Guest guest Posted May 20, 2009 Report Share Posted May 20, 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 20, 2009 Report Share Posted May 20, 2009 Hi MB, So happy you are home and happy and WAY COOL.. I know you got enough lovin, hugs and kisses to last for a few months.You know your story makes me cry... All the young ones here are so close to me heart. Well, I won't go there cause I cannot deal with anymore moisture in my head.. You would think by now I would be able to accept newbies with a hello and sorry you had need of us.... NO I am just a softie the older I get..LOL must be all the moisture softening my head. Anyhooo Take it easy this week and do nothing but resttttt. How was your Dr. visit?? Tell all. Love you much..Oh yes my thoughts on surviving--- This disease is so horrible but I have always thought and said it is what it is. BUT Iam learning the hard truth of progression.. This is not going to be easy for a woman that wants to do lunch and shop, go visit girlfriends and SHOP.. God alone knows when I'll be going home and I know I am ready in my soul. This stuff about not being able to get a good breathis for the birds. It gets down right scary at times. So my thoughts on surviving.... I want a better way to do it.. 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." 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. BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2009 Report Share Posted May 20, 2009 Beth You are cool....... I second, third, fourth and hundredth everything you said. My life is good. Not at I hoped it would be, but probably better than it might have been in so many ways. Simple things about this board add too. You, Leanne and I joking about traveling competition and I've fallen behind but I'll get back in the race. In many ways understanding that my life might be shorter gave me a much better understanding of how to spend it and made me smarter with decisions I make. I understand the disease, the prognosis, the future, as well as anyone I think. But what's most important is living today the best I can. You packed too much into this weekend but you had the greatest time imaginable. And you weren't " poor dying Beth " nor " old " nor " disabled " but you were just Aunt . The disease can change us if we let it. I chose only the positive changes. I am not changing who I am for it, even if I change what I am capable of doing. My first mentor was Gwynne. I met a wonderful lady who was much further along with the disease than me. I found her life was fuller of pleasure and enjoyment than most of us could imagine. She spent great time with friends. She didn't let the disease take that away. I followed. Lou is my mentor when I reach her stage. You're my challenger to keep up with in activity and spirit. So many others now. Again, my last two years are in many ways the best of my life. We all must be careful in balancing the horrible disease against life. I am not my medical chart as that person must feel awful, but I smiled at your weekend and I feel good. You talked about what you would have been doing so I just thought I'd pick today versus what it would have been. Let's see, I would have left home this morning at 6:00 to get to the office at 7:00. I would have spent the day in the most stress filled environment imaginable to make enough money to support a lifestyle I didn't need nor have time to enjoy. I would have observed people being yelled at or degraded by key executives. I would have dealt with outside law firms and accounting firms. I would have left the office tonight around 8:00 pm and picked up dinner on the way home, getting home around 9:30, eating dinner in front of tv, and quickly heading to be. Now, today. I woke at 7:45. I lounged around and finally got up and going around 9:00. I came online and checked emails and caught up with friends and read here. The kitties had their morning wild time so sound asleep. I ate lunch early, rather than breakfast. Instead of a rushed shower, I took a nice long bath. Now, I'm about to head out and just go looking around in some large stores. I think Costco's because a friend is so in love with it. Maybe Home Depot. My favorite is Bed, Bath and Beyond, but not that today. Think I'll stop at the park down the street and watch the ducks and people. I have no fixed schedule. Just getting out leisurely. Not shopping, won't buy anything. Then back home late afternoon. Relax a while to rebuild energy. I'll chat with a friend from the UK. Then, I'm cooking steaks tonight for and me. Then we'll watch the American Idol final together. Not very exciting I guess as days go, but to me a very nice day. Meanwhile thinking ahead of friend visiting in June, of teacher I will see in June when school is out or time and I can spend doing things. Even thinking of whether I'll travel to NC this year or wait until spring. Finances probably dictate that. Scheduling doctor appointments around my life, not my life around them. Got to update my list of places I want to see that are within a day's drive. Maybe some a bit further. Thinking of all the friends here I never would have met or known. Even thinking of next year's gathering and wishing we had more since I had to miss the one this spring. On the other side, I feel for all those who haven't found a support group. I would have still educated myself about the disease but doubt I would have learned how to live with it. I wouldn't have learned how to travel or how to make sure I get what I need from my oxygen suppliers or how to manage my doctors. I wouldn't have made the choice to enjoy life because I wouldn't have known how. So, I might be sitting at home angry and bitter over what had been taken from me. Instead, I'm sitting here happy and smiling over the opportunity