Guest guest Posted November 4, 1999 Report Share Posted November 4, 1999 , Your words to Jeff were so true and great. I've never been a caregiver before and I think this has helped me in that area so much. I care and love the people in this group as if they were my own family, infact I've sort of adopted Jacquelyn as my daughter, although she feels more like a friend. It's funny to feel such love from strangers but being united in this doesn't seem like we are strangers. I find that I'm more caring about other people than I've ever been since Phil got sick but it still seems weird to be a caregiver instead of a receiver and I'm still a receiver with all my joint pains and allergies so Phil still takes care of me when he can. Peg wrote: > Jeff, My 7 year old son has this (PSC) and is a-symptomatic. He would > never understand the facts of what he may be facing down the road and > so hasn't been given enough explanation to even connect himself to > Walter Payton. I haven't had to contend with his " bad days " yet, but > the death of Walter Payton has set me off into major depression for > two days now. I just cry every time someone leaves the room. I > didn't know Walter personally and am not even a sports fan so I know > I'm not greiving over never seeing him again. My son doesn't have > symptoms (yet) so I shouldn't have to worry and grieve for him (yet). > But I just hate this whole darn disease and it's so unbelievably > frustrating to not understand why or how we all became blessed with > this mess. My family has tremendous other stressors going on in our > lives right now as well, and just getting through each day is a huge > struggle. I live for my PSC support friends. I don't always have > time to respond, but I read and print regularly. The more I read and > understand the more I hope to be able to desensitize myself from some > of the pain. Hearing from Tim is always very encouraging. Hearing > from and Biddy and many others enables me to see that I have > much to be thankful for right now. That I should absorb every minute > of good time while it's here. And hearing from Roy reminds me both of > my blessings and fortune as well as gives me the courage to face the > future. I think we are all trying to deal with and get beyond the > shock of losing one of our own (Walter). With such a rare disease, > it's not like we can run out to a local PSC support meeting and > embrace with someone who knows what we are going through. I spent the > last two days killing time - shopping and getting permission from my > kindergartner's teachers to spend the day just observing and hanging > out in the classroom - because I needed to keep my mind off the PSC > and Walter Payton's death, and yet I didn't want to hang out with > friends or family because I might have to talk about it. When my > husband told me that Walter Payton died, I could hardly wait to get > the kids off to bed so I could log on and see how you all were dealing > with the news. Maybe it would have been easier if we had been > forwarned that his time was about up or that he had the cancer ...just > so that we would have had time to adjust before the final moment. If > we can find good in our situations, possibly it would be that we have > all been chosen to appreciate the lives we have been given as well as > the loved ones around us to share it with. The PSC diagnosis has > threatened our security blanket and because of it, we have learned > about love in ways that many people may never experience, (or should I > say hope never to experience the way that we have). I don't know what > your other support options are, but always remember how much we all > care about you and Tina, and know that this support group is here any > time of day, any day of the week - even on holidays. Big Hugs and a > few tears, (You have to close your eyes and hug back now, so I > can feel better too. And then pass along my hugs to Tina as I'm sure > she must need some as well.) > > Support NEEDED!!!! > Hi everyone, I know that Tina and I don't talk much on the > group but we do read a very large amout of the messages and > keep you all in our prayers. This time I need support, it is > very hard to watch the one you LOVE go through all this > crap!!! I guess the Walter Payton thing has scared the hell > out of me.I know that bile duct cancer is a very low amount > of people but I can't get it out of my mind. You go on > everyday and think maybe this tx is ok and life will go back > to normal after it and live a good life. Then this happens > and you think can we make it that far. As a husband of a > person that has PSC I am not sure how I should act, I > thought I would be a good person for Tina to talk to on bad > days, and I do let he vent to me on those days but I have a > hard time with it myself. Where do we as spouses go for > support? Do I sound silly or do other spouses feel this way? > It is very hard on a person when PSC is one of the first > thing you think of when you wake up and one of the last > thing you think of when you go to > bed. > Thanks Jeff > ------------------------------------------------------------- > [click here] > Click here! > eGroups.com Home: /group/ > www. - Simplifying group communications > > ----------------------------------------------------------------------- > [click here] > Click here! > eGroups.com Home: /group/ > www. - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 1999 Report Share Posted November 4, 1999 , Your words to Jeff were so true and great. I've never been a caregiver before and I think this has helped me in that area so much. I care and love the people in this group as if they were my own family, infact I've sort of adopted Jacquelyn as my daughter, although she feels more like a friend. It's funny to feel such love from strangers but being united in this doesn't seem like we are strangers. I find that I'm more caring about other people than I've ever been since Phil got sick but it still seems weird to be a caregiver instead of a receiver and I'm still a receiver with all my joint pains and allergies so Phil still takes care of me when he can. Peg wrote: > Jeff, My 7 year old son has this (PSC) and is a-symptomatic. He would > never understand the facts of what he may be facing down the road and > so hasn't been given enough explanation to even connect himself to > Walter Payton. I haven't had to contend with his " bad days " yet, but > the death of Walter Payton has set me off into major depression for > two days now. I just cry every time someone leaves the room. I > didn't know Walter personally and am not even a sports fan so I know > I'm not greiving over never seeing him again. My son doesn't have > symptoms (yet) so I shouldn't have to worry and grieve for him (yet). > But I just hate this whole darn disease and it's so unbelievably > frustrating to not understand why or how we all became blessed with > this mess. My family has tremendous other stressors going on in our > lives right now as well, and just getting through each day is a huge > struggle. I live for my PSC support friends. I don't always have > time to respond, but I read and print regularly. The more I read and > understand the more I hope to be able to desensitize myself from some > of the pain. Hearing from Tim is always very encouraging. Hearing > from and Biddy and many others enables me to see that I have > much to be thankful for right now. That I should absorb every minute > of good time while it's here. And hearing from Roy reminds me both of > my blessings and fortune as well as gives me the courage to face the > future. I think we are all trying to deal with and get beyond the > shock of losing one of our own (Walter). With such a rare disease, > it's not like we can run out to a local PSC support meeting and > embrace with someone who knows what we are going through. I spent the > last two days killing time - shopping and getting permission from my > kindergartner's teachers to spend the day just observing and hanging > out in the classroom - because I needed to keep my mind off the PSC > and Walter Payton's death, and yet I didn't want to hang out with > friends or family because I might have to talk about it. When my > husband told me that Walter Payton died, I could hardly wait to get > the kids off to bed so I could log on and see how you all were dealing > with the news. Maybe it would have been easier if we had been > forwarned that his time was about up or that he had the cancer ...just > so that we would have had time to adjust before the final moment. If > we can find good in our situations, possibly it would be that we have > all been chosen to appreciate the lives we have been given as well as > the loved ones around us to share it with. The PSC diagnosis has > threatened our security blanket and because of it, we have learned > about love in ways that many people may never experience, (or should I > say hope never to experience the way that we have). I don't know what > your other support options are, but always remember how much we all > care about you and Tina, and know that this support group is here any > time of day, any day of the week - even on holidays. Big Hugs and a > few tears, (You have to close your eyes and hug back now, so I > can feel better too. And then pass along my hugs to Tina as I'm sure > she must need some as well.) > > Support NEEDED!!!! > Hi everyone, I know that Tina and I don't talk much on the > group but we do read a very large amout of the messages and > keep you all in our prayers. This time I need support, it is > very hard to watch the one you LOVE go through all this > crap!!! I guess the Walter Payton thing has scared the hell > out of me.I know that bile duct cancer is a very low amount > of people but I can't get it out of my mind. You go on > everyday and think maybe this tx is ok and life will go back > to normal after it and live a good life. Then this happens > and you think can we make it that far. As a husband of a > person that has PSC I am not sure how I should act, I > thought I would be a good person for Tina to talk to on bad > days, and I do let he vent to me on those days but I have a > hard time with it myself. Where do we as spouses go for > support? Do I sound silly or do other spouses feel this way? > It is very hard on a person when PSC is one of the first > thing you think of when you wake up and one of the last > thing you think of when you go to > bed. > Thanks Jeff > ------------------------------------------------------------- > [click here] > Click here! > eGroups.com Home: /group/ > www. - Simplifying group communications > > ----------------------------------------------------------------------- > [click here] > Click here! > eGroups.com Home: /group/ > www. - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 1999 Report Share Posted November 4, 1999 Adam, Even in this hard time and while wondering why us? God helps you through it. I was away from God for 30 years and had a lot of adversities, I find that I can handle the adversities so much better now. The adversities don't lessen necessarily but it makes it so much easier to handle. I just get upset when people won't let the doctors help. After all God gave us doctors, I'm sure of that. I also believe that God wants us to work at getting the best care we can. That's why he gave us minds and spirits. Sorry if I offend anyone with my preaching but I can see a difference, I've lived both ways. Peg AdamPSC96@... wrote: > To those in need of support, > > I have never considered myself a religious person and became agnostic at 13. > My wife is the exact opposite. She lights candles, believes deeply in god, > and can't figure out why PSC in