Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 Hi and welcome!! Isn't this just the best place in the world to come to when your feeling scared or lonely or helpless and even on the good days coming here is great because you may have that one thing to say that someone else needs to hear! I also am fairly new to the group. I have DIP....its just a coincidence that my diagnosis describes me LOL. I was diagnosed after a hospital stay where they discovered pulmonary emboli and further testing with a specialist found that i had an institual lung disease. I am on 4 litre's of oxygen 24/7 and take numerous medications because of depression and anxiety along with my disease. I used to work as a mental health case manager and have had to retire early because of all this. As I've told the others my life has changed drastically from the way I had it planned and its taken the last year for me to wrap my head around all this. I have about 30 more pounds to lose and then will be listed for a double lung transplant at the university of washington. I have learned alot here in the group and it helps alot to know I don't walk this road alone. Sometimes family is hard to deal with because atleast my family is and being part of this group gives me the support that I need. I hope to learn more about you and I'm glad you found us. Theresa>> Hello,> My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 Hi and welcome!! Isn't this just the best place in the world to come to when your feeling scared or lonely or helpless and even on the good days coming here is great because you may have that one thing to say that someone else needs to hear! I also am fairly new to the group. I have DIP....its just a coincidence that my diagnosis describes me LOL. I was diagnosed after a hospital stay where they discovered pulmonary emboli and further testing with a specialist found that i had an institual lung disease. I am on 4 litre's of oxygen 24/7 and take numerous medications because of depression and anxiety along with my disease. I used to work as a mental health case manager and have had to retire early because of all this. As I've told the others my life has changed drastically from the way I had it planned and its taken the last year for me to wrap my head around all this. I have about 30 more pounds to lose and then will be listed for a double lung transplant at the university of washington. I have learned alot here in the group and it helps alot to know I don't walk this road alone. Sometimes family is hard to deal with because atleast my family is and being part of this group gives me the support that I need. I hope to learn more about you and I'm glad you found us. Theresa>> Hello,> My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 , Welcome to the group. I'm glad you found us and hope you get the info. and help you need. I went for along time without knowing about it but I happened to find it when I needed it the most. Everyone here has been such a blessing to me. I'm sure you'll find the same. I was oficially diagnosed in Jan. 06. I'm 33 and have had symptoms dating back to early childhood. I've been on SSDI almost 2 years. O2 during exertion for almost 3 years. I got Mayo Clinic in ville, Fl for my medical care. I hope to learn more about you. 33 FL IPF dx 1/06 > > Hello, > My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 , Welcome to the group. I'm glad you found us and hope you get the info. and help you need. I went for along time without knowing about it but I happened to find it when I needed it the most. Everyone here has been such a blessing to me. I'm sure you'll find the same. I was oficially diagnosed in Jan. 06. I'm 33 and have had symptoms dating back to early childhood. I've been on SSDI almost 2 years. O2 during exertion for almost 3 years. I got Mayo Clinic in ville, Fl for my medical care. I hope to learn more about you. 33 FL IPF dx 1/06 > > Hello, > My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 Beth, Thank you. I have been scared for a very long time. I am seeing a pulmonologist at Hospital in Naperville, Illinois. I live in a suburb nearby named Bolingbrook. I have just been ignoring my diseases. I was diagnosed with bronchectisis first which is a disease of the Bronci and then a lung biopsy revealed IPF. My Dr. is the only one I have seen except for the Dr. at Loyola. He was the head of the lung transplant unit and he is not a very nice person. He left me feeling helpless. I had a bunch of testing done and everything came back fine. Except my weight. I couln't lose very much weight and that Dr.made me feel like I was never going to win. So I quit. I gave up. I did go to pulomonary rehab 3 times but I always fell off the wagon. What I can not figure out is why I do the things I do, knowing what I know. Maybe I will find some answers here. I just don't know what to do next. I am so happy I found this group. I really need all of you. Now I feel hopeful. Does that make any sense? To: Breathe-Support Sent: Tuesday, April 21, 2009 1:24:22 PMSubject: Re: Scared & lonely , Welcome!! We're so glad you found us though I think I speak for all of us when I say we're sorry you even had reason to look for a group like this. There is no need to feel "totally embarrassed and ashamed" though. It sounds like you've been coping on your own for a long time. That can be very isolating can't it? I'm glad you found us even if it's only so that you know there are others who are fighting the same battle you are. It helps to know others in the same boat. I'm Beth, 49 living in Durham NC. I have fibrotic NSIP (non specific interstitial pneumonitis) and dermatomyositis, an auto-immune connective tissue disease. I've been on SSDI since November of 06. I get my medical care at Duke University.. I can safely say we all want to do anything we can to help. Ask any questions that come to mind. Don't feel silly or embarrassed about asking. Everyone has a learning curve. You've already been reading the messages. You might want to go back and read old messages a bit or search by keyword through the archives if there's something in particular you'd like to look for. Are you in the US? Where do you get your care for the lung disease? Tell us more about you and your situation if you feel comfortable sharing. We're all in the same boat! Once again welcome, I'm glad you are here! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Calabrese <erin_calabrese01@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, April 21, 2009 3:44:22 PMSubject: Scared & lonely Hello,My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 Beth, Thank you. I have been scared for a very long time. I am seeing a pulmonologist at Hospital in Naperville, Illinois. I live in a suburb nearby named Bolingbrook. I have just been ignoring my diseases. I was diagnosed with bronchectisis first which is a disease of the Bronci and then a lung biopsy revealed IPF. My Dr. is the only one I have seen except for the Dr. at Loyola. He was the head of the lung transplant unit and he is not a very nice person. He left me feeling helpless. I had a bunch of testing done and everything came back fine. Except my weight. I couln't lose very much weight and that Dr.made me feel like I was never going to win. So I quit. I gave up. I did go to pulomonary rehab 3 times but I always fell off the wagon. What I can not figure out is why I do the things I do, knowing what I know. Maybe I will find some answers here. I just don't know what to do next. I am so happy I found this group. I really need all of you. Now I feel hopeful. Does that make any sense? To: Breathe-Support Sent: Tuesday, April 21, 2009 1:24:22 PMSubject: Re: Scared & lonely , Welcome!! We're so glad you found us though I think I speak for all of us when I say we're sorry you even had reason to look for a group like this. There is no need to feel "totally embarrassed and ashamed" though. It sounds like you've been coping on your own for a long time. That can be very isolating can't it? I'm glad you found us even if it's only so that you know there are others who are fighting the same battle you are. It helps to know others in the same boat. I'm Beth, 49 living in Durham NC. I have fibrotic NSIP (non specific interstitial pneumonitis) and dermatomyositis, an auto-immune connective tissue disease. I've been on SSDI since November of 06. I get my medical care at Duke University.. I can safely say we all want to do anything we can to help. Ask any questions that come to mind. Don't feel silly or embarrassed about asking. Everyone has a learning curve. You've already been reading the messages. You might want to go back and read old messages a bit or search by keyword through the archives if there's something in particular you'd like to look for. Are you in the US? Where do you get your care for the lung disease? Tell us more about you and your situation if you feel comfortable sharing. We're all in the same boat! Once again welcome, I'm glad you are here! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Calabrese <erin_calabrese01@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, April 21, 2009 3:44:22 PMSubject: Scared & lonely Hello,My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 Theresa You made me laugh. That was great! I also am on medication for depression and anxiety. I call it my "cocktail". It's made me a much calmer person. This disease has changed my life drastically as well. I haven't worked since my diagnosis and have been on disability. I used to work in a dental office. My husband Dan is a Deputy Sheriff and we have 3 children. Dan 21, 18 and 11. We live in a suburb of Chicago call Bolingbrook. Like you I am also on oxygen 24/7. 3L sitting 4/5L while working around the house. How did you lose the weight? Please tell me you have a magic pill ? I know I'm kidding. I am about 5'2 and 230 lbs. I need help. I'm thinking about going to weight watchers. I just have no will power and no energy. On the bad days I figure it won't make any difference because I won't lose the weight and will die torturing myself without food. Right now food I can control and it's the one area of my life that is totally out of control. Am I making any sense? To: Breathe-Support Sent: Tuesday, April 21, 2009 2:58:44 PMSubject: Re: Scared & lonely Hi and welcome!! Isn't this just the best place in the world to come to when your feeling scared or lonely or helpless and even on the good days coming here is great because you may have that one thing to say that someone else needs to hear! I also am fairly new to the group. I have DIP....its just a coincidence that my diagnosis describes me LOL. I was diagnosed after a hospital stay where they discovered pulmonary emboli and further testing with a specialist found that i had an institual lung disease. I am on 4 litre's of oxygen 24/7 and take numerous medications because of depression and anxiety along with my disease. I used to work as a mental health case manager and have had to retire early because of all this. As I've told the others my life has changed drastically from the way I had it planned and its taken the last year for me to wrap my head around all this. I have about 30 more pounds to lose and then will be listed for a double lung transplant at the university of washington. I have learned alot here in the group and it helps alot to know I don't walk this road alone. Sometimes family is hard to deal with because atleast my family is and being part of this group gives me the support that I need. I hope to learn more about you and I'm glad you found us. Theresa>> Hello,> My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 Theresa You made me laugh. That was great! I also am on medication for depression and anxiety. I call it my "cocktail". It's made me a much calmer person. This disease has changed my life drastically as well. I haven't worked since my diagnosis and have been on disability. I used to work in a dental office. My husband Dan is a Deputy Sheriff and we have 3 children. Dan 21, 18 and 11. We live in a suburb of Chicago call Bolingbrook. Like you I am also on oxygen 24/7. 