RE: The Life Of PSC (POEM)/(Short Story) My feelings/MY FEELINGS

[Guest guest]

Or, you could get hit by a bus tomorrow. I'm not being flippant, it IS true. One of our founding members Norm Hoffman fought PSC, won masters-class bicycle races, advocated healthy living, and died at 60 after being hit by a car on his bicycle.

http://www.vrp.com/articles.aspx?ProdID=art510 & zTYPE=2

One of the early members did lose his spouse, but not to PSC. " She feared PSC greatly, and died of something else " .

The UK's leading PSC researcher (Dr. Chapman) has frequently said you are more likely to die with PSC rather than of PSC.

This is a great time to be alive - really! There are nearly daily advances in medicine, from split liver transplants (unheard of even 10 years ago), living donor transplants (unheard of 15 years ago), treatments for cholangiocarcinoma (Mayo protocol 5 years now), stem cell research (your own stem cells), xenotranplantation (grow your liver in an animal), liver dialysis, gene therapy - the list goes on and on. My father died in 1965 at 48 - even 5 years later bypass surgery would have been available.

Live for the moment - you have the opportunity to enjoy your daughter's childhood NOW. Many people don't even get that.

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

" Remember: you never know if a bus will run over you tomorrow. "

________________________________

From: [mailto: ] On Behalf Of amandandme123

....I am SO SCARED OF DYING!!! I want to see my daughter grow up, finish

school, colledge, get married, and have a grandchild. I feel like an

outer shell and my brain is navigating my body. I can't stand to look

at the scaring from gaining weight. I have the hair loss that is

really putting me down as well.

I turn 35. And then I die...

[Guest guest]

very well said Arne!

I was told by a friend of mine several years ago that it would be better to die

while living life than to live life waiting to die. That really opened my eyes.

There are days that I think that I want to give up and just stop fighting. I

want to give in to being tired and not feeling well but then I kick myself in

the backside and make myself get up and go again. This can't work for everyone

but it works for me. I have been living with PSC since 2001. I work a

full-time job and I am going to school part time to become a registered nurse.

One of the nurses that I work with told me that she didn't know why I was going

to school because there was no way my body could hold up to my schedule. Well I

am very close to proving her wrong!!

I celebrated my 45th birthday last Tuesday (I'm only claiming 36 of those 45).

I was also a foster mom until December of '07. I stopped doing that because of

work and school, not the PSC. I am not at all certain that I will live to see

grandchildren but it isn't because of PSC. It is because my children (aged 27,

25 and 23) are not getting out there and meeting that special someone, getting

married and making it happen. It is much more likely that I will die of old age

and without grandchildren. I'm not trying to make light of your fear

because I remember mine too well but you have so much life right in front of

you. Don't let this disease keep you from living it.

Right at this very moment, I am working OT and I am so sick with Crohn's that I

could just cry but if I hang on - then the pain will pass and I will get through

it. I will get this work done and I will allow the time to feel rotten later

tonight. Again this is not the approach for everyone but it is for me.

Speaking of which...............I better get back to work!!

Hang in there and don't give up.

in Texas

PSC '01

>>> ALM stonehollowmn@...> 5/24/2008 10:28 AM >>>

Or, you could get hit by a bus tomorrow. I'm not being flippant, it IS

true. One of our founding members Norm Hoffman fought PSC, won

masters-class bicycle races, advocated healthy living, and died at 60 after

being hit by a car on his bicycle.

http://www.vrp.com/articles.aspx?ProdID=art510&zTYPE=2

One of the early members did lose his spouse, but not to PSC. " She feared

PSC greatly, and died of something else " .

The UK's leading PSC researcher (Dr. Chapman) has frequently said you are

more likely to die with PSC rather than of PSC.

This is a great time to be alive - really! There are nearly daily advances

in medicine, from split liver transplants (unheard of even 10 years ago),

living donor transplants (unheard of 15 years ago), treatments for

cholangiocarcinoma (Mayo protocol 5 years now), stem cell research (your own

stem cells), xenotranplantation (grow your liver in an animal), liver

dialysis, gene therapy - the list goes on and on. My father died in 1965 at

48 - even 5 years later bypass surgery would have been available.

Live for the moment - you have the opportunity to enjoy your daughter's

childhood NOW. Many people don't even get that.

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

" Remember: you never know if a bus will run over you tomorrow. "

________________________________

From: [mailto: ] On

Behalf Of amandandme123

....I am SO SCARED OF DYING!!! I want to see my daughter grow up, finish

school, colledge, get married, and have a grandchild. I feel like an

outer shell and my brain is navigating my body. I can't stand to look

at the scaring from gaining weight. I have the hair loss that is

really putting me down as well.

I turn 35. And then I die...

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[Guest guest]

Arne,

I love your attitude.

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of ALM

Sent: Saturday, May 24, 2008 17:29

To:

Subject: RE: The

Life Of PSC (POEM)/(Short Story) My feelings/MY FEELINGS

Or, you could get hit by a bus tomorrow. I'm not being

flippant, it IS true. One of our founding members Norm Hoffman fought

PSC, won masters-class bicycle races, advocated healthy living, and died at 60

after being hit by a car on his bicycle.

http://www.vrp.com/articles.aspx?ProdID=art510 & zTYPE=2

One of the early members did lose his spouse, but not

to PSC. " She feared PSC greatly, and died of something else " .

The UK's

leading PSC researcher (Dr. Chapman) has frequently said you are more likely to

die with PSC rather than of PSC.

This is a great time to be alive - really! There are

nearly daily advances in medicine, from split liver transplants (unheard of

even 10 years ago), living donor transplants (unheard of 15 years ago),

treatments for cholangiocarcinoma (Mayo protocol 5 years now), stem cell

research (your own stem cells),

xenotranplantation (grow your liver in an animal),

liver dialysis, gene therapy - the list goes on and on. My father died in

1965 at 48 - even 5 years later bypass surgery would have been available.

Live for the moment - you have the opportunity to enjoy your

daughter's childhood NOW. Many people don't even get that.

Arne

57 -

UC 1977 - PSC 2000

Alive

and well in Minnesota

" Remember: you never know if a bus will run over you

tomorrow. "

________________________________

From:

[mailto: ] On Behalf

Of amandandme123

....I

am SO SCARED OF DYING!!! I want to see my daughter grow up, finish

school,

colledge, get married, and have a grandchild. I feel like an

outer

shell and my brain is navigating my body. I can't stand to look

at the

scaring from gaining weight. I have the hair loss that is

really

putting me down as well.

I

turn 35. And then I die...

[Guest guest]

I have asked myself the question, what kind of example am I being for

my children. If my children were diagnosed with PSC or something

else in the future I believe how I live out my life how ever long or

short, will directly influence how they deal with struggles in their

life.

Yes, we have frank talks about life and death. Actions speak louder

than words. Yes, I have times I cry and want to just give up. I have

to make myself put a time limit on it. This is my life. This is my

childrens life.

I want to make it the best I can for them, I can not change

yesterday, I do not know what the future holds (and cannot control it

either) But I can make a difference today, by living today to the

fullest of my ability with a smile on my face, and actions of

kindness to others. I see in my children a compassion for others

that is beyond their years, because of having to " deal " with my

illness. What a gift to the world my children will be in a world

where so many are so self centered and donot even think of what

others are going through.

Never give up, never give in.

PSC 05/07 Listed