Guest guest Posted February 22, 2003 Report Share Posted February 22, 2003 Sandy I have replioed to your posts when I could help you. You are important to me just sometimes I do not have your answer hun Re: Feelings > Tina, > I hear you there sometimes when I make a post I don't get it > responded to. I am new to this board and I feel left out and alone. > So anytime you want just email or send me a post and I will talk to > you. > > Sandy > > > > Ladies, > > I know what you me about posting & noone replying to your > post.The last 3 > > out of 4 times Ive posted, not 1 person has replied to me.Feelings > get hurt.I > > know everyone is busy with their own lifes, but I try to responde > to as many > > post as possible.Sometimes I feel not part of the group.Sorry if > Ive ignored > > anyone.I only have 1 TR sister who always without fail, answers > me.Kinda sad > > huh? > > hugs Tina > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Hi all, I've posted on this site a few times, but sometimes wonder why. I was diagnosed a year ago, and have had little change since that time. I'm not on oxygen, but do notice very subtle changes in breathing after exertion. Those who see me wouldn't realize what is going on internally. We've told a few close friends and some of our families, including our children, who are handling it as best they can. I know those close to us deserve to know what we are dealing with, but at the same time, we live in a small community where I would be the topic of discussion from now until the time this chapter in my life ends. I want to be treated as " normal " (whatever that is as long as possible. I keep hoping for the miracle, and I know many of you see that as folly. I realize the normal fate with this crappy disease, but want to ignore it as best I can. That isn't easy; at times it makes me so depressed to realize what my journey to death might be like. I'm not ready mentally for that, as I'm sure many of you can relate to. I resigned from my job 9 months ago because I didn't want to spend whatever time I had left on earth at a job I didn't enjoy. That was probably not a good idea since I don't qualify for disability, but my husband and I did what we thought was best for my mental health. This new-found freedom after 30+ years of being employed also gives me more time to think ... not always a good thing. I check this site daily and so am aware of what you handle daily, both physically and mentally. My physician advised me not to do that since it doesn't help my mental well-being at this point in my journey. I agree with her, however, what everyone here deals with may also be my future. Sorry for the long post - I guess I've been storing it up And, I'm saving some for another time! Thanks for listening. Even though I don't post often, I still keep all of you in my thoughts. gigi ILD 3/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Hello Gigi, I totally relate to you not being mentally ready. and there are times when I'm not in the right 'place' where I can't read some of the posts. If you're not mentally ready to read some of the posts, that's fine, that's completely understandable. And I also fully understand not wanting everyone to know your buisness (personally I like being 'not normal' I make an effort not to be normal!) I'm rambling a bit. What I'm trying to say is that it's fine to read just those posts that you want to, and it's fine to only post from time to time. We'll be here for you when you do feel the need to reach out to people who fully understand. My friends and family are very kind and sympathetic etc, but they don't KNOW what I'm going through if you see what I mean. You keep hoping for the miracle. I don't see that as folly, I see that as living in hope. You are not yet on O2 and who knows what new treatments will be availnable to us next year or the year after. I've been diagnosed with PF for over 10 years. I think I've probably had it for at least 14, which is when I first became aware of lung problems. Some on here have been diagnosed longer than me. I don't dwell on how I'm going to die as I could just as easily die of stupidity before this disease gets me. Take care Love Ze (38) Dermatomyositis, Pulmonary Fibrosis etc for years!>> Hi all,> > I've posted on this site a few times, but sometimes wonder why. I was > diagnosed a year ago, and have had little change since that time. I'm > not on oxygen, but do notice very subtle changes in breathing after > exertion. Those who see me wouldn't realize what is going on > internally.> > We've told a few close friends and some of our families, including > our children, who are handling it as best they can. I know those > close to us deserve to know what we are dealing with, but at the same > time, we live in a small community where I would be the topic of > discussion from now until the time this chapter in my life ends. I > want to be treated as "normal" (whatever that is as long as > possible.