Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009 Dear Beth, I am just catching up with the posts and as I read this one i felt like responding! It is amazing how well you have expressed yourself, it sounds very sincere and honest , a lot of what you say is true for me and may be for several others , which is truly touching Thanks for sharing, Geeta > > Hi everyone, > The 29th of this month will mark 3 years since my diagnosis with pulmonary fibrosis. At that time in spite of my educational background and the fact that I am a nurse, I was baffled by this diagnosis. I had never seen it while I worked in a hospital setting and I knew no one who had it. Three weeks later at home I went to work on the internet. It took time but gradually things became clearer. My biopsy results came in and I educated myself. In July of 06 I found this group. Suddenly I was surrounded by people who 'got it'. People who understood what it was like to be hopped up on 100mg of prednisone at 3am, whose ribs hurt from coughing, who struggled to understand what was happening to them and make their way through the maze set before us. > Little by little I fought my way through to find a 'new normal'. There are two reasons I was able to do this, the first was my family. My son, my parents and my siblings loved and encouraged me. The second reason was just as important as the first. This group. It's difficult to overstate how key this group has been for me. The daily encouragement, the sharing of knowledge, and ideas and joy and sorrow, it's all wrapped up right here in this amazing group of people. > Lots of things have changed for me in the last 3 years. I was approved for SSDI and began collecting in November of 06, Medicare finally kicked in in November of 08. I relocated from NY to NC in December of 07 and began seeing doctors at Duke. > I've been able to 'work' part time. (loose definition of work LOL) I've learned how to travel by car and make it work for me. I've gone back to hobbies and activities that had fallen by the wayside when I was working 60 or 70 hours a week. I spend time differently than I used to. I choose to be with people that I love and do things that make me happy. I don't have the time or the inclination to do things just because other people expect that I should. I have some " friends " and family members that do not understand my diagnosis, nor do they care to understand.... Shrug....I don't worry about it anymore. I've learned you can't shove understanding into anyones head. Life is far too short and fragile to live for anyone else's expectations. > > I just felt like sharing this today. We've got many members who have joined in the last couple of months. We can all feel the fear and grief in some of the posts. We all get it, we've all been there and understand. There is a wide variety of specific diagnosis. There is a range of life expectancy. It's easy to get caught up in the specifics and there is a place for all of that. But the one thing I would suggest is not to let all that consume your life. Remember to make time to be happy. Keep it as simple as you need to but do something every single day that brings you some joy. Life is not over, it's different and maybe in some ways diminished but it's not over. > One of my teenage nieces told me this weekend, " You're so cool, you get it. " I don't remember what we were talking about but I loved that she could look at her nearly 50 year old aunt, overweight and with oxygen tubing up her nose and see someone who's " Cool " . It doesn't get any better than that. > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009 MB, I loved your synopsis and I took the liberty to write this short commentary and forward your e-mail to several of my friends and relatives. I could not put in words about the way I feel the way you did and I felt compelled to forward it. A lot of friends and relatives seem to think this is a made up disease and the O2 hose is for fun and sympathy and when you do not do as expected you use the hose for a cop out or excuse to keep from doing the expected. How I would love to do the expected and not have the disease and trying to make other people who are uninformed or ignorant "get it". I do not send e-mails out every day but Do read and appreciate everyone's comments, love, caring, concern,understanding, and above all SUPPORT for the ones here. MB I want to shout out to you, THANKS for every e-mail you send and comments that you provide. Also Bruce for advice to all ( Honorary Dr.) as well. I would say in 99.9% of the time I agree with all. Love all on this site, Joe JOE & JOANIE LAMENSKIE IPF JAN. 2008 As everyone knows I have pulmonary fibrosis and not everyone understands the disease. Obviously if I did not have it, I would not either. Everyone understands cancer, heart attack, stroke, leukemia, multiple sclerosis, muscular distrophy, etc. Few people have heard of IPF. I do belong to this Internet support group (as well as one at Emory hospital) and it helps to have people who really understand the disease. As I have stated in previous e-mails, I am not asking for sympathy,(found in dictionary between shit and syphilis) just some idea and understanding. Attached is a letter written by the Moderator of the internet support group that speaks volumes for how most of us feel that have been stricken with this disease. We do not like to dwell on it but when you try to do normal mundane daily activities you can not help think about it as it slaps you in the face or kicks you in the butt. All I am asking is appreciate your health and DO NOT take for granted walking up steps, mowing lawn, washing the car, vacuuming, walking, running, and even talking as it takes lungs to do that. Thank God every day for what YOU take for granted. As always thanks for prayers and support for Joanie and me, Joe JOE & JOANIE LAMENSKIE IPF JAN. 2008 >> 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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