happening to us (we are also going through > invitro on top of everything else). > > I think in some ways the very spiritual may have a more difficult time than > the more scientifically minded. The hardship and the disease and watching > someone you love suffer can evoke a spiritual crises. > > She just recently read a book that has given her so much peace of mind. It > is called " When Bad Things Happen To Good People. " It is written by Harold > S. Kushner. Kuschner is a Rabbi who's son died from a rare disease at the > age of 14. It explains how this deeply religious and spiritual man could > retain his belief in god in the face of such tragedy. > > I read it and it is a very short and meaningful read. I highly recommend to > those who's faith and belief in god needs to be rejuvenated. > > Adam dx96 > > ------------------------------------------------------------------------ > Click on Instant Credit Card Approval at > http://clickhere./click/1271 > > -- 20 megs of disk space in your eGroup's Document Vault > -- /docvault//?m=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 1999 Report Share Posted November 4, 1999 Adam, Even in this hard time and while wondering why us? God helps you through it. I was away from God for 30 years and had a lot of adversities, I find that I can handle the adversities so much better now. The adversities don't lessen necessarily but it makes it so much easier to handle. I just get upset when people won't let the doctors help. After all God gave us doctors, I'm sure of that. I also believe that God wants us to work at getting the best care we can. That's why he gave us minds and spirits. Sorry if I offend anyone with my preaching but I can see a difference, I've lived both ways. Peg AdamPSC96@... wrote: > To those in need of support, > > I have never considered myself a religious person and became agnostic at 13. > My wife is the exact opposite. She lights candles, believes deeply in god, > and can't figure out why PSC in happening to us (we are also going through > invitro on top of everything else). > > I think in some ways the very spiritual may have a more difficult time than > the more scientifically minded. The hardship and the disease and watching > someone you love suffer can evoke a spiritual crises. > > She just recently read a book that has given her so much peace of mind. It > is called " When Bad Things Happen To Good People. " It is written by Harold > S. Kushner. Kuschner is a Rabbi who's son died from a rare disease at the > age of 14. It explains how this deeply religious and spiritual man could > retain his belief in god in the face of such tragedy. > > I read it and it is a very short and meaningful read. I highly recommend to > those who's faith and belief in god needs to be rejuvenated. > > Adam dx96 > > ------------------------------------------------------------------------ > Click on Instant Credit Card Approval at > http://clickhere./click/1271 > > -- 20 megs of disk space in your eGroup's Document Vault > -- /docvault//?m=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 1999 Report Share Posted November 5, 1999 Adam, I used to be an athiest and now am a very strong believer in a personal and living/loving God. I am also a mechanical engineer. I love math and science. I haven't had to give either up to believe in God. In fact, I have found Einstein's theories of relativity as excellent evidence for the creation theory and eternity. As for my dealing with my disease and being a believer, my God gets me through when I don't understand. Yes, there are spiritual crises, but they bring us closer to God in the end. When your life is in the hands of the greatest loving being in existence, the better you know Him, the more you trust Him. Our problem is that He is not in the business that most of us think He is in. He is not nearly as concerned about our present as He is for our eternity. Dan adampsc9-@... wrote: original article:/group//?start=6219 > To those in need of support, > > I have never considered myself a religious person and became agnostic at 13. > My wife is the exact opposite. She lights candles, believes deeply in god, > and can't figure out why PSC in happening to us (we are also going through > invitro on top of everything else). > > I think in some ways the very spiritual may have a more difficult time than > the more scientifically minded. The hardship and the disease and watching > someone you love suffer can evoke a spiritual crises. > > She just recently read a book that has given her so much peace of mind. It > is called " When Bad Things Happen To Good People. " It is written by Harold > S. Kushner. Kuschner is a Rabbi who's son died from a rare disease at the > age of 14. It explains how this deeply religious and spiritual man could > retain his belief in god in the face of such tragedy. > > I read it and it is a very short and meaningful read. I highly recommend to > those who's faith and belief in god needs to be rejuvenated. > > Adam dx96 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 1999 Report Share Posted November 5, 1999 Adam, I used to be an athiest and now am a very strong believer in a personal and living/loving God. I am also a mechanical engineer. I love math and science. I haven't had to give either up to believe in God. In fact, I have found Einstein's theories of relativity as excellent evidence for the creation theory and eternity. As for my dealing with my disease and being a believer, my God gets me through when I don't understand. Yes, there are spiritual crises, but they bring us closer to God in the end. When your life is in the hands of the greatest loving being in existence, the better you know Him, the more you trust Him. Our problem is that He is not in the business that most of us think He is in. He is not nearly as concerned about our present as He is for our