Re: Re: NGDF Board

[Guest guest]

I haven't read the book. Is this the site that doesn't allow anything

about RAI (negatives) to be posted?

SandyE~Houston

On Thu, 23 Oct 2003 14:10:45 -0500

" Carol Moxley " wrote:

[Guest guest]

Yes,

This is the site that all posts are reviewed and opinions not according to

the 'party line' disappear.

When you try to read their bulletin board by clicking 'Next' after each post

you will often run into a blank. THAT is a post that has been removed.

Their regular letters from loved ones that have had a sister/ daughter /

aunt , die recently because the person refused some sort of treatment for

Graves' ( their is always implication as to what the case might have been )

is the most appalling to me. These letters always urge the readers to send

contributions to this site, in memory of the lost loved one.

Two thoughts on this:

1. Why would a bereaved close relative FIND NGDF the first week or so after

such a loss ?

2. Why have we NEVER received such letters on any other well publicized

Graves' lists/ boards / forums ? ( now watch them send one , which will only

confirm my feelings )

It just all seems very odd to me.

A regular topic posted by moderators explains missing posts as 'in review' ,

waiting for their panel of doctors to clear posts. Warnings about posts

being a means to sell a product or links to profanity seem to be another

possible cause for missing posts.

While all of this sounds like a noble cause, and a logical explanation, I

personally have not found this to be the case.

I have attempted to post , in a most careful manner, much less information

than I have shared here, and on all the other Graves' boards. Unfortunately

my posts do not make it through the 'screening process'. You see, when I

disagree with their ideas , this can not be published, as far as I can

figure.

The best way to judge this site will be to carefully note what they view as

facts. Then please research these 'facts', and decide for yourself. You will

need to do your own independent search. Their links seem to lead to out

dated information, so using THEIR links is a bit like a dog chasing its own

tail.

If you do request real information on Graves' you will be asked to purchase

a pamphlet for each subject.

Absolutely no links to information are allowed on their board. Nothing but

opinions are allowed, no matter what the source.

To search all subjects on the Internet, Google is the standby. There are

also many other search engines. Try a few out and find your favorite. Many

new toolbars out also. They will have a list of search engines right on the

tool bar. They are all free, but caution as many are simple spyware. Again..

judge for yourself.

But beware... do NOT take anything they say as a fact. Look up everything.

Even if it 'sounds ' logical. Same as any place else you read on this

subject. And you do need to put your thinking cap on.

Just because a group has the name National / American / Federal / AAA /

Best... whatever... does not mean anything at all. Looked at the return

addresses on your junk mail lately ?

View more than one source for each question. You will find lots of out dated

'facts' on Graves' disease. Much is simple reprinting of old 'facts' on new

web sites. I believe we had one or more, come through here yesterday. ~ sigh

~

-Pam L-

Let the flames begin as I tread gently where other fear to go...

[Guest guest]

Thanks Pam. I had suspected as much. I know that when suddenly

someone appears who's had RAI, hasn't had much recovery time behind

them, and starts crying over how we're against RAI, something is

usually up. I myself know how I am. I would have NEVER been able to

forgive myself for just jumping in the pool, and looking later to see

if water was there. It's just how I am. I don't think it's a good

way to be, I don't think it's a bad way to be. It just is that way.

I think that when we start talking with people, one thing I have

noticed is, some who chose RAI seem upset after they hear the things

that can go wrong. The more they talk, the more it's evident that

mismanagement on drugs is a really bad way to end up chosing RAI. It

could have happened to me when my Dr Dummie made me go hypo. It's

just a fact of life, it happens, then we have to move on. I myself

had to move onto a dr who knew what he was doing, and knew that I knew

what I was talking about.

I pray that everybody who's been in this same predicament start being

their own advocate, hopefully before they're told that there is only

one treatment for RAI, cuz afterwards, you have a much bigger fight on

your hands in my opinion. And I think for us to not share how we

truly feel and our experiences only allows these things to go on

without notice.

I've seen so many posts stating how people can't take this, and can't

take that, and on and on and on. The sad thing is that if you're on

too much, you surely will have problems. I had them. Everything I

went through was because I let a Dr tell me that everything was fine,

and I walked out without labs so that I couldn't question anything

that I was going through. While I feel it wasn't wise of me at the

time, I at least know where I can find those answers, and where I can

get positive feedback when I need it.

I'd much rather listen to people who've had similar experiences and

people who can tell me options I can try than moving thru this blindly

and just acting as if I have to take whatever is handed to me on a

platter. It never helped me being in that situation, and now I do

question things my dr says, and I could care less if he gets offended.

He's not a 'God' although I have met a few of them. Gosh, even he

never mentioned meds, but my insistance on it not being able to be

worked into my holiday schedule worked for me, and as I'm seeing now,

RAI was NOT needed to 'fix me'. So far, these little pills I take

have worked just fine for me. I also have a better dr who knows how

to treat it. :-)

I'd run across that board and the National part didn't impress me one

bit. What they do is called 'censure' and this is the U.S. Freedom

of speech is allowed. Even when it hurts.

SandyE~Houston

On Fri, 24 Oct 2003 07:01:09 -0700 (Pacific Daylight Time)

" -Pam L - " wrote: