Re: Relationships/, Cathy

May 17, 2006

Surely there must be others here who have seriouslu

> dated and married after a PSC Dx. Does anyone out there have any

> advice or support they can offer? Thank you.

All the advice you've gotten is great. NO ONE knows what the future

holds, with PSC or anything else, so I just aim for having a

fulfilling life. We all go to the same destination in the end- so

it's the journey that counts.

I started dating my (now) husband within weeks of my PSC diagnosis. He

recently told me that I thought my life was over at the time. I'm not

very good a spinning a positive viewpoint when I'm worried! Diagnosis

is a hard, emotionally, but it does get better. Ed's father had

recently died, after fighting MS for 14 years. So he might have run

from a warning about a chronic illness. But he didn't worry about it.

He was 22 at the time and had that blithe spirit of youth. I was 28,

not quite so youthful, but he was SO adorable...

He was incredibly supportive when I was freaking out about the docs

recent (abandoned) plan to put in external drains. He reminded me that

the Borg woman on Star Trek was quite sexy. And the great thing about

a spouse who passes the PSC test is that they tend to be great

parents! Ed is a wonderful father and husband. My life would be so

boring without him and my daughter.

, make sure your friend understands there are surgical

alternatives to total colectomy, that are continent. And that his PSC

may take a different course from his father's; people's symptoms and

time course vary a lot. Why should he face an uncertain future alone,

when you are willing to face it with him? Somehow I believe we can

pull up the strength to get through whatever comes. Good luck to all

of you.

Martha (MA)

43, UC, 1979, PSC 1992,

and STILL asymptomatic; with not-quite-dominant stricture

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