Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 A friend of my parents had a similar problem. It took forever to diagnose. They thought he had Parkinson's. They did the surgery and he is much better. Good luck, Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 Hi Jan, I'm sure when everyone gets home from the conference in Boston, you will get some more " Welcome and sorry you have to be here " . I just wanted to tell you how much it helped me to find this group and know I was not alone. Someone can answers most questions from experience, not medically but good info to check out with your Dr. This is really a great bunch of people. Ginger New Member > For the past 2 hours I have sat here reading your messages. I feel > like I have been looking through a window, seeing and hearing people > I have never met but have been looking for over the past two years. > My husband was diagnosed four years ago with cerebellar ataxia and > three years ago that was changed to MSA. He is now in a wheelchair > unable to balance, is catheterized, has severe sleep apnea, was > hospitalized with pneumonia in Frebruary (in ICU w/ventilator), is > difficult to understand, has double vision even with prisms in his > glasses, has edema in his legs.....and the list goes on. The worst > part, no one seems to have heard of MSA. The best parts: he has the > most wonderful attitude and such an upbeat personality in spite of > this awful disease. And, I have now found others who understand and > share their knowledge. I feel like I have been silently screaming > for help for the last two years and now I have found that help. > Thank you. Jan > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 Hi Jan, I'm sure when everyone gets home from the conference in Boston, you will get some more " Welcome and sorry you have to be here " . I just wanted to tell you how much it helped me to find this group and know I was not alone. Someone can answers most questions from experience, not medically but good info to check out with your Dr. This is really a great bunch of people. Ginger New Member > For the past 2 hours I have sat here reading your messages. I feel > like I have been looking through a window, seeing and hearing people > I have never met but have been looking for over the past two years. > My husband was diagnosed four years ago with cerebellar ataxia and > three years ago that was changed to MSA. He is now in a wheelchair > unable to balance, is catheterized, has severe sleep apnea, was > hospitalized with pneumonia in Frebruary (in ICU w/ventilator), is > difficult to understand, has double vision even with prisms in his > glasses, has edema in his legs.....and the list goes on. The worst > part, no one seems to have heard of MSA. The best parts: he has the > most wonderful attitude and such an upbeat personality in spite of > this awful disease. And, I have now found others who understand and > share their knowledge. I feel like I have been silently screaming > for help for the last two years and now I have found that help. > Thank you. Jan > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 Hi Jan, I'm sure when everyone gets home from the conference in Boston, you will get some more " Welcome and sorry you have to be here " . I just wanted to tell you how much it helped me to find this group and know I was not alone. Someone can answers most questions from experience, not medically but good info to check out with your Dr. This is really a great bunch of people. Ginger New Member > For the past 2 hours I have sat here reading your messages. I feel > like I have been looking through a window, seeing and hearing people > I have never met but have been looking for over the past two years. > My husband was diagnosed four years ago with cerebellar ataxia and > three years ago that was changed to MSA. He is now in a wheelchair > unable to balance, is catheterized, has severe sleep apnea, was > hospitalized with pneumonia in Frebruary (in ICU w/ventilator), is > difficult to understand, has double vision even with prisms in his > glasses, has edema in his legs.....and the list goes on. The worst > part, no one seems to have heard of MSA. The best parts: he has the > most wonderful attitude and such an upbeat personality in spite of > this awful disease. And, I have now found others who understand and > share their knowledge. I feel like I have been silently screaming > for help for the last two years and now I have found that help. > Thank you. Jan > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 Jan, Sorry you have had to find this site, but you have come to the right place. My mother Joyce (71, died 11/5/00) had MSA and although she was crippled in many ways, lived life as fully as she could until the end (she died from complications). You will get solid information on the list about how best to manage symptoms. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 Jan, Sorry you have had to find this site, but you have come to the right place. My mother Joyce (71, died 11/5/00) had MSA and although she was crippled in many ways, lived life as fully as she could until the end (she died from complications). You will get solid information on the list about how best to manage symptoms. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 Jan, Sorry you have had to find this site, but you have come to the right place. My mother Joyce (71, died 11/5/00) had MSA and although she was crippled in many ways, lived life as fully as she could until the end (she died from complications). You will get solid information on the list about how best to manage symptoms. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 Jan, My husband is in a similar situation. If you should want to know more about him, I will be happy to share his story with you privately. Most people on the list have heard it before, but since he has many of the same symptoms, it might be of interest to you. Marilyn in TN > > Reply-To: shydrager > Date: Sun, 05 May 2002 17:09:55 -0000 > To: shydrager > Subject: New Member > > For the past 2 hours I have sat here reading your messages. I feel > like I have been looking through a window, seeing and hearing people > I have never met but have been looking for over the past two years. > My husband was diagnosed four years ago with cerebellar ataxia and > three years ago that was changed to MSA. He is now in a wheelchair > unable to balance, is catheterized, has severe sleep apnea, was > hospitalized with pneumonia in Frebruary (in ICU w/ventilator), is > difficult to understand, has double vision even with prisms in his > glasses, has edema in his legs.....and the list goes on. The worst > part, no one seems to have heard of MSA. The best parts: he has the > most wonderful attitude and such an upbeat personality in spite of > this awful disease. And, I have now found others who understand and > share their knowledge. I feel like I have been silently screaming > for help for the last two years and now I have found that help. > Thank you. Jan > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 Jan, My husband is in a similar situation. If you should want to know more about him, I will be happy to share his story with you privately. Most people on the list have heard it before, but since he has many of the same symptoms, it might be of interest to you. Marilyn in TN > > Reply-To: shydrager > Date: Sun, 05 May 2002 17:09:55 -0000 > To: shydrager > Subject: New Member > > For the past 2 hours I have sat here reading your messages. I feel > like I have been looking through a window, seeing and hearing people > I have never met but have been looking for over the past two years. > My husband was diagnosed four years ago with cerebellar ataxia and > three years ago that was changed to MSA. He is now in a wheelchair > unable to balance, is catheterized, has severe sleep apnea, was > hospitalized with pneumonia in Frebruary (in ICU w/ventilator), is > difficult to understand, has double vision even with prisms in his > glasses, has edema in his legs.....and the list goes on. The worst > part, no one seems to have heard of MSA. The best parts: he has the > most wonderful attitude and such an upbeat personality in spite of > this awful disease. And, I have now found others who understand and > share their knowledge. I feel like I have been silently screaming > for help for the last two years and now I have found that help. > Thank you. Jan > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 Jan, My husband is in a similar situation. If you should want to know more about him, I will be happy to share his story with you privately. Most people on the list have heard it before, but since he has many of the same symptoms, it might be of interest to you. Marilyn in TN > > Reply-To: shydrager > Date: Sun, 05 May 2002 17:09:55 -0000 > To: shydrager > Subject: New Member > > For the past 2 hours I have sat here reading your messages. I feel > like I have been looking through a window, seeing and hearing people > I have never met but have been looking for over the past two years. > My husband was diagnosed four years ago with cerebellar ataxia and > three years ago that was changed to MSA. He is now in a wheelchair > unable to balance, is catheterized, has severe sleep apnea, was > hospitalized with pneumonia in Frebruary (in ICU w/ventilator), is > difficult to understand, has double vision even with prisms in his > glasses, has edema in his legs.....and the list goes on. The worst > part, no one seems to have heard of MSA. The best parts: he has the > most wonderful attitude and such an upbeat personality in spite of > this awful disease. And, I have now found others who understand and > share their knowledge. I feel like I have been silently screaming > for help for the last two years and now I have found that help. > Thank you. Jan > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2002 Report Share Posted May 6, 2002 