Guest guest Posted January 14, 2007 Report Share Posted January 14, 2007 O. Welcome to our group. Wow, sounds like you have a bucket load of sickness. Both Crohn's and AS are such serious conditions. You must be a very strong person to have been also diagnosed with PF and not go jump off a bridge. I read the other day that PF can be secondary to Crohn's. Do you suppose that is the reason that you have it? Isn't AS also an autoimmune disease? Are they treating you with an immunosuppressant? I have PF secondary to Lupus. My docs started agressively treating the Lupus and it slowed the fibrosis. I am ten years out from diagnosis. Yes, you can send links. I would like to read about the spoon theory. You will find friendship here. You will find understanding. We complain, vent, cry, laugh, share our fears and we pray for one another. Hugs, Joyce PF 1997 Bronchiectasis 2004 Indiana >> Hello to everyone in the Breathe Support Group. I would like to take > this oppurtunity to thank Leanne for allowing me to join your group > and introduce myself. My name is ( obviously ) and I was > diagnosed with IPF in November 2006. I am 50 years old , divorced , > and have been disabled (SSDI) from Crohns Disease and Anklosing > Spondylitis since 1998. I am not a complete stranger to this disease > because my mother , who just turned 80 , was diagnosed with IPF in > November of 2005.> > Unlike myself , she never smoked , and was never exposed to second > hand smoke. I was the only one in the family stupid enough to take up > that nasty habit , but I never smoked around her. Even when she moved > in with me after my father passed away in 2003 I would go outside to > smoke regardless of the weather. > > I also worked for 25 years in a pottery where I am sure I was exposed > to silica and a lot of other industrial pollutants , but she was > always a homemaker, so it is mystifying why she would get it and then > I would be diganosed one year later ; but I know it happens , just > like Crohns , for no apparent reason.> > I want to fill out the profile questionarre that Leanne sent me , but > that was Thursday and I still havent got to it and didnt want to wait > any longer to come in here and say Hello. My purpose for joining is > to hopefully lend support to other members and I may need some myself > from time to time because I am also a caregiver as well . That role > takes a lot of time , and as I am sure everyone with IPF knows it's > not so much the time but the energy or stamina that one has.> > A friend sent me an intersting story called the "Spoon Therory" which > many of you may have heard ; one of the quotations from the story is > "Most people start the day with unlimited amount of possibilities, > and energy to do whatever they desire, especially young people. For > the most part, they do not need to worry about the effects of their > actions." I have learned that with any crohnic disease managing ones > time is essential to getting through the day and having time and > resourses left over to enjoy oneself; but that is not always possible.> > Anyway , I am going to close by extending my hand in friendship and > hoping the fact we are not alone and there is strength in numbers can > help us all manage our disease better and find some comfort ; and > maybe a good laugh here and there as well.> > I am looking forward to meeting everyone as time goes and once again > thank you for allowing me to join your group.> > Now I am looking for a "spell check " feature ;o)> > PS: The Spoon Theory is an intersting read. It was written by a woman > with Lupus , but can be applied to any crohnic disease. I am not sure > if there is a policy about posting links but it can easily be found > by doing a Yahoo search.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2007 Report Share Posted January 14, 2007 > > > > Hello to everyone in the Breathe Support Group. I would like to take > > this oppurtunity to thank Leanne for allowing me to join your group > > and introduce myself. My name is ( obviously ) and I was > > diagnosed with IPF in November 2006. I am 50 years old , divorced , > > and have been disabled (SSDI) from Crohns Disease and Anklosing > > Spondylitis since 1998. I am not a complete stranger to this disease > > because my mother , who just turned 80 , was diagnosed with IPF in > > November of 2005. > > > > Unlike myself , she never smoked , and was never exposed to second > > hand smoke. I was the only one in the family stupid enough to take up > > that nasty habit , but I never smoked around her. Even when she moved > > in with me after my father passed away in 2003 I would go outside to > > smoke regardless of the weather. > > > > I also worked for 25 years in a pottery where I am sure I was exposed > > to silica and a lot of other industrial pollutants , but she was > > always a homemaker, so it is mystifying why she would get it and then > > I would be diganosed one year later ; but I know it happens , just > > like Crohns , for no apparent reason. > > > > I want to fill out the profile questionarre that Leanne sent me , but > > that was Thursday and I still havent got to it and didnt want to wait > > any longer to come in here and say Hello. My purpose for joining is > > to hopefully lend support to other members and I may need some myself > > from time to time because I am also a caregiver as well . That role > > takes a lot of time , and as I am sure everyone with IPF knows it's > > not so much the time but the energy or stamina that one has. > > > > A friend sent me an intersting story called the " Spoon Therory " which > > many of you may have heard ; one of the quotations from the story is > > " Most people start the day with unlimited amount of possibilities, > > and energy to do whatever they desire, especially young people. For > > the most part, they do not need to worry about the effects of their > > actions. " I have learned that with any crohnic disease managing ones > > time is essential to getting through the day and having time and > > resourses left over to enjoy oneself; but that is not always possible. > > > > Anyway , I am going to close by extending my hand in friendship and > > hoping the fact we are not alone and there is strength in numbers can > > help us all manage our disease better and find some comfort ; and > > maybe a good laugh here and there as well. > > > > I am looking forward to meeting everyone as time goes and once again > > thank you for allowing me to join your group. > > > > Now I am looking for a " spell check " feature ;o) > > > > PS: The Spoon Theory is an intersting read. It was written by a woman > > with Lupus , but can be applied to any crohnic disease. I am not sure > > if there is a policy about posting links but it can easily be found > > by doing a Yahoo search. Hi Joyce! Thank you for the welcome ! I have thought about the bridge but I dont know how to swim lol ! Yes, AS is an immune system disorder like Crohns and IPF sometimes but I didnt know that IPF could be secondary to Crohns! This is one of the reasons I joined this group; Ive already learned something new. My GI closed his practice and moved to CA in September and I have yet to find a new one; I miss him because he was very concienous. Right now I'm just with my PCP and since she has me on prednisone 40 mg daily for a Crohns flare she didnt do anything about the PF other than prescribe a nebulizer , Pulmocort and Xopenia ( or something like that spelling ). I am going to a lung specialist next month when the prednisone starts tapering off. I had an apptointment in December but my mother was back in the hospital with pneumonia and I seen him , she has the same doctor , and he said to come see him when I tapered of the prednisone and I would need to get another CT of the lungs first. I guess they figure thats about all they can do anyway. The Spoon Theory is great ( my disclaimer I'm not promotimng that web site or stealing there information http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2007 Report Share Posted January 14, 2007 Dear : Welcome to the group but I am sorry you have a reason to be here. There is so much that is unknown about IPF that I think in time they will find more of a genetic factor in it. Both my parents died in their early to mid 60's supposedly of heart disease but they both had undiagnosed lung problems and now I wonder if they had IPFand no one knew it. They died back in the 80's when there was so much less known about this disease. In fact all but one of my aunts, uncles and grandparents on my fathers side died in their 60's, so there must be something genetic here. I am sorry to hear that your mother has to deal with this disease as well. It is hard enough to have the disease but to need to be a caregiver of one with the disease as well makes it doubly a challenge. I know you will find a lot of support in this group and we are here if you just need to vent or cry...yes men do cry, they just usually dont admit to it. We all need to cry at times in order to cope. But you can also laugh with us over our silly ways and occasional jokes. Whatever you need we try to find ways to help one another. Carolyn Oswalt wrote: Hello to everyone in the Breathe Support Group. I would like to take this oppurtunity to thank Leanne for allowing me to join your group and introduce myself. My name is ( obviously ) and I was diagnosed with IPF in November 2006. I am 50 years old , divorced , and have been disabled (SSDI) from Crohns Disease and Anklosing Spondylitis since 1998. I am not a complete stranger to this disease because my mother , who just turned 80 , was diagnosed with IPF in November of 2005.Unlike myself , she never smoked , and was never exposed to second hand smoke. I was the only one in the family stupid enough to take up that nasty habit , but I never smoked around her. Even when she moved in with me after my father passed away in 2003 I would go outside to smoke regardless of the weather. I also worked for 25 years in a pottery where I am sure I was exposed to silica and a lot of other industrial pollutants , but she was always a homemaker, so it is mystifying why she would get it and then I would be diganosed one year later ; but I know it happens , just like Crohns , for no apparent reason.I want to fill out the profile questionarre that Leanne sent me , but that was Thursday and I still