Re: I just need to talk/

[Guest guest]

,

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 hopes

many hearts ache for the oceans of my sorrow

many dears pray for my lost health

long time ago

I'd been looking for people

to cry

to listen

to talk

to pray

to do anything for me

to tell me I'm not failed

to tell me I won't die

It was my wish to make the BESTs

but 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 eyes

to have talking mouths

but I saw it's just PSC who should listen who should cry and talk

Another wish

I don't want anyone understanding

I want my PSC to understand my tears

I want my PSC to remember my forsaken love

I want my PSC to go before I do

Will someone come tonight from the sky to answer?

that Why me?

I found a reason to smile

that it's me

It's me who's suffering

not my dears

So I smile to my destiny and their tears

And I'm happy with their health

No matter how short my life will be

but it matters that how wide it is

everyone 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 poem

Melvyn

(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

>