Your comments didn't help....

[Guest guest]

The first thing most people learn in

a face to face support group is this….never say; “If I were you”, this rule stands the test of time,

because no one can actually walk in another’s shoes.

The second thing most people learn is

this….never say; “If Ken were my son”. He’s not and implies you think we

aren’t doing everything we possibly can for him. Ken has never gone to a doctor’s

office without one of us with him.

He has never stayed in the hospital without my staying at Twice Blessed

House on the Baylor campus or at times when he was too sick, my sleeping in a

chair next to him. I have studied

PSC for 9 + years, but I don’t have to explain myself to you and you

should’nt have said that, IMHO you stepped way over the line.

I’m hoping you were just trying

to help. It didn’t hit me

that way at all, but I do realize my feelings are raw right now and I am

totally worn out, mentally and physically.

I removed your comments….. please, please don’t write again. I don’t want to try and explain

your comments to our extended family and friends and I didn’t want Ken to read it. So please don’t write me again.

Barb in Texas

If you think this is harsh you should

have seen the orginal, smart enough to sleep on it before posting.

What the heck is going on in this

group?

[Guest guest]

Barb,

I have been too busy to keep up with the group in the past few weeks

with the new semester starting, kids getting sick from school, etc. I

managed to catch up a little from last week and saw the whole

discussion about your caringbridge site and others' sites and I

wanted to add my two cents to the crowd to say that I am _very_ busy

but PSC is always on my mind and I have an insatiable thirst for the

information, support, thoughts, feelings, and perspectives that are

offered in this group. I have been so grateful that Ian and others

have copied posts from people's caringbridge sites because even

though I get notifications when a new post is up, I just don't have

time to follow the link. When I catch up on my PSC support, even if

delayed, I get it all concentrated and easy to access and read, and

that is really important to me. So please keep the posts coming.

Now I don't know what prompted this message, Barb, I certainly didn't

see the post you are referring to, but I cannot believe that you of

all people, who are so brave, generous, warm, kind, heroic,

knowledgable, and strong have to deal with _abuse_ and, of all

places, _here_!!!!! It makes me SO angry and also SCARED that this

group will change forever and what a loss that will be for all of us.

Please please please don't let these outliers get to you, we all love

you on this group and we all need each other to be supportive and

appreciative.

Ruth

UC - 2000, Colectomy - 2007, PSC - 2008

>

> The first thing most people learn in a face to face support group is

> this..never say; " If I were you " , this rule stands the test of time,

> because no one can actually walk in another's shoes.

>

> The second thing most people learn is this..never say; " If Ken were

my

> son " . He's not and implies you think we aren't doing everything we

> possibly can for him. Ken has never gone to a doctor's office

without

> one of us with him. He has never stayed in the hospital without my

> staying at Twice Blessed House on the Baylor campus or at times

when he

> was too sick, my sleeping in a chair next to him. I have studied

PSC

> for 9 + years, but I don't have to explain myself to you and you

> should'nt have said that, IMHO you stepped way over the line.

>

> I'm hoping you were just trying to help. It didn't hit me that way

at

> all, but I do realize my feelings are raw right now and I am totally

> worn out, mentally and physically. I removed your comments...

please,

> please don't write again. I don't want to try and explain your

comments

> to our extended family and friends and I didn't want Ken to read

it. So

> please don't write me again.

>

> Barb in Texas

> If you think this is harsh you should have seen the orginal, smart

> enough to sleep on it before posting.

> What the heck is going on in this group?

>

[Guest guest]

Barb,

I have been too busy to keep up with the group in the past few weeks

with the new semester starting, kids getting sick from school, etc. I

managed to catch up a little from last week and saw the whole

discussion about your caringbridge site and others' sites and I

wanted to add my two cents to the crowd to say that I am _very_ busy

but PSC is always on my mind and I have an insatiable thirst for the

information, support, thoughts, feelings, and perspectives that are

offered in this group. I have been so grateful that Ian and others

have copied posts from people's caringbridge sites because even

though I get notifications when a new post is up, I just don't have

time to follow the link. When I catch up on my PSC support, even if

delayed, I get it all concentrated and easy to access and read, and

that is really important to me. So please keep the posts coming.

Now I don't know what prompted this message, Barb, I certainly didn't

see the post you are referring to, but I cannot believe that you of

all people, who are so brave, generous, warm, kind, heroic,

knowledgable, and strong have to deal with _abuse_ and, of all

places, _here_!!!!! It makes me SO angry and also SCARED that this

group will change forever and what a loss that will be for all of us.

Please please please don't let these outliers get to you, we all love

you on this group and we all need each other to be supportive and

appreciative.

Ruth

UC - 2000, Colectomy - 2007, PSC - 2008

>

> The first thing most people learn in a face to face support group is

> this..never say; " If I were you " , this rule stands the test of time,

> because no one can actually walk in another's shoes.

>

> The second thing most people learn is this..never say; " If Ken were

my

> son " . He's not and implies you think we aren't doing everything we

> possibly can for him. Ken has never gone to a doctor's office

without

> one of us with him. He has never stayed in the hospital without my

> staying at Twice Blessed House on the Baylor campus or at times

when he

> was too sick, my sleeping in a chair next to him. I have studied

PSC

> for 9 + years, but I don't have to explain myself to you and you

> should'nt have said that, IMHO you stepped way over the line.

>

> I'm hoping you were just trying to help. It didn't hit me that way

at

> all, but I do realize my feelings are raw right now and I am totally

> worn out, mentally and physically. I removed your comments...

please,

> please don't write again. I don't want to try and explain your

comments

> to our extended family and friends and I didn't want Ken to read

it. So

> please don't write me again.

>

> Barb in Texas

> If you think this is harsh you should have seen the orginal, smart

> enough to sleep on it before posting.

> What the heck is going on in this group?

>

[Guest guest]

Dear Barb and All,

In spite of all those who were supportive to me by knowing a few of

my situation, I'm afraid to say a soon judge which I tried to assume

as a suggestion seemed very judging on me. It was hurting really to

be judged without knowing what's going on in fact.

By this means, I'd kindly want to draw your attention not to be

judging on anything herenow, to be more understanding to one's need.

About the recent posts, I'm not yet in a good mood to be able to

write back.

Love 'n Light

Melvyn

PSC 2005

Whipple, Cholecyectectomy

Tehran, Iran

> >

> > The first thing most people learn in a face to face support group

is

> > this..never say; " If I were you " , this rule stands the test of

time,

> > because no one can actually walk in another's shoes.

> >

> > The second thing most people learn is this..never say; " If Ken

were

> my

> > son " . He's not and implies you think we aren't doing everything

we

> > possibly can for him. Ken has never gone to a doctor's office

> without

> > one of us with him. He has never stayed in the hospital without

my

> > staying at Twice Blessed House on the Baylor campus or at times

> when he

> > was too sick, my sleeping in a chair next to him. I have studied

> PSC

> > for 9 + years, but I don't have to explain myself to you and you

> > should'nt have said that, IMHO you stepped way over the line.

> >

> > I'm hoping you were just trying to help. It didn't hit me that

way

> at

> > all, but I do realize my feelings are raw right now and I am

totally

> > worn out, mentally and physically. I removed your comments...

> please,

> > please don't write again. I don't want to try and explain your

> comments

> > to our extended family and friends and I didn't want Ken to read

> it. So

> > please don't write me again.

> >

> > Barb in Texas

> > If you think this is harsh you should have seen the orginal, smart

> > enough to sleep on it before posting.

> > What the heck is going on in this group?

> >

>