Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 I do have difficulty expressing myself, i tend to be factual when i write, however, this web site is usually one of the first things i do everyday (first is take fasting meds and letting the dog out) i do feel much closer to the people on this site than i do to the people who i see on a regular basis, except for Jerry no one else knows what it is like Jerry has a different disease and has been extremely ill many times when he had septic shock 2 summers ago, it was really scary, i just sat there watching the doctors and nurses working on him; their focus was on him and seemed to ignore me, except for any info i could give them about his medical history my mistake that morning was driving him to the ER, i should have called 911 when they moved him up to ICU, they provided me with an o2 tank, they didn't even ask if i needed it, they just brought it so Jerry can relate to all of this in a different way most of the time, when talking about my disease, it's kind of academic, like i am talking about someone else's body, not mine, even though i know it's mine, it doesn't feel real, there is no pain, just lots of coughing, shortness of breath, tiredness making the decision to go on the transplant list was very difficult, didn't realize how stressful it was until I became inactive, the stress was lifted from me all i could think about was rejection and infection, was really scared, didn't worry about the surgery, just the rejection and infection when the time comes where the pf is ... don't remember how to express this ... where the pf is riskier than transplant, i will be ready for transplant not there at this time, but knowing that it is an option is comforting not sure where i am going with all of this wanted to respond to how important this web site is and the support from everyone in it is too many names to mention then i ramble on about other things -- blame it on the OD Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Thoughts on survivingTo: Breathe-Support Date: Wednesday, May 20, 2009, 8:33 PM beautifully said Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Thoughts on survivingTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 20, 2009, 9:49 AM Hi everyone, The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations. I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 I do have difficulty expressing myself, i tend to be factual when i write, however, this web site is usually one of the first things i do everyday (first is take fasting meds and letting the dog out) i do feel much closer to the people on this site than i do to the people who i see on a regular basis, except for Jerry no one else knows what it is like Jerry has a different disease and has been extremely ill many times when he had septic shock 2 summers ago, it was really scary, i just sat there watching the doctors and nurses working on him; their focus was on him and seemed to ignore me, except for any info i could give them about his medical history my mistake that morning was driving him to the ER, i should have called 911 when they moved him up to ICU, they provided me with an o2 tank, they didn't even ask if i needed it, they just brought it so Jerry can relate to all of this in a different way most of the time, when talking about my disease, it's kind of academic, like i am talking about someone else's body, not mine, even though i know it's mine, it doesn't feel real, there is no pain, just lots of coughing, shortness of breath, tiredness making the decision to go on the transplant list was very difficult, didn't realize how stressful it was until I became inactive, the stress was lifted from me all i could think about was rejection and infection, was really scared, didn't worry about the surgery, just the rejection and infection when the time comes where the pf is ... don't remember how to express this ... where the pf is riskier than transplant, i will be ready for transplant not there at this time, but knowing that it is an option is comforting not sure where i am going with all of this wanted to respond to how important this web site is and the support from everyone in it is too many names to mention then i ramble on about other things -- blame it on the OD Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Thoughts on survivingTo: Breathe-Support Date: Wednesday, May 20, 2009, 8:33 PM beautifully said Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Thoughts on survivingTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 20, 2009, 9:49 AM Hi everyone, The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations. I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 I do have difficulty expressing myself, i tend to be factual when i write, however, this web site is usually one of the first things i do everyday (first is take fasting meds and letting the dog out) i do feel much closer to the people on this site than i do to the people who i see on a regular basis, except for Jerry no one else knows what it is like Jerry has a different disease and has been extremely ill many times when he had septic shock 2 summers ago, it was really scary, i just sat there watching the doctors and nurses working on him; their focus was on him and seemed to ignore me, except for any info i could give them about his medical history my mistake that morning was driving him to the ER, i should have called 911 when they moved him up to ICU, they provided me with an o2 tank, they didn't even ask if i needed it, they just brought it so Jerry can relate to all of this in a different way most of the time, when talking about my disease, it's kind of academic, like i am talking about someone else's body, not mine, even though i know it's mine, it doesn't feel real, there is no pain, just lots of coughing, shortness of breath, tiredness making the decision to go on the transplant list was very difficult, didn't realize how stressful it was until I became inactive, the stress was lifted from me all i could think about was rejection and infection, was really scared, didn't worry about the surgery, just the rejection and infection when the time comes where the pf is ... don't remember how to express this ... where the pf is riskier than transplant, i will be ready for transplant not there at this time, but knowing that it is an option is comforting not sure where i am going with all of this wanted to respond to how important this web site is and the support from everyone in it is too many names to mention then i ramble on about other things -- blame it on the OD Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Thoughts on survivingTo: Breathe-Support Date: Wednesday, May 20, 2009, 8:33 PM beautifully said Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Thoughts on survivingTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 20, 2009, 9:49 AM Hi everyone, The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations. I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 Pink And its so convenient. So much better than absent minded or scatter brained or senile. I just laugh and say " oxygen deprivation. " > > > > > > > > > > Hi everyone, > > The 29th of this month will mark 3 years since my diagnosis with > > pulmonary fibrosis. At that time in spite of my educational > > background and the fact that I am a nurse, I was baffled by this > > diagnosis. I had never seen it while I worked in a hospital setting > > and I knew no one who had it. Three weeks later at home I went to > > work on the internet. It took time but gradually things became > > clearer. My biopsy results came in and I educated myself. In July of > > 06 I found this group. Suddenly I was surrounded by people who 'got > > it'. People who understood what it was like to be hopped up on 100mg > > of prednisone at 3am, whose ribs hurt from coughing, who struggled to > > understand what was happening to them and make their way through the > > maze set before us. > > Little by little I fought my way through to find a 'new normal'. > > There are two reasons I was able to do this, the first was my family. > > My son, my parents and my siblings loved and encouraged me. The > > second reason was just as important as the first. This group. It's > > difficult to overstate how key this group has been for me. The daily > > encouragement, the sharing of knowledge, and ideas and joy and > > sorrow, it's all wrapped up right here in this amazing group of > people. > > Lots of things have changed for me in the last 3 years. I was > > approved for SSDI and began collecting in November of 06, Medicare > > finally kicked in in November of 08. I relocated from NY to NC in > > December of 07 and began seeing doctors at Duke. > > I've been able to 'work' part time. (loose definition of work LOL) > > I've learned how to travel by car and make it work for