update

March 12, 1999

Well my dear friends, I am finally beginning to feel like " me " again. I

came through the day with much less pain that I've been experiencing

recently and in much better spirits also.

Tomorrow I have an appointment with a new GYN and am very hopeful that

it will be a positive and encouraging experience. I will certainly post

after the meeting to let you all know how it goes.

I want to thank each and every one of you for your well wishes, your

messages, your e-greetings, your phone calls, your prayers and your

general love and concern for me. I honestly feel blessed for having

such a great group of women as my friends and supporters. Having vulvar

vestibulitis is certainly not something I'm glad of, but I am so happy

that it brought me to meet all of you.

I want to thank my trusty co-moderator for doing a great job while I was

bearing through the pain. Thanks !! And thanks to all of you

for interacting so cooperatively, intelligently and supportively while I

was 'under the weather'. I just keep smiling as I type this knowing

what a great group of women we've got here!!! :) :)

Okay - I better go before I gush all over the place -

Love,

Heidi

(List Owner/Co-Moderator, fellow sufferer, recent 'sickie')

March 24, 1999

Good luck with your hysterectomy Beckie! From Deb at DLitzFletc@...

September 24, 2000

Do you know why she isn't posting to the group anymore? Does she want to

forget about PSC and move on. It would be nice to hear from some successful

stories.

Peg

update

and I talk outside the group (strangely enough we found out she used

to live near me and shopped at the same farm market so we yak a lot)--she

went back to work last week!!!!

Another wonderful success story.

Penny

P Alfeld wrote:Penny,

> We'll be praying for her. By the way, have you or anyone else heard from

> I keep thinking about her.

> Peg

September 24, 2000

Do you know why she isn't posting to the group anymore? Does she want to

forget about PSC and move on. It would be nice to hear from some successful

stories.

Peg

update

and I talk outside the group (strangely enough we found out she used

to live near me and shopped at the same farm market so we yak a lot)--she

went back to work last week!!!!

Another wonderful success story.

Penny

P Alfeld wrote:Penny,

> We'll be praying for her. By the way, have you or anyone else heard from

> I keep thinking about her.

> Peg

September 24, 2000

That makes sense, so Penny when you hear from her please keep us informed.

Thanks.

Peg

Re: update

It would be nice to hear from occasionally. But I

wouldn't expect her to be back as an active member for a while

and maybe never. It can take a while to get your life going

again and that should be 's top priority. I didn't start

contributing to this group until I was 14 months

post-transplant.

Tim

--- PR Weller wrote:

> and I talk outside the group (strangely enough we found

> out she used to live near me and shopped at the same farm

> market so we yak a lot)--she went back to work last week!!!!

> Another wonderful success story.

>

> Penny

__________________________________________________

September 24, 2000

That makes sense, so Penny when you hear from her please keep us informed.

Thanks.

Peg

Re: update

It would be nice to hear from occasionally. But I

wouldn't expect her to be back as an active member for a while

and maybe never. It can take a while to get your life going

again and that should be 's top priority. I didn't start

contributing to this group until I was 14 months

post-transplant.

Tim

--- PR Weller wrote:

> and I talk outside the group (strangely enough we found

> out she used to live near me and shopped at the same farm

> market so we yak a lot)--she went back to work last week!!!!

> Another wonderful success story.

>

> Penny

__________________________________________________

September 24, 2000

It would be nice to hear from occasionally. But I

wouldn't expect her to be back as an active member for a while

and maybe never. It can take a while to get your life going

again and that should be 's top priority. I didn't start

contributing to this group until I was 14 months

post-transplant.

Tim

--- PR Weller wrote:

> and I talk outside the group (strangely enough we found

> out she used to live near me and shopped at the same farm

> market so we yak a lot)--she went back to work last week!!!!

> Another wonderful success story.

>

> Penny

__________________________________________________

September 24, 2000

It would be nice to hear from occasionally. But I

wouldn't expect her to be back as an active member for a while

and maybe never. It can take a while to get your life going

again and that should be 's top priority. I didn't start

contributing to this group until I was 14 months

post-transplant.

Tim

--- PR Weller wrote:

> and I talk outside the group (strangely enough we found

> out she used to live near me and shopped at the same farm

> market so we yak a lot)--she went back to work last week!!!!

> Another wonderful success story.

>

> Penny

__________________________________________________

September 25, 2000

Penny,

That's good to know I've been wondering about her too!

Dianne A.

September 25, 2000

, I am personally glad you are posting. I think when I found this

site, late June, I picked up bits and pieces of your story. It clicked when

I heard the name Handi. This is the wonderful gal that donated half of her

liver to you. It is heartwarming to hear stories of such unselfish

sacrifice. It also pleases me to hear success stories such as yours.

I came to this site after reading one dismal PSC site after another, and

none of the information was giving me the shred of hope I was looking for.

When I stumbled onto this site, you would have thought I discovered gold. I

was so elated. The posts I was reading was from people who were beating

odds and statistics. I soon discovered the immense capacity for sharing

love even though we all had every right to whine and complain.

from Michigan (It's Fall)

Thanks for thinking of me. I am so sorry that my prior messages didn't

make it to the group. I know I didn't post often, but I did try to keep

up.

Take care,

in NH

Tx 6-9-00

September 25, 2000

Hi ,

Welcome back! I, too, post to the egroups site because I get too

much email between this and my genealogy email. Glad to hear you'e

feeling well and that your foot is better. Congrats on being a

grandma. Please say hello to Handi for us (me and Ed) when you see

her.

Gracie and Ed

September 25, 2000

,

I'm glad to hear you are doing so well. Keep up the positive attitude.

Eileen

September 25, 2000

-

I am so happy things are going so well for you. In spite of the " glitches, "

you seem to have done so well. I am really happy for you. Handi,

also--bless her heart.