3L sitting 4/5L while working around the house. How did you lose the weight? Please tell me you have a magic pill ? I know I'm kidding. I am about 5'2 and 230 lbs. I need help. I'm thinking about going to weight watchers. I just have no will power and no energy. On the bad days I figure it won't make any difference because I won't lose the weight and will die torturing myself without food. Right now food I can control and it's the one area of my life that is totally out of control. Am I making any sense? To: Breathe-Support Sent: Tuesday, April 21, 2009 2:58:44 PMSubject: Re: Scared & lonely Hi and welcome!! Isn't this just the best place in the world to come to when your feeling scared or lonely or helpless and even on the good days coming here is great because you may have that one thing to say that someone else needs to hear! I also am fairly new to the group. I have DIP....its just a coincidence that my diagnosis describes me LOL. I was diagnosed after a hospital stay where they discovered pulmonary emboli and further testing with a specialist found that i had an institual lung disease. I am on 4 litre's of oxygen 24/7 and take numerous medications because of depression and anxiety along with my disease. I used to work as a mental health case manager and have had to retire early because of all this. As I've told the others my life has changed drastically from the way I had it planned and its taken the last year for me to wrap my head around all this. I have about 30 more pounds to lose and then will be listed for a double lung transplant at the university of washington. I have learned alot here in the group and it helps alot to know I don't walk this road alone. Sometimes family is hard to deal with because atleast my family is and being part of this group gives me the support that I need. I hope to learn more about you and I'm glad you found us. Theresa>> Hello,> My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 , Welcome. I just joined last week. I have had a similar experience so I can imagine your frustration. I was first diagnosed in February of 2006. I have a much clearer plan of attack and am awaiting approval from insurance. Keep the faith and do read the files. Questions, just fire away. You will find a multitude of responses. Facts, guides, and inspiration. Stefani > > Beth, > Thank you. I have been scared for a very long time. I am seeing a pulmonologist at Hospital in Naperville, Illinois. I live in a suburb nearby named Bolingbrook. I have just been ignoring my diseases. I was diagnosed with bronchectisis first which is a disease of the Bronci and then a lung biopsy revealed IPF. My Dr. is the only one I have seen except for the Dr. at Loyola. He was the head of the lung transplant unit and he is not a very nice person. He left me feeling helpless. I had a bunch of testing done and everything came back fine. Except my weight. I couln't lose very much weight and that Dr.made me feel like I was never going to win. So I quit. I gave up. I did go to pulomonary rehab 3 times but I always fell off the wagon. What I can not figure out is why I do the things I do, knowing what I know. Maybe I will find some answers here. I just don't know what to do next. I am so happy I found this group. > I really need all of you. Now I feel hopeful. Does that make any sense? > > > > > > > ________________________________ > From: Beth > To: Breathe-Support > Sent: Tuesday, April 21, 2009 1:24:22 PM > Subject: Re: Scared & lonely > > > > > > , > Welcome!! We're so glad you found us though I think I speak for all of us when I say we're sorry you even had reason to look for a group like this. There is no need to feel " totally embarrassed and ashamed " though. It sounds like you've been coping on your own for a long time. That can be very isolating can't it? I'm glad you found us even if it's only so that you know there are others who are fighting the same battle you are. It helps to know others in the same boat. > > I'm Beth, 49 living in Durham NC. I have fibrotic NSIP (non specific interstitial pneumonitis) and dermatomyositis, an auto-immune connective tissue disease. I've been on SSDI since November of 06. I get my medical care at Duke University. > > I can safely say we all want to do anything we can to help. Ask any questions that come to mind. Don't feel silly or embarrassed about asking. Everyone has a learning curve. You've already been reading the messages. You might want to go back and read old messages a bit or search by keyword through the archives if there's something in particular you'd like to look for. > > Are you in the US? Where do you get your care for the lung disease? Tell us more about you and your situation if you feel comfortable sharing. We're all in the same boat! Once again welcome, I'm glad you are here! > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > From: Calabrese > To: Breathe-Support@ yahoogroups. com > Sent: Tuesday, April 21, 2009 3:44:22 PM > Subject: Scared & lonely > > > Hello, > My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn.. Any who can help or want to help please let me know. Thank you. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 , Welcome. I just joined last week. I have had a similar experience so I can imagine your frustration. I was first diagnosed in February of 2006. I have a much clearer plan of attack and am awaiting approval from insurance. Keep the faith and do read the files. Questions, just fire away. You will find a multitude of responses. Facts, guides, and inspiration. Stefani > > Beth, > Thank you. I have been scared for a very long time. I am seeing a pulmonologist at Hospital in Naperville, Illinois. I live in a suburb nearby named Bolingbrook. I have just been ignoring my diseases. I was diagnosed with bronchectisis first which is a disease of the Bronci and then a lung biopsy revealed IPF. My Dr. is the only one I have seen except for the Dr. at Loyola. He was the head of the lung transplant unit and he is not a very nice person. He left me feeling helpless. I had a bunch of testing done and everything came back fine. Except my weight. I couln't lose very much weight and that Dr.made me feel like I was never going to win. So I quit. I gave up. I did go to pulomonary rehab 3 times but I always fell off the wagon. What I