming and I feel depressed. At one point I was on Zoloft (an anti-depressant) for awhile and if I need to do that again, I will. It also helped me to see a counselor for several months. It helped me to have an outlet for my feelings instead of keeping them bottled up inside me. As for being indulgent, I think that a certain amount of indulging ourselves is a good thing. It's the balance that matters and that's something that will come over time. There are days when I push myself and focus on accomplishing tasks and there are pajama days when I hang out at home and my best friend is my recliner. Be patient with yourself and it will sort itself out. In the meantime, look after you. Make taking care of yourself your first priority. Eat well, rest when you need it, use your O2 when you need to and know that you didn't come with an expiration date. I was diagnosed nearly 2 and a half years ago and I'm still plugging away and I don't intend to stop anytime soon! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, October 25, 2008 9:25:22 AMSubject: Re: Re: questions I am another "newbie", having been diagnosed with IPF about 3-4 weeks ago. While I wonder what's in store for me personally, I've been lurking on this site long enough to know that everyone's situation is different. I do appreciate when people post specific info on the disease, and I can feel the friendship and love that members have for one another. I feel pretty good, exsept for the coughing, and the wheezing, and the shortness of breath that occurs through even minor exertion. I do wonder if the tiredness I feel is attributable to the IPF, or if I'm just being indulgent (or maybe slightly depressed - een though I don't think so). Is tiredness part of the illness, do you think?Sher Bauman <bofus (AT) wbcable (DOT) net> wrote: HI to both Diane and Mark... As you've read, it's sad when newbies join us but you are in the best place you can be as we share this disease. There is always someone to answer a question, give support, love us unconditionally, give us sound information and on and on. I'm sorry you don't have a lot of family support...all the more reason to stay close to the board. I was dx (diagnosed) 3-06 and have remained fairly stable until a few months ago and then noticed more and more sob.(shortness of breath). Less energy. I'm anxious to see the pulmonologist next month as see where I am now. I too remember, we do not have a date stamped on our fannies for expiration! And I may die with something totally unrelated. Anyway, welcome to you both. Diane: How do you know you have "such a short time left"? What have you been told? Are you seeing a good pulmo, have you had extensive testing, x-rays and so on? It's hard to be positive but time does give us acceptance and courage. I'm tired all the time too. I seldom go out...but I do what I can inside. Now I'm crocheting toys for the kids for Christmas. Whoopee huh? Walt: Have you ever been in Oregon? I swear there was a photographer right here in Canby OR who closed down and his name I think was Mark y. Can't be. Don't dread the O2. It will help and you will feel better. Remember, O2 protects our other organs too and we need enough! Let's hope we are trading emails 10 years from now. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: questions >> Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane>Hi Diane and welcome to where I was almost a year ago when I learned I have PF after I had heart bypass surgery. I am 59 with a full time job and a photography business on the side. I have been suffering from excerise induced shortness of breath (duh)but am ok as long as I stop and wait a couple minutes to recover. My wife has learned to walk slower!I have home oxygen and only use it at night for now. I'm not looking forward to going on ox full time. Yuck! The only advise I can offer is hand in there and don't panic. We may be trading e-mails 10 years from now for all we know.Markpf 11/07 Raleigh, NC Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Hi Barbara, What I referred to was "sats" (not stats) and that is a shorthand way of saying Oxygen saturations. That refers to the level of oxygen in our bloodstream at any given time. Normal O2 sats are in the high 90's, 97-99. Anything below about 90 leads to organ damage. When the oxygen level in our bloodstream falls below 90 for more than a few minutes ( and by few I mean 4 or 5 at the most) cells begin to die, brain cells, liver cells, kidney cells, heart cells, muscle cells. Low oxygen levels can cause a heart attack. Keeping our sats at more normal levels is how we protect the rest of our bodies from the effects of this disease. You don't mention whether you've had a 6 minute walk or any other test of your O2 levels. If you have not it would be a good thing to request. Where are you located? I live in Durham NC about 10 minutes from Duke University Medical Center. I moved here specifically to be close to Duke which has an excellent interstitial lung disease department. It might be worthwhile to look into being evaluated at a university medical center as they have access to the most up to date information on our disease. Please let us know if you have any questions at all. We've all been in your position and we're happy to help! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle To: Breathe-Support Sent: Saturday, October 25, 2008 10:35:33 AMSubject: Re: Re: questions Thank you for the information, Beth. I've been wondering if things are getting worse, or if it's just that I'm more aware of these things than I was before I knew I had IPF. I am not presently on oxygen, and I've decided not to do the steriods at this time. I have another pulmonary function test scheduled in January, and I'll see what (if anything) has changed by then; I can always opt for the steriods then. I do not know what you mean by "stats of 95". Please explain, if you don't mind. Beth <mbmurtha (AT) yahoo (DOT) com> wrote: Barbara, Welcome! I'm glad you've joined us though I'm sorry that you have reason to. I'd like to say that fatigue, tiredness, exhaustion whatever you want to call it is most definitely a part of this disease. After the shortness of breath and cough the fatigue is my next most prominent symptom. And it's the symptom that is the least understood by those around me. My sister (who's a physician by the way) claims that I'm "only limited by the amount of O2 I have with me". That is only true up to a point. I can do everything right, use the correct amount of O2, maintain my sats at 95 or better at all times and I will still be exhausted and need a nap after a given amount of activity. I think there is some logical, if not visible explanation for this. We have to work harder just to get air into our lungs, coughing takes a tremendous amount of energy, lugging O2 around outside the house uses up energy....our lives are just more physically taxing than the average healthy individual. Emotionally it is also completely draining to have this disease. To walk around 24/7 knowing you have a fatal illness takes a toll. It is depressing and it is tiring. Even if I'm not actively thinking about it, it's there and it wears on me. You ask if you're just being "indulgent" with yourself or slightly depressed. You may be slightly depressed. It's appropriate and it would be surprising if anyone newly diagnosed with this condition did not become somewhat depressed. I was diagnosed in June of 06 and I still have times when it all just feels overwhelming and I feel depressed. At one point I was on Zoloft (an anti-depressant) for awhile and if I need to do that again, I will. It also helped me to see a counselor for several months. It helped me to have an outlet for my feelings instead of keeping them bottled up inside me. As for being indulgent, I think that a certain amount of indulging ourselves is a good thing. It's the balance that matters and that's something that will come over time. There are days when I push myself and focus on accomplishing tasks and there are pajama days when I hang out at home and my best friend is my recliner. Be patient with yourself and it will sort itself out. In the meantime, look after you. Make taking care of yourself your first priority. Eat well, rest when you need it, use your O2 when you need to and know that you didn't come with an expiration date. I was diagnosed nearly 2 and a half years ago and I'm still plugging away and I don't intend to stop anytime soon! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, October 25, 2008 9:25:22 AMSubject: Re: Re: questions I am another "newbie", having been diagnosed with IPF about 3-4 weeks ago. While I wonder what's in store for me personally, I've been lurking on this site long enough to know that everyone's situation is different. I do appreciate when people post specific info on the disease, and I can feel the friendship and love that members have for one another. I feel pretty good, exsept for the coughing, and the wheezing, and the shortness of breath that occurs through even minor exertion. I do wonder if the tiredness I feel is attributable to the IPF, or if I'm just being indulgent (or maybe slightly depressed - een though I don't think so). Is tiredness part of the illness, do you think?Sher Bauman <bofus (AT) wbcable (DOT) net> wrote: HI to both Diane and Mark... As you've read, it's sad when newbies join us but you are in the best place you can be as we share this disease. There is always someone to answer a question, give support, love us unconditionally, give us sound information and on and on. I'm sorry you don't have a lot of family support...all the more reason to stay close to the board. I was dx (diagnosed) 3-06 and have remained fairly stable until a few months ago and then noticed more and more sob.