Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 Sharon, I too, had the sharp " lightning bolt " pains that shot down my face, neck, and entire right side when I coughed or sneezed. That is when I was finally diagnosed chiari w/ syrinx. Yes, I was scared at the thought of surgery, but what scared me more was the pain everytime I sneezed or coughed. I would sometimes black out for a few seconds. I thought what if I were driving and this happened? I also have permanent nerve damage in my right arm and hand from waiting so long to have something done. As for the chiropractor, well, I just hope he does more good than harm. Just my thoughts though. Good luck and God Bless you. Carol South Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2002 Report Share Posted April 2, 2002 In a message dated 4/1/2002 4:27:23 PM Pacific Standard Time, musstdy@... writes: << He determined that the course of action should be first Intense Physical Theropy due to my posture. Then if that didn't improve things we would address the decompression surgery. >> Hi: I also have severe headaches. My neuro suggested PT for posture issues. I struggled with learning where my feet were in relationship to my shoulders without looking at them. After 4 months of intensive (3 times a wk) PT I was lighter in the wallet, but no further along with correcting my posture. Shortly after this I read a list of symptoms often reported with Chiari, one of them was posture and balance problems. On April 17th I will be undergoing the surgery at the Chiari Center in NY. Hope this helps. D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2004 Report Share Posted August 17, 2004 Hi Ginny, Welcome to the group. e are a very good and caring group of people on this list. It sure seems that we have most people from Ma. We also have a chat every weekday on AOL IM> I hope you will join us. All you have to do is send me your IM name and I will add it to the list. Then when I am signed on if you are on I can invite you to the chat room. We have it at 10 AM Monday through Friday, or at least we try to have one. If there are not three people on that day I will not start the chat up. I look forward to you joining us soon. Felice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Hi Jim Have a welcome from across the pond, though I'm sorry you've had to find us. You have given us a wealth of info about yourself, good on you for being able to carry on with your life. I am also in awe of any parent who adopts children. Although I'm a mother, I'm not sure that I'd be able to bring up someone elses children with the same amount of unconditional love. I think it takes a very special person and I applaud you. I look forward to reading your posts and how you get on with the support group. Love Ze (38) Dermatomyositis, PF etc, for years, PH 2008>> Hi, I am new to this group and would like to introduce myself. My > name is Jim and I live in Junction City, KS which is 120 > miles west of Kansas City along I-70. We are right next to Ft. > Riley. I am 56 years old, been married for almost 34 years and have 6 > children. My wife and I had 2 biological daughters and then adopted > a family of 4 kids - 2 boys and 2 girls. At the time of adoption > they were 5,7,8,9.> > Three years ago yesterday, one of my adopted daughters passed away > from Hepatitus C she contracted sometime during her first year of > life. She was 26 yrs old. All the rest of my kids are from 26 to 32.> > I was diagnosed at the Mayo Clinic with IPF AND Sarcoidosis in > September 2000, a month after my brother passed away from IPF. He had > lived 10 years from the time of diagnosis and was number 1 on the > lung transplant list at Mayo Clinic when his right lung collapsed. > They found that he had holes in his lungs. After re-inflating it and > being in the hospital from April to June, he was released to only > have it collapse again in July and then pass away in August,2000. > We have not been able to establish any environmental cause of his or > my IPF and no other family member has any signs of it. They diagnosed > my diseases with xrays, blood work, PFTs and an Open Lung Biopsy.I > have two distinct lung diseases...how fun!!!> > I was started initially on the dreaded prednisone with all of it's > side effects. Eventually 9 months later, I was phased off of > prednisone and onto Imuran. It seemed to keep my status stable > and "steady". In 2005, the Imuran seemed to stop working and they > swiched me back to prednisone for a few months and then onto > Cellcept - an anti-rejection med for post-transplant patients. I am > currently on 2000 mg a day and am stable - although I have gradually > had to have more and more o2 to function. I have had to be > hospitalized for pneumonia and/or congestive heart failure in the > last 8 years. MY x-rays and CT scans don't show an enormous growth of > fibotic tissue but my symptoms have become worse until I am on 6 lpm > of o2 and that doesn't keep me from getting out of breath when I > walk. It just makes it bearable.> > I am still working as a School Social Worker full-time, carrying and > dragging my o2 along with me from building to building as I work in 3 > different schools. (I laughed in 2000 when my Mayo CLinic doctor > suggested that I stay away from people who are sick and large > crowds. I am exposed to 1,000 kids a week and whoever they are > exposed to as well.) I also teach parenting and fatherhood classes > in the evenings. > > Of course, I am exhausted a lot - who isn't these days - and try to > get my rest but I have - how do they put it..."miles to go before I > sleep". I am thinking that this might be my last school year to work > as I am not sure how I can make it if I keep getting worse. > > My attitude about my disease is positive although it wouldn't have > been my choice to get it. Ha! > > I am sure I will have other questions to ask about later on but the > main question I am dealing with is when and how to tell the "public" > that I have IPF. Now that may sound weird, but I have not told the > people I work with about having IPF. They obviously know I have a > problem when I have been on o2 24/7 for the past 3 years. They know I > have Sarcoidosis which they understand has only a 10% mortally rate > but only a handful of close friends and of course my family, know > about the IPF. You might ask why I haven't told anyone and the reason > is that I didn't want them to treat me differently and I do not trust > one of my supervisors who has a lot of control over where I work, > etc. I have been concerned that if he knows the extent of my problem, > he may start limiting what I can do based on HIS idea of what I > need ...not mine. Also, our HR department has become very strict in > the past few years about sticking strictly to regulations no matter > what the situation. I didn't and don't want them to control what I > do either.> > My problem is that I feel that I may not be able to work much past > this school year and I thought I should reveal my situation to my co-> workers now and use my situation to inform others about IPF. I would > like to start a local IPF/Lung disease support group, as we don't > have one within 100 miles. I can't do that without people knowing > what I have as our community is small and the grapevine works VERY > well. As a result of the parenting classes I teach and my public > speaking in the community, I am known in a broad circle of > interconnecting groups. It would be a matter of a week before the > word would spread. > > What are your thoughts on my situation? Should I tell them at the > beginning of the school year or wait until I actually have to quit > working? If I wait until then, I may not have the energy or "time" > to start the support group.