can not figure out is why I do the things I do, knowing what I know. Maybe I will find some answers here. I just don't know what to do next. I am so happy I found this group. > I really need all of you. Now I feel hopeful. Does that make any sense? > > > > > > > ________________________________ > From: Beth > To: Breathe-Support > Sent: Tuesday, April 21, 2009 1:24:22 PM > Subject: Re: Scared & lonely > > > > > > , > Welcome!! We're so glad you found us though I think I speak for all of us when I say we're sorry you even had reason to look for a group like this. There is no need to feel " totally embarrassed and ashamed " though. It sounds like you've been coping on your own for a long time. That can be very isolating can't it? I'm glad you found us even if it's only so that you know there are others who are fighting the same battle you are. It helps to know others in the same boat. > > I'm Beth, 49 living in Durham NC. I have fibrotic NSIP (non specific interstitial pneumonitis) and dermatomyositis, an auto-immune connective tissue disease. I've been on SSDI since November of 06. I get my medical care at Duke University. > > I can safely say we all want to do anything we can to help. Ask any questions that come to mind. Don't feel silly or embarrassed about asking. Everyone has a learning curve. You've already been reading the messages. You might want to go back and read old messages a bit or search by keyword through the archives if there's something in particular you'd like to look for. > > Are you in the US? Where do you get your care for the lung disease? Tell us more about you and your situation if you feel comfortable sharing. We're all in the same boat! Once again welcome, I'm glad you are here! > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > From: Calabrese > To: Breathe-Support@ yahoogroups. com > Sent: Tuesday, April 21, 2009 3:44:22 PM > Subject: Scared & lonely > > > Hello, > My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn.. Any who can help or want to help please let me know. Thank you. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 , Welcome. I just joined last week. I have had a similar experience so I can imagine your frustration. I was first diagnosed in February of 2006. I have a much clearer plan of attack and am awaiting approval from insurance. Keep the faith and do read the files. Questions, just fire away. You will find a multitude of responses. Facts, guides, and inspiration. Stefani > > Beth, > Thank you. I have been scared for a very long time. I am seeing a pulmonologist at Hospital in Naperville, Illinois. I live in a suburb nearby named Bolingbrook. I have just been ignoring my diseases. I was diagnosed with bronchectisis first which is a disease of the Bronci and then a lung biopsy revealed IPF. My Dr. is the only one I have seen except for the Dr. at Loyola. He was the head of the lung transplant unit and he is not a very nice person. He left me feeling helpless. I had a bunch of testing done and everything came back fine. Except my weight. I couln't lose very much weight and that Dr.made me feel like I was never going to win. So I quit. I gave up. I did go to pulomonary rehab 3 times but I always fell off the wagon. What I can not figure out is why I do the things I do, knowing what I know. Maybe I will find some answers here. I just don't know what to do next. I am so happy I found this group. > I really need all of you. Now I feel hopeful. Does that make any sense? > > > > > > > ________________________________ > From: Beth > To: Breathe-Support > Sent: Tuesday, April 21, 2009 1:24:22 PM > Subject: Re: Scared & lonely > > > > > > , > Welcome!! We're so glad you found us though I think I speak for all of us when I say we're sorry you even had reason to look for a group like this. There is no need to feel " totally embarrassed and ashamed " though. It sounds like you've been coping on your own for a long time. That can be very isolating can't it? I'm glad you found us even if it's only so that you know there are others who are fighting the same battle you are. It helps to know others in the same boat. > > I'm Beth, 49 living in Durham NC. I have fibrotic NSIP (non specific interstitial pneumonitis) and dermatomyositis, an auto-immune connective tissue disease. I've been on SSDI since November of 06. I get my medical care at Duke University. > > I can safely say we all want to do anything we can to help. Ask any questions that come to mind. Don't feel silly or embarrassed about asking. Everyone has a learning curve. You've already been reading the messages. You might want to go back and read old messages a bit or search by keyword through the archives if there's something in particular you'd like to look for. > > Are you in the US? Where do you get your care for the lung disease? Tell us more about you and your situation if you feel comfortable sharing. We're all in the same boat! Once again welcome, I'm glad you are here! > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > From: Calabrese > To: Breathe-Support@ yahoogroups. com > Sent: Tuesday, April 21, 2009 3:44:22 PM > Subject: Scared & lonely > > > Hello, > My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn.. Any who can help or want to help please let me know. Thank you. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 , Welcome. I just joined last week. I have had a similar experience so I can imagine your frustration. I was first diagnosed in February of 2006. I have a much clearer plan of attack and am awaiting approval from insurance. Keep the faith and do read the files. Questions, just fire away. You will find a multitude of responses. Facts, guides, and inspiration. Stefani > > Beth, > Thank you. I have been scared for a very long time. I am seeing a pulmonologist at Hospital in Naperville, Illinois. I live in a suburb nearby named Bolingbrook. I have just been ignoring my diseases. I was diagnosed with bronchectisis first which is a disease of the Bronci and then a lung biopsy revealed IPF. My Dr. is the only one I have seen except for the Dr. at Loyola. He was the head of the lung transplant unit and he is not a very nice person. He left me feeling helpless. I had a bunch of testing done and everything came back fine. Except my weight. I couln't lose very much weight and that Dr.made me feel like I was never going to win. So I quit. I gave up. I did go to pulomonary rehab 3 times but I always fell off the wagon. What I can not figure out is why I do the things I do, knowing what I know. Maybe I will find some answers here. I just don't know what to do next. I am so happy I found this group. > I really need all of you. Now I feel hopeful. Does that make any sense? > > > > > > > ________________________________ > From: Beth > To: Breathe-Support > Sent: Tuesday, April 21, 2009 1:24:22 PM > Subject: Re: Scared & lonely > > > > > > , > Welcome!! We're so glad you found us though I think I speak for all of us when I say we're sorry you even had reason to look for a group like this. There is no need to feel " totally embarrassed and ashamed " though. It sounds like you've been coping on your own for a long time. That can be very isolating can't it? I'm glad you found us even if it's only so that you know there are others who are fighting the same battle you are. It helps to know others in the same boat. > > I'm Beth, 49 living in Durham NC. I have fibrotic NSIP (non specific interstitial pneumonitis) and dermatomyositis, an auto-immune connective tissue disease. I've been on SSDI since November of 06. I get my medical care at Duke University. > > I can safely say we all want to do anything we can to help. Ask any questions that come to mind. Don't feel silly or embarrassed about asking. Everyone has a learning curve. You've already been reading the messages. You might want to go back and read old messages a bit or search by keyword through the archives if there's something in particular you'd like to look for. > > Are you in the US? Where do you get your care for the lung disease? Tell us more about you and your situation if you feel comfortable sharing. We're all in the same boat! Once again welcome, I'm glad you are here! > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > ________________________________ > From: Calabrese > To: Breathe-Support@ yahoogroups. com > Sent: Tuesday, April 21, 2009 3:44:22 PM > Subject: Scared & lonely > > > Hello, > My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn.. Any who can help or want to help please let me know. Thank you. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 Sher, Hello, great to hear from you. I live in a suburb of Chicago called Bolingbrook. I am 42 years old.. I was dx in 03/03 after a lung biopsy.I am ready to start fighting I guess and I am very sorry that so many people suffer from IPF but I am grateful to have found you and this group. I am also on O2 24/7 3L resting and 4/5L with exertion. Any suggestions would be much appreciated.. Thank you. To: Breathe-Support Sent: Tuesday, April 21, 2009 2:02:29 PMSubject: Re: Scared & lonely Welcome ....Just keep on keepin' on and reading the board. Check out the Files section for more info. In what State do you live and how old are you? How were you dx and when? You already jumped in, just keep on typing! I was dx 3-06, I'm on O2 during the day if needed, always with exertion and at night. You're in the right place... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Scared & lonely Hello,My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 Sher, Hello, great to hear from you. I live in a suburb of Chicago called Bolingbrook. I am 42 years old.. I was dx in 03/03 after a lung biopsy.I am ready to start fighting I guess and I am very sorry that so many people suffer from IPF but I am grateful to have found you and this group. I am also on O2 24/7 3L resting and 4/5L with exertion. Any suggestions would be much appreciated.. Thank you. To: Breathe-Support Sent: Tuesday, April 21, 2009 2:02:29 PMSubject: Re: Scared & lonely Welcome ....Just keep on keepin' on and reading the board. Check out the Files section for more info. In what State do you live and how old are you? How were you dx and when? You already jumped in, just keep on typing! I was dx 3-06, I'm on O2 during the day if needed, always with exertion and at night. You're in the right place... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Scared & lonely Hello,My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 Hi (one of my favourite names ... ... my youngest daughter's middle name!) Well you can stop being LONELY this minute... we fix up that one in a jiffy....hopefully becoming better informed about your illness will help with the Scared stuff... you're on the right path! Firstly this mob have a great motto...NONE of us have an Expiry Date stamped anywhere upon our person! We've ALL looked & no one has found theirs!........SO We concentrate on helping each other LIVE...... LOVE & BE LOVED..... If you read the Board from the Web Site (as opposed to getting thf e-mails direct to your e-mail box) you'll be able to use the Search box at the top of the page to put in any word that you might want to learn about... eg Prednisone.. VATS......or even someones Forum name if you want ot learn nore from one person's experience. The back list of messages is a GOLD Mine of information & discussion threads. You'll notice that we mostly put our Diagnosis summary/Date at the bottom of our signatures (Well we supposed to but I only do it every now & then 'cos I have to manually type it in every time BUT I'm too much of a GAB to do that every post!) Most importantly TELL us lots about YOU so we feel like we know you... jump in whenever you want to respond to an idea or you ahvea thought worth sharing....don't be shy.... Looking Forward to seeing your Posts... Cheers, in Australia (GIO) IPF: Fibrotic NSIP/UIP?????? Raynauds' May 2007 Ro52 May 2008 >> Hello,> My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 you are in good company with many of us on this Forum.. weight is an issue for lots of us. ....drug reactions... illness making exercise difficult... depression making it difficult to WANT to get up & exercise.....you spoken up & that is a great first step... Maybe.....Ask yourself what you will gain by losing weight & then what will you LOSE...are those losses real or imagined or connected to your scaredness.....IF you decide you really WANT to lose wieght (for YOURSELF not for some harsh, critical Doctor!) then we'll pitch in to help you! You've already made your 1st Step... then you go on to decide what you'll chose as your 2nd Step... see YOU stay in Control of the whole process...ALWAYS! Whne you're ready ask us any question about the whole weight loss number YOU need to know! Cheers again, GIO ( in Oz) > >> > Hello,> > My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you.> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 ... yes, I read some information from you on some of your other posts. I know nothing about the Chicago area. We live in Oregon and I love the PNW. You will gather strength as you read and write. And, you'll make friendships here too that become special. Even tho' the chances are most of us will never meet we do feel close to different people. Members do gather across the country for get togethers. It's wonderful to meet each other personally. Perhaps that will happen with you... Keep on keepin' on. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Scared & lonely Hello,My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 ... yes, I read some information from you on some of your other posts. I know nothing about the Chicago area. We live in Oregon and I love the PNW. You will gather strength as you read and write. And, you'll make friendships here too that become special. Even tho' the chances are most of us will never meet we do feel close to different people. Members do gather across the country for get togethers. It's wonderful to meet each other personally. Perhaps that will happen with you... Keep on keepin' on. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Scared & lonely Hello,My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 ... yes, I read some information from you on some of your other posts. I know nothing about the Chicago area. We live in Oregon and I love the PNW. You will gather strength as you read and write. And, you'll make friendships here too that become special. Even tho' the chances are most of us will never meet we do feel close to different people. Members do gather across the country for get togethers. It's wonderful to meet each other personally. Perhaps that will happen with you... Keep on keepin' on. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Scared & lonely Hello,My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 , Funnily enough I'm very familiar with Bolingbrook. Years ago my cousin and his wife lived in Bolingbrook. I have cousins also in Naperville. It is a small world isn't it? I have cousins all over the Chicago area. You should give Leanne at the Foundation for Pulmonary Fibrosis a call. Their website is www.pulmonaryfibrosis.org. (Lots of information there if you haven't looked at it yet) I know that there is an in person support group that meets in the Chicago area. She will know dates, place and time for that. I can't begin to explain to you how wonderful it is to meet other people with this disease in person. It's an overwhelming feeling, an instantaneous fellowship of people that "get it". People who understand what you're dealing with on a daily basis. You are not the only one who struggles with the issue of weight. It's an ongoing issue for me. I am having some success at the moment. I'm working closely with a nutritionist, gradually making small changes that I can live with for the rest of my life. I've not ever had any lasting results from following any kind of 'diet'. It works as long as I don't veer off at all but I can't live my life on a 'diet'. That's why I'm trying a different path this time. I'm losing weight...slowly...like a pound a week but at least it's moving in the right direction. I can't say enough good things about pulmonary rehab. You might want to try it again at some point. Learning to exercise safely can make a huge difference in your quality of life. Again , you are not alone. Please know you are among friends here! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Tuesday, April 21, 2009 7:56:53 PMSubject: Re: Scared & lonely Beth, Thank you. I have been scared for a very long time. I am seeing a pulmonologist at Hospital in Naperville, Illinois. I live in a suburb nearby named Bolingbrook. I have just been ignoring my diseases. I was diagnosed with bronchectisis first which is a disease of the Bronci and then a lung biopsy revealed IPF. My Dr. is the only one I have seen except for the Dr. at Loyola. He was the head of the lung transplant unit and he is not a very nice person. He left me feeling helpless. I had a bunch of testing done and everything came back fine. Except my weight. I couln't lose very much weight and that Dr.made me feel like I was never going to win. So I quit. I gave up. I did go to pulomonary rehab 3 times but I always fell off the wagon. What I can not figure out is why I do the things I do, knowing what I know. Maybe I will find some answers here. I just don't know what to do next. I am so happy I found this group. I really need all of you. Now I feel hopeful. Does that make any sense? From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, April 21, 2009 1:24:22 PMSubject: Re: Scared & lonely , Welcome!! We're so glad you found us though I think I speak for all of us when I say we're sorry you even had reason to look for a group like this. There is no need to feel "totally embarrassed and ashamed" though. It sounds like you've been coping on your own for a long time. That can be very isolating can't it? I'm glad you found us even if it's only so that you know there are others who are fighting the same battle you are. It helps to know others in the same boat. I'm Beth, 49 living in Durham NC. I have fibrotic NSIP (non specific interstitial pneumonitis) and dermatomyositis, an auto-immune connective tissue disease. I've been on SSDI since November of 06. I get my medical care at Duke University.. I can safely say we all want to do anything we can to help. Ask any questions that come to mind. Don't feel silly or embarrassed about asking. Everyone has a learning curve. You've already been reading the messages. You might want to go back and read old messages a bit or search by keyword through the archives if there's something in particular you'd like to look for. Are you in the US? Where do you get your care for the lung disease? Tell us more about you and your situation if you feel comfortable sharing. We're all in the same boat! Once again welcome, I'm glad you are here! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Calabrese <erin_calabrese01@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, April 21, 2009 3:44:22 PMSubject: Scared & lonely Hello,My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 , Hello, you said read the board from the website? What is that? I don't know that much about computers. I feel stupid but can you help? Australia! I have always wanted to go there. Thank you for your e-mail it was great. is actually my middle name. But it is the only name I've been called all my life.(Unless I was in trouble) Looking forward to hearing from you. To: Breathe-Support Sent: Tuesday, April 21, 2009 5:50:01 PMSubject: Re: Scared & lonely Hi (one of my favourite names ... ... my youngest daughter's middle name!) Well you can stop being LONELY this minute... we fix up that one in a jiffy....hopefully becoming better informed about your illness will help with the Scared stuff... you're on the right path! Firstly this mob have a great motto...NONE of us have an Expiry Date stamped anywhere upon our person! We've ALL looked & no one has found theirs!..... ...SO We concentrate on helping each other LIVE...... LOVE & BE LOVED..... If you read the Board from the Web Site (as opposed to getting thf e-mails direct to your e-mail box) you'll be able to use the Search box at the top of the page to put in any word that you might want to learn about... eg Prednisone.. VATS......or even someones Forum name if you want ot learn nore from one person's experience. The back list of messages is a GOLD Mine of information & discussion threads. You'll notice that we mostly put our Diagnosis summary/Date at the bottom of our signatures (Well we supposed to but I only do it every now & then 'cos I have to manually type it in every time BUT I'm too much of a GAB to do that every post!) Most importantly TELL us lots about YOU so we feel like we know you... jump in whenever you want to respond to an idea or you ahvea thought worth sharing....don' t be shy.... Looking Forward to seeing your Posts... Cheers, in Australia (GIO) IPF: Fibrotic NSIP/UIP???? ?? Raynauds' May 2007 Ro52 May 2008 >> Hello,> My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 , Hello, you said read the board from the website? What is that? I don't know that much about computers. I feel stupid but can you help? Australia! I have always wanted to go there. Thank you for your e-mail it was great. is actually my middle name. But it is the only name I've been called all my life.(Unless I was in trouble) Looking forward to hearing from you. To: Breathe-Support Sent: Tuesday, April 21, 2009 5:50:01 PMSubject: Re: Scared & lonely Hi (one of my favourite names ... ... my youngest daughter's middle name!) Well you can stop being LONELY this minute... we fix up that one in a jiffy....hopefully becoming better informed about your illness will help with the Scared stuff... you're on the right path! Firstly this mob have a great motto...NONE of us have an Expiry Date stamped anywhere upon our person! We've ALL looked & no one has found theirs!..... ...SO We concentrate on helping each other LIVE...... LOVE & BE LOVED..... If you read the Board from the Web Site (as opposed to getting thf e-mails direct to your e-mail box) you'll be able to use the Search box at the top of the page to put in any word that you might want to learn about... eg Prednisone.. VATS......or even someones Forum name if you want ot learn nore from one person's experience. The back list of messages is a GOLD Mine of information & discussion threads. You'll notice that we mostly put our Diagnosis summary/Date at the bottom of our signatures (Well we supposed to but I only do it every now & then 'cos I have to manually type it in every time BUT I'm too much of a GAB to do that every post!) Most importantly TELL us lots about YOU so we feel like we know you... jump in whenever you want to respond to an idea or you ahvea thought worth sharing....don' t be shy.... Looking Forward to seeing your Posts... Cheers, in Australia (GIO) IPF: Fibrotic NSIP/UIP???? ?? Raynauds' May 2007 Ro52 May 2008 >> Hello,> My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 , Just to jump in here to answer your question about the mechanics of the website. Right now you set up your membeship options so that you are receiving the messages as individual emails. That is how I get them too. For me it's the easiest, though some find it an overwhelming number of emails. You can also get the messages sent to your email in a format that Yahoo calls "Daily Digest". The messages are delivered to your inbox in a single email that typically arrives on the evening. You can also read the messages directly from the board. If you go here:http://health.groups.yahoo.com/group/Breathe-Support/messages You will find the message board. You can read all the emails and respond to them from there also. Hope that helps! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Tuesday, April 21, 2009 9:04:33 PMSubject: Re: Re: Scared & lonely , Hello, you said read the board from the website? What is that? I don't know that much about computers. I feel stupid but can you help? Australia! I have always wanted to go there. Thank you for your e-mail it was great. is actually my middle name. But it is the only name I've been called all my life.