Hi Jan, Welcome to this wonderful family. I am sorry that you have to be here, but it will open up a whole new world for you. I felt exactly as you did when you found this group. Now you have a lot of people that understand exactly what you are experiencing. Hugs, Jean & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Welcome nne, Sorry you had to come looking for us but glad you have found us. Continue to read and feel free to participate with your questions or comments. Jan, caregiver to Jerry in sdale, Arizona > Hello, > I have just joined this group today. My father has been recently > diagnosed with shydrager after being told he has Parkinson's for the > last 10 years. I was looking for a support group to share experiences > and learn more about this disease and how to cope with it both > physically and mentally. I have been reading some emails, and you all > sound like you are a close-knit, loving group which is wonderful. I'm > glad I found this group. > > nne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Welcome nne, Sorry you had to come looking for us but glad you have found us. Continue to read and feel free to participate with your questions or comments. Jan, caregiver to Jerry in sdale, Arizona > Hello, > I have just joined this group today. My father has been recently > diagnosed with shydrager after being told he has Parkinson's for the > last 10 years. I was looking for a support group to share experiences > and learn more about this disease and how to cope with it both > physically and mentally. I have been reading some emails, and you all > sound like you are a close-knit, loving group which is wonderful. I'm > glad I found this group. > > nne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Welcome nne, Sorry you had to come looking for us but glad you have found us. Continue to read and feel free to participate with your questions or comments. Jan, caregiver to Jerry in sdale, Arizona > Hello, > I have just joined this group today. My father has been recently > diagnosed with shydrager after being told he has Parkinson's for the > last 10 years. I was looking for a support group to share experiences > and learn more about this disease and how to cope with it both > physically and mentally. I have been reading some emails, and you all > sound like you are a close-knit, loving group which is wonderful. I'm > glad I found this group. > > nne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 I am 41 years old. My name is Chris. I have chronic pancreatitis since I was 35. Once you have CP, you have it for life. There is no cure. My wife is very understanding. I thought she might leave me once she learned more about my disease, so I understand your boyfriend's reluctance to discuss it with you. If one has CP, he needs to eat a very low-fat diet as foods high in fat put a tremendous strain on the pancreas. He also must never take another sip of an alcoholic beverage. In 99, my pancreas hemorrhaged + my lungs collapsed. I was put on a ventilator (life support) with a 10% chance to live. After 14 days, I miraculously began breathing on my own again. I inject myself with demerol daily because of the pain. That's how bad it is. It is the most painful non-malignant disease there is. I take pancrease before meals + Tricor to reduce my triglycerides. I have an upper GI to undergo today as they wanna take a closer look at a cyst they earlier found on my pancreas. I admire you for wanting to help your boyfriend. Reassure him you'll be there for him no matter what. Like I was at one time, he's probly afraid you may leave him if you know the " whole truth " . Take care + God bless you Caroline, in Arizona. -- On Mon, 01 Jul 2002 08:54:46 appeltise wrote: >Hello All, > >I have joined today as I desperately need to know more about this >illness. My boyfriend had a bad attack last night and I could tell >looking at his face this morning that he isn't much better. He has >suffered from chronic pancreatitis for several years and I know that >he was declared dead at one stage in hospital. He won't tell me >anything about his illness and what it will mean in the long term. >This is the man I want to spend the rest of my life with and to have >children with, and yet this morning I feel as though I am looking >into a black abyss. All I want is to understand his illness and to >help him in any way that I can, yet I don't even know what foods I >should cook for him! All he does is laugh it off and say he is >indestructible but I think I at least deserve to know what a future >together will hold so that we can meet it together. I know he doesn't >want to be defined by his illness but I think at least one of us >should take it seriously. Any help I can receive will be gratefully >appreciated as at the moment I know nothing other than the fact that >he must take pancreatic enzymes before meals. > >Best regards, > >Caroline > > ____________________________________________________________ Win a