eternity. Dan adampsc9-@... wrote: original article:/group//?start=6219 > To those in need of support, > > I have never considered myself a religious person and became agnostic at 13. > My wife is the exact opposite. She lights candles, believes deeply in god, > and can't figure out why PSC in happening to us (we are also going through > invitro on top of everything else). > > I think in some ways the very spiritual may have a more difficult time than > the more scientifically minded. The hardship and the disease and watching > someone you love suffer can evoke a spiritual crises. > > She just recently read a book that has given her so much peace of mind. It > is called " When Bad Things Happen To Good People. " It is written by Harold > S. Kushner. Kuschner is a Rabbi who's son died from a rare disease at the > age of 14. It explains how this deeply religious and spiritual man could > retain his belief in god in the face of such tragedy. > > I read it and it is a very short and meaningful read. I highly recommend to > those who's faith and belief in god needs to be rejuvenated. > > Adam dx96 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 1999 Report Share Posted November 5, 1999 Adam, I used to be an athiest and now am a very strong believer in a personal and living/loving God. I am also a mechanical engineer. I love math and science. I haven't had to give either up to believe in God. In fact, I have found Einstein's theories of relativity as excellent evidence for the creation theory and eternity. As for my dealing with my disease and being a believer, my God gets me through when I don't understand. Yes, there are spiritual crises, but they bring us closer to God in the end. When your life is in the hands of the greatest loving being in existence, the better you know Him, the more you trust Him. Our problem is that He is not in the business that most of us think He is in. He is not nearly as concerned about our present as He is for our eternity. Dan adampsc9-@... wrote: original article:/group//?start=6219 > To those in need of support, > > I have never considered myself a religious person and became agnostic at 13. > My wife is the exact opposite. She lights candles, believes deeply in god, > and can't figure out why PSC in happening to us (we are also going through > invitro on top of everything else). > > I think in some ways the very spiritual may have a more difficult time than > the more scientifically minded. The hardship and the disease and watching > someone you love suffer can evoke a spiritual crises. > > She just recently read a book that has given her so much peace of mind. It > is called " When Bad Things Happen To Good People. " It is written by Harold > S. Kushner. Kuschner is a Rabbi who's son died from a rare disease at the > age of 14. It explains how this deeply religious and spiritual man could > retain his belief in god in the face of such tragedy. > > I read it and it is a very short and meaningful read. I highly recommend to > those who's faith and belief in god needs to be rejuvenated. > > Adam dx96 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 1999 Report Share Posted November 5, 1999 Thanks to everyone for your kind words and offers of support, I guess that is what this site is all about. God bless us all. Jeff Re: Support NEEDED!!!! >Jeff: > >I know how you feel. It's hard watching someone you love go through this. >There are times I don't know what to say to him. I am the researcher and >it's hard when he asks me questions and the answers aren't good, but I still >have to tell him. > >Then there are the times when he doesn't need to say anything. I can tell by >his eyes that's his thinking of this awful disease and what it could do him >(us). There are also times when he offers me support. Walter Payton's death >was tough on both of us, but he let me cry on his shoulder about it. I cry >easily anyway (long distance phone commericials can set me off...). > >I'm definately more aware of how precious things are and even though we have >our disagreements, it's hard to stay upset at each other or argue over petty >items because you realize there are more important things. I'm glad I found >this group. It makes it a lot easier once you realize you aren't the only >one dealing with this. > >Kenny and I have very supportive families and that helps alot. I'm a pretty >good listener. If you want to compare notes or just vent, feel free to >e-mail me. > >Jackie > >------------------------------------------------------------------------ >Click on Instant Credit Card Approval at >http://clickhere./click/1271 > > >-- Easily schedule meetings and events using the group calendar! >-- /cal?listname= & m=1 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 1999 Report Share Posted November 5, 1999 Thanks to everyone for your kind words and offers of support, I guess that is what this site is all about. God bless us all. Jeff Re: Support NEEDED!!!! >Jeff: > >I know how you feel. It's hard watching someone you love go through this. >There are times I don't know what to say to him. I am the researcher and >it's hard when he asks me questions and the answers aren't good, but I still >have to tell him. > >Then there are the times when he doesn't need to say anything. I can tell by >his eyes that's his thinking of this awful disease and what it could do him >(us). There are also times when he offers me support. Walter Payton's death >was tough on both of us, but he let me cry on his shoulder about it. I cry >easily anyway (long distance phone commericials can set me off...). > >I'm definately more aware of how precious things are and even though we have >our disagreements, it's hard to stay upset at each other or argue over petty >items because you realize there are more important things. I'm glad I found >this group. It makes it a lot easier once you