> > > Jim> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Hi Jim Have a welcome from across the pond, though I'm sorry you've had to find us. You have given us a wealth of info about yourself, good on you for being able to carry on with your life. I am also in awe of any parent who adopts children. Although I'm a mother, I'm not sure that I'd be able to bring up someone elses children with the same amount of unconditional love. I think it takes a very special person and I applaud you. I look forward to reading your posts and how you get on with the support group. Love Ze (38) Dermatomyositis, PF etc, for years, PH 2008>> Hi, I am new to this group and would like to introduce myself. My > name is Jim and I live in Junction City, KS which is 120 > miles west of Kansas City along I-70. We are right next to Ft. > Riley. I am 56 years old, been married for almost 34 years and have 6 > children. My wife and I had 2 biological daughters and then adopted > a family of 4 kids - 2 boys and 2 girls. At the time of adoption > they were 5,7,8,9.> > Three years ago yesterday, one of my adopted daughters passed away > from Hepatitus C she contracted sometime during her first year of > life. She was 26 yrs old. All the rest of my kids are from 26 to 32.> > I was diagnosed at the Mayo Clinic with IPF AND Sarcoidosis in > September 2000, a month after my brother passed away from IPF. He had > lived 10 years from the time of diagnosis and was number 1 on the > lung transplant list at Mayo Clinic when his right lung collapsed. > They found that he had holes in his lungs. After re-inflating it and > being in the hospital from April to June, he was released to only > have it collapse again in July and then pass away in August,2000. > We have not been able to establish any environmental cause of his or > my IPF and no other family member has any signs of it. They diagnosed > my diseases with xrays, blood work, PFTs and an Open Lung Biopsy.I > have two distinct lung diseases...how fun!!!> > I was started initially on the dreaded prednisone with all of it's > side effects. Eventually 9 months later, I was phased off of > prednisone and onto Imuran. It seemed to keep my status stable > and "steady". In 2005, the Imuran seemed to stop working and they > swiched me back to prednisone for a few months and then onto > Cellcept - an anti-rejection med for post-transplant patients. I am > currently on 2000 mg a day and am stable - although I have gradually > had to have more and more o2 to function. I have had to be > hospitalized for pneumonia and/or congestive heart failure in the > last 8 years. MY x-rays and CT scans don't show an enormous growth of > fibotic tissue but my symptoms have become worse until I am on 6 lpm > of o2 and that doesn't keep me from getting out of breath when I > walk. It just makes it bearable.> > I am still working as a School Social Worker full-time, carrying and > dragging my o2 along with me from building to building as I work in 3 > different schools. (I laughed in 2000 when my Mayo CLinic doctor > suggested that I stay away from people who are sick and large > crowds. I am exposed to 1,000 kids a week and whoever they are > exposed to as well.) I also teach parenting and fatherhood classes > in the evenings. > > Of course, I am exhausted a lot - who isn't these days - and try to > get my rest but I have - how do they put it..."miles to go before I > sleep". I am thinking that this might be my last school year to work > as I am not sure how I can make it if I keep getting worse. > > My attitude about my disease is positive although it wouldn't have > been my choice to get it. Ha! > > I am sure I will have other questions to ask about later on but the > main question I am dealing with is when and how to tell the "public" > that I have IPF. Now that may sound weird, but I have not told the > people I work with about having IPF. They obviously know I have a > problem when I have been on o2 24/7 for the past 3 years. They know I > have Sarcoidosis which they understand has only a 10% mortally rate > but only a handful of close friends and of course my family, know > about the IPF. You might ask why I haven't told anyone and the reason > is that I didn't want them to treat me differently and I do not trust > one of my supervisors who has a lot of control over where I work, > etc. I have been concerned that if he knows the extent of my problem, > he may start limiting what I can do based on HIS idea of what I > need ...not mine. Also, our HR department has become very strict in > the past few years about sticking strictly to regulations no matter > what the situation. I didn't and don't want them to control what I > do either.> > My problem is that I feel that I may not be able to work much past > this school year and I thought I should reveal my situation to my co-> workers now and use my situation to inform others about IPF. I would > like to start a local IPF/Lung disease support group, as we don't > have one within 100 miles. I can't do that without people knowing > what I have as our community is small and the grapevine works VERY > well. As a result of the parenting classes I teach and my public > speaking in the community, I am known in a broad circle of > interconnecting groups. It would be a matter of a week before the > word would spread. > > What are your thoughts on my situation? Should I tell them at the > beginning of the school year or wait until I actually have to quit > working? If I wait until then, I may not have the energy or "time" > to start the support group.> > > Jim> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Hi Jim Have a welcome from across the pond, though I'm sorry you've had to find us. You have given us a wealth of info about yourself, good on you for being able to carry on with your life. I am also in awe of any parent who adopts children. Although I'm a mother, I'm not sure that I'd be able to bring up someone elses children with the same amount of unconditional love. I think it takes a very special person and I applaud you. I look forward to reading your posts and how you get on with the support group. Love Ze (38) Dermatomyositis, PF etc, for years, PH 2008>> Hi, I am new to this group and would like to introduce myself. My > name is Jim and I live in Junction City, KS which is 120 > miles west of Kansas City along I-70. We are right next to Ft. > Riley. I am 56 years old, been married for almost 34 years and have 6 > children. My wife and I had 2 biological daughters and then adopted > a family of 4 kids - 2 boys and 2 girls. At the time of adoption > they were 5,7,8,9.> > Three years ago yesterday, one of my adopted daughters passed away > from Hepatitus C she contracted sometime during her first year of > life. She was 26 yrs old. All the rest of my kids are from 26 to 32.> > I was diagnosed at the Mayo Clinic with IPF AND Sarcoidosis in > September 2000, a month after my brother passed away from IPF. He had > lived 10 years from the time of diagnosis and was number 1 on the > lung transplant list at Mayo Clinic when his right lung collapsed. > They found that he had holes in his lungs. After re-inflating it and > being in the hospital from April to June, he was released to only > have it collapse again in July and then pass away in August,2000. > We have not been able to establish any environmental cause of his or > my IPF and no other family member has any signs of it. They diagnosed > my diseases with xrays, blood work, PFTs and an Open Lung Biopsy.I > have two distinct lung diseases...how fun!!!