havent got to it and didnt want to wait any longer to come in here and say Hello. My purpose for joining is to hopefully lend support to other members and I may need some myself from time to time because I am also a caregiver as well . That role takes a lot of time , and as I am sure everyone with IPF knows it's not so much the time but the energy or stamina that one has.A friend sent me an intersting story called the "Spoon Therory" which many of you may have heard ; one of the quotations from the story is "Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions." I have learned that with any crohnic disease managing ones time is essential to getting through the day and having time and resourses left over to enjoy oneself; but that is not always possible.Anyway , I am going to close by extending my hand in friendship and hoping the fact we are not alone and there is strength in numbers can help us all manage our disease better and find some comfort ; and maybe a good laugh here and there as well.I am looking forward to meeting everyone as time goes and once again thank you for allowing me to join your group.Now I am looking for a "spell check " feature ;o)PS: The Spoon Theory is an intersting read. It was written by a woman with Lupus , but can be applied to any crohnic disease. I am not sure if there is a policy about posting links but it can easily be found by doing a Yahoo search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2007 Report Share Posted January 14, 2007 , Welcome and I'm sorry you have reason to be here, heck I'm sorry any of us have reason to be here. It sounds like you really have your hands full. I admire you for taking care of your mom in spite of your own illness. I agree completely with you regarding the importance of managing our resources of energy and stamina. It's difficult to get used to for me. I'm 47 and less than a year ago I was working full time and a seemingly completely functional adult person. Now I'm unable to work, I'm on O2 24/7 etc etc etc ad nauseum. I'm glad you joined us. This really is a great, strong and inspiring group of people! Beth Fibrotic NSIP 06/06 Don't try to explain it, just nod your head. Breathe in, breathe out. Move on. J. Buffett Hello ! Hello to everyone in the Breathe Support Group. I would like to take this oppurtunity to thank Leanne for allowing me to join your group and introduce myself. My name is ( obviously ) and I was diagnosed with IPF in November 2006. I am 50 years old , divorced , and have been disabled (SSDI) from Crohns Disease and Anklosing Spondylitis since 1998. I am not a complete stranger to this disease because my mother , who just turned 80 , was diagnosed with IPF in November of 2005.Unlike myself , she never smoked , and was never exposed to second hand smoke. I was the only one in the family stupid enough to take up that nasty habit , but I never smoked around her. Even when she moved in with me after my father passed away in 2003 I would go outside to smoke regardless of the weather. I also worked for 25 years in a pottery where I am sure I was exposed to silica and a lot of other industrial pollutants , but she was always a homemaker, so it is mystifying why she would get it and then I would be diganosed one year later ; but I know it happens , just like Crohns , for no apparent reason.I want to fill out the profile questionarre that Leanne sent me , but that was Thursday and I still havent got to it and didnt want to wait any longer to come in here and say Hello. My purpose for joining is to hopefully lend support to other members and I may need some myself from time to time because I am also a caregiver as well . That role takes a lot of time , and as I am sure everyone with IPF knows it's not so much the time but the energy or stamina that one has.A friend sent me an intersting story called the "Spoon Therory" which many of you may have heard ; one of the quotations from the story is "Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions." I have learned that with any crohnic disease managing ones time is essential to getting through the day and having time and resourses left over to enjoy oneself; but that is not always possible.Anyway , I am going to close by extending my hand in friendship and hoping the fact we are not alone and there is strength in numbers can help us all manage our disease better and find some comfort ; and maybe a good laugh here and there as well.I am looking forward to meeting everyone as time goes and once again thank you for allowing me to join your group.Now I am looking for a "spell check " feature ;o)PS: The Spoon Theory is an intersting read. It was written by a woman with Lupus , but can be applied to any crohnic disease. I am not sure if there is a policy about posting links but it can easily be found by doing a Yahoo search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2007 Report Share Posted January 14, 2007 , Welcome fellow potter!!!My Drs said that the clay wasn't to blame!!! Now go figure...I kept telling them that I had rediscovered my love of clay about 3 years ago ( after a 25 year break..you know to raise kids and work,etc). They said that the biopsy cleared the