I have to enjoy life today. > > 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 20, 2009 Report Share Posted May 20, 2009 Beth You are cool....... I second, third, fourth and hundredth everything you said. My life is good. Not at I hoped it would be, but probably better than it might have been in so many ways. Simple things about this board add too. You, Leanne and I joking about traveling competition and I've fallen behind but I'll get back in the race. In many ways understanding that my life might be shorter gave me a much better understanding of how to spend it and made me smarter with decisions I make. I understand the disease, the prognosis, the future, as well as anyone I think. But what's most important is living today the best I can. You packed too much into this weekend but you had the greatest time imaginable. And you weren't " poor dying Beth " nor " old " nor " disabled " but you were just Aunt . The disease can change us if we let it. I chose only the positive changes. I am not changing who I am for it, even if I change what I am capable of doing. My first mentor was Gwynne. I met a wonderful lady who was much further along with the disease than me. I found her life was fuller of pleasure and enjoyment than most of us could imagine. She spent great time with friends. She didn't let the disease take that away. I followed. Lou is my mentor when I reach her stage. You're my challenger to keep up with in activity and spirit. So many others now. Again, my last two years are in many ways the best of my life. We all must be careful in balancing the horrible disease against life. I am not my medical chart as that person must feel awful, but I smiled at your weekend and I feel good. You talked about what you would have been doing so I just thought I'd pick today versus what it would have been. Let's see, I would have left home this morning at 6:00 to get to the office at 7:00. I would have spent the day in the most stress filled environment imaginable to make enough money to support a lifestyle I didn't need nor have time to enjoy. I would have observed people being yelled at or degraded by key executives. I would have dealt with outside law firms and accounting firms. I would have left the office tonight around 8:00 pm and picked up dinner on the way home, getting home around 9:30, eating dinner in front of tv, and quickly heading to be. Now, today. I woke at 7:45. I lounged around and finally got up and going around 9:00. I came online and checked emails and caught up with friends and read here. The kitties had their morning wild time so sound asleep. I ate lunch early, rather than breakfast. Instead of a rushed shower, I took a nice long bath. Now, I'm about to head out and just go looking around in some large stores. I think Costco's because a friend is so in love with it. Maybe Home Depot. My favorite is Bed, Bath and Beyond, but not that today. Think I'll stop at the park down the street and watch the ducks and people. I have no fixed schedule. Just getting out leisurely. Not shopping, won't buy anything. Then back home late afternoon. Relax a while to rebuild energy. I'll chat with a friend from the UK. Then, I'm cooking steaks tonight for and me. Then we'll watch the American Idol final together. Not very exciting I guess as days go, but to me a very nice day. Meanwhile thinking ahead of friend visiting in June, of teacher I will see in June when school is out or time and I can spend doing things. Even thinking of whether I'll travel to NC this year or wait until spring. Finances probably dictate that. Scheduling doctor appointments around my life, not my life around them. Got to update my list of places I want to see that are within a day's drive. Maybe some a bit further. Thinking of all the friends here I never would have met or known. Even thinking of next year's gathering and wishing we had more since I had to miss the one this spring. On the other side, I feel for all those who haven't found a support group. I would have still educated myself about the disease but doubt I would have learned how to live with it. I wouldn't have learned how to travel or how to make sure I get what I need from my oxygen suppliers or how to manage my doctors. I wouldn't have made the choice to enjoy life because I wouldn't have known how. So, I might be sitting at home angry and bitter over what had been taken from me. Instead, I'm sitting here happy and smiling over the opportunity I have to enjoy life today. > > 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 20, 2009 Report Share Posted May 20, 2009 MB... I really enjoyed reading your post! I found the board the next day after my dx...March 6, 2006, so I had a good support network right away. I went from dr to x-ray to the internet and there found information about and the fatality of PF! I thought my coughing and mucus and sob was due to being out of shape and overweight. I've been very lucky, I've remained fairly stable in these three years, so even tho' I've been on the board awhile I haven't had the progression most experience. Some came to the board having been dx more years than I. I did not want nor did I qualify for a transplant so I haven't been much help to those who do. I don't have the complex med issues that many here have or experience with the meds they take. I personally do not take prednisone. I learned from the board that it doesn't do any good anyway (some exceptions) and I don't want the side effects. Rich and I still live in the same place, an upstairs apt. in a nice little complex for seniors. My life has stayed pretty much the same since dx. First it was hard to go out because of the sob and then it was hard to go out when O2 was added. Having severe arthritis, the little cyl. is heavy for me and hurts