Re: Re: I just need to talk/

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Melvyn and ,

Don't give up, either of you, I was diagnosed with PSC and had a Whipple operation 19 years ago. You both bring a lot to this group and to your families. There is hope for the future. Medical advances have prolonged my life and more advances are happening every day. Keep the faith and the faith will keep you.

Ian (52) PSC 89

, That's our destiny, that's what we all have to carry, PSC.I could understand you in one thing more than anything, you said I'm just 25. I know it aches deeply when you're so young with lots of

wishes and psc comes to you, I'm 20 and I had Whipple operation and Cholecyctectomy operations when I was 16 years oldddddddddd, my disease was so advanced that I had to accept Whipple, they removed most of parts of my digestive tract. I quit schooling for a year I

can't study well even now with the gift of psc, Fatigue. Honestly I have to confess I'm completely given up about future and it made me to leave my dearest. I'm in love with my queen but she doesn't know why I left her after our 2 years love. It was my wish to

be a father it was my wish to have a family blessed with love and they have me as a hope to rely on me but it's all gone and I truely love her that's why I left her because I'm different now because I'm

so sick and I'll be a memory not after a long but ... ! Love, was my purpose in life but herenow it's not.I'll be alone untill I take breath. many eyes cry for my destiny many ears listen to my words

many mouths talk to bring me hopesmany hearts ache for the oceans of my sorrow many dears pray for my lost healthlong time agoI'd been looking for people to cry to listento talkto pray

to do anything for meto tell me I'm not failed to tell me I won't dieIt was my wish to make the BESTsbut now it's just a chance to breathe no matter how.I've forgotten how to smile since then

Maybe it's the answer to a friend asking me to smile.oneday I found there's no more need to have listening ears to have crying eyesto have talking mouths but I saw it's just PSC who should listen who should cry and talk

Another wishI don't want anyone understanding I want my PSC to understand my tears I want my PSC to remember my forsaken loveI want my PSC to go before I doWill someone come tonight from the sky to answer?

that Why me?I found a reason to smilethat it's meIt's me who's suffering not my dears So I smile to my destiny and their tearsAnd I'm happy with their healthNo matter how short my life will be

but it matters that how wide it iseveryone knows you're not deserved for such a pain at this age. I pray for you to get well soon.i hope you liked my poemMelvyn(20 y/o, Tehran- IR, PSC 2005)

Whipple n Cholecyctectomy

>> 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> -- Ian Cribb former P.Eng. (resigned in good standing)