Guest guest Posted October 6, 1999 Report Share Posted October 6, 1999 DAWN. I JUST ASK THE DOCTOR YESTERDAY AFTER THE ERCP AND HE SAID BEING COLD IS PART OF IT. IF I GET CHILLED DURING THE DAY I NEVER TO SEEM TO WARM UP. HOW ABOUT YOU?. WERID HUH, HAVE A NICE EVENING MARSHA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 1999 Report Share Posted October 6, 1999 DAWN. I JUST ASK THE DOCTOR YESTERDAY AFTER THE ERCP AND HE SAID BEING COLD IS PART OF IT. IF I GET CHILLED DURING THE DAY I NEVER TO SEEM TO WARM UP. HOW ABOUT YOU?. WERID HUH, HAVE A NICE EVENING MARSHA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 Dawn, I can't speak for the group but my husband Ed is sensitive to the cold. Of course he works outside, but, when he comes home he is freezing all night and it takes a long time to go away! I'm sorry if some of us scared you. For the most part the disease doesn't bring us down. We fight back and kick its butt most of the time! Gracie and Ed Ed - dx '93, listed '98 dscala119-@... wrote: original article:/group//?start=5280 > To everyone in the group - > > I am overwhelmed with all the responses to my posting - I can't believe the > response I got. THANK YOU! I had tears in my eyes each time I opened an > e-mail from the group that was addressed to me. I am truly blessed to have > found this support group!!!!! > > As I do not really have any of the symptoms (such as the itching and URQ > pain), it is a little scary reading the postings and seeing what may lie > ahead for me, but I'd rather be prepared. I do have a few questions after > reading the postings: > > What is SAMe? > > Does anyone see a nutritionist? If yes, do you feel it has helped in any way? > > Is anyone very sensitive to the cold? Someone at another liver disease > support group had said that people with liver disease are more sensitive to > the cold? I do not know if this is true but I myself am very sensitive to > the cold - my fingernails turn blue! > > Anyway, thanks again for the response and I hope that someday I can return > the favor and be able to give you helpful information. > > Love, > Dawn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 Dawn, I can't speak for the group but my husband Ed is sensitive to the cold. Of course he works outside, but, when he comes home he is freezing all night and it takes a long time to go away! I'm sorry if some of us scared you. For the most part the disease doesn't bring us down. We fight back and kick its butt most of the time! Gracie and Ed Ed - dx '93, listed '98 dscala119-@... wrote: original article:/group//?start=5280 > To everyone in the group - > > I am overwhelmed with all the responses to my posting - I can't believe the > response I got. THANK YOU! I had tears in my eyes each time I opened an > e-mail from the group that was addressed to me. I am truly blessed to have > found this support group!!!!! > > As I do not really have any of the symptoms (such as the itching and URQ > pain), it is a little scary reading the postings and seeing what may lie > ahead for me, but I'd rather be prepared. I do have a few questions after > reading the postings: > > What is SAMe? > > Does anyone see a nutritionist? If yes, do you feel it has helped in any way? > > Is anyone very sensitive to the cold? Someone at another liver disease > support group had said that people with liver disease are more sensitive to > the cold? I do not know if this is true but I myself am very sensitive to > the cold - my fingernails turn blue! > > Anyway, thanks again for the response and I hope that someday I can return > the favor and be able to give you helpful information. > > Love, > Dawn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 Dawn, My hubby was diagnosed with PSC just a few weeks ago, although his problems have been ongoing for a LONG time. He has ulcerative colitis (10 yrs.), and since starting on Milk Thistle in Jan, it has gone into remission. The Dr. has given him a prescription for urso. He takes SAMe and I will try to explain what it is. I will be quoting the insert in the box, so don't get any ideas that I'm super intelligent (well....), anyway SAMe has been very popular lately in the news, magazine articles, medical journals, books, the internet, and with physicians. The reason behind much of the attention being paid to SAMe is the significant amount of scientific evidence supporting its use. In total, there are over 75 clinical studies on SAMe involving tens of thousands of people, that appear in scientific peer reviewed publications. SAME is the commonly used name for S-adenosylmethionine. It was first discovered in 1952 in Italy and has been commercially available in Europe since 1976. SAMe is an important