Re: off topic question re endurance

[Guest guest]

This is an off topic question, but after reading many messages over the past year, and gettimg to know you, I have a question for which I would like an answer.

Everyone, PSCers and family members alike, seem to have such courage, stamina, intestinal fortitude (no pun intended), and a matter-of-fact attitude regarding PSC. You do research, share with one another, laugh and cry together, and just keep moving forward with determination! This amazes me, and I am in awe of each and every one of you!

From where does this very special courage come?

Sincerely,

Chris

mother of Joe

[Guest guest]

Hi Chris;

I think that PSC also stands for " Persons with Special Courage " !

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/030)

> From where does this very special courage come?

[Guest guest]

-----Original

Message-----

From where

does this very special courage come?

Can only speak for

myself and my son Ken…… I don’t think (for us) it’s courage, or

anything remotely like that, it’s more like – what choice do we

have? We both have down days (even

weeks), but what can you do about it?

The PSC/UC isn’t going away, pity parties become boring after a

while, so….. to sort of quote Tom Hanks in Sleepless

in Seattle - I’m going to wake up each morning and get out of bed, remind

myself to breath in and out, until one day when I won’t have to remind

myself any more. We really don’t

have much of a choice, it’s sink or swim.

IMHO, you’re the

courageous one! I can’t even imagine

the kind of pain you’re going through and yet, here you are, encouraging us

and being our biggest cheer leader.

You are the amazing one.

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (33) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

_,___

[Guest guest]

> From where does this very special courage come?

As not only a PSC sufferer currently undergoing assessment for transplant

listing, but someone who has had a chronic immune deficiency all my life,

along with non-hogkins lymphoma in 2003, I can agree with Barb.

Strength comes from within. In any group of ill or suffering people,

strength is found within, and from friends and support. It doesn't matter if

you are a psc sufferer, have had cancer, or are physically disabled, there

is strength in all of us. A lot of people have said to me " i don't know how

you do it " , but sometimes you don't have a choice. You might have a cry, a

strong drink (not often) or just a big whinge over coffee with a friend, but

when it comes down to it, we must go on.

Courage seems hard to come by, but it's always hiding there, you just have

to dig deeper sometimes to find enough to go on.

Penny T (in Brisbane)

[Guest guest]

sorry the last email went through twice.

Penny T

[Guest guest]

Chris--

For me, I'm not sure I'm more courageous than anyone else. It's

amazing what you can do once your head is in the right place, but that

doesn't come easily or quickly.

My battle with PSC is approaching eight years now (after two years of

uncertain diagnoses), and it's still a struggle to keep a stiff upper

lip sometimes, especially when the fatigue sets in, when the cramps

and pain seem unbearable, etc.

A couple things have kept me going. First, it's my faith. I don't

want to bang anyone over the head with a Bible, but for me, being

involved with a healthy, well-balanced church has been a huge source

of strength.

Next, I try to keep in mind what is truly important to me. It's no

longer work, career, and financial stability. I want to see my kids

graduate high school and college. I want to be in the wedding party

when my sons get married. I want to be able to play with grandkids

someday YEARS from now. I want to be able to go away on special

vacations with my wife. And on and on and on. There is a lot to life

that I want to do, and I won't get there if I'm wallowing in

self-pity. No one loves a pity party more than I do, but I'm slowly

learning that they are not productive. So, the alternative is to

choose a positive response. I'm learning that I feel better

physically when I feel better emotionally. My emotional response to

PSC is a choice. I can get depressed and feel terrible, or I can take

a different path.

Finally, it's groups like this, PSC Partners, et al., that are a huge

blessing. No one appreciates what PSCers go through like other

PSCers. I'm learning that it's great to know that I'm not in this

fight alone. Stay involved.

Just my 2 cents.

Tom

PSC 1999

UC/Crohns 2005

>

> This is an off topic question, but after reading many messages over

the past year, and gettimg to know you, I have a question for which I

would like an answer.

>

>

> Everyone, PSCers and family members alike, seem to have such

courage, stamina, intestinal fortitude (no pun intended), and a

matter-of-fact attitude regarding PSC. You do research, share with one

another, laugh and cry together, and just keep moving forward with

determination! This amazes me, and I am in awe of each and every one

of you!

>

> From where does this very special courage come?

>

> Sincerely,

>

> Chris

> mother of Joe

>

[Guest guest]

Your attitude is admirable, Tom! Keep it up!

Chris

[Guest guest]

Hi I have been a quiet member of this group for the last year... I have kept up with the posts... and I have to say that you yourself have shown the most incredible courage and amazing ability to give of yourself. you define the word courageous. For me I would have to say courage born of necessity... for my son... I wish I knew... he seems to be able to 'take it on the chin' and keep going. I agree with 's suggestion that PSC stands for Person's with Special Courage. My thoughts are with you and your family. PennyPenny D (Australia)Mum of (17) UC 11/04, PSC 2/05

How would you spend $50,000 to create a more sustainable environment in Australia? Go to Yahoo!7 Answers and share your idea.

[Guest guest]

Tom

Let me say how much I enjoyed your written experiences

at Mayo Clinic. Because I have found myself wanting

for more information and physicians who have not been

in total agreement, I decided to go to Mayo in July.

I am looking for definitive answers and how close to

the " wall " I may be getting. Thank you for the

inspiration.

Phil

--- Tom wrote:

> Chris--

>

> For me, I'm not sure I'm more courageous than anyone

> else. It's

> amazing what you can do once your head is in the

> right place, but that

> doesn't come easily or quickly.

>

> My battle with PSC is approaching eight years now

> (after two years of

> uncertain diagnoses), and it's still a struggle to

> keep a stiff upper

> lip sometimes, especially when the fatigue sets in,

> when the cramps

> and pain seem unbearable, etc.

>

> A couple things have kept me going. First, it's my

> faith. I don't

> want to bang anyone over the head with a Bible, but

> for me, being

> involved with a healthy, well-balanced church has

> been a huge source

> of strength.

>

> Next, I try to keep in mind what is truly important

> to me. It's no

> longer work, career, and financial stability. I

> want to see my kids

> graduate high school and college. I want to be in

> the wedding party

> when my sons get married. I want to be able to play

> with grandkids

> someday YEARS from now. I want to be able to go

> away on special

> vacations with my wife. And on and on and on.

> There is a lot to life

> that I want to do, and I won't get there if I'm

> wallowing in

> self-pity. No one loves a pity party more than I

> do, but I'm slowly

> learning that they are not productive. So, the

> alternative is to

> choose a positive response. I'm learning that I

> feel better

> physically when I feel better emotionally. My

> emotional response to

> PSC is a choice. I can get depressed and feel

> terrible, or I can take

> a different path.

>

> Finally, it's groups like this, PSC Partners, et

> al., that are a huge

> blessing. No one appreciates what PSCers go through

> like other

> PSCers. I'm learning that it's great to know that

> I'm not in this

> fight alone. Stay involved.

>

> Just my 2 cents.

>

> Tom

> PSC 1999

> UC/Crohns 2005

>

>

> >

> > This is an off topic question, but after reading

> many messages over

> the past year, and gettimg to know you, I have a

> question for which I

> would like an answer.

> >

> >

> > Everyone, PSCers and family members alike, seem to

> have such

> courage, stamina, intestinal fortitude (no pun

> intended), and a

> matter-of-fact attitude regarding PSC. You do

> research, share with one

> another, laugh and cry together, and just keep

> moving forward with

> determination! This amazes me, and I am in awe of

> each and every one

> of you!

> >

> > From where does this very special courage come?

> >

> > Sincerely,

> >

> > Chris

> > mother of Joe

> >

>

>

>

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