(Unless I was in trouble) Looking forward to hearing from you. From: <gina.francis@ bigpond.com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, April 21, 2009 5:50:01 PMSubject: Re: Scared & lonely Hi (one of my favourite names ... ... my youngest daughter's middle name!) Well you can stop being LONELY this minute... we fix up that one in a jiffy....hopefully becoming better informed about your illness will help with the Scared stuff... you're on the right path! Firstly this mob have a great motto...NONE of us have an Expiry Date stamped anywhere upon our person! We've ALL looked & no one has found theirs!..... ...SO We concentrate on helping each other LIVE...... LOVE & BE LOVED..... If you read the Board from the Web Site (as opposed to getting thf e-mails direct to your e-mail box) you'll be able to use the Search box at the top of the page to put in any word that you might want to learn about... eg Prednisone.. VATS......or even someones Forum name if you want ot learn nore from one person's experience. The back list of messages is a GOLD Mine of information & discussion threads. You'll notice that we mostly put our Diagnosis summary/Date at the bottom of our signatures (Well we supposed to but I only do it every now & then 'cos I have to manually type it in every time BUT I'm too much of a GAB to do that every post!) Most importantly TELL us lots about YOU so we feel like we know you... jump in whenever you want to respond to an idea or you ahvea thought worth sharing....don' t be shy.... Looking Forward to seeing your Posts... Cheers, in Australia (GIO) IPF: Fibrotic NSIP/UIP???? ?? Raynauds' May 2007 Ro52 May 2008 >> Hello,> My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 , when you first joined up there was a question somewhere alomng the way that asked whether you wanted the posts delivered to your personal e-mailaccount or whether you would read the messages on the web site. Many of us find our e0mail boxes get too clogged with Posts & we choose to read directly from the web site. It really is your own personal choice. If you do get the Posts direct to your e-mail take a close look at how the Posts are set out.. from my memory there should be some choices on the right hand side that will take you directly to the web-site if you click on them. The Web site gives you all the links to Files/Photos/Databas etc etc plus you'll be able to use the Search Facility at the top to go through the Archives. I much prefer to use the Web site.. its easy to scan down the daily Posts & quickly get to ones that I most need to read... or I can go thorugh each one individually ... if I have the time! Hope this makes sense.... > >> > Hello,> > My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you.> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2009 Report Share Posted April 21, 2009 , As others have already said...Welcome to the "air Family" You will find all the support you need here. We share just about anything Laughs, tears, recipes, pictures!!! We don't always talk about PF...we try to live our lives...different lives than many of us expected...but We Live with PF in its many forms the best we can with each other as support. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Calabrese wrote: Beth, Thank you. I have been scared for a very long time. I am seeing a pulmonologist at Hospital in Naperville, Illinois. I live in a suburb nearby named Bolingbrook. I have just been ignoring my diseases. I was diagnosed with bronchectisis first which is a disease of the Bronci and then a lung biopsy revealed IPF. My Dr. is the only one I have seen except for the Dr. at Loyola. He was the head of the lung transplant unit and he is not a very nice person. He left me feeling helpless. I had a bunch of testing done and everything came back fine. Except my weight. I couln't lose very much weight and that Dr.made me feel like I was never going to win. So I quit. I gave up. I did go to pulomonary rehab 3 times but I always fell off the wagon. What I can not figure out is why I do the things I do, knowing what I know. Maybe I will find some answers here. I just don't know what to do next. I am so happy I found this group. I really need all of you. Now I feel hopeful. Does that make any sense? From: Beth <mbmurtha (AT) yahoo (DOT) com> To: Breathe-Support Sent: Tuesday, April 21, 2009 1:24:22 PM Subject: Re: Scared & lonely , Welcome!! We're so glad you found us though I think I speak for all of us when I say we're sorry you even had reason to look for a group like this. There is no need to feel "totally embarrassed and ashamed" though. It sounds like you've been coping on your own for a long time. That can be very isolating can't it? I'm glad you found us even if it's only so that you know there are others who are fighting the same battle you are. It helps to know others in the same boat. I'm Beth, 49 living in Durham NC. I have fibrotic NSIP (non specific interstitial pneumonitis) and dermatomyositis, an auto-immune connective tissue disease. I've been on SSDI since November of 06. I get my medical care at Duke University.. I can safely say we all want to do anything we can to help. Ask any questions that come to mind. Don't feel silly or embarrassed about asking. Everyone has a learning curve. You've already been reading the messages. You might want to go back and read old messages a bit or search by keyword through the archives if there's something in particular you'd like to look for. Are you in the US? Where do you get your care for the lung disease? Tell us more about you and your situation if you feel comfortable sharing. We're all in the same boat! Once again welcome, I'm glad you are here! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Calabrese <erin_calabrese01@ yahoo.com> To: Breathe-Support@ yahoogroups. com Sent: Tuesday, April 21, 2009 3:44:22 PM Subject: Scared & lonely Hello, My name is . I'm 42 and I have been living with IPF and Bronchectisis for 6 years. I am blown away buy the e-mails I have been reading and I feel totally embarrassed and ashamed. I have been hiding my head in the sand. I never knew that sites like this existed until yesterday when I googled IPF. I would like to talk to people who understand IPF and I am seeing that I have much to learn. Any who can help or want to help please let me know. Thank you. Quote Link to comment Share on other sites More sharing options...
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