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 , I'm sure I'm not the first to tell you that I love your screen name. hunnybunnybinky is very cute. I found out about my IPF when I was 36. I had been having symptoms for years and my Dr. at the time kept telling me that I had a thyroid problem. Well 2 years later and in the emergency room my Dr there found Bronchiectsis, which is a COPD caused by something else. To find out they did a lung biopsy and volia IPF. The first year I tried very hard and the Dr. I went to see for lung transplantion left me with no hope. So I ignored it mostly. I mean I was still on O2 everyday I just did less and less and now I don't go anywhere or do very little. I feel like a failure. I do have hope now that I have found all of you. Thanks for the welcome. To: Breathe-Support Sent: Tuesday, April 21, 2009 4:54:42 PMSubject: Re: Scared & lonely , 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 FLIPF 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 , I'm sure I'm not the first to tell you that I love your screen name. hunnybunnybinky is very cute. I found out about my IPF when I was 36. I had been having symptoms for years and my Dr. at the time kept telling me that I had a thyroid problem. Well 2 years later and in the emergency room my Dr there found Bronchiectsis, which is a COPD caused by something else. To find out they did a lung biopsy and volia IPF. The first year I tried very hard and the Dr. I went to see for lung transplantion left me with no hope. So I ignored it mostly. I mean I was still on O2 everyday I just did less and less and now I don't go anywhere or do very little. I feel like a failure. I do have hope now that I have found all of you. Thanks for the welcome. To: Breathe-Support Sent: Tuesday, April 21, 2009 4:54:42 PMSubject: Re: Scared & lonely , 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 FLIPF 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 22, 2009 Report Share Posted April 22, 2009 Hi ! I am sorry that you have to join us but you are definitely in the right place. I was diagnosed when I was 43 years old and now I am 54 yrs old. I have been on oxygen 24/7 for 4 years. I do many things and try to stay active. I go to exercise at a class in the Wellness Center that is a part of the hospital where I live. I also am active as I can be at my church. But exercising is the key-you have to do it to maintain what you have. I started in this class that I am in about 3months after I was diagnosed in February, 1999. There were times when I was not there but I have tried to keep it up. Some of the people here have gone to pulmonary rehab, which is most helpful to help you learn how to exercise with IPF. Walking is also good. I also know how you feel about your lung tx doctor. I felt that way about one of the doctors at Emory in Atlanta. He was only concerned about my losing weight. He pushed me and he wanted me to hurrry up and lose it. I lost 50 pounds in 2004 when I was very sick but the past 5 years have been very hard. It is hard to lose weight. This doctor upset me so badly at every visit that I complained about him to the adminstrator of the pulmonary department and now I have another doctor that I truly adore. Yes, he does talk about losing weight and I am still trying. But he said I have ten years to do it. If you need to, change doctors. I also have a nutritionist in my exercise class and I have consulted with her many times when I went to my class. , I am glad that you are here and we are all here for you if you need us. Take care! Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl >> ,> 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 PM> Subject: 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. com> 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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