My sabbatical-please read

[Guest guest]

Dear group,

As most of you know I've been hanging around this group since 2002 (if memory serves me). I had survived 18 years (at that point) of PSC without having contact with another PSCer, until I found this group. As you can imagine this group brought my world to life. I got necessary guidance from Jonathon and others, and Aubrey did a great deal of mentoring (thank you, Aubrey!). Maureen(iebeaniebobeanie) showed me what true love was (Jim's SO lucky), and how priceless an advocate is and her entire family reminded me of why I'm a believer and what power there is in faith! Ricky's (and others) vision of the foundation brought with it a whole new hope of awareness of our orphaned disease (in 1984 ALF had a few sentences describing it and NORD had only one paragraph), organ donation and a positive focus for PSC patients. I was invigorated by Lee's boundless energy, and touched by our heart-to-heart conversations where her huge heart sat on her shoulder and I knew that she genuinely cared about my tx plight. I'll also never forget Joanne Griemes two hour trip to be with me during my evaluation at CCF - her support and laughter were priceless.

Now to my other buddies - my male counterparts and Bill - where the laughter and big hearted kindness NEVER waiver! Then I have and Ali who've shown me what true friendship is as well as boundless strength! They give women a great name! Added later to the mix was who really should be one of Santa's elves -- she's always in "helper" mode (365 days a year!). Last, but certainly not least, is , our treasured founder of this group. I'm so grateful for her insight and motivation to create such a haven for us! On a personal note, she is one of the funniest, kindest people I've met here, and the bestest :-) mom's in the world. She's beautiful inside and out! I genuinely love you guys - yes, that includes you Maureen, my self appointed guardian angel! Thank you! Thank you! Thank you!

I'm writing all of this because I know it's been a long time since I've fully participated in this group and because I've failed to do so I've also failed to inform all the newcomers what a wonderful place they've discovered. It's not just a "support group" it's filled with wonderful people that have something to add to your life. Newcomers, I promise you if you get involved here and in the Partners Seeking a Cure Foundation, you will not regret it!!! I'm also writing because I believe it is now time for me to take some time away. The H.E. is making it difficult for me to trust what I say and/or write and I find myself hibernating frequently to avoid offending others or just plain embarrassing myself. Please, don't misunderstand I have no plans of leaving the group for good; I think of it more as a sabbatical. For those of you who wish to still have contact (if you are that patient and brave) you may email me privately. It may take longer to get a response from me, but I will answer as quickly as possible.

Also, I encourage those who can make it to the conference to do so, again, you will not regret it!. My daughter and I attended in 2005 and 2006 and it was an amazing time. This year, I don't believe we will be able to make it, although I've not completely given up hope.

One last thing, I have another potential donor. He has been a friend of mine since I was 17 and he was 19. He is a minister and has no doubts about his decision and has made the tx team aware of it. (He offered to be a live liver donor for someone a few years back, too, but it turned out that it wasn't necessary.) His evaluation is to begin 3/7 and continue on 3/9. I will update my caringbridge website as things progress. I am grateful to have so many people willing to be my donor (this is the 4th volunteer including my brother Kerry). If this doesn't get done it won't be for lack of trying, that's for sure!

I want to assure everyone that if there is anyone that I've left out of my award style thank you, it's because my brain is only working on 2 of 6 cylinders (so to speak) not because you aren't memorable! This group is amazing! Keep sharing, loving, living and holding the faith. As is stated, "Together in the fight...Whatever it takes!!!"

Looking forward to returning to the group in the not-too-distant future -- fully equipped with a new liver and a better brain!

Hugs to all,

(MO)

PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejsAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

:

For someone who is supposedly working her brain at 2/6 you are much better than

I at 6/6. Yuk. Yuk.

Your ability to communicate and keep all the facts together is amazing.

Don't give up the ship you are strong and have a lot of friends and family

supporting you.

Remember: Together in the fight;whatever it takes.

Hugs,

dee

[Guest guest]

,

If you can write this well on 2 cylinders I can't imagine you have HE. Best

of luck to you, especially with getting a living donor. It sounds as though

you are very blessed to have so many people willing to be a donor for

you.