(shortness of breath). Less energy. I'm anxious to see the pulmonologist next month as see where I am now. I too remember, we do not have a date stamped on our fannies for expiration! And I may die with something totally unrelated. Anyway, welcome to you both. Diane: How do you know you have "such a short time left"? What have you been told? Are you seeing a good pulmo, have you had extensive testing, x-rays and so on? It's hard to be positive but time does give us acceptance and courage. I'm tired all the time too. I seldom go out...but I do what I can inside. Now I'm crocheting toys for the kids for Christmas. Whoopee huh? Walt: Have you ever been in Oregon? I swear there was a photographer right here in Canby OR who closed down and his name I think was Mark y. Can't be. Don't dread the O2. It will help and you will feel better. Remember, O2 protects our other organs too and we need enough! Let's hope we are trading emails 10 years from now. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: questions >> Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane>Hi Diane and welcome to where I was almost a year ago when I learned I have PF after I had heart bypass surgery. I am 59 with a full time job and a photography business on the side. I have been suffering from excerise induced shortness of breath (duh)but am ok as long as I stop and wait a couple minutes to recover. My wife has learned to walk slower!I have home oxygen and only use it at night for now. I'm not looking forward to going on ox full time. Yuck! The only advise I can offer is hand in there and don't panic. We may be trading e-mails 10 years from now for all we know.Markpf 11/07 Raleigh, NC Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Hi Barbara, What I referred to was "sats" (not stats) and that is a shorthand way of saying Oxygen saturations. That refers to the level of oxygen in our bloodstream at any given time. Normal O2 sats are in the high 90's, 97-99. Anything below about 90 leads to organ damage. When the oxygen level in our bloodstream falls below 90 for more than a few minutes ( and by few I mean 4 or 5 at the most) cells begin to die, brain cells, liver cells, kidney cells, heart cells, muscle cells. Low oxygen levels can cause a heart attack. Keeping our sats at more normal levels is how we protect the rest of our bodies from the effects of this disease. You don't mention whether you've had a 6 minute walk or any other test of your O2 levels. If you have not it would be a good thing to request. Where are you located? I live in Durham NC about 10 minutes from Duke University Medical Center. I moved here specifically to be close to Duke which has an excellent interstitial lung disease department. It might be worthwhile to look into being evaluated at a university medical center as they have access to the most up to date information on our disease. Please let us know if you have any questions at all. We've all been in your position and we're happy to help! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle To: Breathe-Support Sent: Saturday, October 25, 2008 10:35:33 AMSubject: Re: Re: questions Thank you for the information, Beth. I've been wondering if things are getting worse, or if it's just that I'm more aware of these things than I was before I knew I had IPF. I am not presently on oxygen, and I've decided not to do the steriods at this time. I have another pulmonary function test scheduled in January, and I'll see what (if anything) has changed by then; I can always opt for the steriods then. I do not know what you mean by "stats of 95". Please explain, if you don't mind. Beth <mbmurtha (AT) yahoo (DOT) com> wrote: Barbara, Welcome! I'm glad you've joined us though I'm sorry that you have reason to. I'd like to say that fatigue, tiredness, exhaustion whatever you want to call it is most definitely a part of this disease. After the shortness of breath and cough the fatigue is my next most prominent symptom. And it's the symptom that is the least understood by those around me. My sister (who's a physician by the way) claims that I'm "only limited by the amount of O2 I have with me". That is only true up to a point. I can do everything right, use the correct amount of O2, maintain my sats at 95 or better at all times and I will still be exhausted and need a nap after a given amount of activity. I think there is some logical, if not visible explanation for this. We have to work harder just to get air into our lungs, coughing takes a tremendous amount of energy, lugging O2 around outside the house uses up energy....our lives are just more physically taxing than the average healthy individual. Emotionally it is also completely draining to have this disease. To walk around 24/7 knowing you have a fatal illness takes a toll. It is depressing and it is tiring. Even if I'm not actively thinking about it, it's there and it wears on me. You ask if you're just being "indulgent" with yourself or slightly depressed. You may be slightly depressed. It's appropriate and it would be surprising if anyone newly diagnosed with this condition did not become somewhat depressed. I was diagnosed in June of 06 and I still have times when it all just feels overwhelming and I feel depressed. At one point I was on Zoloft (an anti-depressant) for awhile and if I need to do that again, I