clay!!!So I still try to get to the studio for the workshops two days a week for 3 hours if I can. I'd be interested to know how your Drs feel about the pottery.I call the time at the studio my times at being "normal".Again, welcome! -- Z.NSIP/05 "I'm gonna be iron like a lion in Zion." Bob Marley -------------- Original message -------------- Hello to everyone in the Breathe Support Group. I would like to take this oppurtunity to thank Leanne for allowing me to join your group and introduce myself. My name is ( obviously ) and I was diagnosed with IPF in November 2006. I am 50 years old , divorced , and have been disabled (SSDI) from Crohns Disease and Anklosing Spondylitis since 1998. I am not a complete stranger to this disease because my mother , who just turned 80 , was diagnosed with IPF in November of 2005.Unlike myself , she never smoked , and was never exposed to second hand smoke. I was the only one in the family stupid enough to take up that nasty habit , but I never smoked around her. Even when she moved in with me after my father passed away in 2003 I would go outside to smoke regardless of the weather. I also worked for 25 years in a pottery where I am sure I was exposed to silica and a lot of other industrial pollutants , but she was BR>always a homemaker, so it is mystifying why she would get it and then I would be diganosed one year later ; but I know it happens , just like Crohns , for no apparent reason.I want to fill out the profile questionarre that Leanne sent me , but that was Thursday and I still havent got to it and didnt want to wait any longer to come in here and say Hello. My purpose for joining is to hopefully lend support to other members and I may need some myself from time to time because I am also a caregiver as well . That role takes a lot of time , and as I am sure everyone with IPF knows it's not so much the time but the energy or stamina that one has.A friend sent me an intersting story called the "Spoon Therory" which many of you may have heard ; one of the quotations from the story is "Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the mos t part, they do not need to worry about the effects of their actions." I have learned that with any crohnic disease managing ones time is essential to getting through the day and having time and resourses left over to enjoy oneself; but that is not always possible.Anyway , I am going to close by extending my hand in friendship and hoping the fact we are not alone and there is strength in numbers can help us all manage our disease better and find some comfort ; and maybe a good laugh here and there as well.I am looking forward to meeting everyone as time goes and once again thank you for allowing me to join your group.Now I am looking for a "spell check " feature ;o)PS: The Spoon Theory is an intersting read. It was written by a woman with Lupus , but can be applied to any crohnic disease. I am not sure if there is a policy about posting links but it can easily be found by doing a Yahoo search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2007 Report Share Posted January 16, 2007 Hi , that is good news ! Having something like that ( making pottery ) or any hobby i think is essential to keep ones sanity lol ! Actually I never got to experience making pottery with my bare hands. Everything was modernized and done by machines so it kind of takes the fun out of it. I had a lot of different positions while I was there from kiln fireman to hand liner in the end ( lining was a good paying job and I got to use some of my creative abilities ) I need a hobby now ) > > , Welcome fellow potter!!!My Drs said that the clay wasn't to blame!!! Now go figure...I kept telling them that I had rediscovered my love of clay about 3 years ago ( after a 25 year break..you know to raise kids and work,etc). They said that the biopsy cleared the clay!!!So I still try to get to the studio for the workshops two days a week for 3 hours if I can. I'd be interested to know how your Drs feel about the pottery.I call the time at the studio my times at being " normal " .Again, welcome! > > -- > Z.NSIP/05 > > " I'm gonna be iron like a lion in Zion. " Bob Marley > > -------------- Original message -------------- > > Hello to everyone in the Breathe Support Group. I would like to take > this oppurtunity to thank Leanne for allowing me to join your group > and introduce myself. My name is ( obviously ) and I was > diagnosed with IPF in November 2006. I am 50 years old , divorced , > and have been disabled (SSDI) from Crohns Disease and Anklosing > Spondylitis since 1998. I am not a complete stranger to this disease > because my mother , who just turned 80 , was diagnosed with IPF in > November of 2005. > > Unlike myself , she never smoked , and was never exposed to second > hand smoke. I was the only one in the family stupid enough to take up > that nasty habit , but I never smoked around her. Even when she moved > in with me after my father passed away in 2003 I would go outside to > smoke regardless of the weather. > > I also worked for 25 years in a pottery where I am sure I was exposed > to silica and a lot of other industrial pollutants , but she was > always a