compound that occurs in every living cell and takes part in several biological reactions in the human body.....Now this insert goes on for quite a bit, but let me summarize what I have learned about it.....studies have shown it to actually reverse cirrhosis and other liver diseases, It is especially helpful with cholestatis (bile duct problems), and I look at it this way, there's too much positive evidence about this stuff to ignore it. If it can reverse cirrhosis, then it only makes sense it might prevent it. Information is readily available on the net, just type in SAMe for a search and you should get alot of sites. I've been through quite a few and didn't read one negative thing......it's safe, I have talked to Mikes Dr. about it, and the pharmacist, we buy nature's made brand, it's the only brand available right now in Canada other than GNC and not only are they expensive but I heard that perhaps their additives aren't that great...so after being on it three weeks, he feels, and I see a difference. Hope this helps a bit, Patti DScala1193@... wrote: To everyone in the group - I am overwhelmed with all the responses to my posting - I can't believe the response I got. THANK YOU! I had tears in my eyes each time I opened an e-mail from the group that was addressed to me. I am truly blessed to have found this support group!!!!! As I do not really have any of the symptoms (such as the itching and URQ pain), it is a little scary reading the postings and seeing what may lie ahead for me, but I'd rather be prepared. I do have a few questions after reading the postings: What is SAMe? Does anyone see a nutritionist? If yes, do you feel it has helped in any way? Is anyone very sensitive to the cold? Someone at another liver disease support group had said that people with liver disease are more sensitive to the cold? I do not know if this is true but I myself am very sensitive to the cold - my fingernails turn blue! Anyway, thanks again for the response and I hope that someday I can return the favor and be able to give you helpful information. Love, Dawn ------------------------------------------------------------------------ @Backup - The #1 Online Backup Service. Protect your files before you lose them. Easy, Reliable, Secure online backups. INSTALL today. http://clickhere./click/938 eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 Dawn, My hubby was diagnosed with PSC just a few weeks ago, although his problems have been ongoing for a LONG time. He has ulcerative colitis (10 yrs.), and since starting on Milk Thistle in Jan, it has gone into remission. The Dr. has given him a prescription for urso. He takes SAMe and I will try to explain what it is. I will be quoting the insert in the box, so don't get any ideas that I'm super intelligent (well....), anyway SAMe has been very popular lately in the news, magazine articles, medical journals, books, the internet, and with physicians. The reason behind much of the attention being paid to SAMe is the significant amount of scientific evidence supporting its use. In total, there are over 75 clinical studies on SAMe involving tens of thousands of people, that appear in scientific peer reviewed publications. SAME is the commonly used name for S-adenosylmethionine. It was first discovered in 1952 in Italy and has been commercially available in Europe since 1976. SAMe is an important compound that occurs in every living cell and takes part in several biological reactions in the human body.....Now this insert goes on for quite a bit, but let me summarize what I have learned about it.....studies have shown it to actually reverse cirrhosis and other liver diseases, It is especially helpful with cholestatis (bile duct problems), and I look at it this way, there's too much positive evidence about this stuff to ignore it. If it can reverse cirrhosis, then it only makes sense it might prevent it. Information is readily available on the net, just type in SAMe for a search and you should get alot of sites. I've been through quite a few and didn't read one negative thing......it's safe, I have talked to Mikes Dr. about it, and the pharmacist, we buy nature's made brand, it's the only brand available right now in Canada other than GNC and not only are they expensive but I heard that perhaps their additives aren't that great...so after being on it three weeks, he feels, and I see a difference. Hope this helps a bit, Patti DScala1193@... wrote: To everyone in the group - I am overwhelmed with all the responses to my posting - I can't believe the response I got. THANK YOU! I had tears in my eyes each time I opened an e-mail from the group that was addressed to me. I am truly blessed to have found this support group!!!!! As I do