> > I was started initially on the dreaded prednisone with all of it's > side effects. Eventually 9 months later, I was phased off of > prednisone and onto Imuran. It seemed to keep my status stable > and "steady". In 2005, the Imuran seemed to stop working and they > swiched me back to prednisone for a few months and then onto > Cellcept - an anti-rejection med for post-transplant patients. I am > currently on 2000 mg a day and am stable - although I have gradually > had to have more and more o2 to function. I have had to be > hospitalized for pneumonia and/or congestive heart failure in the > last 8 years. MY x-rays and CT scans don't show an enormous growth of > fibotic tissue but my symptoms have become worse until I am on 6 lpm > of o2 and that doesn't keep me from getting out of breath when I > walk. It just makes it bearable.> > I am still working as a School Social Worker full-time, carrying and > dragging my o2 along with me from building to building as I work in 3 > different schools. (I laughed in 2000 when my Mayo CLinic doctor > suggested that I stay away from people who are sick and large > crowds. I am exposed to 1,000 kids a week and whoever they are > exposed to as well.) I also teach parenting and fatherhood classes > in the evenings. > > Of course, I am exhausted a lot - who isn't these days - and try to > get my rest but I have - how do they put it..."miles to go before I > sleep". I am thinking that this might be my last school year to work > as I am not sure how I can make it if I keep getting worse. > > My attitude about my disease is positive although it wouldn't have > been my choice to get it. Ha! > > I am sure I will have other questions to ask about later on but the > main question I am dealing with is when and how to tell the "public" > that I have IPF. Now that may sound weird, but I have not told the > people I work with about having IPF. They obviously know I have a > problem when I have been on o2 24/7 for the past 3 years. They know I > have Sarcoidosis which they understand has only a 10% mortally rate > but only a handful of close friends and of course my family, know > about the IPF. You might ask why I haven't told anyone and the reason > is that I didn't want them to treat me differently and I do not trust > one of my supervisors who has a lot of control over where I work, > etc. I have been concerned that if he knows the extent of my problem, > he may start limiting what I can do based on HIS idea of what I > need ...not mine. Also, our HR department has become very strict in > the past few years about sticking strictly to regulations no matter > what the situation. I didn't and don't want them to control what I > do either.> > My problem is that I feel that I may not be able to work much past > this school year and I thought I should reveal my situation to my co-> workers now and use my situation to inform others about IPF. I would > like to start a local IPF/Lung disease support group, as we don't > have one within 100 miles. I can't do that without people knowing > what I have as our community is small and the grapevine works VERY > well. As a result of the parenting classes I teach and my public > speaking in the community, I am known in a broad circle of > interconnecting groups. It would be a matter of a week before the > word would spread. > > What are your thoughts on my situation? Should I tell them at the > beginning of the school year or wait until I actually have to quit > working? If I wait until then, I may not have the energy or "time" > to start the support group.> > > Jim> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Hello Jim, Like to add my welcome to our group. I hope you'll find that we are a wonderful group of people all trying to LIVE with the diagnosis of pulmonary fibrosis to the best of our ability. I'd like to offer my condolences on the loss of your daughter three years ago to hepatitus. That must have been rough. She was so young. As far as the answers to your questions...it's hard to know when to tell folks especially in your case where it could affect your job. But if you are truly feeling that this may be the last school year, maybe now is time. I guess only you can be the judge of that. I let my work know I had pulmonary fibrosis and was let go three months later. Nice, huh? I was under the mistaken impression that we were like family. A man had been diagnosed with pf a year before I was. They knew what was coming. But, it turned out ok because I ended up working for the Pulmonary Fibrosis Foundation which as been a God send. I'm going to send you a " how to start a support group " to your private email. Just in case you end up starting a group. If you do, please let me know and I can put it on our web page as well as send out notices to folks in your area. I've been involved with a support group for almost 4 years now and find the experience very rewarding. We learn so much from each other because we are walking the walk every day. Glad you found this group and I hope we can be of some assistance. Leanne uip 1/03 Illinois > > Hi, I am new to this group and would like to introduce myself. My > name is Jim and I live in Junction City, KS which is 120 > miles west of Kansas City along I-70. We are right next to Ft. > Riley. I am 56 years old, been married for almost 34 years and have 6 > children. My wife and I had 2 biological daughters and then adopted > a family of 4 kids - 2 boys and 2 girls. At the time of adoption > they were 5,7,8,9. > > Three years ago yesterday, one of my adopted daughters passed away > from Hepatitus C she contracted sometime during her first year of > life. She was 26 yrs old. All the rest of my kids are from 26 to 32. > > I was diagnosed at the Mayo Clinic with IPF AND Sarcoidosis in > September 2000, a month after my brother passed away from IPF. He had > lived 10 years from the time of diagnosis and was number 1 on the > lung transplant list at Mayo Clinic when his right lung collapsed. > They found that he had holes in his lungs. After re-inflating it and > being in the hospital from April to June, he was released to only > have it collapse again in July and then pass away in August,2000. > We have not been able to establish any environmental cause of his or > my IPF and no other family member has any signs of it. They diagnosed > my diseases with xrays, blood work, PFTs and an Open Lung Biopsy.I > have two distinct lung diseases...how fun!!! > > I was started initially on the dreaded prednisone with all of it's > side effects. Eventually 9 months later, I was phased off of > prednisone and onto Imuran. It seemed to keep my status stable > and " steady " . In 2005, the Imuran seemed to stop working and they > swiched me back to prednisone for a few months and then onto > Cellcept - an anti-rejection med for post-transplant patients. I am > currently on 2000 mg a day and am stable - although I have gradually > had to have more and more o2 to function. I have had to be > hospitalized for pneumonia and/or congestive heart failure in the > last 8 years. MY x-rays and CT scans don't show an enormous growth of > fibotic tissue but my symptoms have become worse until I am on 6 lpm > of o2 and that doesn't keep me from getting out of breath when I > walk. It just makes it bearable. > > I am still working as a School Social Worker full-time, carrying and > dragging my o2 along with me from building to building as I work in 3 > different schools. (I laughed in 2000 when my Mayo CLinic doctor > suggested that I stay away from people who are sick and large > crowds. I am exposed to 1,000 kids a week and whoever they are > exposed to as well.) I also teach parenting and fatherhood classes > in the evenings. > > Of course, I am exhausted a lot - who isn't these days - and try to > get my rest but I have - how do they put it... " miles to go before I > sleep " . I am thinking that this might be my last school year to work > as I am not sure how I can make it if I keep getting worse. > > My attitude about my disease is positive although it wouldn't have > been my choice to get it. Ha! > > I am sure I will have other questions to ask about later on but the > main question I am dealing with is when and how to tell the " public " > that I have IPF. Now that may sound weird, but I have not told the > people I work with about having IPF. They obviously know I have a > problem when I have been on o2 24/7 for the past 3 years. They know I > have Sarcoidosis which they understand has only a 10% mortally rate > but only a handful of close friends and of course my family, know > about the IPF. You might ask why I haven't told anyone and the reason > is that I didn't want them to treat me differently and I do not trust > one of my supervisors who has a lot of control over where I work, > etc. I have been concerned that if he knows the extent of my problem, > he may start limiting what I can do based on HIS idea of what I > need ...not mine. Also, our HR department has become very strict in > the past few years about sticking strictly to regulations no matter > what the situation. I didn't and don't want them to control what I > do either. > > My problem is that I feel that I may not be able to work much past > this school year and I thought I should reveal my situation to my co- > workers now and use my situation to inform others about IPF. I would > like to start a local IPF/Lung disease support group, as we don't > have one within 100 miles. I can't do that without people knowing > what I have as our community is small and the grapevine works VERY > well. As a result of the parenting classes I teach and my public > speaking in the community, I am known in a broad circle of > interconnecting groups. It would be a matter of a week before the > word would spread. > > What are your thoughts on my situation? Should I tell them at the > beginning of the school year or wait until I actually have to quit > working? If I wait until then, I may not have the energy or " time " > to start the support group. > > > Jim > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 hi Jim, I can't answer your question Sorry,I just wanted to send you a nice welcome.I am new here also, and I have found the people very nice and supportive. i know the public can be very hard on us unnormal people.it is like we are freeks.going around with leashes and tubes comeing out our nose. I wish you well. Ruth > > > > Hi, I am new to this group and would like to introduce myself. My > > name is Jim and I live in Junction City, KS which is 120 > > miles west of Kansas City along I-70. We are right next to Ft. > > Riley. I am 56 years old, been married for almost 34 years and > have 6 > > children. My wife and I had 2 biological daughters and then > adopted > > a family of 4 kids - 2 boys and 2 girls. At the time of adoption > > they were 5,7,8,9. > > > > Three years ago yesterday, one of my adopted daughters passed away > > from Hepatitus C she contracted sometime during her first year of > > life. She was 26 yrs old. All the rest of my kids are from 26 to > 32. > > > > I was diagnosed at the Mayo Clinic with IPF AND Sarcoidosis in > > September 2000, a month after my brother passed away from IPF. He > had > > lived 10 years from the time of diagnosis and was number 1 on the > > lung transplant list at Mayo Clinic when his right lung > collapsed. > > They found that he had holes in his lungs. After re-inflating it > and > > being in the hospital from April to June, he was released to only > > have it collapse again in July and then pass away in August,2000. > > We have not been able to establish any environmental cause of his > or > > my IPF and no other family member has any signs of it. They > diagnosed > > my diseases with xrays, blood work, PFTs and an Open Lung Biopsy.I > > have two distinct lung diseases...how fun!!! > > > > I was started initially on the dreaded prednisone with all of it's > > side effects. Eventually 9 months later, I was phased off of > > prednisone and onto Imuran. It seemed to keep my status stable > > and " steady " . In 2005, the Imuran seemed to stop working and they > > swiched me back to prednisone for a few months and then onto > > Cellcept - an anti-rejection med for post-transplant patients. I > am > > currently on 2000 mg a day and am stable - although I have > gradually > > had to have more and more o2 to function. I have had to be > > hospitalized for pneumonia and/or congestive heart failure in the > > last 8 years. MY x-rays and CT scans don't show an enormous growth > of > > fibotic tissue but my symptoms have become worse until I am on 6 > lpm > > of o2 and that doesn't keep me from getting out of breath when I > > walk. It just makes it bearable. > > > > I am still working as a School Social Worker full-time, carrying > and > > dragging my o2 along with me from building to building as I work > in 3 > > different schools. (I laughed in 2000 when my Mayo CLinic doctor > > suggested that I stay away from people who are sick and large > > crowds. I am exposed to 1,000 kids a week and whoever they are > > exposed to as well.) I also teach parenting and fatherhood > classes > > in the evenings. > > > > Of course, I am exhausted a lot - who isn't these days - and try > to > > get my rest but I have - how do they put it... " miles to go before > I > > sleep " . I am thinking that this might be my last school year to > work > > as I am not sure how I can make it if I keep getting worse. > > > > My attitude about my disease is positive although it wouldn't have > > been my choice to get it. Ha! > > > > I am sure I will have other questions to ask about later on but > the > > main question I am dealing with is when and how to tell > the " public " > > that I have IPF. Now that may sound weird, but I have not told > the > > people I work with about having IPF. They obviously know I have a > > problem when I have been on o2 24/7 for the past 3 years. They > know I > > have Sarcoidosis which they understand has only a 10% mortally > rate > > but only a handful of close friends and of course my family, know > > about the IPF. You might ask why I haven't told anyone and the > reason > > is that I didn't want them to treat me differently and I do not > trust > > one of my supervisors who has a lot of control over where I work, > > etc. I have been concerned that if he knows the extent of my > problem, > > he may start limiting what I can do based on HIS idea of what I > > need ...not mine. Also, our HR department has become very strict > in > > the past few years about sticking strictly to regulations no > matter > > what the situation. I didn't and don't want them to control what > I > > do either. > > > > My problem is that I feel that I may not be able to work much past > > this school year and I thought I should reveal my situation to my > co- > > workers now and use my situation to inform others about IPF. I > would > > like to start a local IPF/Lung disease support group, as we don't > > have one within 100 miles. I can't do that without people knowing > > what I have as our community is small and the grapevine works VERY > > well. As a result of the parenting classes I teach and my public > > speaking in the community, I am known in a broad circle of > > interconnecting groups. It would be a matter of a week before the > > word would spread. > > > > What are your thoughts on my situation? Should I tell them at the > > beginning of the school year or wait until I actually have to quit > > working? If I wait until then, I may not have the energy > or " time " > > to start the support group. > > > > > > Jim > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Welcome to the club, Jim. I've had his disease only three years and so far have no limitations on what I do. But I am also 79 and so I plan to retire from work before the end of the