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Re: discussing PSC

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I have also had this experience -- my husband absolutely will not discuss

the fact that I may die. It may be that many man feel at a loss when

they cannot control certain situations. I'm positive that Jim was

in denial when I was very sick. You gotta love the optimism though........

Penny

cathyre123@... wrote:.

However

my husband

also gets furious when I even discuss the subject of dying, he

just will not accept that

it could be a possibility. We could always discuss

all subjects openly, until

this one, it is really hard not to be able to talk

to your husband about your

feelings.

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My Mike asked the question last night of how many Men

> that are supportive of wives with PSC are posting.

,

My husband isn't a member of this group mainly because he doesn't spend any time on the computer. He is very supportive of me and we have talked extensively about the future. He is my encourager and trainer and gets me off my duff when I would rather sit around. :)

Barby

married 21 years, mom of 5 sons (ages 9-20) KS

UC - dx in 1965 (11yo), total proctocolectomy with ileoostomy 1972, BCIR (continent ileoostomy)1994

PSC- dx in 1999

nordgren1@...

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, Cheryl, Cindi and Patti,

You have all contributed insight into this thread of discussion.

I think talking about the possibility of transplantation and/or

death is difficult at any time. I know that I am definitely into

denial or optimism (depending on your view), my wife and I did

not have any long discussions of what might happen due to PSC.

She was afraid of the transplant and of PSC - it took a while

for her to accept that a transplant was the best chance I had,

but that veers into another topic.

Even with this group to offer support, there is nothing like

being able to share with your partner. Getting the time to do

that is difficult. There are so many other demands during the

times you are both awake, especially if one is trying to avoid

the discussion. Ask for the time as a gift. Decide what you need

from your partner. Review what you will say and try to address

their fears as well as your own. Be positive, these are fears,

not the inevitable, that will help make the next time easier.

Tim R

__________________________________________________

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My Mike asked the question last night of how many Men

that are supportive of wives with PSC are posting.

ah, well........he got me. Other than Denver, I think

the rest of the males are the PSCers. Please correct

me if I am wrong, cuz I will use that to entice Mike

to at least lurk.

=====

in Michigan (Dx UC 1984, Dx MISSING COLON 1999, Dx PSC 1997, PSC symptoms

2000)

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Roy Toutant was the poster the PSCer. Only one other than

Denver I can think of.

Tim R

--- Baudoux-Northrup wrote:

> My Mike asked the question last night of how many Men

> that are supportive of wives with PSC are posting.

__________________________________________________

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He is my encourager and trainer and gets me

off my duff when I would rather sit around. :)

As is Mike, but he was questioning how many supporting

husbands actually post and read the mail. I forgot

about Roy (how my memory slips). Mike is very

supportive and gets me off my duff too, but there is

so much emotion good and bad here that I think he

needs to visit from time to time.

=====

in Michigan (Dx UC 1984, Dx MISSING COLON 1999, Dx PSC 1997, PSC symptoms

2000)

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Krooner1@... wrote:

>

> His favorite is when people tell him he looks good. I think most

> people are just very awkward around people with serious health

> problems.

Gracie,

I think you're right there, but it's not just health problems: it's

tragedy or things akin. There is a line in ph Conrad's Heart of Darkness

that always reminds me of the separation that " things akin " causes between

the afflicted and the rest of humanity. I love reading Heart of Darkness. I

read it every year with my AP English class and am continually amazed at it.

I look forward to seeing the new release of Apocloypse Now. Anyway, I too

find it strange when people tell me I look good. I llik awful most of the

time. But, I guess I look better than I did when my weight was down to 109. I

am now about 130 BTW I'm 5'5 " . My computer was off for two days while my

floor was being replaced due to water damage, so I'm late answering. I try to

be very forgiving of people saying dumb things since I say and do such dumb

stuff without meaning to.

Cheryl ID 42, PSC 4/01, UC 12/00, married 23 yrs. 3 girls: 22, 20, 13, 1

son 17, 1 grdau 2yrs, HS Eng teacher

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