not really have any of the symptoms (such as the itching and URQ pain), it is a little scary reading the postings and seeing what may lie ahead for me, but I'd rather be prepared. I do have a few questions after reading the postings: What is SAMe? Does anyone see a nutritionist? If yes, do you feel it has helped in any way? Is anyone very sensitive to the cold? Someone at another liver disease support group had said that people with liver disease are more sensitive to the cold? I do not know if this is true but I myself am very sensitive to the cold - my fingernails turn blue! Anyway, thanks again for the response and I hope that someday I can return the favor and be able to give you helpful information. Love, Dawn ------------------------------------------------------------------------ @Backup - The #1 Online Backup Service. Protect your files before you lose them. Easy, Reliable, Secure online backups. INSTALL today. http://clickhere./click/938 eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 1999 Report Share Posted October 7, 1999 Dawn, I haven't posted, I don't think, since you've joined so Welcome! You were asking about sensitivity to the cold -- I am very sensitive. I'm ALWAYS cold when others are comfortable and comfortable when others are too warm! I have a sister-in-law with whom I spend a lot of time who is the opposite! We're never comfortable at the same time!! Just today at work (I work in a middle school) I was so cold and everyone else was just fine. My finger tips were tingling and numb for a couple of hours. Take care, Peggy McG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 1999 Report Share Posted October 8, 1999 Hi Dawn, You have just helped me. I have been intollerable to the cold over the last year. Even now at this time of year I have to jump into a hot bath to get warmed up. I never related intolerance to cold and liver disease but I believe it. 34, PSCdx97,CT >From: DScala1193@... >Reply-To: egroups >To: egroups >Subject: Blessing >Date: Wed, 6 Oct 1999 21:50:55 EDT > >To everyone in the group - > >I am overwhelmed with all the responses to my posting - I can't believe the >response I got. THANK YOU! I had tears in my eyes each time I opened an >e-mail from the group that was addressed to me. I am truly blessed to have >found this support group!!!!! > >As I do not really have any of the symptoms (such as the itching and URQ >pain), it is a little scary reading the postings and seeing what may lie >ahead for me, but I'd rather be prepared. I do have a few questions >after >reading the postings: > >What is SAMe? > >Does anyone see a nutritionist? If yes, do you feel it has helped in any >way? > >Is anyone very sensitive to the cold? Someone at another liver disease >support group had said that people with liver disease are more sensitive to >the cold? I do not know if this is true but I myself am very sensitive to >the cold - my fingernails turn blue! > >Anyway, thanks again for the response and I hope that someday I can return >the favor and be able to give you helpful information. > >Love, >Dawn > > >------------------------------------------------------------------------ >@Backup - The #1 Online Backup Service. Protect your files before >you lose them. Easy, Reliable, Secure online backups. INSTALL >today. http://clickhere./click/938 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > ______________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 1999 Report Share Posted October 8, 1999 , I don't have PSC but can relate to being cold, I've always had that problem. You do seem too young for menopausal problems but I did have a problem with night sweats prior to having hot flashes and true menopausal problems. The doctor put me on Provera at that time, I think I was in my 40's but people do have problems before that (but now I'm not interested in using synthetic hormones). Also I think that some of the people have expressed problems with menstral cycles so things could be altered - do you think. Now I am experiencing hot flashes and I go from sweating (sometimes my trunk will be wet and my arms and legs are cold). To being cold. I'm constantly putting sweaters on and off. Aren't you glad I've given something for you to look forward to. (I am 54). I don't think Phil has experienced sweats. Peg wayne bryan wrote: > Hi Dawn, > You have just helped me. I have been intollerable to the cold over the last > year. Even now at this time of year I have to jump into a hot bath to get > warmed up. I never related intolerance to cold and liver disease but I > believe it. > 34, PSCdx97,CT > > >From: DScala1193@... > >Reply-To: egroups > >To: egroups > >Subject: Blessing > >Date: Wed, 6 Oct 1999 21:50:55 EDT > > > >To