Re: A word from the list owner

[Guest guest]

I'm glad you posted this , and Jill, who posted the original message

about the shakes. The whole purpose of what we try to do here is to

" support " . We don't have any secret or suppressed treatments to tell you

about, and we don't start out from the belief that nephrologists secretly

want to see us all on dialysis because that's how they make their money.

It's all too easy to fall into that kind of thinking when you have a chronic

illness that can't really be cured, and IgAN patients certainly aren't the

only ones in that situation.

While we try to complement the information you all get from your doctors as

best we can (and, with appointments that last 5 minutes, who doesn't need

that sometimes!), we don't have any medical expertise. But, we do our very

best to just be here, to help you deal with the situation you are in *now*,

facing IgAN at various levels. To me, the word " support " means being here as

peers or equals to listen when family members and friends won't, and when

possible, to regain some control over the disease and your life with it.

Control and peace can only come with knowledge of what is going on, and what

can be done or not done about it. Here, we know what you're dealing with and

what you're talking about.

We don't have newsletters that we send out to those who pay, because all the

information we have is posted here, or it's on the website. Any news about

IgAN that comes along is posted on the news page, or, a link to it is

posted, and you can read the original for yourself.

At times, periodically, we do need a few donations to keep the website

itself up, and I'm very grateful to those who do answer the call (not asking

for any at the moment, though). But whether you do or don't doesn't matter.

We treat everyone the same. I think the website serves the purpose of

providing newly-diagnosed people with the basic information they need, so

that you can fully participate in the discussions we have here, and so it's

an important part of the whole package in conjunction with the Yahoo group

(and the IgAN Cafe message board, for those who prefer that format). It also

gives us a place to refer you for the more commonly-asked questions

We are all equals here. A few of us are designated as moderators, because

it's not possible to operate a group like this successfully without some

degree of administration. And, you know, I really hate this " list owner "

term that Yahoo Groups uses. Unfortunately, someone had to start the group

sometime, and that's the person who is listed as the " list owner " . That

happens to be me, but we are all list owners, as far as I'm concerned. You

become part of the ownership of this group the minute that you join it,

whether you're an active participant or a lurker.

Pierre

Re: The shakes/Being sick

> Hi Jill,

>

> Thank you so much for those kind comments. That is precisely Pierre's

> objective with this site. It warms my heart to know that this group is

helping you

> to feel more at ease and that your stress levels are reduced.

>

>

>

>

>

> In a message dated 4/27/2004 11:19:53 AM Pacific Daylight Time,

> jhigby2003@... writes:

>

> > I realized how more at ease with all of my medical problems and things

that

> > I can not control, ever since I found this support group. I use to think

> > about it all the time because I had nobody in my life to talk to about

it that

> > understood. Now My stress level is so much better and I thank everybody

in

> > this group for the support. I love you all! Jill H

> >

>

>

[Guest guest]

Pierre you have helped so many just by creating this group. We all do work

as a team here and it's a wonderful place to find calm in the midst of some

very stormy weather. Your post and other recent posts regarding the

inability of blood family to understand our conditions prompted me to add my

favorite saying to this post:

" The bond that links your true family is not one of blood, but of

respect and joy in each others life. Rarely do members of one family

grow up under the same roof. "

Bach from " Illusions "

This saying rings so very true for this group. Even in the short time I've

been here you all feel like family. It's nice to be able to come and share

our joys, concerns, fears, and disappointments with others who fully

understand.

Thank you all for being here.

Amy

[Guest guest]

Pierre you have helped so many just by creating this group. We all do work

as a team here and it's a wonderful place to find calm in the midst of some

very stormy weather. Your post and other recent posts regarding the

inability of blood family to understand our conditions prompted me to add my

favorite saying to this post:

" The bond that links your true family is not one of blood, but of

respect and joy in each others life. Rarely do members of one family

grow up under the same roof. "

Bach from " Illusions "

This saying rings so very true for this group. Even in the short time I've

been here you all feel like family. It's nice to be able to come and share

our joys, concerns, fears, and disappointments with others who fully

understand.

Thank you all for being here.

Amy

[Guest guest]

Hi Amy,

I LOVE that saying. I remember you used to have it at the bottom of your

emails when you first joined the group. Thanks for the great reminder.

This is a wonderful kidney family indeed!

In a message dated 4/28/2004 8:04:21 PM Pacific Daylight Time,

purr-fect@... writes:

> " The bond that links your true family is not one of blood, but of

> respect and joy in each others life. Rarely do members of one family

> grow up under the same roof. "

> Bach from " Illusions "