first-class trip to New Orleans and vacation Elvis Style!. Enter NOW! http://r.lycos.com/r/sagel_mail/http://www.elvis.lycos.com/sweepstakes/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 I am 41 years old. My name is Chris. I have chronic pancreatitis since I was 35. Once you have CP, you have it for life. There is no cure. My wife is very understanding. I thought she might leave me once she learned more about my disease, so I understand your boyfriend's reluctance to discuss it with you. If one has CP, he needs to eat a very low-fat diet as foods high in fat put a tremendous strain on the pancreas. He also must never take another sip of an alcoholic beverage. In 99, my pancreas hemorrhaged + my lungs collapsed. I was put on a ventilator (life support) with a 10% chance to live. After 14 days, I miraculously began breathing on my own again. I inject myself with demerol daily because of the pain. That's how bad it is. It is the most painful non-malignant disease there is. I take pancrease before meals + Tricor to reduce my triglycerides. I have an upper GI to undergo today as they wanna take a closer look at a cyst they earlier found on my pancreas. I admire you for wanting to help your boyfriend. Reassure him you'll be there for him no matter what. Like I was at one time, he's probly afraid you may leave him if you know the " whole truth " . Take care + God bless you Caroline, in Arizona. -- On Mon, 01 Jul 2002 08:54:46 appeltise wrote: >Hello All, > >I have joined today as I desperately need to know more about this >illness. My boyfriend had a bad attack last night and I could tell >looking at his face this morning that he isn't much better. He has >suffered from chronic pancreatitis for several years and I know that >he was declared dead at one stage in hospital. He won't tell me >anything about his illness and what it will mean in the long term. >This is the man I want to spend the rest of my life with and to have >children with, and yet this morning I feel as though I am looking >into a black abyss. All I want is to understand his illness and to >help him in any way that I can, yet I don't even know what foods I >should cook for him! All he does is laugh it off and say he is >indestructible but I think I at least deserve to know what a future >together will hold so that we can meet it together. I know he doesn't >want to be defined by his illness but I think at least one of us >should take it seriously. Any help I can receive will be gratefully >appreciated as at the moment I know nothing other than the fact that >he must take pancreatic enzymes before meals. > >Best regards, > >Caroline > > ____________________________________________________________ Win a first-class trip to New Orleans and vacation Elvis Style!. Enter NOW! http://r.lycos.com/r/sagel_mail/http://www.elvis.lycos.com/sweepstakes/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Dear Thanks for your words of encouragement. You are probably right in that he might think that I will walk out if I knew the truth. His previous wife left him, though I don't believe that his illness was the reason. Modifying our diet will probably do me good as well (mid 30's and the pounds are gradually creeping on). Alcohol is probably another matter - this is a man who insists that he can't watch a soccer match without a beer and I know he had at least 4 pints yesterday watching the World Cup Final. He also says that he really wants children and perhaps if he is sincere in this he will realise that he owes it to them and to me to give up drink in order to be around for them. I am not going to give up on him as I knew from the first time that I met him that he was the one I want to be with. His illness is part of him, but it is not who he is. I have watched him cry over his sister, one of my closest friends, who has received treatment for breast cancer. He also constantly frets about my petty kidney infections and treatment. Yet he seems to block out my concerns and his sister's about his health. I hope I can help him to face it and that we can do so together. I think joining today will be a big help as at the moment I don't have anyone to turn to. All of the medical terminology is a little scary at the moment, but I think in the US you are far more clued up than we are in Britain. We just tend to sit back and let the doctors get on with it. Probably why he wasn't diagnosed until he was on life support! Medical services are not infallible and new treatments must be coming on liner all of the time. I don't want him to give up, and I certainly won't. I am looking forward to many happy years together and that is what is most important. Thanks again, I am feeling much calmer already and at least now I know I can talk to people who understand what we are going through. Caroline Caroline > >Hello All, > > > >I have joined today as I desperately need to know more about this > >illness. My boyfriend had a bad attack last night and I could tell > >looking