-Marie

>Dear group,

>As most of you know I've been hanging around this group since 2002 (if

>memory

>serves me). I had survived 18 years (at that point) of PSC without having

>contact with another PSCer, until I found this group. As you can imagine

>this

>group brought my world to life. I got necessary guidance from Jonathon and

>others, and Aubrey did a great deal of mentoring (thank you, Aubrey!).

>Maureen(iebeaniebobeanie) showed me what true love was (Jim's SO lucky),

>and how

>priceless an advocate is and her entire family reminded me of why I'm a

>believer and

>what power there is in faith! Ricky's (and others) vision of the

>foundation

>brought with it a whole new hope of awareness of our orphaned disease (in

>1984

>ALF had a few sentences describing it and NORD had only one paragraph),

>organ

>donation and a positive focus for PSC patients. I was invigorated by Lee's

>boundless energy, and touched by our heart-to-heart conversations where her

>huge heart sat on her shoulder and I knew that she genuinely cared about my

>tx

>plight. I'll also never forget Joanne Griemes two hour trip to be with me

>during my evaluation at CCF - her support and laughter were priceless.

> Now to my other buddies - my male counterparts and Bill - where

>the

>laughter and big hearted kindness NEVER waiver! Then I have and Ali

>who've shown me what true friendship is as well as boundless strength!

>They

>give women a great name! Added later to the mix was who really

>should be

>one of Santa's elves -- she's always in " helper " mode (365 days a year!).

>Last, but certainly not least, is , our treasured founder of this

>group.

>I'm so grateful for her insight and motivation to create such a haven for

>us!

>On a personal note, she is one of the funniest, kindest people I've met

>here,

>and the bestest :-) mom's in the world. She's beautiful inside and out! I

>genuinely love you guys - yes, that includes you Maureen, my self appointed

>guardian angel! Thank you! Thank you! Thank you!

> I'm writing all of this because I know it's been a long time since

>I've

>fully participated in this group and because I've failed to do so I've also

>failed to inform all the newcomers what a wonderful place they've

>discovered.

>It's not just a " support group " it's filled with wonderful people that have

>something to add to your life. Newcomers, I promise you if you get

>involved here

>and in the Partners Seeking a Cure Foundation, you will not regret it!!!

> I'm also writing because I believe it is now time for me to take

>some

>time away. The H.E. is making it difficult for me to trust what I say

>and/or

>write and I find myself hibernating frequently to avoid offending others or

>just plain embarrassing myself. Please, don't misunderstand I have no

>plans of

>leaving the group for good; I think of it more as a sabbatical. For those

>of

>you who wish to still have contact (if you are that patient and brave) you

>may

>email me privately. It may take longer to get a response from me, but I

>will

>answer as quickly as possible.

> Also, I encourage those who can make it to the conference to do so,

>again, you will not regret it!. My daughter and I attended in 2005 and

>2006 and it

>was an amazing time. This year, I don't believe we will be able to make

>it,

>although I've not completely given up hope.

> One last thing, I have another potential donor. He has been a friend

>of

>mine since I was 17 and he was 19. He is a minister and has no doubts

>about

>his decision and has made the tx team aware of it. (He offered to be a

>live

>liver donor for someone a few years back, too, but it turned out that it

>wasn't

>necessary.) His evaluation is to begin 3/7 and continue on 3/9. I will

>update my caringbridge website as things progress. I am grateful to have

>so many

>people willing to be my donor (this is the 4th volunteer including my

>brother

>Kerry). If this doesn't get done it won't be for lack of trying, that's

>for

>sure!

> I want to assure everyone that if there is anyone that I've left out

>of

>my award style thank you, it's because my brain is only working on 2 of 6

>cylinders (so to speak) not because you aren't memorable! This group is

>amazing!

>Keep sharing, loving, living and holding the faith. As is stated,

> " Together

>in the fight...Whatever it takes!!! "

>

>Looking forward to returning to the group in the not-too-distant future --

>fully equipped with a new liver and a better brain!

>

>Hugs to all,

> (MO)

>PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05

>for details see _www.caringbridge.org/visit/melaniejs_

>(http://www.caringbridge.org/visit/melaniejs)

>

><BR><BR><BR>**************************************<BR> AOL now offers free

>email to everyone. Find out more about what's free from AOL at

>http://www.aol.com.

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