> > I keep hoping for the miracle, and I know many of you see that as > folly. I realize the normal fate with this crappy disease, but want > to ignore it as best I can. That isn't easy; at times it makes me so > depressed to realize what my journey to death might be like. I'm not > ready mentally for that, as I'm sure many of you can relate to. > > I resigned from my job 9 months ago because I didn't want to spend > whatever time I had left on earth at a job I didn't enjoy. That was > probably not a good idea since I don't qualify for disability, but my > husband and I did what we thought was best for my mental health. This > new-found freedom after 30+ years of being employed also gives me > more time to think ... not always a good thing.> > I check this site daily and so am aware of what you handle daily, > both physically and mentally. My physician advised me not to do that > since it doesn't help my mental well-being at this point in my > journey. I agree with her, however, what everyone here deals with may > also be my future. > > Sorry for the long post - I guess I've been storing it up And, I'm > saving some for another time! Thanks for listening. Even though I > don't post often, I still keep all of you in my thoughts. > > gigi> ILD 3/07> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 We're still glad for your input when you do post. I know nothing about your situation or your physician or their experience with PF. In a small community I'd be worried a bit, but perhaps you are seeing someone from a major teaching hospital or with recent experience at one. I am at odds with a physician who discourages education, but not at odds at all with you if you prefer not to read about the future too often. You can ignore the fate, but if you ignore the realities of the disease it will haunt you. Just be sure you're getting enough six minute walks and other testing to keep your saturation levels up above 90% and protect all your other organs. That way you can stick to just this disease hopefully. If you're noticing changes in breathing upon exertion, regardless of how subtle, it does concern me that your oxygen may be dropping. Oxygen is the key to how much and how long you'll enjoy life. Your PFT's would determine if and when you qualify for social security disability. I think you were wise to decide to spend the time you have enjoying life since you were able to work it out to quit working. Feel free to post anytime and don't worry that it might be at odds with any of us. We all just have opinions and experiences. There are few rights or wrongs other than maintaining your oxygen levels. Everything else becomes a matter of choice. > > Hi all, > > I've posted on this site a few times, but sometimes wonder why. I was > diagnosed a year ago, and have had little change since that time. I'm > not on oxygen, but do notice very subtle changes in breathing after > exertion. Those who see me wouldn't realize what is going on > internally. > > We've told a few close friends and some of our families, including > our children, who are handling it as best they can. I know those > close to us deserve to know what we are dealing with, but at the same > time, we live in a small community where I would be the topic of > discussion from now until the time this chapter in my life ends. I > want to be treated as " normal " (whatever that is as long as > possible. > > I keep hoping for the miracle, and I know many of you see that as > folly. I realize the normal fate with this crappy disease, but want > to ignore it as best I can. That isn't easy; at times it makes me so > depressed to realize what my journey to death might be like. I'm not > ready mentally for that, as I'm sure many of you can relate to. > > I resigned from my job 9 months ago because I didn't want to spend > whatever time I had left on earth at a job I didn't enjoy. That was > probably not a good idea since I don't qualify for disability, but my > husband and I did what we thought was best for my mental health. This > new-found freedom after 30+ years of being employed also gives me > more time to think ... not always a good thing. > > I check this site daily and so am aware of what you handle daily, > both physically and mentally. My physician advised me not to do that > since it doesn't help my mental well-being at this point in my > journey. I agree with her, however, what everyone here deals with may > also be my future. > > Sorry for the long post - I guess I've been storing it up And, I'm > saving some for another time! Thanks for listening. Even though I > don't post often, I still keep all of you in my thoughts. > > gigi > ILD 3/07 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 We're still glad for your input when you do post. I know nothing about your situation or your physician or their experience with PF. In a small community I'd be worried a bit, but perhaps you are seeing someone from a major teaching hospital or with recent experience at one. I am at odds with a physician who discourages education, but not at odds at all with you if you prefer not to read about the future too often. You