at his face this morning that he isn't much better. He has > >suffered from chronic pancreatitis for several years and I know that > >he was declared dead at one stage in hospital. He won't tell me > >anything about his illness and what it will mean in the long term. > >This is the man I want to spend the rest of my life with and to have > >children with, and yet this morning I feel as though I am looking > >into a black abyss. All I want is to understand his illness and to > >help him in any way that I can, yet I don't even know what foods I > >should cook for him! All he does is laugh it off and say he is > >indestructible but I think I at least deserve to know what a future > >together will hold so that we can meet it together. I know he doesn't > >want to be defined by his illness but I think at least one of us > >should take it seriously. Any help I can receive will be gratefully > >appreciated as at the moment I know nothing other than the fact that > >he must take pancreatic enzymes before meals. > > > >Best regards, > > > >Caroline > > > > > > > ____________________________________________________________ > Win a first-class trip to New Orleans and vacation Elvis Style!. > Enter NOW! > http://r.lycos.com/r/sagel_mail/http://www.elvis.lycos.com/sweepstakes / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Dear Thanks for your words of encouragement. You are probably right in that he might think that I will walk out if I knew the truth. His previous wife left him, though I don't believe that his illness was the reason. Modifying our diet will probably do me good as well (mid 30's and the pounds are gradually creeping on). Alcohol is probably another matter - this is a man who insists that he can't watch a soccer match without a beer and I know he had at least 4 pints yesterday watching the World Cup Final. He also says that he really wants children and perhaps if he is sincere in this he will realise that he owes it to them and to me to give up drink in order to be around for them. I am not going to give up on him as I knew from the first time that I met him that he was the one I want to be with. His illness is part of him, but it is not who he is. I have watched him cry over his sister, one of my closest friends, who has received treatment for breast cancer. He also constantly frets about my petty kidney infections and treatment. Yet he seems to block out my concerns and his sister's about his health. I hope I can help him to face it and that we can do so together. I think joining today will be a big help as at the moment I don't have anyone to turn to. All of the medical terminology is a little scary at the moment, but I think in the US you are far more clued up than we are in Britain. We just tend to sit back and let the doctors get on with it. Probably why he wasn't diagnosed until he was on life support! Medical services are not infallible and new treatments must be coming on liner all of the time. I don't want him to give up, and I certainly won't. I am looking forward to many happy years together and that is what is most important. Thanks again, I am feeling much calmer already and at least now I know I can talk to people who understand what we are going through. Caroline Caroline > >Hello All, > > > >I have joined today as I desperately need to know more about this > >illness. My boyfriend had a bad attack last night and I could tell > >looking at his face this morning that he isn't much better. He has > >suffered from chronic pancreatitis for several years and I know that > >he was declared dead at one stage in hospital. He won't tell me > >anything about his illness and what it will mean in the long term. > >This is the man I want to spend the rest of my life with and to have > >children with, and yet this morning I feel as though I am looking > >into a black abyss. All I want is to understand his illness and to > >help him in any way that I can, yet I don't even know what foods I > >should cook for him! All he does is laugh it off and say he is > >indestructible but I think I at least deserve to know what a future > >together will hold so that we can meet it together. I know he doesn't > >want to be defined by his illness but I think at least one of us > >should take it seriously. Any help I can receive will be gratefully > >appreciated as at the moment I know nothing other than the fact that > >he must take pancreatic enzymes before meals. > > > >Best regards, > > > >Caroline > > > > > > > ____________________________________________________________ > Win a first-class trip to New Orleans and vacation Elvis Style!. > Enter NOW! > http://r.lycos.com/r/sagel_mail/http://www.elvis.lycos.com/sweepstakes / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Dear Caroline, Glad I could help a little. You'll find that most doctors know very little about CP. Alcohol is the absolute worst substance for someone with CP. It is worse than eating a high fat meal. He will have to stop drinking