everyone in the group - > > > >I am overwhelmed with all the responses to my posting - I can't believe the > >response I got. THANK YOU! I had tears in my eyes each time I opened an > >e-mail from the group that was addressed to me. I am truly blessed to have > >found this support group!!!!! > > > >As I do not really have any of the symptoms (such as the itching and URQ > >pain), it is a little scary reading the postings and seeing what may lie > >ahead for me, but I'd rather be prepared. I do have a few questions > >after > >reading the postings: > > > >What is SAMe? > > > >Does anyone see a nutritionist? If yes, do you feel it has helped in any > >way? > > > >Is anyone very sensitive to the cold? Someone at another liver disease > >support group had said that people with liver disease are more sensitive to > >the cold? I do not know if this is true but I myself am very sensitive to > >the cold - my fingernails turn blue! > > > >Anyway, thanks again for the response and I hope that someday I can return > >the favor and be able to give you helpful information. > > > >Love, > >Dawn > > > > > >------------------------------------------------------------------------ > >@Backup - The #1 Online Backup Service. Protect your files before > >you lose them. Easy, Reliable, Secure online backups. INSTALL > >today. http://clickhere./click/938 > > > > > >eGroups.com home: /group/ > > - Simplifying group communications > > > > > > > > > > ______________________________________________________ > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 1999 Report Share Posted October 8, 1999 , I don't have PSC but can relate to being cold, I've always had that problem. You do seem too young for menopausal problems but I did have a problem with night sweats prior to having hot flashes and true menopausal problems. The doctor put me on Provera at that time, I think I was in my 40's but people do have problems before that (but now I'm not interested in using synthetic hormones). Also I think that some of the people have expressed problems with menstral cycles so things could be altered - do you think. Now I am experiencing hot flashes and I go from sweating (sometimes my trunk will be wet and my arms and legs are cold). To being cold. I'm constantly putting sweaters on and off. Aren't you glad I've given something for you to look forward to. (I am 54). I don't think Phil has experienced sweats. Peg wayne bryan wrote: > Hi Dawn, > You have just helped me. I have been intollerable to the cold over the last > year. Even now at this time of year I have to jump into a hot bath to get > warmed up. I never related intolerance to cold and liver disease but I > believe it. > 34, PSCdx97,CT > > >From: DScala1193@... > >Reply-To: egroups > >To: egroups > >Subject: Blessing > >Date: Wed, 6 Oct 1999 21:50:55 EDT > > > >To everyone in the group - > > > >I am overwhelmed with all the responses to my posting - I can't believe the > >response I got. THANK YOU! I had tears in my eyes each time I opened an > >e-mail from the group that was addressed to me. I am truly blessed to have > >found this support group!!!!! > > > >As I do not really have any of the symptoms (such as the itching and URQ > >pain), it is a little scary reading the postings and seeing what may lie > >ahead for me, but I'd rather be prepared. I do have a few questions > >after > >reading the postings: > > > >What is SAMe? > > > >Does anyone see a nutritionist? If yes, do you feel it has helped in any > >way? > > > >Is anyone very sensitive to the cold? Someone at another liver disease > >support group had said that people with liver disease are more sensitive to > >the cold? I do not know if this is true but I myself am very sensitive to > >the cold - my fingernails turn blue! > > > >Anyway, thanks again for the response and I hope that someday I can return > >the favor and be able to give you helpful information. > > > >Love, > >Dawn > > > > > >------------------------------------------------------------------------ > >@Backup - The #1 Online Backup Service. Protect your files before > >you lose them. Easy, Reliable, Secure online backups. INSTALL > >today. http://clickhere./click/938 > > > > > >eGroups.com home: /group/ > > - Simplifying group communications > > > > > > > > > > ______________________________________________________ > > ------------------------------------------------------------------------ > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 1999 Report Share Posted October 8, 1999 Marsha - I am constantly freezing at work - my coworkers think I am nuts!!!! And once I get cold, it takes along time for me to warm up. I wonder why that is a side effect? Strange. How did the ERCP go? I am not familiar with your situation - was it just a routine ERCP to see how things were going or were you having problems like pain or high liver function tests? Hope it was nothing major. Thanks for the info and have a good weekend! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 1999 Report Share Posted October 8, 1999 Patti - Thanks for the info on the SAMe. I am going to bring it up with my gastroenterologist, and do some research. Sounds like a good thing. As for the Milk Thistle - has your husband experienced nausea with that? I had started taking it about two weeks ago and felt naseuse, so I stopped. I do not know if it was a coincidence. I may try it again next week. Hope your husband feels well and the UC stays in remission. Thanks again. Dawn :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 1999 Report Share Posted October 8, 1999 Peggy McG: Re: the cold - I am the same as you - when everyone else is warm, I am comfortable - everyone (including my hubby) thinks I am nuts. Right now it is 74 degrees in my house, my husband has on shorts and a t-shirt and I have on jeans, a t-shirt and a sweater.....and still my hands are cold. And I never understood why my tempurature never reached 98.6 degrees, usually I am around 97 degrees (when well). Well, at least now I know it could be because of the PSC. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 1999 Report Share Posted October 8, 1999 Dawn, He did not experience nausea, but interestingly enough, my brother started taking it and felt nauseated so he stopped. Maybe it affects some people differently, I would try it again if I were you, maybe a different brand. I know some brands probably have alot of fillers, a pharmacist told me to make sure it says 'standardized' on the bottle, this ensures that each capsule contains the same amount of milk thistle. Patti DScala1193@... wrote: Patti - Thanks for the info on the SAMe. I am going to bring it up with my gastroenterologist, and do some research. Sounds like a good thing. As for the Milk Thistle - has your husband experienced nausea with that? I had started taking it about two weeks ago and felt naseuse, so I stopped. I do not know if it was a coincidence. I may try it again next week. Hope your husband feels well and the UC stays in remission. Thanks again. Dawn :-) ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Dawn, My body temp is about the same as yours. When I feel sick and am sure I have a temp it's only about 98 so everyone thinks I'm " just fine " ! This really is a difficult disease to have when you're around people.........I never LOOK sick, never have a temp (according to the thermometer) and still keep going. So when I say I need between 10 & 12 hours of sleep a night people think I'm just lazy, I'm sure! Oh well, WE know better! Peggy McG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Dawn, My body temp is about the same as yours. When I feel sick and am sure I have a temp it's only about 98 so everyone thinks I'm " just fine " ! This really is a difficult disease to have when you're around people.........I never LOOK sick, never have a temp (according to the thermometer) and still keep going. So when I say I need between 10 & 12 hours of sleep a night people think I'm just lazy, I'm sure! Oh well, WE know better! Peggy McG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Dawn, My body temp is about the same as yours. When I feel sick and am sure I have a temp it's only about 98 so everyone thinks I'm " just fine " ! This really is a difficult disease to have when you're around people.........I never LOOK sick, never have a temp (according to the thermometer) and still keep going. So when I say I need between 10 & 12 hours of sleep a night people think I'm just lazy, I'm sure! Oh well, WE know better! Peggy McG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 I LOOK HEALTIIER NOT THAN I EVER LOOKED. I MET NORM HOFFMAN IN THE GROUP AN HE LOOKS GREAT ALSO. MARSHA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 I LOOK HEALTIIER NOT THAN I EVER LOOKED. I MET NORM HOFFMAN IN THE GROUP AN HE LOOKS GREAT ALSO. MARSHA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 I LOOK HEALTIIER NOT THAN I EVER LOOKED. I MET NORM HOFFMAN IN THE GROUP AN HE LOOKS GREAT ALSO. MARSHA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 HI DAWN. IT WAS JUST A ROUTINE ERCP TO CHANGE THE STENTS. I HADN*T HAD THEM CHANGED SINCE MAY. MY BLOOD TESTS ARE PERFECT BUT IF WAS JUST A PRECAUTIONARY THING. ACTUCALLY THE DISEASE STOPPED PROGRESSING,. WHEN I GOT IT CHANGED IN MAY THE SAME DIAGNOSIS. I MUST BE DOING SOMETHING RIGHT FOR THE TIME BEING!!! WENT TO 50 TH BIRTHDAY PARTY TODAY. IT IS INTHE 80'S IN CALIFORNIA. WHERE DO YOU LIVE?. TAKE