year. In my case, I don't have your worries becuase I own the business. Everyone knows I have IPF but because of my lack of pjhysical evidence they don't really know how vicious it is. So I don't have your problem and I don't know any solution to suggest that you haven't already posed. In your situation, I don't think I would reveal my health problem until I was ready to finish working. If that is to be at the end of the next school year, I would think you would have plenty of planning to do for a support group and announce those plans at the same time you announce your retirement. Because I have had little experience with the disease, I'm not much help in answering medical questions. During my short time as a member of this group, I have learned that there is someone, and sometimes, several, who can answer almost any question you might have. One any other subject if I don't have an answer, I can make one up. No charge. Jack 79/UIP - IPF/06/05 - Maine New To Group Hi, I am new to this group and would like to introduce myself. My name is Jim and I live in Junction City, KS which is 120 miles west of Kansas City along I-70. We are right next to Ft. Riley. I am 56 years old, been married for almost 34 years and have 6 children. My wife and I had 2 biological daughters and then adopted a family of 4 kids - 2 boys and 2 girls. At the time of adoption they were 5,7,8,9.Three years ago yesterday, one of my adopted daughters passed away from Hepatitus C she contracted sometime during her first year of life. She was 26 yrs old. All the rest of my kids are from 26 to 32.I was diagnosed at the Mayo Clinic with IPF AND Sarcoidosis in September 2000, a month after my brother passed away from IPF. He had lived 10 years from the time of diagnosis and was number 1 on the lung transplant list at Mayo Clinic when his right lung collapsed. They found that he had holes in his lungs. After re-inflating it and being in the hospital from April to June, he was released to only have it collapse again in July and then pass away in August,2000. We have not been able to establish any environmental cause of his or my IPF and no other family member has any signs of it. They diagnosed my diseases with xrays, blood work, PFTs and an Open Lung Biopsy.I have two distinct lung diseases...how fun!!!I was started initially on the dreaded prednisone with all of it's side effects. Eventually 9 months later, I was phased off of prednisone and onto Imuran. It seemed to keep my status stable and "steady". In 2005, the Imuran seemed to stop working and they swiched me back to prednisone for a few months and then onto Cellcept - an anti-rejection med for post-transplant patients. I am currently on 2000 mg a day and am stable - although I have gradually had to have more and more o2 to function. I have had to be hospitalized for pneumonia and/or congestive heart failure in the last 8 years. MY x-rays and CT scans don't show an enormous growth of fibotic tissue but my symptoms have become worse until I am on 6 lpm of o2 and that doesn't keep me from getting out of breath when I walk. It just makes it bearable.I am still working as a School Social Worker full-time, carrying and dragging my o2 along with me from building to building as I work in 3 different schools. (I laughed in 2000 when my Mayo CLinic doctor suggested that I stay away from people who are sick and large crowds. I am exposed to 1,000 kids a week and whoever they are exposed to as well.) I also teach parenting and fatherhood classes in the evenings. Of course, I am exhausted a lot - who isn't these days - and try to get my rest but I have - how do they put it..."miles to go before I sleep". I am thinking that this might be my last school year to work as I am not sure how I can make it if I keep getting worse. My attitude about my disease is positive although it wouldn't have been my choice to get it. Ha! I am sure I will have other questions to ask about later on but the main question I am dealing with is when and how to tell the "public" that I have IPF. Now that may sound weird, but I have not told the people I work with about having IPF. They obviously know I have a problem when I have been on o2 24/7 for the past 3 years. They know I have Sarcoidosis which they understand has only a 10% mortally rate but only a handful of close friends and of course my family, know about the IPF. You might ask why I haven't told anyone and the reason is that I didn't want them to treat me differently and I do not trust one of my supervisors who has a lot of control over where I work, etc. I have been concerned that if he knows the extent of my problem, he may start limiting what I can do based on HIS idea of what I need ...not mine. Also, our HR department has become very strict in the past few years about sticking strictly to regulations no matter what the situation. I didn't and don't want them to control what I do either.My problem is that I feel that I may not be able to work much past this school year and I thought I should reveal my situation to my co-workers now and use my situation to inform others about IPF. I would like to start a local IPF/Lung disease support group, as we don't have one within 100 miles. I can't do that without people knowing what I have as our community is small and the grapevine works VERY well. As a result of the parenting classes I teach and my public speaking in the community, I am known in a broad circle of interconnecting groups. It would be a matter of a week before the word would spread. What are your thoughts on my situation? Should I tell them at the beginning of the school year or wait until I actually have to quit working? If I wait until then, I may not have the energy or "time" to start the support group.Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Hi Jim, And, welcome to our group. This disease and the variances in diagnosis and longevity just amaze me. That you are still working after 8 years with IPF and Sarcoidosis is unbelievable. It shows a real zeal for life and normalcy on your part. I do believe that if we get our diagnosis, throw that 02 on our shoulder and go about living, we make it longer than if we give up and give in from the very first. I have been at this for 11 years....since biopsy. I always stayed busy and lived my life in a fairly normal way until the last year or so. I am more comprimised now due to ongoing complications. I admire your life, that you gave yourself to those four children. I don't know many who could do that. You have to feel good that you contributed to those young lives, even the one that was lost. I'm glad that you landed here. Hopefully, we can learn from you and you from us. I know the newly diagnosed with both your diseases who are being told "1 year", will gain hope. There are doctors out there who immedicatly suck the hope right out of a newly diagnosed patient. Again, welcome. 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, I am new to this group and would like to introduce myself. My > name is Jim and I live in Junction City, KS which is 120 > miles west of Kansas City along I-70. We are right next to Ft. > Riley. I am 56 years old, been married for almost 34 years and have 6 > children. My wife and I had 2 biological daughters and then adopted > a family of 4 kids - 2 boys and 2 girls. At the time of adoption > they were 5,7,8,9.> > Three years ago yesterday, one of my adopted daughters passed away > from Hepatitus C she contracted sometime during her first year of > life. She was 26 yrs old. All the rest of my kids are from 26 to 32.