my shoulder so I gradually went out less and less. Going to the coast (close-about 1.5 hr) became harder and harder when a cpap was added and a concentrator and of course the usual cyl. for activities. And luggage. Our car looked like we were leaving for a month! lol. Lugging all that stuff became less appealing and we go less. I have discovered that my life is actually not even much different...I've always been a stay-at-home and dealing with arthritis/fibromyalgia and a couple other chronic/severe med problems kept me home more and more anyway. Life in general got harder and I'm sure much of that is my age...I'm 70 and Rich is 78. We don't have the get-go we used to have but life is good. If I'm tired, I rest. I no longer have the job I HAD to get up for. If we don't want to cook, we bring something in. I resumed handiwork after many years absence. The board has given me a chance to sometimes be of help to others which is my passion. I am a counselor who no longer works..not retired...and when I feel the 'nudge' I try to help. God has been good to me to still use me. I can still bloom where I am planted. I'm not afraid of death now....I was! I take life one day at a time... I am calmer now... there has been much to accept these past three years and the board is always here for me. I love this board and all you folks here as well and I've gone on too long..... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Thoughts on surviving 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 20, 2009 Report Share Posted May 20, 2009 Thank you, Beth, for this lovely summation of your life with PF. I feel much as you do after nearly five years since my diagnosis. And I join you in continuing a life of happiness, pleasure and love - love from my family and friends and the love we all get from this wonderful group. It is extraordinary, to say the least. Jack79/IPF - UIP/dx06/05 Maine To: Breathe-Support Sent: Wednesday, May 20, 2009 9:49:52 AMSubject: Thoughts on surviving 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 20, 2009 Report Share Posted May 20, 2009 Thanks Walt. That's what is so amazing about this group. Everyone here 'gets it' in a way that no one else can. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, May 20, 2009 11:14:03 AMSubject: Re: Thoughts on surviving Beth WOW!!!! Very well put. It's like you were reading my thoughts. It's weird but this group is the only place I can say that I have "lived" more since diagnose. I have tried to express that to friends and family and I get the nod or the smile and I know that they don’t have a clue of what I am talking about. I have prayed that my kids could look and experience life like this with out the baggage of this disease. Obviously I don’t want to be sick but I have to say I feel I have missed so much of life before I realized how much is out there and what is really important to and for me. Thank you Beth for reminding me that I am here for a reason and need to “LIVE†everyday Walt DX 06 PF,NSIP,UIP Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.†From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Thoughts on survivingTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 20, 2009, 6:49 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 20, 2009 Report Share Posted May 20, 2009 Thanks Walt. That's what is so amazing about this group. Everyone here 'gets it' in a way that no one else can. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, May 20, 2009 11:14:03 AMSubject: Re: Thoughts on surviving Beth WOW!!!! Very well put. It's like you were reading my thoughts. It's weird but this group is the only place I can say that I have "lived" more since diagnose. I have tried to express that to friends and family and I get the nod or the smile and I know that they don’t have a clue of what I am talking about. I have prayed that my kids could look and experience life like this with out the baggage of this disease. Obviously I don’t want to be sick but I have to say I feel I have missed so much of life before I realized how much is out there and what is really important to and for me. Thank you Beth for reminding me that I am here for a reason and need to “LIVE†everyday Walt DX 06 PF,NSIP,UIP Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.†From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Thoughts on survivingTo: Breathe-Support@ yahoogroups. comDate: Wednesday, May 20, 2009, 6:49 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 20, 2009 Report Share Posted May 20, 2009 Sher, It's funny isn't it, how my life literally turned upside down and inside out and yours changed so much less. That's another great thing about this group. We really do cover the spectrum and hopefully everyone can feel supported in their own specific situation. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, May 20, 2009 2:28:55 PMSubject: Re: Thoughts on surviving MB... I really enjoyed reading your post! I found the board the next day after my dx...March 6, 2006, so I had a good support network right away. I went from dr to x-ray to the internet and there found information about and the fatality of PF! I thought my coughing and mucus and sob was due to being out of shape and overweight. I've been very lucky, I've remained fairly stable in these three years, so even tho' I've been on the board awhile I haven't had the progression most experience. Some came to the board having been dx more years than I. I did not want nor did I qualify for a transplant so I haven't been much help to those who do. I don't have the complex med issues that many here have or experience with the meds they take. I personally do not take prednisone. I learned from the board that it doesn't do any good anyway (some exceptions) and I don't want the