can ignore the fate, but if you ignore the realities of the disease it will haunt you. Just be sure you're getting enough six minute walks and other testing to keep your saturation levels up above 90% and protect all your other organs. That way you can stick to just this disease hopefully. If you're noticing changes in breathing upon exertion, regardless of how subtle, it does concern me that your oxygen may be dropping. Oxygen is the key to how much and how long you'll enjoy life. Your PFT's would determine if and when you qualify for social security disability. I think you were wise to decide to spend the time you have enjoying life since you were able to work it out to quit working. Feel free to post anytime and don't worry that it might be at odds with any of us. We all just have opinions and experiences. There are few rights or wrongs other than maintaining your oxygen levels. Everything else becomes a matter of choice. > > Hi all, > > I've posted on this site a few times, but sometimes wonder why. I was > diagnosed a year ago, and have had little change since that time. I'm > not on oxygen, but do notice very subtle changes in breathing after > exertion. Those who see me wouldn't realize what is going on > internally. > > We've told a few close friends and some of our families, including > our children, who are handling it as best they can. I know those > close to us deserve to know what we are dealing with, but at the same > time, we live in a small community where I would be the topic of > discussion from now until the time this chapter in my life ends. I > want to be treated as " normal " (whatever that is as long as > possible. > > I keep hoping for the miracle, and I know many of you see that as > folly. I realize the normal fate with this crappy disease, but want > to ignore it as best I can. That isn't easy; at times it makes me so > depressed to realize what my journey to death might be like. I'm not > ready mentally for that, as I'm sure many of you can relate to. > > I resigned from my job 9 months ago because I didn't want to spend > whatever time I had left on earth at a job I didn't enjoy. That was > probably not a good idea since I don't qualify for disability, but my > husband and I did what we thought was best for my mental health. This > new-found freedom after 30+ years of being employed also gives me > more time to think ... not always a good thing. > > I check this site daily and so am aware of what you handle daily, > both physically and mentally. My physician advised me not to do that > since it doesn't help my mental well-being at this point in my > journey. I agree with her, however, what everyone here deals with may > also be my future. > > Sorry for the long post - I guess I've been storing it up And, I'm > saving some for another time! Thanks for listening. Even though I > don't post often, I still keep all of you in my thoughts. > > gigi > ILD 3/07 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Gigi, While I agree that you should not become your disease, reading sites like ours is not a wrong thing for you to do. Garnering information, educating yourself and getting your medical records in order is a very right thing to do. This is a progressive dissease. Whether you ignore it or not, it is not going away. I pray that your disease progresses slowly. Mine has. In April it will be 11 years since biopsy and diagnosis. During this time, I went about learning everythng I could. That helped me choose better doctors, be aware of treatments and learn about research. I have found information that has led me to contact senators and congressmen to push for bills that will benifit PF patients.....such as the bill to eliminate the two year waiting period for medicare. I have lived with zeal every day that God has given me. I believe in life. I cherish it. But, I want to be prepared for this disease and it's consequences. Pulmonary Fibrosis is my enemy and I need to know my enemy. This group was formed so that we could get support and support others with this monster. We lean on each other. Sometimes saddness is a part of our conversation, but other times it is a cheerful place to visit. I hope that you have many, many years on this earth. I pray constantly for a cure, even a treatment. But, until then we need to arm ourselves to do battle. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 >> Hi all,> > I've posted on this site a few times, but sometimes wonder why. I was > diagnosed a year ago, and have had little change since that time. I'm > not on oxygen, but do notice very subtle changes in breathing after > exertion. Those who see me wouldn't realize what is going on > internally.> > We've told a few close friends and some of our families, including > our children, who are handling it as best they can. I know those > close to us deserve to know what we are dealing with, but at the same > time, we live in a small community where I would be the topic of > discussion from now until the time this chapter in my life ends. I > want to be treated as "normal" (whatever that is as long as > possible.