alcoholic beverages totally if he wants to extend the life of his pancreas. Also, the more he drinks the more pain he'll feel. I looked at my kids one day + thought about how much I love them + haven't drank alcohol in 5 years now. If I learn of any new advances in treating CP, I'll let you know. Chris. -- On Mon, 01 Jul 2002 09:47:31 appeltise wrote: >Dear > >Thanks for your words of encouragement. You are probably right in >that he might think that I will walk out if I knew the truth. His >previous wife left him, though I don't believe that his illness was >the reason. Modifying our diet will probably do me good as well (mid >30's and the pounds are gradually creeping on). Alcohol is probably >another matter - this is a man who insists that he can't watch a >soccer match without a beer and I know he had at least 4 pints >yesterday watching the World Cup Final. He also says that he really >wants children and perhaps if he is sincere in this he will realise >that he owes it to them and to me to give up drink in order to be >around for them. I am not going to give up on him as I knew from the >first time that I met him that he was the one I want to be with. His >illness is part of him, but it is not who he is. I have watched him >cry over his sister, one of my closest friends, who has received >treatment for breast cancer. He also constantly frets about my petty >kidney infections and treatment. Yet he seems to block out my >concerns and his sister's about his health. I hope I can help him to >face it and that we can do so together. I think joining today will be >a big help as at the moment I don't have anyone to turn to. All of >the medical terminology is a little scary at the moment, but I think >in the US you are far more clued up than we are in Britain. We just >tend to sit back and let the doctors get on with it. Probably why he >wasn't diagnosed until he was on life support! Medical services are >not infallible and new treatments must be coming on liner all of the >time. I don't want him to give up, and I certainly won't. I am >looking forward to many happy years together and that is what is most >important. Thanks again, I am feeling much calmer already and at >least now I know I can talk to people who understand what we are >going through. > >Caroline > >Caroline > > > >> >Hello All, >> > >> >I have joined today as I desperately need to know more about this >> >illness. My boyfriend had a bad attack last night and I could tell >> >looking at his face this morning that he isn't much better. He has >> >suffered from chronic pancreatitis for several years and I know >that >> >he was declared dead at one stage in hospital. He won't tell me >> >anything about his illness and what it will mean in the long term. >> >This is the man I want to spend the rest of my life with and to >have >> >children with, and yet this morning I feel as though I am looking >> >into a black abyss. All I want is to understand his illness and to >> >help him in any way that I can, yet I don't even know what foods I >> >should cook for him! All he does is laugh it off and say he is >> >indestructible but I think I at least deserve to know what a >future >> >together will hold so that we can meet it together. I know he >doesn't >> >want to be defined by his illness but I think at least one of us >> >should take it seriously. Any help I can receive will be >gratefully >> >appreciated as at the moment I know nothing other than the fact >that >> >he must take pancreatic enzymes before meals. >> > >> >Best regards, >> > >> >Caroline >> > >> > >> >> >> ____________________________________________________________ >> Win a first-class trip to New Orleans and vacation Elvis Style!. >> Enter NOW! >> >http://r.lycos.com/r/sagel_mail/http://www.elvis.lycos.com/sweepstakes >/ > > ____________________________________________________________ Win a first-class trip to New Orleans and vacation Elvis Style!. Enter NOW! http://r.lycos.com/r/sagel_mail/http://www.elvis.lycos.com/sweepstakes/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Dear Caroline, Glad I could help a little. You'll find that most doctors know very little about CP. Alcohol is the absolute worst substance for someone with CP. It is worse than eating a high fat meal. He will have to stop drinking alcoholic beverages totally if he wants to extend the life of his pancreas. Also, the more he drinks the more pain he'll feel. I looked at my kids one day + thought about how much I love them + haven't drank alcohol in 5 years now. If I learn of any new advances in treating CP, I'll let you know. Chris. -- On Mon, 01 Jul 2002 09:47:31 appeltise wrote: >Dear > >Thanks for your words of encouragement. You are probably right in >that he might think that I will walk out if I knew the truth. His >previous wife left him, though I don't believe that his illness was >the reason. Modifying our diet will probably do me good as well (mid >30's and the pounds are gradually creeping