> > I was diagnosed at the Mayo Clinic with IPF AND Sarcoidosis in > September 2000, a month after my brother passed away from IPF. He had > lived 10 years from the time of diagnosis and was number 1 on the > lung transplant list at Mayo Clinic when his right lung collapsed. > They found that he had holes in his lungs. After re-inflating it and > being in the hospital from April to June, he was released to only > have it collapse again in July and then pass away in August,2000. > We have not been able to establish any environmental cause of his or > my IPF and no other family member has any signs of it. They diagnosed > my diseases with xrays, blood work, PFTs and an Open Lung Biopsy.I > have two distinct lung diseases...how fun!!!> > I was started initially on the dreaded prednisone with all of it's > side effects. Eventually 9 months later, I was phased off of > prednisone and onto Imuran. It seemed to keep my status stable > and "steady". In 2005, the Imuran seemed to stop working and they > swiched me back to prednisone for a few months and then onto > Cellcept - an anti-rejection med for post-transplant patients. I am > currently on 2000 mg a day and am stable - although I have gradually > had to have more and more o2 to function. I have had to be > hospitalized for pneumonia and/or congestive heart failure in the > last 8 years. MY x-rays and CT scans don't show an enormous growth of > fibotic tissue but my symptoms have become worse until I am on 6 lpm > of o2 and that doesn't keep me from getting out of breath when I > walk. It just makes it bearable.> > I am still working as a School Social Worker full-time, carrying and > dragging my o2 along with me from building to building as I work in 3 > different schools. (I laughed in 2000 when my Mayo CLinic doctor > suggested that I stay away from people who are sick and large > crowds. I am exposed to 1,000 kids a week and whoever they are > exposed to as well.) I also teach parenting and fatherhood classes > in the evenings. > > Of course, I am exhausted a lot - who isn't these days - and try to > get my rest but I have - how do they put it..."miles to go before I > sleep". I am thinking that this might be my last school year to work > as I am not sure how I can make it if I keep getting worse. > > My attitude about my disease is positive although it wouldn't have > been my choice to get it. Ha! > > I am sure I will have other questions to ask about later on but the > main question I am dealing with is when and how to tell the "public" > that I have IPF. Now that may sound weird, but I have not told the > people I work with about having IPF. They obviously know I have a > problem when I have been on o2 24/7 for the past 3 years. They know I > have Sarcoidosis which they understand has only a 10% mortally rate > but only a handful of close friends and of course my family, know > about the IPF. You might ask why I haven't told anyone and the reason > is that I didn't want them to treat me differently and I do not trust > one of my supervisors who has a lot of control over where I work, > etc. I have been concerned that if he knows the extent of my problem, > he may start limiting what I can do based on HIS idea of what I > need ...not mine. Also, our HR department has become very strict in > the past few years about sticking strictly to regulations no matter > what the situation. I didn't and don't want them to control what I > do either.> > My problem is that I feel that I may not be able to work much past > this school year and I thought I should reveal my situation to my co-> workers now and use my situation to inform others about IPF. I would > like to start a local IPF/Lung disease support group, as we don't > have one within 100 miles. I can't do that without people knowing > what I have as our community is small and the grapevine works VERY > well. As a result of the parenting classes I teach and my public > speaking in the community, I am known in a broad circle of > interconnecting groups. It would be a matter of a week before the > word would spread. > > What are your thoughts on my situation? Should I tell them at the > beginning of the school year or wait until I actually have to quit > working? If I wait until then, I may not have the energy or "time" > to start the support group.> > > Jim> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Hi Jim, And, welcome to our group. This disease and the variances in diagnosis and longevity just amaze me. That you are still working after 8 years with IPF and Sarcoidosis is unbelievable. It shows a real zeal for life and normalcy on your part. I do believe that if we get our diagnosis, throw that 02 on our shoulder and go about living, we make it longer than if we give up and give in from the very first. I have been at this for 11 years....since biopsy. I always stayed busy and lived my life in a fairly normal way until the last year or so. I am more comprimised now due to ongoing complications. I admire your life, that you gave yourself to those four children. I don't know many who could do that. You have to feel good that you contributed to those young lives, even the one that was lost. I'm glad that you landed here. Hopefully, we can learn from you and you from us. I know the newly diagnosed with both your diseases who are being told "1 year", will gain hope. There are doctors out there who immedicatly suck the hope right out of a newly diagnosed patient. Again, welcome. 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, I am new to this group and would like to introduce myself. My > name is Jim and I live in Junction City, KS which is 120 > miles west of Kansas City along I-70. We are right next to Ft. > Riley. I am 56 years old, been married for almost 34 years and have 6 > children. My wife and I had 2 biological daughters and then adopted > a family of 4 kids - 2 boys and 2 girls. At the time of adoption > they were 5,7,8,9.> > Three years ago yesterday, one of my adopted daughters passed away > from Hepatitus C she contracted sometime during her first year of > life. She was 26 yrs old. All the rest of my kids are from 26 to 32.> > I was diagnosed at the Mayo Clinic with IPF AND Sarcoidosis in > September 2000, a month after my brother passed away from IPF. He had > lived 10 years from the time of diagnosis and was number 1 on the > lung transplant list at Mayo Clinic when his right lung collapsed. > They found that he had holes in his lungs. After re-inflating it and > being in the hospital from April to June, he was released to only > have it collapse again in July and then pass away in August,2000. > We have not been able to establish any environmental cause of his or > my IPF and no other family member has any signs of it. They diagnosed > my diseases with xrays, blood work, PFTs and an Open Lung Biopsy.I > have two distinct lung diseases...how fun!!!> > I was started initially on the dreaded prednisone with all of it's > side effects. Eventually 9 months later, I was phased off of > prednisone and onto Imuran. It seemed to keep my status stable > and "steady". In 2005, the Imuran seemed to stop working and they > swiched me back to prednisone for a few months and then onto > Cellcept - an anti-rejection med for post-transplant patients. I am > currently on 2000 mg a day and am stable - although I have gradually > had to have more and more o2 to function. I have had to be > hospitalized for pneumonia and/or congestive heart failure in the > last 8 years. MY x-rays and CT scans don't show an enormous growth of > fibotic tissue but my symptoms have become worse until I am on 6 lpm > of o2 and that doesn't keep me from getting out of breath when I > walk. It just makes it bearable.