> > I keep hoping for the miracle, and I know many of you see that as > folly. I realize the normal fate with this crappy disease, but want > to ignore it as best I can. That isn't easy; at times it makes me so > depressed to realize what my journey to death might be like. I'm not > ready mentally for that, as I'm sure many of you can relate to. > > I resigned from my job 9 months ago because I didn't want to spend > whatever time I had left on earth at a job I didn't enjoy. That was > probably not a good idea since I don't qualify for disability, but my > husband and I did what we thought was best for my mental health. This > new-found freedom after 30+ years of being employed also gives me > more time to think ... not always a good thing.> > I check this site daily and so am aware of what you handle daily, > both physically and mentally. My physician advised me not to do that > since it doesn't help my mental well-being at this point in my > journey. I agree with her, however, what everyone here deals with may > also be my future. > > Sorry for the long post - I guess I've been storing it up And, I'm > saving some for another time! Thanks for listening. Even though I > don't post often, I still keep all of you in my thoughts. > > gigi> ILD 3/07> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Zena, Honey, you don't die from stupidity. Thank God! Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > >> > Hi all,> >> > I've posted on this site a few times, but sometimes wonder why. I was> > diagnosed a year ago, and have had little change since that time. I'm> > not on oxygen, but do notice very subtle changes in breathing after> > exertion. Those who see me wouldn't realize what is going on> > internally.> >> > We've told a few close friends and some of our families, including> > our children, who are handling it as best they can. I know those> > close to us deserve to know what we are dealing with, but at the same> > time, we live in a small community where I would be the topic of> > discussion from now until the time this chapter in my life ends. I> > want to be treated as "normal" (whatever that is as long as> > possible.> >> > I keep hoping for the miracle, and I know many of you see that as> > folly. I realize the normal fate with this crappy disease, but want> > to ignore it as best I can. That isn't easy; at times it makes me so> > depressed to realize what my journey to death might be like. I'm not> > ready mentally for that, as I'm sure many of you can relate to.> >> > I resigned from my job 9 months ago because I didn't want to spend> > whatever time I had left on earth at a job I didn't enjoy. That was> > probably not a good idea since I don't qualify for disability, but my> > husband and I did what we thought was best for my mental health. This> > new-found freedom after 30+ years of being employed also gives me> > more time to think ... not always a good thing.> >> > I check this site daily and so am aware of what you handle daily,> > both physically and mentally. My physician advised me not to do that> > since it doesn't help my mental well-being at this point in my> > journey. I agree with her, however, what everyone here deals with may> > also be my future.> >> > Sorry for the long post - I guess I've been storing it up And, I'm> > saving some for another time! Thanks for listening. Even though I> > don't post often, I still keep all of you in my thoughts.> >> > gigi> > ILD 3/07> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Actually, you probably could die from stupidity if you really think about it......hate to say it....thank God it hasn't happened yet....... XOXO LeanneJoyce wrote: Zena, Honey, you don't die from stupidity. Thank God! Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > >> > Hi all,> >> > I've posted on this site a few times, but sometimes wonder why. I was> > diagnosed a year ago, and have had little change since that time. I'm> > not on oxygen, but do notice very subtle changes in breathing after> > exertion. Those who see me wouldn't realize what is going on> > internally.> >> > We've told a few close friends and some of our families, including> > our children, who are handling it as best they can. I know those> > close to us deserve to know what we are dealing with, but at the same> > time, we live in a small community where I would be the topic of> > discussion from now until the time this chapter in my life ends. I> > want to be treated as "normal" (whatever that is as long as> > possible.> >> > I keep hoping for the miracle, and I know many of you see that as> > folly. I realize the normal fate with this crappy disease, but want> > to ignore it as best I can. That isn't easy; at times it makes me so> > depressed to realize what my journey to death might be like. I'm not> > ready mentally for that, as I'm sure many of you can relate to.> >> > I resigned from my job 9 months ago because I didn't want to spend> > whatever time I had left on earth at a job I didn't enjoy. That was> > probably not a good idea since I don't qualify for disability, but my> > husband and I did what we thought was best for my mental health. This> > new-found freedom after 30+ years of being employed also gives me> > more time to think ... not always a good thing.> >> > I check this site daily and so am aware of what you handle daily,> > both physically and mentally. My physician advised me not to do that> > since it doesn't help my mental well-being at this point in my> > journey. I agree with her, however, what everyone here deals with may> > also be my future.> >> > Sorry for the long post - I guess I've been storing it up And, I'm> > saving some for another time! Thanks for listening. Even though I> > don't post often, I still keep all of you in my thoughts.> >> > gigi> > ILD 3/07> >> Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Actually, you probably could die from stupidity if you really think about it......hate to say it....thank God it hasn't happened yet....... XOXO LeanneJoyce wrote: Zena, Honey, you don't die from stupidity. Thank God! Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > >> > Hi all,> >> > I've posted on this site a few times, but sometimes wonder why. I was> > diagnosed a year ago, and have had little change since that time. I'm> > not on oxygen, but do notice very subtle changes in breathing after> > exertion. Those who see me wouldn't realize what is going on> > internally.> >> > We've told a few close friends and some of our families, including> > our children, who are handling it as best they can. I know those> > close to us deserve to know what we are dealing with, but at the same> > time, we live in a small community where I would be the topic of> > discussion from now until the time this chapter in my life ends. I> > want to be treated as "normal" (whatever that is as long as> > possible.> >> > I keep hoping for the miracle, and I know many of you see that as> > folly. I realize the normal fate with this crappy disease, but want> > to ignore it as best I can. That isn't easy; at times it makes me so> > depressed to realize what my journey to death might be like. I'm not> > ready mentally for that, as I'm sure many of you can relate to.> >> > I resigned from my job 9 months ago because I didn't want to spend> > whatever time I had left on earth at a job I didn't enjoy. That was> > probably not a good idea since I don't qualify for disability, but my> > husband and I did what we thought was best for my mental health. This> > new-found freedom after 30+ years of being employed also gives me> > more time to think ... not always a good thing.> >> > I check this site daily and so am aware of what you handle daily,> > both physically and mentally. My physician advised me not to do that> > since it doesn't help my mental well-being at this point in my> > journey. I agree with her, however, what everyone here deals with may> > also be my future.> >> > Sorry for the long post - I guess I've been storing it up And, I'm> > saving some for another time! Thanks for listening. Even though I> > don't post often, I still keep all of you in my thoughts.> >> > gigi> > ILD 3/07> >> Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Yea, But there is not a cure for stupid.. hee hee Love and Prayers, Peggy Florida, ipf 6/04 Worry looks around. Sorry looks back, Faith looks up. Actually, you probably could die from stupidity if you really think about it......hate to say it....thank God it hasn't happened yet....... XOXO Leanne Joyce wrote: Zena, Honey, you don't die from stupidity. Thank God! Hugs, Joyce D. Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 ......I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > > > > Hi all, > > > > I've posted on this site a few times, but sometimes wonder why. I was > > diagnosed a year ago, and have had little change since that time. I'm > > not on oxygen, but do notice very subtle changes in breathing after > > exertion. Those who see me wouldn't realize what is going on > > internally. > > > > We've told a few close friends and some of our families, including > > our children, who are handling it as best they can. I know those > > close to us deserve to know what we are dealing with, but at the same > > time, we live in a small community where I would be the topic of > > discussion from now until the time this chapter in my life ends. I > > want to be treated as " normal " (whatever that is as long as > > possible. > > > > I keep hoping for the miracle, and I know many of you see that as > > folly. I realize the normal fate with this crappy disease, but want > > to ignore it as best I can. That isn't easy; at times it makes me so > > depressed to realize what my journey to death might be like. I'm not > > ready mentally for that, as I'm sure many of you can relate to. > > > > I resigned from my job 9 months ago because I didn't want to spend > > whatever time I had left on earth at a job I didn't enjoy. That was > > probably not a good idea since I don't qualify for disability, but my > > husband