will. It also helped me to see a counselor for several months. It helped me to have an outlet for my feelings instead of keeping them bottled up inside me. As for being indulgent, I think that a certain amount of indulging ourselves is a good thing. It's the balance that matters and that's something that will come over time. There are days when I push myself and focus on accomplishing tasks and there are pajama days when I hang out at home and my best friend is my recliner. Be patient with yourself and it will sort itself out. In the meantime, look after you. Make taking care of yourself your first priority. Eat well, rest when you need it, use your O2 when you need to and know that you didn't come with an expiration date. I was diagnosed nearly 2 and a half years ago and I'm still plugging away and I don't intend to stop anytime soon! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, October 25, 2008 9:25:22 AMSubject: Re: Re: questions I am another "newbie", having been diagnosed with IPF about 3-4 weeks ago. While I wonder what's in store for me personally, I've been lurking on this site long enough to know that everyone's situation is different. I do appreciate when people post specific info on the disease, and I can feel the friendship and love that members have for one another. I feel pretty good, exsept for the coughing, and the wheezing, and the shortness of breath that occurs through even minor exertion. I do wonder if the tiredness I feel is attributable to the IPF, or if I'm just being indulgent (or maybe slightly depressed - een though I don't think so). Is tiredness part of the illness, do you think?Sher Bauman <bofus (AT) wbcable (DOT) net> wrote: HI to both Diane and Mark... As you've read, it's sad when newbies join us but you are in the best place you can be as we share this disease. There is always someone to answer a question, give support, love us unconditionally, give us sound information and on and on. I'm sorry you don't have a lot of family support...all the more reason to stay close to the board. I was dx (diagnosed) 3-06 and have remained fairly stable until a few months ago and then noticed more and more sob.(shortness of breath). Less energy. I'm anxious to see the pulmonologist next month as see where I am now. I too remember, we do not have a date stamped on our fannies for expiration! And I may die with something totally unrelated. Anyway, welcome to you both. Diane: How do you know you have "such a short time left"? What have you been told? Are you seeing a good pulmo, have you had extensive testing, x-rays and so on? It's hard to be positive but time does give us acceptance and courage. I'm tired all the time too. I seldom go out...but I do what I can inside. Now I'm crocheting toys for the kids for Christmas. Whoopee huh? Walt: Have you ever been in Oregon? I swear there was a photographer right here in Canby OR who closed down and his name I think was Mark y. Can't be. Don't dread the O2. It will help and you will feel better. Remember, O2 protects our other organs too and we need enough! Let's hope we are trading emails 10 years from now. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: questions >> Hi- I have never been involved in a support group before and I'm not sure what to do. I want to know things like the natural progression of the disease, how long life expectancy is and if others "feel" their hardness in their lungs like I do. The doctors tell me I can't feel things as the lungs have no feelings but I beg to differ. I don't have a lot of family support and my husband just can't believe I have such a short time left. I have polymyositis and other things going on as well making it hard for me to keep up with things. And how do you keep a positive attitude when things look so bleak and you are constantly fatigued? Thank you for your support-Diane>Hi Diane and welcome to where I was almost a year ago when I learned I have PF after I had heart bypass surgery. I am 59 with a full time job and a photography business on the side. I have been suffering from excerise induced shortness of breath (duh)but am ok as long as I stop and wait a couple minutes to recover. My wife has learned to walk slower!I have home oxygen and only use it at night for now. I'm not looking forward to going on ox full time. Yuck! The only advise I can offer is hand in there and don't panic. We may be trading e-mails 10 years from now for all we know.Markpf 11/07 Raleigh, NC Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Barbara McD Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Dear MARY BETH: I was just reading this post you wrote to Barbara, and it totally refreshed what WE HAVE. It is such a horrible disease, but your words were words of so much comfort to me Beth, because even though you talked about the uncomfortable things this disease does to us, I did not feel alone when I was reading it. Everything you say is so true and it pretty much affects all of us the same, especially with using the oxygen right for each of us, as it is