me. I've gone > > back to hobbies and activities that had fallen by the wayside when I > > was working 60 or 70 hours a week. I spend time differently than I > > used to. I choose to be with people that I love and do things that > > make me happy. I don't have the time or the inclination to do things > > just because other people expect that I should. I have some " friends " > > and family members that do not understand my diagnosis, nor do they > > care to understand.. .. Shrug....I don't worry about it anymore. I've > > learned you can't shove understanding into anyones head. Life is far > > too short and fragile to live for anyone else's expectations. > > > > I just felt like sharing this today. We've got many members who have > > joined in the last couple of months. We can all feel the fear and > > grief in some of the posts. We all get it, we've all been there and > > understand. There is a wide variety of specific diagnosis. There is a > > range of life expectancy. It's easy to get caught up in the specifics > > and there is a place for all of that. But the one thing I would > > suggest is not to let all that consume your life. Remember to make > > time to be happy. Keep it as simple as you need to but do something > > every single day that brings you some joy. Life is not over, it's > > different and maybe in some ways diminished but it's not over. > > One of my teenage nieces told me this weekend, " You're so cool, you > > get it. " I don't remember what we were talking about but I loved > > that she could look at her nearly 50 year old aunt, overweight and > > with oxygen tubing up her nose and see someone who's " Cool " . It > > doesn't get any better than that. > > > > Beth > > > > Moderator > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 Pink And its so convenient. So much better than absent minded or scatter brained or senile. I just laugh and say " oxygen deprivation. " > > > > > > > > > > Hi everyone, > > The 29th of this month will mark 3 years since my diagnosis with > > pulmonary fibrosis. At that time in spite of my educational > > background and the fact that I am a nurse, I was baffled by this > > diagnosis. I had never seen it while I worked in a hospital setting > > and I knew no one who had it. Three weeks later at home I went to > > work on the internet. It took time but gradually things became > > clearer. My biopsy results came in and I educated myself. In July of > > 06 I found this group. Suddenly I was surrounded by people who 'got > > it'. People who understood what it was like to be hopped up on 100mg > > of prednisone at 3am, whose ribs hurt from coughing, who struggled to > > understand what was happening to them and make their way through the > > maze set before us. > > Little by little I fought my way through to find a 'new normal'. > > There are two reasons I was able to do this, the first was my family. > > My son, my parents and my siblings loved and encouraged me. The > > second reason was just as important as the first. This group. It's > > difficult to overstate how key this group has been for me. The daily > > encouragement, the sharing of knowledge, and ideas and joy and > > sorrow, it's all wrapped up right here in this amazing group of > people. > > Lots of things have changed for me in the last 3 years. I was > > approved for SSDI and began collecting in November of 06, Medicare > > finally kicked in in November of 08. I relocated from NY to NC in > > December of 07 and began seeing doctors at Duke. > > I've been able to 'work' part time. (loose definition of work LOL) > > I've learned how to travel by car and make it work for me. I've gone > > back to hobbies and activities that had fallen by the wayside when I > > was working 60 or 70 hours a week. I spend time differently than I > > used to. I choose to be with people that I love and do things that > > make me happy. I don't have the time or the inclination to do things > > just because other people expect that I should. I have some " friends " > > and family members that do not understand my diagnosis, nor do they > > care to understand.. .. Shrug....I don't worry about it anymore. I've > > learned you can't shove understanding into anyones head. Life is far > > too short and fragile to live for anyone else's expectations. > > > > I just felt like sharing this today. We've got many members who have > > joined in the last couple of months. We can all feel the fear and > > grief in some of the posts. We all get it, we've all been there and > > understand. There is a wide variety of specific diagnosis. There is a > > range of life expectancy. It's easy to get caught up in the specifics > > and there is a place for all of that. But the one thing I would > > suggest is not to let all that consume your life. Remember to make > > time to be happy. Keep it as simple as you need to but do something > > every single day that brings you some joy. Life is not over, it's > > different and maybe in some ways diminished but it's not over. > > One of my teenage nieces told me this weekend, " You're so cool, you > > get it. " I don't remember what we were talking about but I loved > > that she could look at her nearly 50 year old aunt, overweight and > > with oxygen tubing up her nose and see someone who's " Cool " . It > > doesn't get any better than that. > > > > Beth > > > > Moderator > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 Pink And its so convenient. So much better than absent minded or scatter brained or senile. I just laugh and say " oxygen deprivation. " > > > > > > > > > > Hi everyone, > > The 29th of this month will mark 3 years since my diagnosis with > > pulmonary fibrosis. At that time in spite of my educational > > background and the fact that I am a nurse, I was baffled by this > > diagnosis. I had never seen it while I worked in a hospital setting > > and I knew no one who had it. Three weeks later at home I went to > > work on the internet. It took time but gradually things became > > clearer. My biopsy results came in and I educated myself. In July of > > 06 I found this group. Suddenly I was surrounded by people who 'got > > it'. People who understood what it was like to be hopped up on 100mg > > of prednisone at 3am, whose ribs hurt from coughing, who struggled to > > understand what was happening to them and make their way through the > > maze set before us. > > Little by little I fought my way through to find a 'new normal'. > > There are two reasons I was able to do this, the first was my family. > > My son, my parents and my siblings loved and encouraged me. The > > second reason was just as important as the first. This group. It's > > difficult to overstate how key this group has been for me. The daily > > encouragement, the sharing of knowledge, and ideas and joy and > > sorrow, it's all wrapped up right here in this amazing group of > people. > > Lots of things have changed for me in the last 3 years. I was > > approved for SSDI and began collecting in November of 06, Medicare > > finally kicked in in November of 08. I relocated from NY to NC in > > December of 07 and began seeing doctors at Duke. > > I've been able to 'work' part time. (loose definition of work LOL) > > I've learned how to travel by car and make it work for me. I've gone > > back to hobbies and activities that had fallen by the wayside when I > > was working 60 or 70 hours a week. I spend time differently than I > > used to. I choose to be with people that I love and do things that > > make me happy. I don't have the time or the inclination to do things > > just because other people expect that I should. I have some " friends " > > and family members that do not understand my diagnosis, nor do they > > care to understand.. .. Shrug....I don't worry about it anymore. I've > > learned you can't shove understanding into anyones head. Life is far > > too short and fragile to live for anyone else's expectations. > > > > I just felt like sharing this today. We've got many members who have > > joined in the last couple of months. We can all feel the fear and > > grief in some of the posts. We all get it, we've all been there and > > understand. There is a wide variety of specific diagnosis. There is a > > range of life expectancy. It's easy to get caught up in the specifics > > and there is a place for all of that. But the one thing I would > > suggest is not to let all that consume your life. Remember to make > > time to be happy. Keep it as simple as you need to but do something > > every single day that brings you some joy. Life is not over, it's > > different and maybe in some ways diminished but it's not over. > > One of my teenage nieces told me this weekend, " You're so cool, you > > get it. " I don't remember what we were talking about but I loved > > that she could look at her nearly 50 year old aunt, overweight and > > with oxygen tubing up her nose and see someone who's " Cool " . It > > doesn't get any better than that. > > > > Beth > > > > Moderator > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 thanks peggy my face is going from pink to blush Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Thoughts on survivingTo: Breathe-Support Date: Friday, May 22, 2009, 11:37 AM Pink, You are always an inspiration for us. You are quick and sure in your posts. I on the other hand tend to get gabby.. From the day and I met you for lunch I knew you were a special person. You looked frightened of this stupid disease like most of us did as newbies. I took you right to my heart as I have all the members since. To meet a member has always been such a special treat. Pink has always been my favorite color for a member.. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." I do have difficulty expressing myself, i tend to be factual when i write, however, this web site is usually one of the first things i do everyday (first is take fasting meds and letting the dog out) i do feel much closer to the people on this site than i do to the people who i see on a regular basis, except for Jerry no one else knows what it is like Jerry has a different disease and has been extremely ill many times when he had septic shock 2 summers ago, it was really scary, i just sat there watching the doctors and nurses working on him; their focus was on him and seemed to ignore me, except for any info i could give them about his medical history my mistake that morning was driving him to the ER, i should have called 911 when they moved him up to ICU, they provided me with an o2 tank, they didn't even ask if i needed it, they just brought it so Jerry can relate to all of this in a different way most of the time, when talking about my disease, it's kind of academic, like i am talking about someone else's body, not mine, even though i know it's mine, it doesn't feel real, there is no pain, just lots of coughing, shortness of breath, tiredness making the decision to go on the transplant list was very difficult, didn't realize how stressful it was until I became inactive, the stress was lifted from me all i could think about was rejection and infection, was really scared, didn't worry about the surgery, just the rejection and infection when the time comes where the pf is ... don't remember how to express this ... where the pf is riskier than transplant, i will be ready for transplant not there at this time, but knowing that it is an option is comforting not sure where i am going with all of this wanted to respond to how important this web site is and the support from everyone in it is too many names to mention then i ramble on about other things -- blame it on the OD Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Thoughts on survivingTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 20, 2009, 9:49 AM Hi everyone, The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations. I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 thanks peggy my face is going from pink to blush Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Thoughts on survivingTo: Breathe-Support Date: Friday, May 22, 2009, 11:37 AM Pink, You are always an inspiration for us. You are quick and sure in your posts. I on the other hand tend to get gabby.. From the day and I met you for lunch I knew you were a special person. You looked frightened of this stupid disease like most of us did as newbies. I took you right to my heart as I have all the members since. To meet a member has always been such a special treat. Pink has always been my favorite color for a member.. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." I do have difficulty expressing myself, i tend to be factual when i write, however, this web site is usually one of the first things i do everyday (first is take fasting meds and letting the dog out) i do feel much closer to the people on this site than i do to the people who i see on a regular basis, except for Jerry no one else knows what it is like Jerry has a different disease and has been extremely ill many times when he had septic shock 2 summers ago, it was really scary, i just sat there watching the doctors and nurses working on him; their focus was on him and seemed to ignore me, except for any info i could give them about his medical history my mistake that morning was driving him to the ER, i should have called 911 when they moved him up to ICU, they provided me with an o2 tank, they didn't even ask if i needed it, they just brought it so Jerry can relate to all of this in a different way most of the time, when talking about my disease, it's kind of academic, like i am talking about someone else's body, not mine, even though i know it's mine, it doesn't feel real, there is no pain, just lots of coughing, shortness of breath, tiredness making the decision to go on the transplant list was very difficult, didn't realize how stressful it was until I became inactive, the stress was lifted from me all i could think about was rejection and infection, was really scared, didn't worry about the surgery, just the rejection and infection when the time comes where the pf is ... don't remember how to express this ... where the pf is riskier than transplant, i will be ready for transplant not there at this time, but knowing that it is an option is comforting not sure where i am going with all of this wanted to respond to how important this web site is and the support from everyone in it is too many names to mention then i ramble on about other things -- blame it on the OD Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Thoughts on survivingTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 20, 2009, 9:49 AM Hi everyone, The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations. I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 thanks peggy my face is going from pink to blush Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Thoughts on survivingTo: Breathe-Support Date: Friday, May 22, 2009, 11:37 AM Pink, You are always an inspiration for us. You are quick and sure in your posts. I on the other hand tend to get gabby.. From the day and I met you for lunch I knew you were a special person. You looked frightened of this stupid disease like most of us did as newbies. I took you right to my heart as I have all the members since. To meet a member has always been such a special treat. Pink has always been my favorite color for a member.. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." I do have difficulty expressing myself, i tend to be factual when i write, however, this web site is usually one of the first things i do everyday (first is take fasting meds and letting the dog out) i do feel much closer to the people on this site than i do to the people who i see on a regular basis, except for Jerry no one else knows what it is like Jerry has a different disease and has been extremely ill many times when he had septic shock 2 summers ago, it was really scary, i just sat there watching the doctors and nurses working on him; their focus was on him and seemed to ignore me, except for any info i could give them about his medical history my mistake that morning was driving him to the ER, i should have called 911 when they moved him up to ICU, they provided me with an o2 tank, they didn't even ask if i needed it, they just brought it so Jerry can relate to all of this in a different way most of the time, when talking about my disease, it's kind of academic, like i am talking about someone else's body, not mine, even though i know it's mine, it doesn't feel real, there is no pain, just lots of coughing, shortness of breath, tiredness making the decision to go on the transplant list was very difficult, didn't realize how stressful it was until I became inactive, the stress was lifted from me all i could think about was rejection and infection, was really scared, didn't worry about the surgery, just the rejection and infection when the time comes where the pf is ... don't remember how to express this ... where the pf is riskier than transplant, i will be ready for transplant not there at this time, but knowing that it is an option is comforting not sure where i am going with all of this wanted to respond to how important this web site is and the support from everyone in it is too many names to mention then i ramble on about other things -- blame it on the OD Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Thoughts on survivingTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 20, 2009, 9:49 AM Hi everyone, The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations. I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 I remember it so well too. stepping off the sidewalk so he could give you a hug..LOL  He has a hard time with we shorties. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Peggy i do remember how "experienced" you seemed to be with this disease and how knowledgeable about using o2  i also remember how you and john held hands during the blessing before the meal  and i remember how soft you were when we hugged positive thoughts all the way   Pink Joyce (IPF 3/06)  IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Thoughts on survivingTo: Breathe-Support Date: Friday, May 22, 2009, 11:37 AM Pink, You are always an inspiration for us. You are quick and sure in your posts. I on the other hand tend to get gabby.. From the day and I met you for lunch I knew you were a special person. You looked frightened of this stupid disease like most of us did as newbies. I took you right to my heart as I have all the members since.  To meet a member has always been such a special treat. Pink has always been my favorite color for a member..   Love & Prayers, Peggy Florida,  IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." <pastedGraphic.tiff> I do have difficulty expressing myself, i tend to be factual when i write, however, this web site is usually one of the first things i do everyday (first is take fasting meds and letting the dog out)  i do feel much closer to the people on this site than i do to the people who i see on a regular basis, except for Jerry  no one else knows what it is like  Jerry has a different disease and has been extremely ill many times when he had septic shock 2 summers ago, it was really scary, i just sat there watching the doctors and nurses working on him; their focus was on him and seemed to ignore me, except for any info i could give them about his medical history  my mistake that morning was driving him to the ER, i should have called 911  when they moved him up to ICU, they provided me with an o2 tank, they didn't even ask if i needed it, they just brought it  so Jerry can relate to all of this in a different way  most of the time, when talking about my disease, it's kind of academic, like i am talking about someone else's body, not mine, even though i know it's mine, it doesn't feel real, there is no pain, just lots of coughing, shortness of breath, tiredness  making the decision to go on the transplant list was very difficult, didn't realize how stressful it was until I became inactive, the stress was lifted from me  all i could think about was rejection and infection, was really scared, didn't worry about the surgery, just the rejection and infection  when the time comes where the pf is ... don't remember how to express this ... where the pf is riskier than transplant, i will be ready for transplant  not there at this time, but knowing that it is an option is comforting  not sure where i am going with all of this wanted to respond to how important this web site is and the support from everyone in it is  too many names to mention  then i ramble on about other things -- blame it on the OD    Pink Joyce (IPF 3/06)  IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org--- On Wed, 5/20/09, Joyce T Rosenberg <pinkrockybeach@ yahoo.com> wrote: From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>Subject: Re: Thoughts on survivingTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 20, 2009, 8:33 PM beautifully said Pink Joyce (IPF 3/06)  IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org--- On Wed, 5/20/09, Beth <mbmurtha (AT) yahoo (DOT) com> wrote: From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Thoughts on survivingTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 20, 2009, 9:49 AM Hi everyone, The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head.  Life is far too short and fragile to live for anyone else's expectations.  I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that.  Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 I remember it so well too. stepping off the sidewalk so he could give you a hug..LOL  He has a hard time with we shorties. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Peggy i do remember how "experienced" you seemed to be with this disease and how knowledgeable about using o2  i also remember how you and john held hands during the blessing before the meal  and i remember how soft you were when we hugged positive thoughts all the way   Pink Joyce (IPF 3/06)  IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Thoughts on survivingTo: Breathe-Support Date: Friday, May 22, 2009, 11:37 AM Pink, You are always an inspiration for us. You are quick and sure in your posts. I on the other hand tend to get gabby.. From the day and I met you for lunch I knew you were a special person. You looked frightened of this stupid disease like most of us did as newbies. I took you right to my heart as I have all the members since.  To meet a member has always been such a special treat. Pink has always been my favorite color for a member..   Love & Prayers, Peggy Florida,  IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." <pastedGraphic.tiff> I do have difficulty expressing myself, i tend to be factual when i write, however, this web site is usually one of the first things i do everyday (first is take fasting meds and letting the dog out)  i do feel much closer to the people on this site than i do to the people who i see on a regular basis, except for Jerry  no one else knows what it is like  Jerry has a different disease and has been extremely ill many times when he had septic shock 2 summers ago, it was really scary, i just sat there watching the doctors and nurses working on him; their focus was on him and seemed to ignore me, except for any info i could give them about his medical history  my mistake that morning was driving him to the ER, i should have called 911  when they moved him up to ICU, they provided me with an o2 tank, they didn't even ask if i needed it, they just brought it  so Jerry can relate to all of this in a different way  most of the time, when talking about my disease, it's kind of academic, like i am talking about someone else's body, not mine, even though i know it's mine, it doesn't feel real, there is no pain, just lots of coughing, shortness of breath, tiredness  making the decision to go on the transplant list was very difficult, didn't realize how stressful it was until I became inactive, the stress was lifted from me  all i could think about was rejection and infection, was really scared, didn't worry about the surgery, just the rejection and infection  when the time comes where the pf is ... don't remember how to express this ... where the pf is riskier than transplant, i will be ready for transplant  not there at this time, but knowing that it is an option is comforting  not sure where i am going with all of this wanted to respond to how important this web site is and the support from everyone in it is  too many names to mention  then i ramble on about other things -- blame it on the OD    Pink Joyce (IPF 3/06)  IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org--- On Wed, 5/20/09, Joyce T Rosenberg <pinkrockybeach@ yahoo.com> wrote: From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>Subject: Re: Thoughts on survivingTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 20, 2009, 8:33 PM beautifully said Pink Joyce (IPF 3/06)  IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org--- On Wed, 5/20/09, Beth <mbmurtha (AT) yahoo (DOT) com> wrote: From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Thoughts on survivingTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 20, 2009, 9:49 AM Hi everyone, The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head.  Life is far too short and fragile to live for anyone else's expectations.  I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that.  Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 Pink.... it was Peggy who started the OD. I think! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Thoughts on survivingTo: Breathe-Support Date: Wednesday, May 20, 2009, 6:42 PM Beth & Peggy,I am sitting here at work crying my eyes out because you all 'get' itand said so eloquently what we all feel. I went to the movies thisweekend with 2 of my daughters and we did lunch and had a wonderful timeand I tried so hard not to be angry because I got so tired walking justthe little bit that I did. It frightens me because I watched my motherdie of this damn disease and I want to spare my children and of course Ican't. My faith is strong but that doesn't mean it doesn't hurt to seefright on their faces. I will do everything I can and keep going aslong as I can but at the same time I've learned to ask for help and thathas been the hardest of all. I read all these posts and it helps somuch. Bruce is amazing with all his knowledge, keeps me laughing(and as she can tell ALL Americans think Aussies are just too cool) Waltand Sunny and everyone whos name is stuck in my head (if cancer patientsget chemo brain do we get predenisone brain or loss of o2 brain - weneed a cool term ) make me realize that we all have more courage thanpeople know. I think all us newbies thank you so much for being therefor us. Thank youDyane Phoenix IPF 02>>>>> Hi everyone,> The 29th of this month will mark 3 years since my diagnosis with> pulmonary fibrosis. At that time in spite of my educational> background and the fact that I am a nurse, I was baffled by this> diagnosis. I had never seen it while I worked in a hospital setting> and I knew no one who had it. Three weeks later at home I went to> work on the internet. It took time but gradually things became> clearer. My biopsy results came in and I educated myself. In July of> 06 I found this group. Suddenly I was surrounded by people who 'got> it'. People who understood what it was like to be hopped up on 100mg> of prednisone at 3am, whose ribs hurt from coughing, who struggled to> understand what was happening to them and make their way through the> maze set before us.