and I did what we thought was best for my mental health. This > > new-found freedom after 30+ years of being employed also gives me > > more time to think ... not always a good thing. > > > > I check this site daily and so am aware of what you handle daily, > > both physically and mentally. My physician advised me not to do that > > since it doesn't help my mental well-being at this point in my > > journey. I agree with her, however, what everyone here deals with may > > also be my future. > > > > Sorry for the long post - I guess I've been storing it up And, I'm > > saving some for another time! Thanks for listening. Even though I > > don't post often, I still keep all of you in my thoughts. > > > > gigi > > ILD 3/07 > > > Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Yea, But there is not a cure for stupid.. hee hee Love and Prayers, Peggy Florida, ipf 6/04 Worry looks around. Sorry looks back, Faith looks up. Actually, you probably could die from stupidity if you really think about it......hate to say it....thank God it hasn't happened yet....... XOXO Leanne Joyce wrote: Zena, Honey, you don't die from stupidity. Thank God! Hugs, Joyce D. Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 ......I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > > > > Hi all, > > > > I've posted on this site a few times, but sometimes wonder why. I was > > diagnosed a year ago, and have had little change since that time. I'm > > not on oxygen, but do notice very subtle changes in breathing after > > exertion. Those who see me wouldn't realize what is going on > > internally. > > > > We've told a few close friends and some of our families, including > > our children, who are handling it as best they can. I know those > > close to us deserve to know what we are dealing with, but at the same > > time, we live in a small community where I would be the topic of > > discussion from now until the time this chapter in my life ends. I > > want to be treated as " normal " (whatever that is as long as > > possible. > > > > I keep hoping for the miracle, and I know many of you see that as > > folly. I realize the normal fate with this crappy disease, but want > > to ignore it as best I can. That isn't easy; at times it makes me so > > depressed to realize what my journey to death might be like. I'm not > > ready mentally for that, as I'm sure many of you can relate to. > > > > I resigned from my job 9 months ago because I didn't want to spend > > whatever time I had left on earth at a job I didn't enjoy. That was > > probably not a good idea since I don't qualify for disability, but my > > husband and I did what we thought was best for my mental health. This > > new-found freedom after 30+ years of being employed also gives me > > more time to think ... not always a good thing. > > > > I check this site daily and so am aware of what you handle daily, > > both physically and mentally. My physician advised me not to do that > > since it doesn't help my mental well-being at this point in my > > journey. I agree with her, however, what everyone here deals with may > > also be my future. > > > > Sorry for the long post - I guess I've been storing it up And, I'm > > saving some for another time! Thanks for listening. Even though I > > don't post often, I still keep all of you in my thoughts. > > > > gigi > > ILD 3/07 > > > Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 AMEN to everything Joyce wrote! I agree wholeheartedly!!! Babs > > > > Hi all, > > > > I've posted on this site a few times, but sometimes wonder why. I was > > diagnosed a year ago, and have had little change since that time. I'm > > not on oxygen, but do notice very subtle changes in breathing after > > exertion. Those who see me wouldn't realize what is going on > > internally. > > > > We've told a few close friends and some of our families, including > > our children, who are handling it as best they can. I know those > > close to us deserve to know what we are dealing with, but at the same > > time, we live in a small community where I would be the topic of > > discussion from now until the time this chapter in my life ends. I > > want to be treated as " normal " (whatever that is as long as > > possible. > > > > I keep hoping for the miracle, and I know many of you see that as > > folly. I realize the normal fate with this crappy disease, but want > > to ignore it as best I can. That isn't easy; at times it makes me so > > depressed to realize what my journey to death might be like. I'm not > > ready mentally for that, as I'm sure many of you can relate to. > > > > I resigned from my job 9 months ago because I didn't want to spend > > whatever time I had left on earth at a job I didn't enjoy. That was > > probably not a good idea since I don't qualify for disability, but my > > husband and I did what we thought was best for my mental health. This > > new-found freedom after 30+ years of being employed also gives me > > more time to think ... not always a good thing. > > > > I check this site daily and so am aware