on). Alcohol is probably >another matter - this is a man who insists that he can't watch a >soccer match without a beer and I know he had at least 4 pints >yesterday watching the World Cup Final. He also says that he really >wants children and perhaps if he is sincere in this he will realise >that he owes it to them and to me to give up drink in order to be >around for them. I am not going to give up on him as I knew from the >first time that I met him that he was the one I want to be with. His >illness is part of him, but it is not who he is. I have watched him >cry over his sister, one of my closest friends, who has received >treatment for breast cancer. He also constantly frets about my petty >kidney infections and treatment. Yet he seems to block out my >concerns and his sister's about his health. I hope I can help him to >face it and that we can do so together. I think joining today will be >a big help as at the moment I don't have anyone to turn to. All of >the medical terminology is a little scary at the moment, but I think >in the US you are far more clued up than we are in Britain. We just >tend to sit back and let the doctors get on with it. Probably why he >wasn't diagnosed until he was on life support! Medical services are >not infallible and new treatments must be coming on liner all of the >time. I don't want him to give up, and I certainly won't. I am >looking forward to many happy years together and that is what is most >important. Thanks again, I am feeling much calmer already and at >least now I know I can talk to people who understand what we are >going through. > >Caroline > >Caroline > > > >> >Hello All, >> > >> >I have joined today as I desperately need to know more about this >> >illness. My boyfriend had a bad attack last night and I could tell >> >looking at his face this morning that he isn't much better. He has >> >suffered from chronic pancreatitis for several years and I know >that >> >he was declared dead at one stage in hospital. He won't tell me >> >anything about his illness and what it will mean in the long term. >> >This is the man I want to spend the rest of my life with and to >have >> >children with, and yet this morning I feel as though I am looking >> >into a black abyss. All I want is to understand his illness and to >> >help him in any way that I can, yet I don't even know what foods I >> >should cook for him! All he does is laugh it off and say he is >> >indestructible but I think I at least deserve to know what a >future >> >together will hold so that we can meet it together. I know he >doesn't >> >want to be defined by his illness but I think at least one of us >> >should take it seriously. Any help I can receive will be >gratefully >> >appreciated as at the moment I know nothing other than the fact >that >> >he must take pancreatic enzymes before meals. >> > >> >Best regards, >> > >> >Caroline >> > >> > >> >> >> ____________________________________________________________ >> Win a first-class trip to New Orleans and vacation Elvis Style!. >> Enter NOW! >> >http://r.lycos.com/r/sagel_mail/http://www.elvis.lycos.com/sweepstakes >/ > > ____________________________________________________________ Win a first-class trip to New Orleans and vacation Elvis Style!. Enter NOW! http://r.lycos.com/r/sagel_mail/http://www.elvis.lycos.com/sweepstakes/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Welcome to the group. I hope you will find it as helpful and I have. I have been married for almost 11 years and of that time I have been sick for 10 of them. I don't always tell my husband either, I don't want to feel like a burden to him. He is very caring and would and has done anything I have asked but I feel guilty. I am also very independent to a fault.....I can do it myself, leave me alone. Maybe that is what is going on with your boyfriend. Maybe he is just not one to open up. Actually its alot easier for me to write things down than to say it in person. I usually am not not to say anything unless specifically asked. Sorta my own " don't ask, don't tell " policy. Be supportive. Help him contol his diet, he needs to eat low fat. be there when he is sick. Hopefully, he will open up when he realizes you are there for the good and bad. In the meantime, he has to stop drinking. period. none even on those " special occassions " ---- I guess the World Cup is one of those.