side effects. Rich and I still live in the same place, an upstairs apt. in a nice little complex for seniors. My life has stayed pretty much the same since dx. First it was hard to go out because of the sob and then it was hard to go out when O2 was added. Having severe arthritis, the little cyl. is heavy for me and hurts my shoulder so I gradually went out less and less. Going to the coast (close-about 1.5 hr) became harder and harder when a cpap was added and a concentrator and of course the usual cyl. for activities. And luggage. Our car looked like we were leaving for a month! lol. Lugging all that stuff became less appealing and we go less. I have discovered that my life is actually not even much different... I've always been a stay-at-home and dealing with arthritis/fibromyal gia and a couple other chronic/severe med problems kept me home more and more anyway. Life in general got harder and I'm sure much of that is my age...I'm 70 and Rich is 78. We don't have the get-go we used to have but life is good. If I'm tired, I rest. I no longer have the job I HAD to get up for. If we don't want to cook, we bring something in. I resumed handiwork after many years absence. The board has given me a chance to sometimes be of help to others which is my passion. I am a counselor who no longer works..not retired...and when I feel the 'nudge' I try to help. God has been good to me to still use me. I can still bloom where I am planted. I'm not afraid of death now....I was! I take life one day at a time... I am calmer now... there has been much to accept these past three years and the board is always here for me. I love this board and all you folks here as well and I've gone on too long..... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Thoughts on surviving 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 20, 2009 Report Share Posted May 20, 2009 Sher, It's funny isn't it, how my life literally turned upside down and inside out and yours changed so much less. That's another great thing about this group. We really do cover the spectrum and hopefully everyone can feel supported in their own specific situation. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, May 20, 2009 2:28:55 PMSubject: Re: Thoughts on surviving MB... I really enjoyed reading your post! I found the board the next day after my dx...March 6, 2006, so I had a good support network right away. I went from dr to x-ray to the internet and there found information about and the fatality of PF! I thought my coughing and mucus and sob was due to being out of shape and overweight. I've been very lucky, I've remained fairly stable in these three years, so even tho' I've been on the board awhile I haven't had the progression most experience. Some came to the board having been dx more years than I. I did not want nor did I qualify for a transplant so I haven't been much help to those who do. I don't have the complex med issues that many here have or experience with the meds they take. I personally do not take prednisone. I learned from the board that it doesn't do any good anyway (some exceptions) and I don't want the side effects. Rich and I still live in the same place, an upstairs apt. in a nice little complex for seniors. My life has stayed pretty much the same since dx. First it was hard to go out because of the sob and then it was hard to go out when O2 was added. Having severe arthritis, the little cyl. is heavy for me and hurts my shoulder so I gradually went out less and less. Going to the coast (close-about 1.5 hr) became harder and harder when a cpap was added and a concentrator and of course the usual cyl. for activities. And luggage. Our car looked like we were leaving for a month! lol. Lugging all that stuff became less appealing and we go less. I have discovered that my life is actually not even much different... I've always been a stay-at-home and dealing with arthritis/fibromyal gia and a couple other chronic/severe med problems kept me home more and more anyway. Life in general got harder and I'm sure much of that is my age...I'm 70 and Rich is 78. We don't have the get-go we used to have but life is good. If I'm tired, I rest. I no longer have the job I HAD to get up for. If we don't want to cook, we bring something in. I resumed handiwork after many years absence. The board has given me a chance to sometimes be of help to others which is my passion. I am a counselor who no longer works..not retired...and when I feel the 'nudge' I try to help. God has been good to me to still use me. I can still bloom where I am planted. I'm not afraid of death now....I was! I take life one day at a time... I am calmer now... there has been much to accept these past three years and the board is always here for me. I love this board and all you folks here as well and I've gone on too long..... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Thoughts on surviving 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 20, 2009 Report Share Posted May 20, 2009 Thanks Bruce! Consider yourself hugged. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, May 20, 2009 12:35:09 PMSubject: Re: Thoughts on surviving BethYou are cool.......I second, third, fourth and hundredth everything you said. My life isgood. Not at I hoped it would be, but probably better than it might havebeen in so many ways. Simple things about this board add too. You,Leanne and I joking about traveling competition and I've fallen behindbut I'll get back in the race. In many ways understanding that my lifemight be shorter gave me a much better understanding of how to spend itand made me smarter with decisions I make. I understand the disease, theprognosis, the future, as well as anyone I think. But what's mostimportant is living today the best I can. You packed too much into thisweekend but you had the greatest time imaginable. And you weren't "poordying Beth" nor "old" nor "disabled" but you were just Aunt .The disease can change us if we let it. I chose only the positivechanges. I am not changing who I am for it, even if I change what I amcapable of doing.My first mentor was Gwynne. I met a wonderful lady who was much furtheralong with the disease than me. I found her life was fuller of pleasureand enjoyment than most of us could imagine. She spent great time withfriends. She didn't let the disease take that away. I followed. Louis my mentor when I reach her stage. You're my challenger to keep upwith in activity and spirit. So many others now. Again, my last twoyears are in many ways the best of my life.We all must be careful in balancing the horrible disease against life. Iam not my medical chart as that person must feel awful, but I smiled atyour weekend and I feel good.You talked about what you would have been doing so I just thought I'dpick today versus what it would have been. Let's see, I would have lefthome this morning at 6:00 to get to the office at 7:00. I would havespent the day in the most stress filled environment imaginable to makeenough money to support a lifestyle I didn't need nor have time toenjoy. I would have observed people being yelled at or degraded by keyexecutives. I would have dealt with outside law firms and accountingfirms. I would have left the office tonight around 8:00 pm and picked updinner on the way home, getting home around 9:30, eating dinner in frontof tv, and quickly heading to be.Now, today. I woke at 7:45. I lounged around and finally got up andgoing around 9:00. I came online and checked emails and caught up withfriends and read here. The kitties had their morning wild time so soundasleep. I ate lunch early, rather than breakfast. Instead of a rushedshower, I took a nice long bath. Now, I'm about to head out and just golooking around in some large stores. I think Costco's because a friendis so in love with it. Maybe Home Depot. My favorite is Bed, Bath andBeyond, but not that today. Think I'll stop at the park down the streetand watch the ducks and people. I have no fixed schedule. Just gettingout leisurely. Not shopping, won't buy anything. Then back home lateafternoon. Relax a while to rebuild energy. I'll chat with a friend fromthe UK. Then, I'm cooking steaks tonight for and me. Then we'llwatch the American Idol final together. Not very exciting I guess asdays go, but to me a very nice day. Meanwhile thinking ahead of friendvisiting in June, of teacher I will see in June when school is out ortime and I can spend doing things. Even thinking of whether I'lltravel to NC this year or wait until spring. Finances probably dictatethat. Scheduling doctor appointments around my life, not my life aroundthem. Got to update my list of places I want to see that are within aday's drive. Maybe some a bit further.Thinking of all the friends here I never would have met or known. Eventhinking of next year's gathering and wishing we had more since I had tomiss the one this spring.On the other side, I feel for all those who haven't found a supportgroup. I would have still educated myself about the disease but doubt Iwould have learned how to live with it. I wouldn't have learned how totravel or how to make sure I get what I need from my oxygen suppliers orhow to manage my doctors. I wouldn't have made the choice to enjoy lifebecause I wouldn't have known how. So, I might be sitting at home angryand bitter over what had been taken from me. Instead, I'm sitting herehappy and smiling over the opportunity I have to enjoy life today.>> Hi everyone,> The 29th of this month will mark 3 years since my diagnosis withpulmonary fibrosis. At that time in spite of my educational backgroundand the fact that I am a nurse, I was baffled by this diagnosis. I hadnever seen it while I worked in a hospital setting and I knew no one whohad it. Three weeks later at home I went to work on the internet. Ittook time but gradually things became clearer. My biopsy results came inand I educated myself. In July of 06 I found this group. Suddenly I wassurrounded by people who 'got it'. People who understood what it waslike to be hopped up on 100mg of prednisone at 3am, whose ribs hurt fromcoughing, who struggled to understand what was happening to them andmake their way through the maze set before us.> Little by little I fought my way through to find a 'new normal'. Thereare 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 reasonwas just as important as the first. This group. It's difficult tooverstate how key this group has been for me. The daily encouragement,the sharing of knowledge, and ideas and joy and sorrow, it's all wrappedup right here in this amazing group of people.> Lots of things have changed for me in the last 3 years. I was approvedfor SSDI and began collecting in November of 06, Medicare finally kickedin in November of 08. I relocated from NY to NC in December of 07 andbegan 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 goneback to hobbies and activities that had fallen by the wayside when I wasworking 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 otherpeople expect that I should. I have some "friends" and family membersthat 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 shoveunderstanding into anyones head. Life is far too short and fragile tolive for anyone else's expectations.>> I just felt like sharing this today. We've got many members who havejoined in the last couple of months. We can all feel the fear and griefin some of the posts. We all get it, we've all been there andunderstand. There is a wide variety of specific diagnosis. There is arange of life expectancy. It's easy to get caught up in the specificsand there is a place for all of that. But the one thing I would suggestis not to let all that consume your life. Remember to make time to behappy. Keep it as simple as you need to but do something every singleday that brings you some joy. Life is not over, it's different andmaybe in some ways diminished but it's not over.