homemaker, so it is mystifying why she would get it and then > I would be diganosed one year later ; but I know it happens , just > like Crohns , for no apparent reason. > > I want to fill out the profile questionarre that Leanne sent me , but > that was Thursday and I still havent got to it and didnt want to wait > any longer to come in here and say Hello. My purpose for joining is > to hopefully lend support to other members and I may need some myself > from time to time because I am also a caregiver as well . That role > takes a lot of time , and as I am sure everyone with IPF knows it's > not so much the time but the energy or stamina that one has. > > A friend sent me an intersting story called the " Spoon Therory " which > many of you may have heard ; one of the quotations from the story is > " Most people start the day with unlimited amount of possibilities, > and energy to do whatever they desire, especially young people. For > the most part, they do not need to worry about the effects of their > actions. " I have learned that with any crohnic disease managing ones > time is essential to getting through the day and having time and > resourses left over to enjoy oneself; but that is not always possible. > > Anyway , I am going to close by extending my hand in friendship and > hoping the fact we are not alone and there is strength in numbers can > help us all manage our disease better and find some comfort ; and > maybe a good laugh here and there as well. > > I am looking forward to meeting everyone as time goes and once again > thank you for allowing me to join your group. > > Now I am looking for a " spell check " feature ;o) > > PS: The Spoon Theory is an intersting read. It was written by a woman > with Lupus , but can be applied to any crohnic disease. I am not sure > if there is a policy about posting links but it can easily be found > by doing a Yahoo search. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2007 Report Share Posted January 16, 2007 Thank You Carolyn ! That is so sad that both of your parents died so young ( since I am 50 I feel 60 is young ; they say 50 is the new 30 but that all depends on how you feel) Yes I think it is a shame there is so little know about IPF now , but I know what you mean about in the 80's. when I was diagnosed with Crohns disease I had never heard of it and it took me forver to get a diganosis. Now everyone has heard of it or knows someone with IBD. Thank you for the welcome! It is very difficult being a caregiver; even if one is in great health it's difficult but I try to persevere. They say God wont put anymore on ones shoulders than they can handle so thats what keeps me going. I have got to figure out how to see when someone has relplied to a post of mine more easily. I almost missed yours and I know probably a few others. I gotta get with the program ! ) > Hello to everyone in the Breathe Support Group. I would like to take > this oppurtunity to thank Leanne for allowing me to join your group > and introduce myself. My name is ( obviously ) and I was > diagnosed with IPF in November 2006. I am 50 years old , divorced , > and have been disabled (SSDI) from Crohns Disease and Anklosing > Spondylitis since 1998. I am not a complete stranger to this disease > because my mother , who just turned 80 , was diagnosed with IPF in > November of 2005. > > Unlike myself , she never smoked , and was never exposed to second > hand smoke. I was the only one in the family stupid enough to take up > that nasty habit , but I never smoked around her. Even when she moved > in with me after my father passed away in 2003 I would go outside to > smoke regardless of the weather. > > I also worked for 25 years in a pottery where I am sure I was exposed > to silica and a lot of other industrial pollutants , but she was > always a homemaker, so it is mystifying why she would get it and then > I would be diganosed one year later ; but I know it happens , just > like Crohns , for no apparent reason. > > I want to fill out the profile questionarre that Leanne sent me , but > that was Thursday and I still havent got to it and didnt want to wait > any longer to come in here and say Hello. My purpose for joining is > to hopefully lend support to other members and I may need some myself > from time to time because I am also a caregiver as well . That role > takes a lot of time , and as I am sure everyone with IPF knows it's > not so much the time but the energy or stamina that one has. > > A friend sent me an intersting story called the " Spoon Therory " which > many of you may have heard ; one of the quotations from the story is > " Most people start the day with unlimited amount of possibilities, > and energy to do whatever they desire, especially young people. For > the most part, they do not need to worry about the effects of their > actions. " I have learned that with any crohnic disease managing ones > time is essential to getting through the day and having time and > resourses left over to enjoy oneself; but that is not always possible. > > Anyway , I am going to close by extending my hand in friendship and > hoping the fact we are not alone and there is strength in numbers can > help us all manage our disease better and find some comfort ; and > maybe a good laugh here and there as well. > > I am looking forward to meeting everyone as time goes and once again > thank you for allowing me to join your group. > > Now I am looking for a " spell check " feature ;o) > > PS: The Spoon Theory is an intersting read. It was written by a woman > with Lupus , but can be applied to any crohnic disease. I am not sure > if there is a policy about posting links but it can easily be found > by doing a Yahoo search. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2007 Report Share Posted January 16, 2007 Hi Beth and thank you for the welcome ! Most of the stories I have read sound very much like yours. It comes on so fast your blindsighted. The disease may progress without symptoms at first , but as in the case with my mother , she developed a dry hacking cough and with one month she was in the hospital with both lungs scarred 3/4 of the way up from the bottom. She is on O2 24 hours a day as well , 2 litres. One of the things that made me realize back in November something was wrong was being so short of breath and I actually tapped one of her spare O2 tanks and it made me feel so much better I knew something had to be wrong so I went to my doctor and told her I have got to get a chest x ray. She was wise in ordering a CT instead. She said I have splotchy lungs , but its the same thing as my mom. Fortunately I do not need O2 yet but I'm sure it's in the not so distant future. I feel so fatigued all the time and tapping that spare tank does help. She as a concentrator and a Helios for when she goes to the doctor so the spares dont get used anyway ( didnt want anyone to think I was stealing my poor old moms O2 ) My appt with the Lung specialist is coming up ; we'll see what he says.-- - In Breathe-Support , Beth wrote: > > , > > Welcome and I'm sorry you have reason to be here, heck I'm sorry any of us have reason to be here. It sounds like you really have your hands full. I admire you for taking care of your mom in spite of your own illness. I agree completely with you regarding the importance of managing our resources of energy and stamina. It's difficult to get used to for me. I'm 47 and less than a year ago I was working full time and a seemingly completely functional adult person. Now I'm unable to work, I'm on O2 24/7 etc etc etc ad nauseum. > > I'm glad you joined us. This really is a great, strong and inspiring group of people! > > Beth Fibrotic NSIP 06/06 > > Don't try to explain it, just nod your head. > Breathe in, breathe out. Move on. J. Buffett > > > > Hello ! > > Hello to everyone in the Breathe Support Group. I would like to take > this oppurtunity to thank Leanne for allowing me to join your group > and introduce myself. My name is ( obviously ) and I was > diagnosed with IPF in November 2006. I am 50 years old , divorced , > and have been disabled (SSDI) from Crohns Disease and Anklosing > Spondylitis since 1998. I am not a complete stranger to this disease > because my mother , who just turned 80 , was diagnosed with IPF in > November of 2005. > > Unlike myself , she never smoked , and was never exposed to second > hand smoke. I was the only one in the family stupid enough to take up > that nasty habit , but I never smoked around her. Even when she moved > in with me after my father passed away in 2003 I would go outside to > smoke regardless of the weather. > > I also worked for 25 years in a pottery where I am sure I was exposed > to silica and a lot of other industrial pollutants , but she was > always a homemaker, so it is mystifying why she would get it and then > I would be diganosed one year later ; but I know it happens , just > like Crohns , for no apparent reason. > > I want to fill out the profile questionarre that Leanne sent me , but > that was Thursday and I still havent got to it and didnt want to wait > any longer to come in here and say Hello. My purpose for joining is > to hopefully lend support to other members and I may need some myself > from time to time because I am also a caregiver as well . That role > takes a lot of time , and as I am sure everyone with IPF knows it's > not so much the time but the energy or stamina that one has. > > A friend sent me an intersting story called the " Spoon Therory " which > many of you may have heard ; one of the quotations from the story is > " Most people start the day with unlimited amount of possibilities, > and energy to do whatever they desire, especially young people. For > the most part, they do not need to worry about the effects of their > actions. " I have learned that with any crohnic disease managing ones > time is essential to getting through the day and having time and > resourses left over to enjoy oneself; but that is not always possible. > > Anyway , I am going to close by extending my hand in friendship and > hoping the fact we are not alone and there is strength in numbers can > help us all manage our disease better and find some comfort ; and > maybe a good laugh here and there as well. > > I am looking forward to meeting everyone as time goes and once again > thank you for allowing me to join your group. > > Now I am looking for a " spell check " feature ;o) > > PS: The Spoon Theory is an intersting read. It was written by a woman > with Lupus , but can be applied to any crohnic disease. I am not sure > if there is a policy about posting links but it can easily be found > by doing a Yahoo search. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2007 Report Share Posted January 16, 2007 , I don't what I'd do if the studio assistants weren't so wonderful with our pieces. They are totally responsible for the outcome of my work! You did a very important job..believe me. Z. fibriotic NSIP/05 Oswalt wrote: > Hi , that is good news ! Having something like that ( making > pottery ) or any hobby i think is essential to keep ones sanity lol ! > Actually I never got to experience making pottery with my bare hands. > Everything was modernized and done by machines so it kind of takes > the fun out of it. I had a lot of different positions while I was > there from kiln fireman to hand liner in the end ( lining was a good > paying job and I got to use some of my creative abilities ) > I need a hobby now ) > > > > > , Welcome fellow potter!!!My Drs said that the clay wasn't to > blame!!! Now go figure...I kept telling them that I had rediscovered > my love of clay about 3 years ago ( after a 25 year break..you know > to raise kids and work,etc). They said that the biopsy cleared the > clay!!!So I still try to get to the studio for the workshops two days > a week for 3 hours if I can. I'd be interested to know how your Drs > feel about the pottery.I call the time at the studio my times at > being " normal " .Again, welcome! > > > > -- > > Z.NSIP/05 > > > > " I'm gonna be iron like a lion in Zion. " Bob Marley > > > > -------------- Original message -------------- > > > > Hello to everyone in the Breathe Support Group. I would like to > take > > this oppurtunity to thank Leanne for allowing me to join your group > > and introduce myself. My name is ( obviously ) and I was > > diagnosed with IPF in November 2006. I am 50 years old , divorced , > > and have been disabled (SSDI) from Crohns Disease and Anklosing > > Spondylitis since 1998. I am not a complete stranger to this > disease > > because my mother , who just turned 80 , was diagnosed with IPF in > > November of 2005. > > > > Unlike myself , she never smoked , and was never exposed to second > > hand smoke. I was the only one in the family stupid enough to take > up > > that nasty habit , but I never smoked around her. Even when she > moved > > in with me after my father passed away in 2003 I would go outside > to > > smoke regardless of the weather. > > > > I also worked for 25 years in a pottery where I am sure I was > exposed > > to silica and a lot of other industrial pollutants , but she was > > always a homemaker, so it is mystifying why she would get it and > then > > I would be diganosed one year later ; but I know it happens , just > > like Crohns , for no apparent reason. > > > > I want to fill out the profile questionarre that Leanne sent me , > but > > that was Thursday and I still havent got to it and didnt want to > wait > > any longer to come in here and say Hello. My purpose for joining is > > to hopefully lend support to other members and I may need some > myself > > from time to time because I am also a caregiver as well . That role > > takes a lot of time , and as I am sure everyone with IPF knows it's > > not so much the time but the energy or stamina that one has. > > > > A friend sent me an intersting story called the " Spoon Therory " > which > > many of you may have heard ; one of the quotations from the story > is > > " Most people start the day with unlimited amount of possibilities, > > and energy to do whatever they desire, especially young people. For > > the most part, they do not need to worry about the effects of their > > actions. " I have learned that with any crohnic disease managing > ones > > time is essential to getting through the day and having time and > > resourses left over to enjoy oneself; but that is not always > possible. > > > > Anyway , I am going to close by extending my hand in friendship and > > hoping the fact we are not alone and there is strength in numbers > can > > help us all manage our disease better and find some comfort ; and > > maybe a good laugh here and there as well. > > > > I am looking forward to meeting everyone as time goes and once > again > > thank you for allowing me to join your group. > > > > Now I am looking for a " spell check " feature ;o) > > > > PS: The Spoon Theory is an intersting read. It was written by a > woman > > with Lupus , but can be applied to any crohnic disease. I am not > sure > > if there is a policy about posting links but it can easily be found > > by doing a Yahoo search. > > > > > >------------------------------------------------------------------------ > >No virus found in this incoming message. >Checked by AVG Free Edition. >Version: 7.1.410 / Virus Database: 268.16.12/631 - Release Date: 1/16/2007 > > -- I'm gonna be iron like a lion in Zion. * Bob Marley Quote Link to comment Share on other sites More sharing options...
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