> Little by little I fought my way through to find a 'new normal'.> There are two reasons I was able to do this, the first was my family.> My son, my parents and my siblings loved and encouraged me. The> second reason was just as important as the first. This group. It's> difficult to overstate how key this group has been for me. The daily> encouragement, the sharing of knowledge, and ideas and joy and> sorrow, it's all wrapped up right here in this amazing group ofpeople.> Lots of things have changed for me in the last 3 years. I was> approved for SSDI and began collecting in November of 06, Medicare> finally kicked in in November of 08. I relocated from NY to NC in> December of 07 and began seeing doctors at Duke.> I've been able to 'work' part time. (loose definition of work LOL)> I've learned how to travel by car and make it work for me. I've gone> back to hobbies and activities that had fallen by the wayside when I> was working 60 or 70 hours a week. I spend time differently than I> used to. I choose to be with people that I love and do things that> make me happy. I don't have the time or the inclination to do things> just because other people expect that I should. I have some "friends"> and family members that do not understand my diagnosis, nor do they> care to understand.. .. Shrug....I don't worry about it anymore. I've> learned you can't shove understanding into anyones head. Life is far> too short and fragile to live for anyone else's expectations.>> I just felt like sharing this today. We've got many members who have> joined in the last couple of months. We can all feel the fear and> grief in some of the posts. We all get it, we've all been there and> understand. There is a wide variety of specific diagnosis. There is a> range of life expectancy. It's easy to get caught up in the specifics> and there is a place for all of that. But the one thing I would> suggest is not to let all that consume your life. Remember to make> time to be happy. Keep it as simple as you need to but do something> every single day that brings you some joy. Life is not over, it's> different and maybe in some ways diminished but it's not over.> One of my teenage nieces told me this weekend, "You're so cool, you> get it." I don't remember what we were talking about but I loved> that she could look at her nearly 50 year old aunt, overweight and> with oxygen tubing up her nose and see someone who's "Cool". It> doesn't get any better than that.>> Beth>> Moderator>> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 Pink.... it was Peggy who started the OD. I think! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Thoughts on survivingTo: Breathe-Support Date: Wednesday, May 20, 2009, 6:42 PM Beth & Peggy,I am sitting here at work crying my eyes out because you all 'get' itand said so eloquently what we all feel. I went to the movies thisweekend with 2 of my daughters and we did lunch and had a wonderful timeand I tried so hard not to be angry because I got so tired walking justthe little bit that I did. It frightens me because I watched my motherdie of this damn disease and I want to spare my children and of course Ican't. My faith is strong but that doesn't mean it doesn't hurt to seefright on their faces. I will do everything I can and keep going aslong as I can but at the same time I've learned to ask for help and thathas been the hardest of all. I read all these posts and it helps somuch. Bruce is amazing with all his knowledge, keeps me laughing(and as she can tell ALL Americans think Aussies are just too cool) Waltand Sunny and everyone whos name is stuck in my head (if cancer patientsget chemo brain do we get predenisone brain or loss of o2 brain - weneed a cool term ) make me realize that we all have more courage thanpeople know. I think all us newbies thank you so much for being therefor us. Thank youDyane Phoenix IPF 02>>>>> Hi everyone,> The 29th of this month will mark 3 years since my diagnosis with> pulmonary fibrosis. At that time in spite of my educational> background and the fact that I am a nurse, I was baffled by this> diagnosis. I had never seen it while I worked in a hospital setting> and I knew no one who had it. Three weeks later at home I went to> work on the internet. It took time but gradually things became> clearer. My biopsy results came in and I educated myself. In July of> 06 I found this group. Suddenly I was surrounded by people who 'got> it'. People who understood what it was like to be hopped up on 100mg> of prednisone at 3am, whose ribs hurt from coughing, who struggled to> understand what was happening to them and make their way through the> maze set before us.> Little by little I fought my way through to find a 'new normal'.> There are two reasons I was able to do this, the first was my family.> My son, my parents and my siblings loved and encouraged me. The> second reason was just as important as the first. This group. It's> difficult to overstate how key this group has been for me. The daily> encouragement, the sharing of knowledge, and ideas and joy and> sorrow, it's all wrapped up right here in this amazing group ofpeople.> Lots of things have changed for me in the last 3 years. I was> approved for SSDI and began collecting in November of 06, Medicare> finally kicked in in November of 08. I relocated from NY to NC in> December of 07 and began seeing doctors at Duke.> I've been able to 'work' part time. (loose definition of work LOL)> I've learned how to travel by car and make it work for me. I've gone> back to hobbies and activities that had fallen by the wayside when I> was working 60 or 70 hours a week. I spend time differently than I> used to. I choose to be with people that I love and do things that> make me happy. I don't have the time or the inclination to do things> just because other people expect that I should. I have some "friends"> and family members that do not understand my diagnosis, nor do they> care to understand.. .. Shrug....I don't worry about it anymore. I've> learned you can't shove understanding into anyones head. Life is far> too short and fragile to live for anyone else's expectations.>> I just felt like sharing this today. We've got many members who have> joined in the last couple of months. We can all feel the fear and> grief in some of the posts. We all get it, we've all been there and> understand. There is a wide variety of specific diagnosis. There is a> range of life expectancy. It's easy to get caught up in the specifics> and there is a place for all of that. But the one thing I would> suggest is not to let all that consume your life. Remember to make> time to be happy. Keep it as simple as you need to but do something> every single day that brings you some joy. Life is not over, it's> different and maybe in some ways diminished but it's not over.> One of my teenage nieces told me this weekend, "You're so cool, you> get it." I don't remember what we were talking about but I loved> that she could look at her nearly 50 year old aunt, overweight and> with oxygen tubing up her nose and see someone who's "Cool". It> doesn't get any better than that.>> Beth>> Moderator>> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 Pink.... it was Peggy who started the OD. I think! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Thoughts on survivingTo: Breathe-Support Date: Wednesday, May 20, 2009, 6:42 PM Beth & Peggy,I am sitting here at work crying my eyes out because you all 'get' itand said so eloquently what we all feel. I went to the movies thisweekend with 2 of my daughters and we did lunch and had a wonderful timeand I tried so hard not to be angry because I got so tired walking justthe little bit that I did. It frightens me because I watched my motherdie of this damn disease and I want to spare my children and of course Ican't. My faith is strong but that doesn't mean it doesn't hurt to seefright on their faces. I will do everything I can and keep going aslong as I can but at the same time I've learned to ask for help and thathas been the hardest of all. I read all these posts and it helps somuch. Bruce is amazing with all his knowledge, keeps me laughing(and as she can tell ALL Americans think Aussies are just too cool) Waltand Sunny and everyone whos name is stuck in my head (if cancer patientsget chemo brain do we get predenisone brain or loss of o2 brain - weneed a cool term ) make me realize that we all have more courage thanpeople know. I think all us newbies thank you so much for being therefor us. Thank youDyane Phoenix IPF 02>>>>> Hi everyone,> The 29th of this month will mark 3 years since my diagnosis with> pulmonary fibrosis. At that time in spite of my educational> background and the fact that I am a nurse, I was baffled by this> diagnosis. I had never seen it while I worked in a hospital setting> and I knew no one who had it. Three weeks later at home I went to> work on the internet. It took time but gradually things became> clearer. My biopsy results came in and I educated myself. In July of> 06 I found this group. Suddenly I was surrounded by people who 'got> it'. People who understood what it was like to be hopped up on 100mg> of prednisone at 3am, whose ribs hurt from coughing, who struggled to> understand what was happening to them and make their way through the> maze set before us.> Little by little I fought my way through to find a 'new normal'.> There are two reasons I was able to do this, the first was my family.> My son, my parents and my siblings loved and encouraged me. The> second reason was just as important as the first. This group. It's> difficult to overstate how key this group has been for me. The daily> encouragement, the sharing of knowledge, and ideas and joy and> sorrow, it's all wrapped up right here in this amazing group ofpeople.> Lots of things have changed for me in the last 3 years. I was> approved for SSDI and began collecting in November of 06, Medicare> finally kicked in in November of 08. I relocated from NY to NC in> December of 07 and began seeing doctors at Duke.> I've been able to 'work' part time. (loose definition of work LOL)> I've learned how to travel by car and make it work for me. I've gone> back to hobbies and activities that had fallen by the wayside when I> was working 60 or 70 hours a week. I spend time differently than I> used to. I choose to be with people that I love and do things that> make me happy. I don't have the time or the inclination to do things> just because other people expect that I should. I have some "friends"> and family members that do not understand my diagnosis, nor do they> care to understand.. .. Shrug....I don't worry about it anymore. I've> learned you can't shove understanding into anyones head. Life is far> too short and fragile to live for anyone else's expectations.>> I just felt like sharing this today. We've got many members who have> joined in the last couple of months. We can all feel the fear and> grief in some of the posts. We all get it, we've all been there and> understand. There is a wide variety of specific diagnosis. There is a> range of life expectancy. It's easy to get caught up in the specifics> and there is a place for all of that. But the one thing I would> suggest is not to let all that consume your life. Remember to make> time to be happy. Keep it as simple as you need to but do something> every single day that brings you some joy. Life is not over, it's> different and maybe in some ways diminished but it's not over.> One of my teenage nieces told me this weekend, "You're so cool, you> get it." I don't remember what we were talking about but I loved> that she could look at her nearly 50 year old aunt, overweight and> with oxygen tubing up her nose and see someone who's "Cool". It> doesn't get any better than that.>> Beth>> Moderator>> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 Pink..... I'm like you, I am factual when I write and I wish I could un-learn what I've learned as a free-lance writer. It's called "writing tight". Sometimes I get too 'tight' I think. I like your posts Pink, easy to read and to the point......unlike you, I tend to get verbose at times. lol I can't imagine what it would be like to not have the board communication. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Thoughts on survivingTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 20, 2009, 9:49 AM Hi everyone, The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations. I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 Pink..... I'm like you, I am factual when I write and I wish I could un-learn what I've learned as a free-lance writer. It's called "writing tight". Sometimes I get too 'tight' I think. I like your posts Pink, easy to read and to the point......unlike you, I tend to get verbose at times. lol I can't imagine what it would be like to not have the board communication. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Thoughts on survivingTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 20, 2009, 9:49 AM Hi everyone, The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations. I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 Ohhhh so I'm an OB with OD LOL (OB stands for Office B***h) Also I am the Most Powerful Women in Phoenix since my ex decided I caused all his woes and made his family hate him Bwah ha ha ha... My granddaughter graduated 8th Grade today, I was so proud of her.. she was one of 3 validictorians, she won Math student of the year, and received a 2nd place in a state sponsored compitition by writing an essay on Nanotechnologies of all things. Her val speech actually talked about personal responsibility, something sadly lacking in this world. I realized she had been listening to me and her mother. Thanks for letting me brag. Hugs and Prayers to MB We Miss You Dyane PHoenix IPF 02 > > > > > > > > > > Hi everyone, > > The 29th of this month will mark 3 years since my diagnosis with > > pulmonary fibrosis. At that time in spite of my educational > > background and the fact that I am a nurse, I was baffled by this > > diagnosis. I had never seen it while I worked in a hospital setting > > and I knew no one who had it. Three weeks later at home I went to > > work on the internet. It took time but gradually things became > > clearer. My biopsy results came in and I educated myself. In July of > > 06 I found this group. Suddenly I was surrounded by people who 'got > > it'. People who understood what it was like to be hopped up on 100mg > > of prednisone at 3am, whose ribs hurt from coughing, who struggled to > > understand what was happening to them and make their way through the > > maze set before us. > > Little by little I fought my way through to find a 'new normal'. > > There are two reasons I was able to do this, the first was my family. > > My son, my parents and my siblings loved and encouraged me. The > > second reason was just as important as the first. This group. It's > > difficult to overstate how key this group has been for me. The daily > > encouragement, the sharing of knowledge, and ideas and joy and > > sorrow, it's all wrapped up right here in this amazing group of > people. > > Lots of things have changed for me in the last 3 years. I was > > approved for SSDI and began collecting in November of 06, Medicare > > finally kicked in in November of 08. I relocated from NY to NC in > > December of 07 and began seeing doctors at Duke. > > I've been able to 'work' part time. (loose definition of work LOL) > > I've learned how to travel by car and make it work for me. I've gone > > back to hobbies and activities that had fallen by the wayside when I > > was working 60 or 70 hours a week. I spend time differently than I > > used to. I choose to be with people that I love and do things that > > make me happy. I don't have the time or the inclination to do things > > just because other people expect that I should. I have some " friends " > > and family members that do not understand my diagnosis, nor do they > > care to understand.. .. Shrug....I don't worry about it anymore. I've > > learned you can't shove understanding into anyones head. Life is far > > too short and fragile to live for anyone else's expectations. > > > > I just felt like sharing this today. We've got many members who have > > joined in the last couple of months. We can all feel the fear and > > grief in some of the posts. We all get it, we've all been there and > > understand. There is a wide variety of specific diagnosis. There is a > > range of life expectancy. It's easy to get caught up in the specifics > > and there is a place for all of that. But the one thing I would > > suggest is not to let all that consume your life. Remember to make > > time to be happy. Keep it as simple as you need to but do something > > every single day that brings you some joy. Life is not over, it's > > different and maybe in some ways diminished but it's not over. > > One of my teenage nieces told me this weekend, " You're so cool, you > > get it. " I don't remember what we were talking about but I loved > > that she could look at her nearly 50 year old aunt, overweight and > > with oxygen tubing up her nose and see someone who's " Cool " . It > > doesn't get any better than that. > > > > Beth > > > > Moderator > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009 > > Hi everyone, > The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. > Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. > Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. > I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some " friends " and family members that do not understand my diagnosis, nor do they care to understand.... Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head.  Life is far too short and fragile to live for anyone else's expectations. > > I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. > One of my teenage nieces told me this weekend, " You're so cool, you get it. "  I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's " Cool " . It doesn't get any better than that. > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009 > > Hi everyone, > The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. > Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. > Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. > I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some " friends " and family members that do not understand my diagnosis, nor do they care to understand.... Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head.  Life is far too short and fragile to live for anyone else's expectations. > > I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. > One of my teenage nieces told me this weekend, " You're so cool, you get it. "  I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's " Cool " . It doesn't get any better than that. > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009 Joe, PURFECT ! Love & Prayers, PeggyFlorida,  IPF 2004'To get something you had, you have to do something you never did'When God takes something from your grasp, He's not pushing you, but  merely opening your hands to receive something better. MB,    I loved your synopsis and I took the liberty to write this short commentary and forward your e-mail to several of my friends and relatives. I could not put in words about the way I feel the way you did and I felt compelled to forward it. A lot of friends and relatives seem to think this is a made up disease and the O2 hose is for fun and sympathy and when you do not do as expected you use the hose for a cop out or excuse to keep from doing the expected. How I would love to do the expected and not have the disease and trying to make other people who are uninformed or ignorant "get it".    I do not send e-mails out every day but Do read and appreciate everyone's comments, love, caring, concern,understanding, and above all SUPPORT for the ones here. MB I want to shout out to you, THANKS for every e-mail you send and comments that you provide. Also Bruce for advice to all ( Honorary Dr.) as well. I would say in 99.9% of the time I agree with all.                                                                                               Love all on this site,                                                                                                   Joe  JOE & JOANIE LAMENSKIEIPF JAN. 2008<623F0803-7C92-475D-8EC7-475EF6DF7133>   As everyone knows I have pulmonary fibrosis and not everyone understands the disease. Obviously if I did not have it, I would not either. Everyone understands cancer, heart attack, stroke, leukemia, multiple sclerosis, muscular distrophy, etc. Few people have heard of IPF. I do belong to this Internet support group (as well as one at Emory hospital) and it helps to have people who really understand the disease. As I have stated in previous e-mails, I am not asking for sympathy,(found in dictionary between shit and syphilis) just some idea and understanding. Attached is a letter written by the Moderator of the internet support group that speaks volumes for how most of us feel that have been stricken with this disease. We do not like to dwell on it but when you try to do normal mundane daily activities you can not help think about it as it slaps you in the face or kicks you in the butt.    All I am asking is appreciate your health and DO NOT take for granted walking up steps, mowing lawn, washing the car, vacuuming, walking, running, and even talking as it takes lungs to do that. Thank God every day for what YOU take for granted.                                                                          As always thanks for prayers and support for Joanie and me,                                                                                                                                                                         Joe                                                                                   JOE & JOANIE LAMENSKIEIPF JAN. 2008<AA934315-46C7-4D18-8F24-7C0B4B8A4F6C>                                                                                    >> Hi everyone,> The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. > Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. > Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. > I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.... Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head.  Life is far too short and fragile to live for anyone else's expectations.> > I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. > One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that.> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  <0AEC36FE-C4EF-416C-9782-43CD990F2BA9> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009 Sher i think you are correct Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: Thoughts on survivingTo: Breathe-Support Date: Friday, May 22, 2009, 1:33 PM Pink.... it was Peggy who started the OD. I think! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Thoughts on survivingTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 20, 2009, 6:42 PM Beth & Peggy,I am sitting here at work crying my eyes out because you all 'get' itand said so eloquently what we all feel. I went to the movies thisweekend with 2 of my daughters and we did lunch and had a wonderful timeand I tried so hard not to be angry because I got so tired walking justthe little bit that I did. It frightens me because I watched my motherdie of this damn disease and I want to spare my children and of course Ican't. My faith is strong but that doesn't mean it doesn't hurt to seefright on their faces. I will do everything I can and keep going aslong as I can but at the same time I've learned to ask for help and thathas been the hardest of all. I read all these posts and it helps somuch. Bruce is amazing with all his knowledge, keeps me laughing(and as she can tell ALL Americans think Aussies are just too cool) Waltand Sunny and everyone whos name is stuck in my head (if cancer patientsget chemo brain do we get predenisone brain or loss of o2 brain - weneed a cool term ) make me realize that we all have more courage thanpeople know. I think all us newbies thank you so much for being therefor us. Thank youDyane Phoenix IPF 02>>>>> Hi everyone,> The 29th of this month will mark 3 years since my diagnosis with> pulmonary fibrosis. At that time in spite of my educational> background and the fact that I am a nurse, I was baffled by this> diagnosis. I had never seen it while I worked in a hospital setting> and I knew no one who had it. Three weeks later at home I went to> work on the internet. It took time but gradually things became> clearer. My biopsy results came in and I educated myself. In July of> 06 I found this group. Suddenly I was surrounded by people who 'got> it'. People who understood what it was like to be hopped up on 100mg> of prednisone at 3am, whose ribs hurt from coughing, who struggled to> understand what was happening to them and make their way through the> maze set before us.> Little by little I fought my way through to find a 'new normal'.> There are two reasons I was able to do this, the first was my family.> My son, my parents and my siblings loved and encouraged me. The> second reason was just as important as the first. This group. It's> difficult to overstate how key this group has been for me. The daily> encouragement, the sharing of knowledge, and ideas and joy and> sorrow, it's all wrapped up right here in this amazing group ofpeople.> Lots of things have changed for me in the last 3 years. I was> approved for SSDI and began collecting in November of 06, Medicare> finally kicked in in November of 08. I relocated from NY to NC in> December of 07 and began seeing doctors at Duke.