> One of my teenage nieces told me this weekend, "You're so cool, youget it." I don't remember what we were talking about but I loved thatshe could look at her nearly 50 year old aunt, overweight and withoxygen tubing up her nose and see someone who's "Cool". It doesn't getany 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 20, 2009 Report Share Posted May 20, 2009 Thanks Bruce! Consider yourself hugged. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, May 20, 2009 12:35:09 PMSubject: Re: Thoughts on surviving BethYou are cool.......I second, third, fourth and hundredth everything you said. My life isgood. Not at I hoped it would be, but probably better than it might havebeen in so many ways. Simple things about this board add too. You,Leanne and I joking about traveling competition and I've fallen behindbut I'll get back in the race. In many ways understanding that my lifemight be shorter gave me a much better understanding of how to spend itand made me smarter with decisions I make. I understand the disease, theprognosis, the future, as well as anyone I think. But what's mostimportant is living today the best I can. You packed too much into thisweekend but you had the greatest time imaginable. And you weren't "poordying Beth" nor "old" nor "disabled" but you were just Aunt .The disease can change us if we let it. I chose only the positivechanges. I am not changing who I am for it, even if I change what I amcapable of doing.My first mentor was Gwynne. I met a wonderful lady who was much furtheralong with the disease than me. I found her life was fuller of pleasureand enjoyment than most of us could imagine. She spent great time withfriends. She didn't let the disease take that away. I followed. Louis my mentor when I reach her stage. You're my challenger to keep upwith in activity and spirit. So many others now. Again, my last twoyears are in many ways the best of my life.We all must be careful in balancing the horrible disease against life. Iam not my medical chart as that person must feel awful, but I smiled atyour weekend and I feel good.You talked about what you would have been doing so I just thought I'dpick today versus what it would have been. Let's see, I would have lefthome this morning at 6:00 to get to the office at 7:00. I would havespent the day in the most stress filled environment imaginable to makeenough money to support a lifestyle I didn't need nor have time toenjoy. I would have observed people being yelled at or degraded by keyexecutives. I would have dealt with outside law firms and accountingfirms. I would have left the office tonight around 8:00 pm and picked updinner on the way home, getting home around 9:30, eating dinner in frontof tv, and quickly heading to be.Now, today. I woke at 7:45. I lounged around and finally got up andgoing around 9:00. I came online and checked emails and caught up withfriends and read here. The kitties had their morning wild time so soundasleep. I ate lunch early, rather than breakfast. Instead of a rushedshower, I took a nice long bath. Now, I'm about to head out and just golooking around in some large stores. I think Costco's because a friendis so in love with it. Maybe Home Depot. My favorite is Bed, Bath andBeyond, but not that today. Think I'll stop at the park down the streetand watch the ducks and people. I have no fixed schedule. Just gettingout leisurely. Not shopping, won't buy anything. Then back home lateafternoon. Relax a while to rebuild energy. I'll chat with a friend fromthe UK. Then, I'm cooking steaks tonight for and me. Then we'llwatch the American Idol final together. Not very exciting I guess asdays go, but to me a very nice day. Meanwhile thinking ahead of friendvisiting in June, of teacher I will see in June when school is out ortime and I can spend doing things. Even thinking of whether I'lltravel to NC this year or wait until spring. Finances probably dictatethat. Scheduling doctor appointments around my life, not my life aroundthem. Got to update my list of places I want to see that are within aday's drive. Maybe some a bit further.Thinking of all the friends here I never would have met or known. Eventhinking of next year's gathering and wishing we had more since I had tomiss the one this spring.On the other side, I feel for all those who haven't found a supportgroup. I would have still educated myself about the disease but doubt Iwould have learned how to live with it. I wouldn't have learned how totravel or how to make sure I get what I need from my oxygen suppliers orhow to manage my doctors. I wouldn't have made the choice to enjoy lifebecause I wouldn't have known how. So, I might be sitting at home angryand bitter over what had been taken from me. Instead, I'm sitting herehappy and smiling over the opportunity I have to enjoy life today.>> Hi everyone,> The 29th of this month will mark 3 years since my diagnosis withpulmonary fibrosis. At that time in spite of my educational backgroundand the fact that I am a nurse, I was baffled by this diagnosis. I hadnever seen it while I worked in a hospital setting and I knew no one whohad it. Three weeks later at home I went to work on the internet. Ittook time but gradually things became clearer. My biopsy results came inand I educated myself. In July of 06 I found this group. Suddenly I wassurrounded by people who 'got it'. People who understood what it waslike to be hopped up on 100mg of prednisone at 3am, whose ribs hurt fromcoughing, who struggled to understand what was happening to them andmake their way through the maze set before us.