> > I am still working as a School Social Worker full-time, carrying and > dragging my o2 along with me from building to building as I work in 3 > different schools. (I laughed in 2000 when my Mayo CLinic doctor > suggested that I stay away from people who are sick and large > crowds. I am exposed to 1,000 kids a week and whoever they are > exposed to as well.) I also teach parenting and fatherhood classes > in the evenings. > > Of course, I am exhausted a lot - who isn't these days - and try to > get my rest but I have - how do they put it..."miles to go before I > sleep". I am thinking that this might be my last school year to work > as I am not sure how I can make it if I keep getting worse. > > My attitude about my disease is positive although it wouldn't have > been my choice to get it. Ha! > > I am sure I will have other questions to ask about later on but the > main question I am dealing with is when and how to tell the "public" > that I have IPF. Now that may sound weird, but I have not told the > people I work with about having IPF. They obviously know I have a > problem when I have been on o2 24/7 for the past 3 years. They know I > have Sarcoidosis which they understand has only a 10% mortally rate > but only a handful of close friends and of course my family, know > about the IPF. You might ask why I haven't told anyone and the reason > is that I didn't want them to treat me differently and I do not trust > one of my supervisors who has a lot of control over where I work, > etc. I have been concerned that if he knows the extent of my problem, > he may start limiting what I can do based on HIS idea of what I > need ...not mine. Also, our HR department has become very strict in > the past few years about sticking strictly to regulations no matter > what the situation. I didn't and don't want them to control what I > do either.> > My problem is that I feel that I may not be able to work much past > this school year and I thought I should reveal my situation to my co-> workers now and use my situation to inform others about IPF. I would > like to start a local IPF/Lung disease support group, as we don't > have one within 100 miles. I can't do that without people knowing > what I have as our community is small and the grapevine works VERY > well. As a result of the parenting classes I teach and my public > speaking in the community, I am known in a broad circle of > interconnecting groups. It would be a matter of a week before the > word would spread. > > What are your thoughts on my situation? Should I tell them at the > beginning of the school year or wait until I actually have to quit > working? If I wait until then, I may not have the energy or "time" > to start the support group.> > > Jim> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 >welcome to the crowd Jim, sorry you have to be here but glad you found us. My Dad died of pf in 91 and was one of the healthiest person's I knew. He developed a cough and it took them 2 yrs. to figure out what it was. He had never smoked been exposed to any chemicals so who knows how this monster works. I was dx in10/04 but know I had it longer because of the clubbing. My older sister was dx with copd,but got biopsy 2 monthes after me and they said it was pf also. Is it inhereted? Who knows, I try not to think about this monster I've been on o2 from the day they found it and as long as I can keep moving,even if a turtle could beat me,I refuse to except the how longs,no cures, etc.etc. I truly believe in mind over matter, I just wish my mind worked alittle better.Keep on Keeping on. KathyS54In-until 7-1 then look out Houston I'm coming back > Welcome to the club, Jim. I've had his disease only three years and so far have no limitations on what I do. But I am also 79 and so I plan to retire from work before the end of the year. In my case, I don't have your worries becuase I own the business. Everyone knows I have IPF but because of my lack of pjhysical evidence they don't really know how vicious it is. So I don't have your problem and I don't know any solution to suggest that you haven't already posed. In your situation, I don't think I would reveal my health problem until I was ready to finish working. If that is to be at the end of the next school year, I would think you would have plenty of planning to do for a support group and announce those plans at the same time you announce your retirement. > Because I have had little experience with the disease, I'm not much help in answering medical questions. > During my short time as a member of this group, I have learned that there is someone, and sometimes, several, who can answer almost any question you might have. > One any other subject if I don't have an answer, I can make one up. No charge. > Jack > 79/UIP - IPF/06/05 - Maine > > > New To Group > > > Hi, I am new to this group and would like to introduce myself. My > name is Jim and I live in Junction City, KS which is 120 > miles west of Kansas City along I-70. We are right next to Ft. > Riley. I am 56 years old, been married for almost 34 years and have 6 > children. My wife and I had 2 biological daughters and then adopted > a family of 4 kids - 2 boys and 2 girls. At the time of adoption > they were 5,7,8,9. > > Three years ago yesterday, one of my adopted daughters passed away > from Hepatitus C she contracted sometime during her first year of > life. She was 26 yrs old. All the rest of my kids are from 26 to 32. > > I was diagnosed at the Mayo Clinic with IPF AND Sarcoidosis in > September 2000, a month after my brother passed away from IPF. He had > lived 10 years from the time of diagnosis and was number 1 on the > lung transplant list at Mayo Clinic when his right lung collapsed. > They found that he had holes in his lungs. After re-inflating it and > being in the hospital from April to June, he was released to only > have it collapse again in July and then pass away in August,2000. > We have not been able to establish any environmental cause of his or > my IPF and no other family member has any signs of it. They diagnosed > my diseases with xrays, blood work, PFTs and an Open Lung Biopsy.I > have two distinct lung diseases....how fun!!! > > I was started initially on the dreaded prednisone with all of it's > side effects. Eventually 9 months later, I was phased off of > prednisone and onto Imuran. It seemed to keep my status stable > and " steady " . In 2005, the Imuran seemed to stop working and they > swiched me back to prednisone for a few months and then onto > Cellcept - an anti-rejection med for post-transplant patients. I am > currently on 2000 mg a day and am stable - although I have gradually > had to have more and more o2 to function. I have had to be > hospitalized for pneumonia and/or congestive heart failure in the > last 8 years. MY x-rays and CT scans don't show an enormous growth of > fibotic tissue but my symptoms have become worse until I am on 6 lpm > of o2 and that doesn't keep me from getting out of breath when I > walk. It just makes it bearable. > > I am still working as a School Social Worker full-time, carrying and > dragging my o2 along with me from building to building as I work in 3 > different schools. (I laughed in 2000 when my Mayo CLinic doctor > suggested that I stay away from people who are sick and large > crowds. I am exposed to 1,000 kids a week and whoever they are > exposed to as well.) I also teach parenting and fatherhood classes > in the evenings. > > Of course, I am exhausted a lot - who isn't these days - and try to > get my rest but I have - how do they put it... " miles to go before I > sleep " . I am thinking that this might be my last school year to work > as I am not sure how I can make it if I keep getting worse. > > My attitude about my disease is positive although it wouldn't have > been my choice to get it. Ha! > > I am sure I will have other questions to ask about later on but the > main question I am dealing with is when and how to tell the " public " > that I have IPF. Now that may sound weird, but I have not told the > people I work with about having IPF. They obviously know I