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, thanks for the link w/info about milk thistle. And yes, one of

the blood tests was for TPMT activity.

>

> Hi Nick;

>

> Welcome to the group, and for your remarkable obervation that " It's a

> good reminder to think about what my priorities really are and try to

> live each day to the fullest. " What a wonderful positive attitude!

>

> I wish you all the best with the Azasan therapy (for the benefit of

> those who may not know this, Azasan is a name for azathioprine). I

> hope that you don't mind me asking, but in the blood work they are

> doing in preparation for putting you on azathioprine, are they

> looking for thiopurine methyltransferase (TPMT) activity?

>

> Several members of the group do take milk thistle. This supplement is

> discussed by the Agency for Healthcare Research and Quality (AHRQ):

>

> http://www.ahrq.gov/clinic/epcsums/milktsum.htm

>

> This group has also evaluated SAMe:

>

> http://www.ahrq.gov/clinic/epcsums/samesum.htm

>

> Let us know if you have any questions.

>

> Best regards,

>

> Dave

> (father of (19); PSC 07/03; UC 08/03)

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Shahina,

Your post hit a "heartfelt nerve" with me (yes, I am making up terminology!) - what you mentioned in your post is often on my mind when I think about my daughter. She is 15 and was diagnosed when she was 14. Although the immediate impact on her life has been minimal, with only a few changes in her daily routines, what I think has had the most impact is at that young age thinking about death and/or a transplant. I have no idea how a child deals with this, but I can say that she is perhaps the strongest person I know.

LINDA

(Mom of Suzanne, 15; UC 1/04; PSC 3/04)

Just wanted to let you know I was diagnosed when I was 24 too (I am 25 now) and I too think it is unfair to have to think of death or time to transplant at such a young age.Shahina

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  • 1 month later...

Ellen,

Before we can really help we would have to know more. I don't understand how

you say these people talk to you as though you put their loved ones in the

hospital. Why are they ill?

Then you have to remember that everyones experiances with hospitals are

different. We have the unique opportunities here to spend our lives dealing

with

hospitals so it is no big thing. For others who don't, hospitals can be

terrifying. Understand it is OK for them to be scared. Gosh, I had friends

whose

children were going in for PE tubes and you would have thought they were

dealing with open heart surgery. I just had to respect their fear and keep

quiet.

Their fears were real and they owned them. When I couldn't take it any more,

I pretended to be busy with something else and walked away. If I told them

they were taking it too far they would have been angry. My guess is this is

something similar and you are just trying to help them. They just might not

comprehend your expertise!

Who knows if your reactions are due to CHARGE or being oversensitive. There

are some things Patty reacts to in her CHARGE way. Some things are just the

way she is, some she needs help with counceling or medication but then

sometimes things she does aren't OK and she just needs to be called on them.

But that

doesn't mean she can't continue to try to improve on herself. Life is a

learning process for everyone to continue to try to improve on themselves. Me

too!

When you are talking to these people try to stop thinking of yourself. All

humans are self centered. They want you to talk about them.

Good luck and remember we like you.

Bonnie

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  • 4 years later...
Guest guest

>Janie wrote:

> Hello everyone, I'm a long member, my computer crashed a few

> months ago and I just now got it back up and running. hope that

> everyone is okay .

>

Janie,

Welcome back, I wonder what I would do without my computer, I was

thinking about that the other day and realized how it was the way I

communicate with others. Well, glad you are back and am so glad this group is

here for us.

Bennie

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Guest guest

Last summer when my hard drive died, I was devastated. I knew my hubby could

retrieve my " lost " data (he's a Geek), but I was nearly in tears thinking about

how isolated I would feel. Thank goodness it was only a day; I can't imagine how

Janie must have felt with months offline!

Bennie wrote to Janie:

> Welcome back, I wonder what I would do without my computer, I was

> thinking about that the other day and realized how it was the way I

> communicate with others. Well, glad you are back and am so glad this group is

here for us.

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  • 3 months later...

Hello everyone,

I am so very sorry I am not around much, or at all, right now.  I have had a

major life change and am going through a lot right now.  My life is very rough

for me.  I am still here, but I'm having a hard time.

 

Love,

Becky in SD/CA

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Becky,

Your e-mail has certainly expressed the same scenario many of us have been in

at times. my first response is to somehow be supportive as you go through such

hard times as mentioned, at least a big hug and the knowledge that someone

really does care.

Bob

>Becky in SD/CA wrote:

>I have had a major life change and am going through a lot right now. My life is

very rough for me. I am still here, but I'm having a hard time.

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Thanks Bob :-).

 

Love,

Becky in SD/CA

Re: Hello

Becky,

  Your e-mail has certainly expressed the same scenario many of us have been in

at times. my first response is to somehow be supportive as you go through such

hard times as mentioned, at least a big hug and the knowledge that someone

really does care.

         

                    Bob

>Becky in SD/CA wrote:

>I have had a major life change and am going through a lot right now. My life is

very rough for me. I am still here, but I'm having a hard time.

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