My prayers remain w/you both

Laurie

Update

>

> Hi, all,

> My ears must have been burning because last Friday I posted an update to

> the list from the e-groups site. Because of the amount of mail on this

> list, I decided about a month or so ago to read the messages at e-groups

> rather than get the messages on my server. My server had also posted

> that after a certain volume of mail before I downloaded the mail, they'd

> bounce mail back. So, I thought this would work. Actually, I don't

> know what happened, but none of the messages I sent through the e-groups

> site reached the list. I wasn't aware of this until Penny just e-mailed

> me this weekend, and I got the latest psc digest. When I noticed that

> everyone was wondering what happened to me, I went back to the e-groups

> site and lo and behold none of the mail I had posted to the group was

> there. So, I don't know if this is an e-groups problem, or if I just

> don't know how to send it. However, I decided last Friday that I just

> didn't feel connected enough with all of you when I just read the posts

> at e-groups occasionally, so I am now trying out getting the posts in

> digest form. I'm back!

>

> Now for an update. I am doing just great! And I really mean that...I

> wake up in the morning and think... " Is this what it is like to not have

> the PSC anymore? " My energy is back, although I know I am not

> completely over the surgery...I do tire at the end of a busy day. But

> overall, it is amazing.

>

> There have been two small glitches. I got a pulled muscle in my

> chest..not related to transplant, so I have to be careful about

> exercise. I was up doing aerobics with Jane Fonda (an old '80's tape I

> had), and I exacerbated the pulled muscle, so my primary care doc nixed

> everything but walking. That's probably the most nagging problem.

>

> And then I got a dropped foot from a pinched nerve. This happened when

> my weight fluctuated so quickly. I had severe edema in my legs, and I

> dropped 25 pounds in one week in July after the edema went down. So, at

> that time, a nerve apparently got pinched. Well, I just saw my

> neurologist at New England Med, and he was pleased with the improvement

> in the foot since July. He thinks the problem will resolve itself over

> the next few months. That was great news for me. I really want to go

> hiking in the New Hampshire woods.

>

> I am now slowly returning to work. I haven't been able to work since

> January. I work part time now, but soon I hope to be back full time (by

> January at the latest).

>

> Something wonderful happened in June, besides my transplant! My

> daughter was here with me at the time of transplant (as was my son).

> The week after she returned home, she got pregnant. I am going to be a

> grandma for the second time in late March, 2001. I am so excited. In a

> few weeks Misha will know the sex, and I can start knitting baby things

> in earnest. Since they live on the outskirts of D.C. (in land), I

> think I'll have to knit cotton baby things...It will be too hot for

> woolens.

>

> I haven't seen my grandson for over a year . He is now four. and

> I are planning to be in Md. over Thanksgiving, and I can't wait. I was

> tied to Boston for so long, that this trip will be a treat. I am making

> a Halloween costume for Caleb (age 4) now.

>

> Handi will be here in early December. New England Med wants her to have

> a catscan to measure liver volume, just to be sure that her liver grew

> back okay. She's been doing just great, and she's back to doing poodle

> rescue and training her dogs. The last time I heard from her, she had

> nine miniature black poodles running around her house, six of them from

> poodle rescue waiting to be adopted. Her energy is just amazing.

>

> I wonder about this cell memory stuff....Last Saturday I saw this cute

> little poodle, and I couldn't keep my eyes off of him...That's never

> happened before...who knows?

>

> So, that's what is up for me.

>

> I have been trying to keep up with everyone. Laurie, I posted that I

> have had candles burning for you for some time, I think of you often and

> try to send healing energy your way. Just know that you are in my

> thoughts daily.

>

> And Peg, if you talk to , let her know that there's a candle

> burning for her also. I can't believe what she has had to endure. I

> remember when she went for transplant, how excited I was for her. But

> she has endured more than I think I could stand. Life is just unfair

> sometimes, it seems. I wish the best for her, and I will e-mail her

> personally. Do you know if she is receiving e-mail?

>

> , I am so glad your brother is back at school and recovering

> well. There will be a candle burning for him as well.

>

> Thanks for thinking of me. I am so sorry that my prior messages didn't

> make it to the group. I know I didn't post often, but I did try to keep

> up.

>

> Take care,

> in NH

> Tx 6-9-00

>

September 26, 2000

Walderich wrote:

> So, I don't know if this is an e-groups problem, or if I just

> don't know how to send it.

One thing that always throws me off when I post from the egroups site is

that when you hit send, it brings up another screen with your email for

you to proof.... then you have to hit send again to get it to actually

send it. Sort of a pain for me, 'cause I've gotten used to proofing my

messages before I hit send, so I don't really need the second screen!

athan

September 26, 2000

,

I'm so glad to hear your doing well. It's so nice to hear good

news. It's nice to know there is hope. I wish you well.

Congradulations on being a Grandma again.

in CT wife of Tony Dx w/ Crohns 1979. Dxed with PSC 1992

January 2, 2001

Hi ! I am very proud of you! I hate what you have to go through at

your age. I think it is wonderful that you have looked for support, asked

questions and have been so involved with s care. You are a sweetie:)

You are a great example for the younger generation! I dont show my daughter

Keegan (17 yrs old) our group emails but I believe that she would learn alot

from reading your post. Shes a great girl and very sensitive. I think that

she would love to visit with you if you need someone closer to your age to

visit with. Shes been through it all with me and and understands what

you are dealing with. In a way....shes like my little boys second mother

when things get hard around here. She pitches in, gets stressed just like

the rest of us. If you wish to talk to her let me know. You would like her

alot:) She is very intelligent and fun. Ok....so I talked enough for now!

Take care and give our love and prayers!!! Sincerely, wife of

dx 97

January 2, 2001