of what you handle daily, > > both physically and mentally. My physician advised me not to do that > > since it doesn't help my mental well-being at this point in my > > journey. I agree with her, however, what everyone here deals with may > > also be my future. > > > > Sorry for the long post - I guess I've been storing it up And, I'm > > saving some for another time! Thanks for listening. Even though I > > don't post often, I still keep all of you in my thoughts. > > > > gigi > > ILD 3/07 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 AMEN to everything Joyce wrote! I agree wholeheartedly!!! Babs > > > > Hi all, > > > > I've posted on this site a few times, but sometimes wonder why. I was > > diagnosed a year ago, and have had little change since that time. I'm > > not on oxygen, but do notice very subtle changes in breathing after > > exertion. Those who see me wouldn't realize what is going on > > internally. > > > > We've told a few close friends and some of our families, including > > our children, who are handling it as best they can. I know those > > close to us deserve to know what we are dealing with, but at the same > > time, we live in a small community where I would be the topic of > > discussion from now until the time this chapter in my life ends. I > > want to be treated as " normal " (whatever that is as long as > > possible. > > > > I keep hoping for the miracle, and I know many of you see that as > > folly. I realize the normal fate with this crappy disease, but want > > to ignore it as best I can. That isn't easy; at times it makes me so > > depressed to realize what my journey to death might be like. I'm not > > ready mentally for that, as I'm sure many of you can relate to. > > > > I resigned from my job 9 months ago because I didn't want to spend > > whatever time I had left on earth at a job I didn't enjoy. That was > > probably not a good idea since I don't qualify for disability, but my > > husband and I did what we thought was best for my mental health. This > > new-found freedom after 30+ years of being employed also gives me > > more time to think ... not always a good thing. > > > > I check this site daily and so am aware of what you handle daily, > > both physically and mentally. My physician advised me not to do that > > since it doesn't help my mental well-being at this point in my > > journey. I agree with her, however, what everyone here deals with may > > also be my future. > > > > Sorry for the long post - I guess I've been storing it up And, I'm > > saving some for another time! Thanks for listening. Even though I > > don't post often, I still keep all of you in my thoughts. > > > > gigi > > ILD 3/07 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Yes you can. It doesn't have to be your own stupidity! Love Ze xx> > >> > > Hi all,> > >> > > I've posted on this site a few times, but sometimes wonder why. I> was> > > diagnosed a year ago, and have had little change since that time.> I'm> > > not on oxygen, but do notice very subtle changes in breathing after> > > exertion. Those who see me wouldn't realize what is going on> > > internally.> > >> > > We've told a few close friends and some of our families, including> > > our children, who are handling it as best they can. I know those> > > close to us deserve to know what we are dealing with, but at the> same> > > time, we live in a small community where I would be the topic of> > > discussion from now until the time this chapter in my life ends. I> > > want to be treated as "normal" (whatever that is as long as> > > possible.> > >> > > I keep hoping for the miracle, and I know many of you see that as> > > folly. I realize the normal fate with this crappy disease, but want> > > to ignore it as best I can. That isn't easy; at times it makes me so> > > depressed to realize what my journey to death might be like. I'm not> > > ready mentally for that, as I'm sure many of you can relate to.> > >> > > I resigned from my job 9 months ago because I didn't want to spend> > > whatever time I had left on earth at a job I didn't enjoy. That was> > > probably not a good idea since I don't qualify for disability, but> my> > > husband and I did what we thought was best for my mental health.> This> > > new-found freedom after 30+ years of being employed also gives me> > > more time to think ... not always a good thing.> > >> > > I check this site daily and so am aware of what you handle daily,> > > both physically and mentally. My physician advised me not to do that> > > since it doesn't help my mental well-being at this point in my> > > journey. I agree with her, however, what everyone here deals with> may> > > also be my future.> > >> > > Sorry for the long post - I guess I've been storing it up And,> I'm> > > saving some for another time! Thanks for listening. Even though I> > > don't post often, I still keep all of you in my thoughts.> > >> > > gigi> > > ILD 3/07> > >> >> Quote Link to comment Share on other sites More sharing options...
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