(lol) we don't have many soccer celebrations here, I was a little confused until you said you were from Britain)The more alcohol he drinks the worse it is on his pancreas and his overall health. Might as well be playing Russian Roulette. They are both bound to kill you some how. If not the pancreas then it will affect the liver. Best of luck to you. _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Welcome to the group. I hope you will find it as helpful and I have. I have been married for almost 11 years and of that time I have been sick for 10 of them. I don't always tell my husband either, I don't want to feel like a burden to him. He is very caring and would and has done anything I have asked but I feel guilty. I am also very independent to a fault.....I can do it myself, leave me alone. Maybe that is what is going on with your boyfriend. Maybe he is just not one to open up. Actually its alot easier for me to write things down than to say it in person. I usually am not not to say anything unless specifically asked. Sorta my own " don't ask, don't tell " policy. Be supportive. Help him contol his diet, he needs to eat low fat. be there when he is sick. Hopefully, he will open up when he realizes you are there for the good and bad. In the meantime, he has to stop drinking. period. none even on those " special occassions " ---- I guess the World Cup is one of those.(lol) we don't have many soccer celebrations here, I was a little confused until you said you were from Britain)The more alcohol he drinks the worse it is on his pancreas and his overall health. Might as well be playing Russian Roulette. They are both bound to kill you some how. If not the pancreas then it will affect the liver. Best of luck to you. _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Caroline, I'm sorry your boyfriend had an attack, it's not fun at all. First thing, he needs to stay away from alcohol, even in cooking food. It's the one thing guaranteed to set off the pancreas majorly. Second, as low fat to no fat as you can get with the foods. I typically have a target of no more than 6 grams of fat per meal (not per item). Fat is one of the other things guaranteed to set it off. Does he know why he has chronic pancreatitis or is it idiopathic(unknown cause)? Sometimes that will determine treatment. Here is a website that gives a great deal of informative information on pacreatitis: http:www.hopkins-gi.org/ Do a search on Pancreatitis. Look at all the items that come up. Kimber -- Kimber hominid2@... Southwest Representative Pancreatitis Association, International Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Caroline, I'm sorry your boyfriend had an attack, it's not fun at all. First thing, he needs to stay away from alcohol, even in cooking food. It's the one thing guaranteed to set off the pancreas majorly. Second, as low fat to no fat as you can get with the foods. I typically have a target of no more than 6 grams of fat per meal (not per item). Fat is one of the other things guaranteed to set it off. Does he know why he has chronic pancreatitis or is it idiopathic(unknown cause)? Sometimes that will determine treatment. Here is a website that gives a great deal of informative information on pacreatitis: http:www.hopkins-gi.org/ Do a search on Pancreatitis. Look at all the items that come up. Kimber -- Kimber hominid2@... Southwest Representative Pancreatitis Association, International Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 Caroline, One thing is no fatty foods. He has to stay on a low fat diet. It is so good that you are standing beside him and wanting to help him. I admire you a lot for that. I have had this disease since 1996 and have lost a fiancée because as he put it I stayed sick all the time and he was healthy. Did that through an email also. UGH. Please stand by your boyfriend. This group has helped me alot because without them I don't know what I would have done at times. If you ever need to talk just email me privately. I know that this list can help you. My email addy is SNOBLES@.... in Sumter, SC New Member Hello All, I have joined today as I desperately need to know more about this illness. My boyfriend had a bad attack last night and I could tell looking at his face this morning that he isn't much better. He has suffered from chronic pancreatitis for several years and I know that he was declared dead at one stage in hospital. He won't tell me anything about his illness and what it will mean in the long term. This is the man I want to spend the rest of my life with and to have children with, and yet this morning I feel as though I am looking into a black abyss. All I want is to understand his illness and to help him in any way that I can, yet I don't even know what foods I should cook for him! All he does is laugh it off and say he is indestructible but I think I at least deserve to know what a future together will hold so that we can meet it together. I know he doesn't want to be defined by his illness but I think at least one of us should take it seriously. Any help I can receive will be gratefully appreciated as at the moment I know nothing other than the fact that he must take pancreatic enzymes before meals. Best regards, Caroline PANCREATITIS Association, Intl. Online e-mail group To reply to this message hit " reply " or send an e-mail to: Pancreatitis (AT) Yahoo To subscribe to this e-mail group, simply send an e-mail to: Pancreatitis-subscribe (AT) Yahoo Quote Link to comment Share on other sites More sharing options...
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