> I've been able to 'work' part time. (loose definition of work LOL)> I've learned how to travel by car and make it work for me. I've gone> back to hobbies and activities that had fallen by the wayside when I> was working 60 or 70 hours a week. I spend time differently than I> used to. I choose to be with people that I love and do things that> make me happy. I don't have the time or the inclination to do things> just because other people expect that I should. I have some "friends"> and family members that do not understand my diagnosis, nor do they> care to understand.. .. Shrug....I don't worry about it anymore. I've> learned you can't shove understanding into anyones head. Life is far> too short and fragile to live for anyone else's expectations.>> I just felt like sharing this today. We've got many members who have> joined in the last couple of months. We can all feel the fear and> grief in some of the posts. We all get it, we've all been there and> understand. There is a wide variety of specific diagnosis. There is a> range of life expectancy. It's easy to get caught up in the specifics> and there is a place for all of that. But the one thing I would> suggest is not to let all that consume your life. Remember to make> time to be happy. Keep it as simple as you need to but do something> every single day that brings you some joy. Life is not over, it's> different and maybe in some ways diminished but it's not over.> One of my teenage nieces told me this weekend, "You're so cool, you> get it." I don't remember what we were talking about but I loved> that she could look at her nearly 50 year old aunt, overweight and> with oxygen tubing up her nose and see someone who's "Cool". It> doesn't get any better than that.>> Beth>> Moderator>> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009 Sher i think you are correct Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Re: Thoughts on survivingTo: Breathe-Support Date: Friday, May 22, 2009, 1:33 PM Pink.... it was Peggy who started the OD. I think! MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Thoughts on survivingTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 20, 2009, 6:42 PM Beth & Peggy,I am sitting here at work crying my eyes out because you all 'get' itand said so eloquently what we all feel. I went to the movies thisweekend with 2 of my daughters and we did lunch and had a wonderful timeand I tried so hard not to be angry because I got so tired walking justthe little bit that I did. It frightens me because I watched my motherdie of this damn disease and I want to spare my children and of course Ican't. My faith is strong but that doesn't mean it doesn't hurt to seefright on their faces. I will do everything I can and keep going aslong as I can but at the same time I've learned to ask for help and thathas been the hardest of all. I read all these posts and it helps somuch. Bruce is amazing with all his knowledge, keeps me laughing(and as she can tell ALL Americans think Aussies are just too cool) Waltand Sunny and everyone whos name is stuck in my head (if cancer patientsget chemo brain do we get predenisone brain or loss of o2 brain - weneed a cool term ) make me realize that we all have more courage thanpeople know. I think all us newbies thank you so much for being therefor us. Thank youDyane Phoenix IPF 02>>>>> Hi everyone,> The 29th of this month will mark 3 years since my diagnosis with> pulmonary fibrosis. At that time in spite of my educational> background and the fact that I am a nurse, I was baffled by this> diagnosis. I had never seen it while I worked in a hospital setting> and I knew no one who had it. Three weeks later at home I went to> work on the internet. It took time but gradually things became> clearer. My biopsy results came in and I educated myself. In July of> 06 I found this group. Suddenly I was surrounded by people who 'got> it'. People who understood what it was like to be hopped up on 100mg> of prednisone at 3am, whose ribs hurt from coughing, who struggled to> understand what was happening to them and make their way through the> maze set before us.> Little by little I fought my way through to find a 'new normal'.> There are two reasons I was able to do this, the first was my family.> My son, my parents and my siblings loved and encouraged me. The> second reason was just as important as the first. This group. It's> difficult to overstate how key this group has been for me. The daily> encouragement, the sharing of knowledge, and ideas and joy and> sorrow, it's all wrapped up right here in this amazing group ofpeople.> Lots of things have changed for me in the last 3 years. I was> approved for SSDI and began collecting in November of 06, Medicare> finally kicked in in November of 08. I relocated from NY to NC in> December of 07 and began seeing doctors at Duke.> I've been able to 'work' part time. (loose definition of work LOL)> I've learned how to travel by car and make it work for me. I've gone> back to hobbies and activities that had fallen by the wayside when I> was working 60 or 70 hours a week. I spend time differently than I> used to. I choose to be with people that I love and do things that> make me happy. I don't have the time or the inclination to do things> just because other people expect that I should. I have some "friends"> and family members that do not understand my diagnosis, nor do they> care to understand.. .. Shrug....I don't worry about it anymore. I've> learned you can't shove understanding into anyones head. Life is far> too short and fragile to live for anyone else's expectations.>> I just felt like sharing this today. We've got many members who have> joined in the last couple of months. We can all feel the fear and> grief in some of the posts. We all get it, we've all been there and> understand. There is a wide variety of specific diagnosis. There is a> range of life expectancy. It's easy to get caught up in the specifics> and there is a place for all of that. But the one thing I would> suggest is not to let all that consume your life. Remember to make> time to be happy. Keep it as simple as you need to but do something> every single day that brings you some joy. Life is not over, it's> different and maybe in some ways diminished but it's not over.> One of my teenage nieces told me this weekend, "You're so cool, you> get it." I don't remember what we were talking about but I loved> that she could look at her nearly 50 year old aunt, overweight and> with oxygen tubing up her nose and see someone who's "Cool". It> doesn't get any better than that.>> Beth>> Moderator>> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009 Sher i think there is more feeling in your posts than in mine Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Thoughts on survivingTo: Breathe-Support Date: Friday, May 22, 2009, 1:45 PM Pink..... I'm like you, I am factual when I write and I wish I could un-learn what I've learned as a free-lance writer. It's called "writing tight". Sometimes I get too 'tight' I think. I like your posts Pink, easy to read and to the point......unlike you, I tend to get verbose at times. lol I can't imagine what it would be like to not have the board communication. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Thoughts on survivingTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 20, 2009, 9:49 AM Hi everyone, The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations. I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009 Sher i think there is more feeling in your posts than in mine Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Thoughts on survivingTo: Breathe-Support Date: Friday, May 22, 2009, 1:45 PM Pink..... I'm like you, I am factual when I write and I wish I could un-learn what I've learned as a free-lance writer. It's called "writing tight". Sometimes I get too 'tight' I think. I like your posts Pink, easy to read and to the point......unlike you, I tend to get verbose at times. lol I can't imagine what it would be like to not have the board communication. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Thoughts on survivingTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 20, 2009, 9:49 AM Hi everyone, The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some "friends" and family members that do not understand my diagnosis, nor do they care to understand.. .. Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations. I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. One of my teenage nieces told me this weekend, "You're so cool, you get it." I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's "Cool". It doesn't get any better than that. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
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