realize you aren't the only >one dealing with this. > >Kenny and I have very supportive families and that helps alot. I'm a pretty >good listener. If you want to compare notes or just vent, feel free to >e-mail me. > >Jackie > >------------------------------------------------------------------------ >Click on Instant Credit Card Approval at >http://clickhere./click/1271 > > >-- Easily schedule meetings and events using the group calendar! >-- /cal?listname= & m=1 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 1999 Report Share Posted November 6, 1999 Hi, Well, I know how you feel Jeff. My hubby has the PSC and I feel as though this disease has not only taken over his life, but 'our' lives. It controls every aspect of our lives to some degree. I don't know from one day to the next what his emotional state will be, and I understand, or at least I try to, the frustration of being out of control and the anger that comes along with the 'why me' thing. Of course the Walter Payton story rocked our worlds and it was very quiet when we learned of his passing. It's like you try to ignore what could happen and wham it hits you in the face with a dose of reality. We used to joke that if a couple can wallpaper together and survive they can get through anything.....well, wallpapering was nothing compared to the trials of dealing with this disease and it's uncertainty. God, you don't even know if you should plan a future, talk about retirement, or even if you should take vacation next year...... Anyway, we try to stay positive and so far he is basically symptom free, thanks to milk thistle and SAMe........we are trying to take it one day at a time, but to be honest, there are days when I wish I could open the door and just keep walking, I know he wishes he could walk somewhere to get away also.....it's harder on him I know, but spouses to share a percentage of the pain and in some ways it's very hard. You aren't alone, and that's the good thing about this group, no-one is alone here. Patti Jeff German wrote: Hi everyone, I know that Tina and I don't talk much on the group but we do read a very large amout of the messages and keep you all in our prayers. This time I need support, it is very hard to watch the one you LOVE go through all this crap!!! I guess the Walter Payton thing has scared the hell out of me.I know that bile duct cancer is a very low amount of people but I can't get it out of my mind. You go on everyday and think maybe this tx is ok and life will go back to normal after it and live a good life. Then this happens and you think can we make it that far. As a husband of a person that has PSC I am not sure how I should act, I thought I would be a good person for Tina to talk to on bad days, and I do let he vent to me on those days but I have a hard time with it myself. Where do we as spouses go for support? Do I sound silly or do other spouses feel this way? It is very hard on a person when PSC is one of the first thing you think of when you wake up and one of the last thing you think of when you go to bed. Thanks Jeff Click here! eGroups.com Home: /group/ www. - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 1999 Report Share Posted November 6, 1999 Hi, Well, I know how you feel Jeff. My hubby has the PSC and I feel as though this disease has not only taken over his life, but 'our' lives. It controls every aspect of our lives to some degree. I don't know from one day to the next what his emotional state will be, and I understand, or at least I try to, the frustration of being out of control and the anger that comes along with the 'why me' thing. Of course the Walter Payton story rocked our worlds and it was very quiet when we learned of his passing. It's like you try to ignore what could happen and wham it hits you in the face with a dose of reality. We used to joke that if a couple can wallpaper together and survive they can get through anything.....well, wallpapering was nothing compared to the trials of dealing with this disease and it's uncertainty. God, you don't even know if you should plan a future, talk about retirement, or even if you should take vacation next year...... Anyway, we try to stay positive and so far he is basically symptom free, thanks to milk thistle and SAMe........we are trying to take it one day at a time, but to be honest, there are days when I wish I could open the door and just keep walking, I know he wishes he could walk somewhere to get away also.....it's harder on him I know, but spouses to share a percentage of the pain and in some ways it's very hard. You aren't alone, and that's the good thing about this group, no-one is alone here. Patti Jeff German wrote: Hi everyone, I know that Tina and I don't talk much on the group but we do read a very large amout of the messages and keep you all in our prayers. This time I need support, it is very hard to watch the one you LOVE go through all this crap!!! I guess the Walter Payton thing has scared the hell out of me.I know that bile duct cancer is a very low amount of people but I can't get it out of my mind. You go on everyday and think maybe this tx is ok and life will go back to normal after it and live a good life. Then this happens and you think can we make it that far. As a husband of a person that has PSC I am not sure how I should act, I thought I would be a good person for Tina to talk to on bad days, and I do let he vent to me on those days but I have a hard time with it myself. Where do we as spouses go for support? Do I sound silly or do other spouses feel this way? It is very hard on a person when PSC is one of the first thing you think of when you wake up and one of the last thing you think of when you go to bed. Thanks Jeff Click here! eGroups.com Home: /group/ www. - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
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