Update by Barb MONDAY, SEPTEMBER 08, 2008 01:54 PM, CDT

[Guest guest]

Because Barb asked " So….please stop posting updates to the group from our Caringbrige page. " (although by the replies it seems many members life having the updates posted), I'm not posting the update but just the notification and the link.

For update goto http://www.caringbridge.org/visit/ken

[Guest guest]

Barb, Ken and Penny,

Please do not stop the updates......I watch for them everyday as I am wondering how you are doing.....You are in my prayers all the time. I have learned so much from all of you that I can't believe it.....When I was first diagnosed in Feb. 2008.....I was scared, had no idea what this thing called PSC was all about but knew I had to learn about it fast and I started searching the internet.....I was really scared by what I read on there then I found this group and I wrote and asked some questions and I got some beautiful reply's.....sure brightened my day.....I read everything I could on the chat group and when I went for a second opinion to a Hep. at the University of Wisconsin Madison, Dr. Mussat said" Boy, you did your homework didn't you". He came into the room to see me with a manila envelope and 2 sheets of blank paper....this was on a Thursday and by the time he left me he had a folder full of my tests which I brought with me and I was scheduled to be in the hospital on Monday for some more tests.....I ended up in the hospital for 5 days of tests and I know this would not have moved as fast as it did if I had not found this group and knew the right questions to ask......It is people like you that gave me the questions and the knowledge of what this is all about.......I pray you keep us posted and I also pray for your recovery.....CJ

psc 08

[Guest guest]

To Barb and Ken -

I thank you both for sharing your lives with us. Barb, thank you again and again for sharing knowledge and information with us. You are both in my thoughts every day.

To Ian and Penny -

The caring bridge postings have been wonderful, as it is hard for me to access them. Having them posted has been a great gift.

To Everyone -

I share the appreciation for the entire PSC group, which is a family. Like a family, I hate these times of discord, yet the wonderful comments that have been expressed show the value we place with this group.

I too hope we can continue to share the great things in each person's life, as well as supporting each other through difficult times.

Joanne H

(, Ca., mom of , 18, UC/PSC 2-06)

Ian,

You’d better not post any of my updates either! Anyone who wants them for themselves can go to the same caringbridge site, Thank you

Penny T

..

[Guest guest]

Joanne,

I too like having the updates posted, but will follow the request of anybody who doesn't want me to copy from their caringbidge/carepages updates. I will just post the notification that a new update has been recieved and a link to the website. I have received permision form Ken to copy from his carepage updates (different from Barb's caringbridge updates), so I will copy and post those. I'm curoius about the attached message to me from Penny. I hadn't seen that before in a posting or email from Penny.

Ian

To Barb and Ken -

I thank you both for sharing your lives with us. Barb, thank you again and again for sharing knowledge and information with us. You are both in my thoughts every day.

To Ian and Penny -

The caring bridge postings have been wonderful, as it is hard for me to access them. Having them posted has been a great gift.

To Everyone -

I share the appreciation for the entire PSC group, which is a family. Like a family, I hate these times of discord, yet the wonderful comments that have been expressed show the value we place with this group.

I too hope we can continue to share the great things in each person's life, as well as supporting each other through difficult times.

Joanne H

(, Ca., mom of , 18, UC/PSC 2-06)

Ian,

You'd better not post any of my updates either! Anyone who wants them for themselves can go to the same caringbridge site, Thank you

Penny T

..

-- Ian Cribb P.Eng.