have a > problem when I have been on o2 24/7 for the past 3 years. They know I > have Sarcoidosis which they understand has only a 10% mortally rate > but only a handful of close friends and of course my family, know > about the IPF. You might ask why I haven't told anyone and the reason > is that I didn't want them to treat me differently and I do not trust > one of my supervisors who has a lot of control over where I work, > etc. I have been concerned that if he knows the extent of my problem, > he may start limiting what I can do based on HIS idea of what I > need ...not mine. Also, our HR department has become very strict in > the past few years about sticking strictly to regulations no matter > what the situation. I didn't and don't want them to control what I > do either. > > My problem is that I feel that I may not be able to work much past > this school year and I thought I should reveal my situation to my co- > workers now and use my situation to inform others about IPF. I would > like to start a local IPF/Lung disease support group, as we don't > have one within 100 miles. I can't do that without people knowing > what I have as our community is small and the grapevine works VERY > well. As a result of the parenting classes I teach and my public > speaking in the community, I am known in a broad circle of > interconnecting groups. It would be a matter of a week before the > word would spread. > > What are your thoughts on my situation? Should I tell them at the > beginning of the school year or wait until I actually have to quit > working? If I wait until then, I may not have the energy or " time " > to start the support group. > > Jim > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 I loe seeing this blue print.. Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 OD happening  LOVE to see the blue.. Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Hi Jim.... I want to welcome you to our group. I'm always sad when a newbie joins us but I'm glad you are here on this board and I think you will be glad you found us. This board is helpful and caring and there is always someone to answer a question. I know this is hard for your family too. Your question of 'when to tell' is a tough one and I understand your reasons for being hesitant. I think you will know what to do. If it were me, in the situation you describe, I would not tell until later...whenever 'later' may be. I think your current effectiveness is important. Is there someone else who could start the support group and you could attend? Take it one day at a time and maybe in a few weeks/months you will be more clear about these decisions. Glad you're with us. I'll watch for your posts to get to know you better. MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there! New To Group> > > Hi, I am new to this group and would like to introduce myself. My > name is Jim and I live in Junction City, KS which is 120 > miles west of Kansas City along I-70. We are right next to Ft. > Riley. I am 56 years old, been married for almost 34 years and have 6 > children. My wife and I had 2 biological daughters and then adopted > a family of 4 kids - 2 boys and 2 girls. At the time of adoption > they were 5,7,8,9.> > Three years ago yesterday, one of my adopted daughters passed away > from Hepatitus C she contracted sometime during her first year of > life. She was 26 yrs old. All the rest of my kids are from 26 to 32.> > I was diagnosed at the Mayo Clinic with IPF AND Sarcoidosis in > September 2000, a month after my brother passed away from IPF. He had > lived 10 years from the time of diagnosis and was number 1 on the > lung transplant list at Mayo Clinic when his right lung collapsed. > They found that he had holes in his lungs. After re-inflating it and > being in the hospital from April to June, he was released to only > have it collapse again in July and then pass away in August,2000. > We have not been able to establish any environmental cause of his or > my IPF and no other family member has any signs of it. They diagnosed > my diseases with xrays, blood work, PFTs and an Open Lung Biopsy.I > have two distinct lung diseases....how fun!!!> > I was started initially on the dreaded prednisone with all of it's > side effects. Eventually 9 months later, I was phased off of > prednisone and onto Imuran. It seemed to keep my status stable > and "steady". In 2005, the Imuran seemed to stop working and they > swiched me back to prednisone for a few months and then onto > Cellcept - an anti-rejection med for post-transplant patients. I am > currently on 2000 mg a day and am stable - although I have gradually > had to have more and more o2 to function. I have had to be > hospitalized for pneumonia and/or congestive heart failure in the > last 8 years. MY x-rays and CT scans don't show an enormous growth of > fibotic tissue but my symptoms have become worse until I am on 6 lpm > of o2 and that doesn't keep me from getting out of breath when I > walk. It just makes it bearable.> > I am still working as a School Social Worker full-time, carrying and > dragging my o2 along with me from building to building as I work in 3 > different schools. (I laughed in 2000 when my Mayo CLinic doctor > suggested that I stay away from people who are sick and large > crowds. I am exposed to 1,000 kids a week and whoever they are > exposed to as well.) I also teach parenting and fatherhood classes > in the evenings. > > Of course, I am exhausted a lot - who isn't these days - and try to > get my rest but I have - how do they put it..."miles to go before I > sleep". I am thinking that this might be my last school year to work > as I am not sure how I can make it if I keep getting worse. > > My attitude about my disease is positive although it wouldn't have > been my choice to get it. Ha! > > I am sure I will have other questions to ask about later on but the > main question I am dealing with is when and how to tell the "public" > that I have IPF. Now that may sound weird, but I have not told the > people I work with about having IPF. They obviously know I have a > problem when I have been on o2 24/7 for the past 3 years. They know I > have Sarcoidosis which they understand has only a 10% mortally rate > but only a handful of close friends and of course my family, know > about the IPF. You might ask why I haven't told anyone and the reason > is that I didn't want them to treat me differently and I do not trust > one of my supervisors who has a lot of control over where I work, > etc. I have been concerned that if he knows the extent of my problem, > he may start limiting what I can do based on HIS idea of what I > need ...not mine. Also, our HR department has become very strict in > the past few years about sticking strictly to regulations no matter > what the situation. I didn't and don't want them to control what I > do either.> > My problem is that I feel that I may not be able to work much past > this school year and I thought I should reveal my situation to my co-> workers now and use my situation to inform others about IPF. I would > like to start a local IPF/Lung disease support group, as we don't > have one within 100 miles. I can't do that without people knowing > what I have as our community is small and the grapevine works VERY > well. As a result of the parenting classes I teach and my public > speaking in the community, I am known in a broad circle of > interconnecting groups. It would be a matter of a week before the > word would spread. > > What are your thoughts on my situation? Should I tell them at the > beginning of the school year or wait until I actually have to quit > working? If I wait until then, I may not have the energy or "time" > to start the support group.> > Jim> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.