- re: I'm glad you're here every day, keeping up with the group!

[Guest guest]

, please do not take this as any

criticism about your friend, but I humbly beg to differ… reading these

support group postings each & every day is NOT self-torture… it’s

many things, but it doesn’t have to be classified as “torture.”

If that were true, then how could coming here ALSO be a means to one’s empowerment?

Or a means to cope… or a place to vent frustrations… or where we

can learn to be extraordinary medical advocates? HERE is where the devastated,

just-recently-diagnosed can learn no, PSC is NOT necessarily a death sentence (your

son is only 25, & he was diagnosed 7 years ago, at age… what,

18?), that there are, in fact, PSCers here ( & their loved ones) who are

much further down the road (as are the newbies who have just entered their

learning curve), yet still doing relatively well (as Arne would say!). This

is a forum whereby we can commiserate, laugh, cry, network, compare medical

notes, research ( & raise funds for research!). There’s a certain

joy (at least, for me) whenever Arne posts a photograph of a gorgeous, sunset on

the lake where he’s been canoeing, or when Barb posts a picture of one

whopper of a fish that Ken’s caught, or when showed us pictures

of her newborn baby. That’s equivalent, to me, of a certain

hope. For those who are battling PSC alone, HERE is where they can find a

sense of family, from a motley crew… including many fine, sincere people

who truly care.

There are so many positives about this

place, I believe that, collectively, the power of the plusses far outweigh any of

the negatives, and it’s like a balm to the occasional sadnesses & pain.

It’s reminiscent of the time when, not

very long after Jim’s & ’s transplant, Jim’s elderly

aunt came down this way, to Jim’s mom’s house, for a visit. We

don’t live very far away from Jim’s mother, so, as our paths

crossed (as it frequently does), Jim’s aunt began questioning me about the

transplant experience. My emotions were still fresh & raw (despite the

good outcome for both donor & recipient, despite the surgery being nothing

short of miraculous in the overall scheme of things, it’s all nevertheless

quite a stressful experience!). I must admit, as I spoke with her, my

eyes welled up a bit… as I was trying to help her understand the

magnitude of it all… how HARD it was to finally “reach” transplant

& travel through that doorway to a restored health for Jim. And how

the experience proved a little harder on my “mother’s heart (

did, after all, enter the equation as his dad’s donor very late, compared

to the years & years Jim & I dealt with his chronic illnesses) than it

did on my “wife’s heart” (I think because this group helped

prepare me for what Jim would be facing).

Her reaction to my emotions came in the

form of a question: “The surgery’s over, but from your reaction, do

you think perhaps you obsess a little too much about all this?”

In a word, sheesh. It’s times

like that when I realize I cannot expect “all” others to grasp it.

Perhaps it’s the “Indian-in-the-moccasins” thing (you know…

unless they themselves have walked in your shoes…). After all, the

only people who genuinely, deep-down understand my asthma are… other

asthmatics.

I’m very glad you are here for .

And I know for certain he’s blessed to have you here, checking the posts,

faithfully… yes, with a mother’s hope that one day you might read a

post about a closer-to-the-PSC-cure breakthrough.

PSC “moms” are a very special

kind of hero(ine), if you ask me!

Three cheers for you!

Maureen (wife of Jim: UC & elevated

LFTs '84; PSC '96; LRLTx # 36 on 12/7/01 at USC in CA; donor son doing well;

post-tx incisional hernia surgical repair 1/03; multiple post-tx skin cancer

issues presenting 18 months out; sporadic post-tx UC issues -- which means Jim

sees his dermatologist every 90 days & undergoes colonoscopy every 24

weeks... indefinitely; in learning curve for possible colectomy down the

road?); ecstatic empty nesters & delighted doters to grandsons Stryder

& Indiana... who get a wee sibling this November! We should be

finding out any day now whether it’s a boy or girl?)

From: [mailto: ] On Behalf Of jterry05@...

Sent: Wednesday, June 27, 2007

10:20 AM; To: ; Subject: Dr. Whitington

Dear

Group,

…….I am not a frequent

poster, but keep up daily with the group. A friend asked me why I torture myself reading the post everyday. I told her I think

deep down I'm going to open up a message one day and there will be a huge

breakthrough in getting closer to a cure. I'm a very impatient person,

especially when it comes to my children and their well being.

Thanks,

Terry ( 's mom, diagnosed 3/2000 age 25 ).