Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 I'm so tired of this liver crap. The last week has been terrible. Last Sunday (the 6th) I woke up and I was just exhausted. And here we are 9 days later and I'm still dragging my feet. I'm SO TIRED it's unbelievable! A few days ago the itching got worse and my side has been killing me. Everytime I eat it's worse and my stomach blows up like I'm pregnant. I called my hepa's office and I'll just say I " m less than impressed. I was up there last month and they seemed to be annoyed that I was there. I think I posted about that. His " answer " to my pain was that I need to loose weight. Well I try, seriously, but I can't. And I'm not that overweight, but the twins destroyed my body. So when I called them the PA asked me if I had a fever or if I was jaundiced. I told her no. She called me back about 30 minutes later and said " don't worry about it. You're fine unless you get a fever or jaundice " !!!!!! SO really, is this what I have to look forward to? I mean I'm only 25 and I REALLY don't want to just suffer, you know. My counselor said to rememner that I have to get worse before I can get better but I'm just tired of people telling me not to worry or that they can do nothing. I mean it's been over a week. And to be honest with you, at this point I'm hoping for a fever so they will do SOMETHING! (feeling defeated) PSC, PBC, Raynauds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 - , although my former gastro did not behave this way, he was unresponsive in other ways and that's why I left him and found someone who actually listened to me. The new doctor knew more about me as a person at our first meeting than the other doctor knew in almost 10 years! She knew about my children, what my profession was, etc. This was information that my previous GI had in front of him each time I went and he never read it. Is it possible for you to look for a new doctor? Remember, we are all people first and patients second and we deserve to be treated with compassion AND concern. Penny -- In , " jmhette2 " wrote: > > > I called my hepa's office and I'll just say I " m less than > impressed. I was up there last month and they seemed to be annoyed > that I was there. > (feeling defeated) > PSC, PBC, Raynauds > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Hi , My heart goes out to you. Chronic fatigue is one of the most difficult parts of PSC. My Hep. is very kind and responsive and I ask him about fatigue (I'm in bed or on the couch about 15 hours per day) he says he understands but he has nothing he can do for me. It must be particularly hard when you are so young and have kids to take care of. I am 58 and on bad days I sometimes feel the fatigue has stolen my life. But, on better days I just try to look for meaning and joy in my life and I find it. I think from Mo has been a great inspiration because even when she was fatigued, sick and in pain, she managed to find the best she could in life and now after the transplant she is living life in full again. One bit of hope--fatigue, itching, pain etc. can go into remission. But, don't assume it will go away in a week or two. My motto is; PSC did not take my life, it changed my life. Remember it's okay to be depressed with this terrible disease. Everyone in this group understands. (Sacramento dx UC and PSC 2001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Hi , My heart goes out to you. Chronic fatigue is one of the most difficult parts of PSC. My Hep. is very kind and responsive and I ask him about fatigue (I'm in bed or on the couch about 15 hours per day) he says he understands but he has nothing he can do for me. It must be particularly hard when you are so young and have kids to take care of. I am 58 and on bad days I sometimes feel the fatigue has stolen my life. But, on better days I just try to look for meaning and joy in my life and I find it. I think from Mo has been a great inspiration because even when she was fatigued, sick and in pain, she managed to find the best she could in life and now after the transplant she is living life in full again. One bit of hope--fatigue, itching, pain etc. can go into remission. But, don't assume it will go away in a week or two. My motto is; PSC did not take my life, it changed my life. Remember it's okay to be depressed with this terrible disease. Everyone in this group understands. (Sacramento dx UC and PSC 2001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Ken, Glad you posted, wanted to let you know that you are still in my thoughts and prayers. You have been and are going through so much and I want you to know that even though you are not in the hospital, you have not been forgotten. PSC 5/07 Listed > Quote Link to comment Share on other sites More sharing options...
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