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 --- Biddy Santon wrote: > Does anyone actually look sick with this disease? Yes Biddy, just like Walter Peyton, in the later stages of PSC you look very sick. Your skin turns a yellowish bronze. More of a mustard color than a tan. Adema causes your ankles and feet to swell, ascites expands your waist line so none of your clothes fit, you switch from belts to suspenders because of tenderness (and they tend to slip down because there is no narrowness any longer). You start looking like hell and hoping that you get a long awaited call soon. Because you know, that even though you've had this disease for tens of years, it finally getting to you and there is not too much longer you can fight it. Your friends and family comment that they are praying for you and hope the wait won't be much longer. But there is hope, a transplant can give you another shot at the rest of your life. And for thousands each year that chance comes. Just as it did for me, Jacquelyn, , and others. Sorry for such a downer post, Tim ltx 4/4/98 ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 1999 Report Share Posted October 10, 1999 Tim, Why did you apologize for your post? As always you give us so much information and insight to our disease. Hugs, Biddy Re: Blessing > > >--- Biddy Santon wrote: >> Does anyone actually look sick with this disease? > >Yes Biddy, just like Walter Peyton, in the later stages of PSC >you look very sick. Your skin turns a yellowish bronze. More of >a mustard color than a tan. Adema causes your ankles and feet to >swell, ascites expands your waist line so none of your clothes >fit, you switch from belts to suspenders because of tenderness >(and they tend to slip down because there is no narrowness any >longer). You start looking like hell and hoping that you get a >long awaited call soon. Because you know, that even though >you've had this disease for tens of years, it finally getting to >you and there is not too much longer you can fight it. Your >friends and family comment that they are praying for you and >hope the wait won't be much longer. But there is hope, a >transplant can give you another shot at the rest of your life. >And for thousands each year that chance comes. Just as it did >for me, Jacquelyn, , and others. > >Sorry for such a downer post, >Tim ltx 4/4/98 > > >===== > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 1999 Report Share Posted October 10, 1999 Well for one thing it needed a much better subject line. The real reason was 'ignorance is bliss'. The old " It's better you don't know " philosophy. I got depressed writing it, and wanted to apologize to those that may not want to know what its like. Tim --- Biddy Santon wrote: > Tim, > Why did you apologize for your post? As always you give us > so much information and insight to our disease. > Hugs, > Biddy > > Re: Blessing > > > > > > > >--- Biddy Santon wrote: > >> Does anyone actually look sick with this disease? > > > >Yes Biddy, just like Walter Peyton, in the later stages of > PSC > >you look very sick. Your skin turns a yellowish bronze. More > of > >a mustard color than a tan. Adema causes your ankles and feet > to > >swell, ascites expands your waist line so none of your > clothes > >fit, you switch from belts to suspenders because of > tenderness > >(and they tend to slip down because there is no narrowness > any > >longer). You start looking like hell and hoping that you get > a > >long awaited call soon. Because you know, that even though > >you've had this disease for tens of years, it finally getting > to > >you and there is not too much longer you can fight it. Your > >friends and family comment that they are praying for you and > >hope the wait won't be much longer. But there is hope, a > >transplant can give you another shot at the rest of your > life. > >And for thousands each year that chance comes. Just as it did > >for me, Jacquelyn, , and others. > > > >Sorry for such a downer post, > >Tim ltx 4/4/98 > > > > > >===== > > > >__________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
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