Re: Serious Thoughts on Group Purpose

[Guest guest]

I think the purpose of this group is whatever helps anyone who comes

here and thats so broad but, in my mind, intentionally so. I think

also we all will see things or hear things sometimes here that we

don't like. One can skip posts, topics, whatever. I'm not offended in

the least if one doesn't read my post. The more active the board gets

the more selective many of us will have to be about posts. I'm going

to be gone for a few days next week. I don't feel pressure to read

everything that happens while gone when I return.

I ask only that we all be tolerant. Don't try to change or inhibit

anyone. We need it all. I was in pain during the New Years Eve

Celebration but between some vicodin and the party didn't feel it. I

feel pain when I read the struggles of some of our members and at

times that gets heavy for me. That's why I find the balance so

incredible. And so much sharing. How else would I know Rosebud and be

able to feel good about 's move while at the same time learning

more everyday about my disease and how to live the rest of my life.

I'm too old to survive one of 's parties every weekend, although

I do miss Kylie. But I think to periodically schedule a party, such

as New Years Eve and we note all posts as party posts is a good

balance. Maybe its twice a year, although I know July 4 isn't the

favorite day of our Brits. Maybe its a summer bash and a New Years

Eve Party and we use the protocol in our posts so anyone not

interested can skip right over.

But I appreciate every member here. I like to try to help Tina by

sharing just a little of her pain. I like trying to keep Sher

straight. And I do like the spice and life of and Zena. There is

no where else I can go in a day where I get support for anything I'm

going through, the chance to help others, educated about my disease,

taught life lessons through example, and smiles and laughter. It's

like a great group of friends all gathered in a room with people

going in and out all day. I wouldn't wish anyone here ever change a

thing. This is all real, life as it exists for us. Don't most of us

every day feel some anger, some pain, some comfort, some joy? But

this board sure is about living. We deal with the harshest realities

and occasionally we escape to dream of the world we wish.

I love you all.

>

>

> Bruce, Gwynne & Mama-Sher have set me thinking on the purpose of

this

> group ...for ME....this group provides a safe place to allow my

disease

> of IPF to be considered, discussed, supported, ameliorated as often

as I

> like...there are NO limits on time, interest & capacity to respond

to

> questions, anxieties & fear.

>

> I CAN'T wear it out....people in my day-to-day life have all sorts

of

> things they're dealing with too & I CAN wear THEM out if I truly

let fly

> with all my feelings, questions, responses to finding myself with

this

> disease......

>

> On this Board if I don't feel I can help or I'm not taken up with a

> particular dilema Or I just plain don't want to participate in a

current

> discussion or thread then I can use the DELETE button with no

offence to

> anyone!

>

> People in our lives can't do that...they live with our disease just

as

> we do....this Board can take the pressure off them too!

>

> There IS no DELETE button in real life!

>

> As a member of this Board I've tended to use Humour as a way of

> 'leavening' a dire situation that many find themselves in. That's

MY way

> of coping but I recognise that it's not for everyone. I apologise if

> I've distressed anyone who finds my humour distracting &

unwarranted.

>

> Cyber Parties were my way of attempting to make people more

accessible

> to each other...we'll get to know each other in a different way &

feel

> closer as a result. Once again there are some for whom this is not

> helpful ......I'll leave it to our wise List Moderator to judge

whether

> these parties should occasionally happen ...the pre-Christmas

Cooking

> Party was just an 'Off-the Cuff' idea while the New Year's Eve

Party was

> actually suggested by other Board members & I responded in great

glee!

>

> I really appreciate this Board & hope that my contribution balances

out

> what I gain from all of you......

>

> Remember just use DELETE if I'm too much for some of you!

>

> in Oz

>

> IPF: Fibrotic NSIP/UIP???

>

> Reynauds'

>

> May 2007

>