CARE MARSHA DX PSC 11/98 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 HI DAWN. IT WAS JUST A ROUTINE ERCP TO CHANGE THE STENTS. I HADN*T HAD THEM CHANGED SINCE MAY. MY BLOOD TESTS ARE PERFECT BUT IF WAS JUST A PRECAUTIONARY THING. ACTUCALLY THE DISEASE STOPPED PROGRESSING,. WHEN I GOT IT CHANGED IN MAY THE SAME DIAGNOSIS. I MUST BE DOING SOMETHING RIGHT FOR THE TIME BEING!!! WENT TO 50 TH BIRTHDAY PARTY TODAY. IT IS INTHE 80'S IN CALIFORNIA. WHERE DO YOU LIVE?. TAKE CARE MARSHA DX PSC 11/98 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 HI DAWN. IT WAS JUST A ROUTINE ERCP TO CHANGE THE STENTS. I HADN*T HAD THEM CHANGED SINCE MAY. MY BLOOD TESTS ARE PERFECT BUT IF WAS JUST A PRECAUTIONARY THING. ACTUCALLY THE DISEASE STOPPED PROGRESSING,. WHEN I GOT IT CHANGED IN MAY THE SAME DIAGNOSIS. I MUST BE DOING SOMETHING RIGHT FOR THE TIME BEING!!! WENT TO 50 TH BIRTHDAY PARTY TODAY. IT IS INTHE 80'S IN CALIFORNIA. WHERE DO YOU LIVE?. TAKE CARE MARSHA DX PSC 11/98 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Hi Peggy Mc! Does anyone actually look sick with this disease? That is what is so maddening. Whenever I get a pain attack while I am out, people say " but you look so good? " I say to myself, " who cares if I look good -- how can anyone be this sick and look good? " I wish I knew the answer to that. The only one I have seen (in fact, I guess he is the only one I have seen) with PSC was the interview with Walter Payton on television. He looked very, very sick. I admire this man so very much he could have a liver anytime he wanted one, but like he said " I am going to wait my time for a liver -- I will not go before anyone just because I am known. " Another thing I can't understand is how a lot of you keep on working in this kind of pain! As I have said time and time again, I was a social columnist and now I cannot put a column together because of my facts and how bad I write now. This is so sad because that WAS my life -- MY WORK -- and, of course, my family. I am on disability and there is no way in the world that I could possibly hold down a job -- any job! I have even tried volunteering, but that didn't work out. Has any one contracted multiple ulcers with PSC? Has any bled from the ulcers or the varices? Enough, I have to go to bed now. Thanks for listening, Hugs, Biddy Re: Blessing >Dawn, >My body temp is about the same as yours. When I feel sick and am sure I have >a temp it's only about 98 so everyone thinks I'm " just fine " ! This really is >a difficult disease to have when you're around people.........I never LOOK >sick, never have a temp (according to the thermometer) and still keep going. >So when I say I need between 10 & 12 hours of sleep a night people think I'm >just lazy, I'm sure! Oh well, WE know better! > >Peggy McG > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Hi Peggy Mc! Does anyone actually look sick with this disease? That is what is so maddening. Whenever I get a pain attack while I am out, people say " but you look so good? " I say to myself, " who cares if I look good -- how can anyone be this sick and look good? " I wish I knew the answer to that. The only one I have seen (in fact, I guess he is the only one I have seen) with PSC was the interview with Walter Payton on television. He looked very, very sick. I admire this man so very much he could have a liver anytime he wanted one, but like he said " I am going to wait my time for a liver -- I will not go before anyone just because I am known. " Another thing I can't understand is how a lot of you keep on working in this kind of pain! As I have said time and time again, I was a social columnist and now I cannot put a column together because of my facts and how bad I write now. This is so sad because that WAS my life -- MY WORK -- and, of course, my family. I am on disability and there is no way in the world that I could possibly hold down a job -- any job! I have even tried volunteering, but that didn't work out. Has any one contracted multiple ulcers with PSC? Has any bled from the ulcers or the varices? Enough, I have to go to bed now. Thanks for listening, Hugs, Biddy Re: Blessing >Dawn, >My body temp is about the same as yours. When I feel sick and am sure I have >a temp it's only about 98 so everyone thinks I'm " just fine " ! This really is >a difficult disease to have when you're around people.........I never LOOK >sick, never have a temp (according to the thermometer) and still keep going. >So when I say I need between 10 & 12 hours of sleep a night people think I'm >just lazy, I'm sure! Oh well, WE know better! > >Peggy McG > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
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