> Little by little I fought my way through to find a 'new normal'. Thereare 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 reasonwas just as important as the first. This group. It's difficult tooverstate how key this group has been for me. The daily encouragement,the sharing of knowledge, and ideas and joy and sorrow, it's all wrappedup right here in this amazing group of people.> Lots of things have changed for me in the last 3 years. I was approvedfor SSDI and began collecting in November of 06, Medicare finally kickedin in November of 08. I relocated from NY to NC in December of 07 andbegan 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 goneback to hobbies and activities that had fallen by the wayside when I wasworking 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 otherpeople expect that I should. I have some "friends" and family membersthat 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 shoveunderstanding into anyones head. Life is far too short and fragile tolive for anyone else's expectations.>> I just felt like sharing this today. We've got many members who havejoined in the last couple of months. We can all feel the fear and griefin some of the posts. We all get it, we've all been there andunderstand. There is a wide variety of specific diagnosis. There is arange of life expectancy. It's easy to get caught up in the specificsand there is a place for all of that. But the one thing I would suggestis not to let all that consume your life. Remember to make time to behappy. Keep it as simple as you need to but do something every singleday that brings you some joy. Life is not over, it's different andmaybe in some ways diminished but it's not over.> One of my teenage nieces told me this weekend, "You're so cool, youget it." I don't remember what we were talking about but I loved thatshe could look at her nearly 50 year old aunt, overweight and withoxygen tubing up her nose and see someone who's "Cool". It doesn't getany 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 20, 2009 Report Share Posted May 20, 2009 MB...when I was dx I thought my life would never be the same again...but it is, other than something changing in my lungs, by life is very much the same. Where I used to be afraid of dying, I'm not anymore....everyone of us face dying but we do it together and those who go before us show it can be done and doesn't have to be painful. You know, I think those of us who cope with this disease receive a special blessing from God. We learn deep inner truths that others do not have opportunity to learn. And we all understand each other, although different. I'm glad I'm here. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Thoughts on surviving 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 20, 2009 Report Share Posted May 20, 2009 Beth & Peggy, I am sitting here at work crying my eyes out because you all 'get' it and said so eloquently what we all feel. I went to the movies this weekend with 2 of my daughters and we did lunch and had a wonderful time and I tried so hard not to be angry because I got so tired walking just the little bit that I did. It frightens me because I watched my mother die of this damn disease and I want to spare my children and of course I can't. My faith is strong but that doesn't mean it doesn't hurt to see fright on their faces. I will do everything I can and keep going as long as I can but at the same time I've learned to ask for help and that has been the hardest of all. I read all these posts and it helps so much. Bruce is amazing with all his knowledge, keeps me laughing (and as she can tell ALL Americans think Aussies are just too cool) Walt and Sunny and everyone whos name is stuck in my head (if cancer patients get chemo brain do we get predenisone brain or loss of o2 brain - we need a cool term ) make me realize that we all have more courage than people know. I think all us newbies thank you so much for being there for us. Thank 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 20, 2009 Report Share Posted May 20, 2009 Beth & Peggy, I am sitting here at work crying my eyes out because you all 'get' it and said so eloquently what we all feel. I went to the movies this weekend with 2 of my daughters and we did lunch and had a wonderful time and I tried so hard not to be angry because I got so tired walking just the little bit that I did. It frightens me because I watched my mother die of this damn disease and I want to spare my children and of course I can't. My faith is strong but that doesn't mean it doesn't hurt to see fright on their faces. I will do everything I can and keep going as long as I can but at the same time I've learned to ask for help and that has been the hardest of all. I read all these posts and it helps so much. Bruce is amazing with all his knowledge, keeps me laughing (and as she can tell ALL Americans think Aussies are just too cool) Walt and Sunny and everyone whos name is stuck in my head (if cancer patients get chemo brain do we get predenisone brain or loss of o2 brain - we need a cool term ) make me realize that we all have more courage than people know. I think all us newbies thank you so much for being there for us. Thank 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 20, 2009 Report Share Posted May 20, 2009 Dyane, I wish I were with you I would give you a warm big ol' hug. I am 5 years now and can well remember each drop in activities.. WOW this is NOT any fun BUT life is good God is Good so don't let this monster take your fun from you. Be sure to spend as much quality time as you can with your children.. make memories of every day. It is so hard after a while to find your joy but it is still there buried under fear and apprehension about the future. The best advise I can give is live each day to it's fullest and love with everything you've got. There will always be some oldies but goodies here to help you. Much love to you. Hang on. 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." 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 20, 2009 Report Share Posted May 20, 2009 Hey Air Fambly...I just had a Scilly 'Brainwave'..THIS thread is a 'Gem'..would it be possible to pull it aside & stick it in the 'Files' so that it can easily be re-read...there have been many other such exceptional threads but I never thought of suggesting this. Maybe even folks could keep adding to the file as time goes on.....it'd end up being a bit of a 'Journal' for us. So much of the wisdom disappears 'cos we can't remeber the name of the thread to go back n' search. (well I can't...) MB, Sher, Peggy...precious words ALL! Love, in Oz >> MB...when I was dx I thought my life would never be the same again...but it is, other than something changing in my lungs, by life is very much the same.> Where I used to be afraid of dying, I'm not anymore....everyone of us face dying but we do it together and those who go before us show it can be done and doesn't have to be painful.> You know, I think those of us who cope with this disease receive a special blessing from God. We learn deep inner truths that others do not have opportunity to learn.> And we all understand each other, although different. I'm glad I'm here.> MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > Thoughts on surviving> > > > 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 20, 2009 Report Share Posted May 20, 2009 SGIO Hello Ms. Scilly Brainwave How are you doing? Oh no problem that you can't remember who wrote it. We can't remember what we wrote. Have the puppies figured out which hand is best for petting at the moment? You could teach many yourself about humor and living where the treatment is a bit different, to put it mildly. Those here who struggle to get to doctors and get information have no idea what it's like there. Yet, few of us have an idea what a beautiful life intertwined with so much nature and pleasures you have is like. You're another great example of one who makes the best of it all. At the same time, you're able to cheer people around the world up and we're blessed to have your zaniness. We each deal with the disease and life differently so can learn from each other and we learn a lot from you. > > > > MB...when I was dx I thought my life would never be the same > again...but it is, other than something changing in my lungs, by life is > very much the same. > > Where I used to be afraid of dying, I'm not anymore....everyone of us > face dying but we do it together and those who go before us show it can > be done and doesn't have to be painful. > > You know, I think those of us who cope with this disease receive a > special blessing from God. We learn deep inner truths that others do not > have opportunity to learn. > > And we all understand each other, although different. I'm glad I'm > here. > > MamaSher; 70, IPF 3-06, OR. > > Nasturtiums > > Don't fret about tomorrow, God is already there! > > > > Thoughts on surviving > > > > > > > > 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 to all of the newbies we have OD -- Oxygen Deprivation -- not sure who came up with the expression, but whenever we goof, etc, we blame it on 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, 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 to all of the newbies we have OD -- Oxygen Deprivation -- not sure who came up with the expression, but whenever we goof, etc, we blame it on 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, 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, 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, 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." 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 timeswhen 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 thiswanted 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 4/09www.transplantfund.org--- On Wed, 5/20/09, Joyce T Rosenberg <pinkrockybeach (AT) yahoo (DOT) com> wrote:From: Joyce T Rosenberg <pinkrockybeach (AT) yahoo (DOT) com>Subject: Re: Thoughts on survivingTo: Breathe-Support Date: Wednesday, May 20, 2009, 8:33 PMbeautifully saidPink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09www.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 AMHi 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. BethModeratorFibrotic 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, 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, 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." 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 timeswhen 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 thiswanted 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 4/09www.transplantfund.org--- On Wed, 5/20/09, Joyce T Rosenberg <pinkrockybeach (AT) yahoo (DOT) com> wrote:From: Joyce T Rosenberg <pinkrockybeach (AT) yahoo (DOT) com>Subject: Re: Thoughts on survivingTo: Breathe-Support Date: Wednesday, May 20, 2009, 8:33 PMbeautifully saidPink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09www.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 AMHi 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. BethModeratorFibrotic 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 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." 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 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." 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...
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