Re: Re: Where's that Hard Data

[Guest guest]

--- The Beamons <cartman@...> wrote:

> Hi Everyone, I try really hard to post a reply if I see that someone

> didn't get an answer to something I might know about. In response to

> Conradical--I have to ask " What is it that you want to know " ?

What I want to know would easily fill a tome big enough to stun an ox.

(Actually, there would be MULTIPLE volumes <grin>.) But I’ll spare

this group the agony of that dissertation <Woo-Hoo>. I have put up a

folder structure on our eGroup site that pretty well outlines a number

of topics that are of immediate interest to me (and that I think will

also be of interest to others). It can be viewed at:

/

The true question (which I addressed in my previous post) is not

actually “What do I want to know?” But: What knowledge is there that a

vast majority of the members of this group want to know? You do not

have to subscribe to this list for very long to get a feel for that.

The common (and logical) response to this is to “search the archives”.

I won’t rehash that point. See the lead post of this thread.

No doubt some topics of interest will overlap (like common meds), and

some will not (female specific problems simply do not apply to me).

This does not mean that the invaluable content of ANY personal

experience has to be buried in a dungeon of archives. This

ACCESSIBILITY issue is at the core of my question: “Where’s that hard

data?” The answer is: “Buried.”

It pains me to think that any number of people have spent hours

gleaning through the message archives looking for the SAME information.

It doesn’t HAVE to be this way! (But it WILL continue to be this way

until other steps are taken.)

Wouldn’t it be GREAT if there was a way to view commentary in ONE

document on a drug from a GROUP of people, rather than laboriously

clicking back and forth through each message (many of which don’t

apply) in a searched archive list? The answer is: The way is already

here!

Based on my brief review of the tools available at our eGroups site it

is quite apparent that there is a much simpler and efficient way to

present the information most folks here want to know. Both new and old

content can be used! It will require a COMMUNITY effort for it to work

at its best however.

> I think I missed an earlier post somewhere. I printed off this post

> because my mouse's short little legs could not run fast enough to

> keep up with my eyes, poor mouse kept tripping over her own little

> feet and falling behind because the length of this post was too long

> to keep up with.

It’s a shame you had so much trouble viewing that long post on screen

and had to print it out (poor trees). You may want to consider using

keyboard short cuts to view/scroll your messages. I noticed from the

header of your message that you are using Microsoft Outlook Express v5.

I am familiar with this mail client and know that you can process

messages using the keyboard at least 95% of the time.

If you read your messages in the “preview pane” (which is typical and

easiest), try this: Shift the program “focus” to the preview pane and

then use the “up/down” arrows or the “Page Up/Down” keys to scroll

through the message. My “mouse” hand is totally trashed by my PA so

I’ve made it a point to thoroughly learn the common keyboard shortcuts

(which are much easier on my hands). (If you need more detail then

post me privately, or publicly with another topic.)

> I will admitt that I can give some long ones

> sometimes but this one and the one about the coat went on and on. I

> get lost when there is too much to comprehend in a single attempt to

> read. Could you possibly shorten your post just a little bit. The

> coat thing was 9 pages and this one was 6.

I do not believe the sum total of my posts exceeds the “ballpark”

average for this group as I see it. Writing for me is an excellent

form of communication because it allows me to organize and rearrange my

thoughts at my leisure and then (attempt) to express them clearly, all

at once. The fact is that I, like most people here, simply say what I

think is important for me and for the group. If my “style” of writing

requires a different style of reading then so be it. I am not inclined

to change the way I think and communicate to conform to the masses.

I will not be offended in the least if an individual sees my name/UID

in their message list and automatically hits “delete”. Abe Lincoln

said it best. Something about pleasing people (or not). Content

length is an issue I’m all too aware of and I tried to address this in

my “hard data” post. Based on my limited exposure to this group

however it is evident that “censorship” is a HIGHLY volatile topic.

This is a tough issue that can be verified by some careful review of

the archives. (I tip my hat to the moderators, I DO NOT envy THAT job

<smile>.)

“Hard data” was a big post because I believe it addresses a BIG issue.

I KNOW this because I UNDERSTAND this. The first and most obvious

hurdles to overcome are who else knows & understands this, who wants to

learn, and who cares? I had hoped to flush out some of the answers to

these questions with that post. So far I’m modestly pleased with the

results. I believe that continued pursuit of this endeavor is worth my

while.

I spent a substantial amount of time putting together that post and did

not expect any average individual (like me) to be able to absorb it all

in one sitting. I considered dribbling it out piecemeal but decided

against it (see my “rants” about searching the archives). To explain

ALL of my ideas and findings in DETAIL (even on just the few items I

touched on in my “hard data” post) would require an entire website.

(Which, AAMOF, I am currently working on <GRIN>. I just wish I could

get PAID for this stuff! <ROTFL>)

My goal is to see if the “reinvent the wheel” process of getting

questions answered by/for members of this group can be reduced. Time

and patience (and maybe a willingness to learn some new technology)

will be a requirement in this endeavor if it is to succeed. I’m

willing to give it a year and then reevaluate the situation. Nothing

is etched in stone at this time (nor should it ever be) so I’m eager to

hear more commentary on this “project”. I’m ESPECIALLY interested in

hearing from folks who would like to help contribute and/or would like

to learn more about how these “tools” work.

As for the “coat thing” it was a highly emotional post for me. I tried

to state this AND warn of the message length in the first two sentences

of my response. When I later instructed my mother on how she could

view the archives of just the posts I’ve made, her reading that post

opened the door to a whole new level of understanding between us. If

something I do or say is that helpful to even ONE person, then I feel I

will have accomplished my goal for that input. People DIAGNOSED with

PA are not the only ones who suffer because of it!

When I was at the nadir of my illness (to date) I achieved a whole new

understanding of Life & Death. I have since decided that if MY life

does NOT have meaning, then why BOTHER?!? My PA is my life now (and my

#1 job), I can’t escape it. (What else am I going to do now, just

watch TV?) The harsh reality is that my story is not likely all that

different from others who suffer from this affliction. (The

differences primarily come from the sum of how we react to our illness

as individuals.) Based on the track record of research vs. PA it is

entirely likely that I will go to my grave without the satisfaction of

knowing that it is whipped. But that does not mean that I am going to

let it whip ME!

IF Knowledge is the Gateway to Wisdom & Understanding, THEN Education

is the Key. Were someone to ask me to sum up our eGroups site in one

word it would be EDUCATION. It applies on ALL levels including

emotional, physical, medical, and even spiritual! The Internet,

particularly the Web, is one of the most remarkable educational tools

to ever come down the pike. How, and to what extent, we utilize this

tool is up to us as individuals.

In short my plea is to make an attempt at better utilizing the tools

available to ALL of us. How can it hurt? Whether or not the

opportunity before us is taken advantage of is mostly an issue of TIME.

Tools are historically invented to save time. No doubt that it will

TAKE time to learn proper use of these tools and implement these

proposals. But if making information more accessible will allow

possibly dozens of people (not at all unlikely with a group this size)

to have MORE time doing things such as more productive research or

enjoying the company of their loved ones, then it will certainly all be

worthwhile.

> If I can answer something

> then I will be glad to help. Sorry, but I can't help you with this

> website. I don't know that much about computers. Please don't take

> serious offense to this post. Cassie

Feel free to respond to any post I make in any way you wish. No

offense taken (seriously or otherwise) <grin>. When we fail to see

humor in ourselves then all is lost.

As always: Take what you like and leave the rest.

Respectfully,

Conradical

" When I do my job,

I am thinking about these things.

Because when I do my job,

That is what I think about. " -- L. A.

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