different. You are such an asset to this board with your knowledge and experience, even though it has been a short time since you have been diagnosed. On the other hand, I have had this now for 6 years, and only a little over 1 year 24/7 on oxygen that follows me around the house. It has taken almost this whole year to get used to it trailing me around. IT MUST LOVE ME, don't you think that is it????????? lol I LOVE YOU THIS DAY MARY LOU = RICHMOND VA IPF - 02 > > > > Hi- I have never been involved in a support group before and I'm > not sure what to do. I want to know things like the natural > progression of the disease, how long life expectancy is and if > others " feel " their hardness in their lungs like I do. The doctors > tell me I can't feel things as the lungs have no feelings but I beg > to differ. I don't have a lot of family support and my husband just > can't believe I have such a short time left. I have polymyositis > and other things going on as well making it hard for me to keep up > with things. And how do you keep a positive attitude when things > look so bleak and you are constantly fatigued? Thank you for your > support-Diane > > > Hi Diane and welcome to where I was almost a year ago when I learned > I have PF after I had heart bypass surgery. I am 59 with a full time > job and a photography business on the side. I have been suffering > from excerise induced shortness of breath (duh)but am ok as long as > I stop and wait a couple minutes to recover. My wife has learned to > walk slower! > > I have home oxygen and only use it at night for now. I'm not looking > forward to going on ox full time. Yuck! > > The only advise I can offer is hand in there and don't panic. We > may be trading e-mails 10 years from now for all we know. > > Mark > > pf 11/07 Raleigh, NC > > > > > > Barbara McD > > > > Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Dear MARY BETH: I was just reading this post you wrote to Barbara, and it totally refreshed what WE HAVE. It is such a horrible disease, but your words were words of so much comfort to me Beth, because even though you talked about the uncomfortable things this disease does to us, I did not feel alone when I was reading it. Everything you say is so true and it pretty much affects all of us the same, especially with using the oxygen right for each of us, as it is different. You are such an asset to this board with your knowledge and experience, even though it has been a short time since you have been diagnosed. On the other hand, I have had this now for 6 years, and only a little over 1 year 24/7 on oxygen that follows me around the house. It has taken almost this whole year to get used to it trailing me around. IT MUST LOVE ME, don't you think that is it????????? lol I LOVE YOU THIS DAY MARY LOU = RICHMOND VA IPF - 02 > > > > Hi- I have never been involved in a support group before and I'm > not sure what to do. I want to know things like the natural > progression of the disease, how long life expectancy is and if > others " feel " their hardness in their lungs like I do. The doctors > tell me I can't feel things as the lungs have no feelings but I beg > to differ. I don't have a lot of family support and my husband just > can't believe I have such a short time left. I have polymyositis > and other things going on as well making it hard for me to keep up > with things. And how do you keep a positive attitude when things > look so bleak and you are constantly fatigued? Thank you for your > support-Diane > > > Hi Diane and welcome to where I was almost a year ago when I learned > I have PF after I had heart bypass surgery. I am 59 with a full time > job and a photography business on the side. I have been suffering > from excerise induced shortness of breath (duh)but am ok as long as > I stop and wait a couple minutes to recover. My wife has learned to > walk slower! > > I have home oxygen and only use it at night for now. I'm not looking > forward to going on ox full time. Yuck! > > The only advise I can offer is hand in there and don't panic. We > may be trading e-mails 10 years from now for all we know. > > Mark > > pf 11/07 Raleigh, NC > > > > > > Barbara McD > > > > Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Thank you Lou, you're so sweet! Sometimes it's helpful to read again the basics of what we have and how it affects us. At least it is for me. There are times (probably for all of us) when I just feel so alone with this disease. That's where this board comes to my rescue. I'm not alone. We are all traveling this road together and helping each other. Hope you have a good day! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle To: Breathe-Support Sent: Saturday, October 25, 2008 11:09:24 AMSubject: Re: questions Dear MARY BETH:I was just reading this post you wrote to Barbara, and it totally refreshed what WE HAVE. It is such a horrible disease, but your words were words of so much comfort to me Beth, because even though you talked about the uncomfortable things this disease does to us, I did not feel alone when I was reading it. Everything you say is so true and it pretty much affects all of us the same, especially with using the oxygen right for each of us, as it is different.You are such an asset to this board with your knowledge and experience, even though it has been a short time since you have been diagnosed. On the other hand, I have had this now for 6 years, and only a little over 1 year 24/7 on oxygen that follows me around the house. It has taken almost this whole year to get used to it trailing me around. IT MUST LOVE ME, don't you think that is it????????? lolI LOVE YOU THIS DAYMARY LOU = RICHMOND VAIPF - 02> >> > Hi- I have never been involved in a support group before and I'm > not sure what to do. I want to know things like the natural > progression of the disease, how long life expectancy is and if > others "feel" their hardness in their lungs like I do. The doctors > tell me I can't feel things as the lungs have no feelings but I beg > to differ. I don't have a lot of family support and my husband just > can't believe I have such a short time left. I have polymyositis > and other things going on as well making it hard for me to keep up > with things. And how do you keep a positive attitude when things > look so bleak and you are constantly fatigued? Thank you for your > support-Diane> >> Hi Diane and welcome to where I was almost a year ago when I learned > I have PF after I had heart bypass surgery. I am 59 with a full time > job and a photography business on the side. I have been suffering > from excerise induced shortness of breath (duh)but am ok as long as > I stop and wait a couple minutes to recover. My wife has learned to > walk slower!> > I have home oxygen and only use it at night for now. I'm not looking > forward to going on ox full time. Yuck! > > The only advise I can offer is hand in there and don't panic. We > may be trading e-mails 10 years from now for all we know.> > Mark> > pf 11/07 Raleigh, NC> > > > > > Barbara McD> > > > Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2008 Report Share Posted October 25, 2008 Thank you Lou, you're so sweet! Sometimes it's helpful to read again the basics of what we have and how it affects us. At least it is for me. There are times (probably for all of us) when I just feel so alone with this disease. That's where this board comes to my rescue. I'm not alone. We are all traveling this road together and helping each other. Hope you have a good day! Beth-Moderator Fibrotic NSIP 06/06 UCTD 06/08 "Take chances, make mistakes and get messy!" Miss Frizzle To: Breathe-Support Sent: Saturday, October 25, 2008 11:09:24 AMSubject: Re: questions Dear MARY BETH:I was just reading this post you wrote to Barbara, and it totally refreshed what WE HAVE. It is such a horrible disease, but your words were words of so much comfort to me Beth, because even though you talked about the uncomfortable things this disease does to us, I did not feel alone when I was reading it. Everything you say is so true and it pretty much affects all of us the same, especially with using the oxygen right for each of us, as it is different.You are such an asset to this board with your knowledge and experience, even though it has been a short time since you have been diagnosed. On the other hand, I have had this now for 6 years, and only a little over 1 year 24/7 on oxygen that follows me around the house. It has taken almost this whole year to get used to it trailing me around. IT MUST LOVE ME, don't you think that is it????????? lolI LOVE YOU THIS DAYMARY LOU = RICHMOND VAIPF - 02> >> > Hi- I have never been involved in a support group before and I'm > not sure what to do. I want to know things like the natural > progression of the disease, how long life expectancy is and if > others "feel" their hardness in their lungs like I do. The doctors > tell me I can't feel things as the lungs have no feelings but I beg > to differ. I don't have a lot of family support and my husband just > can't believe I have such a short time left. I have polymyositis > and other things going on as well making it hard for me to keep up > with things. And how do you keep a positive attitude when things > look so bleak and you are constantly fatigued? Thank you for your > support-Diane> >> Hi Diane and welcome to where I was almost a year ago when I learned > I have PF after I had heart bypass surgery. I am 59 with a full time > job and a photography business on the side. I have been suffering > from excerise induced shortness of breath (duh)but am ok as long as > I stop and wait a couple minutes to recover. My wife has learned to > walk slower!> > I have home oxygen and only use it at night for now. I'm not looking > forward to going on ox full time. Yuck! > > The only advise I can offer is hand in there and don't panic. We > may be trading e-mails 10 years from now for all we know.> > Mark> > pf 11/07 Raleigh, NC> > > > > > Barbara McD> > > > Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9> > 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.