Questions

[Guest guest]

Shelby, Sorry, I must agree with . I thought your post to was a bit harsh. I do like your very informative posts. The question for me are the best part of this list. I unfortunately don't have the answers as I am learning myself.

Jill

[Guest guest]

In a message dated 1/4/2001 12:42:52 PM Pacific Standard Time, dasweeney@... writes:

get all worked up if they aren't answered.

I didn't get that at all about her post.

[Guest guest]

natalie,

what was this in response to? did i miss something? was someone harsh in their response to someone else?

brigit

[Guest guest]

, I never said anything derogatory about asking questions and I'm not

sure why you're suggesting that I did.

This list is a great resource for health question and I for one am glad it's

here. I do not think, however, that it is anyone's responsibility to make

sure everyone's questions get answered. Nor is it logistically reasonable to

ask everyone to respond to every question. Do you wish to receive a few

thousand emails everyday simply stating that someone doesn't know the answer

to a question? I sure don't.

I don't feel my post was condescending, although maybe a bit terse, simply

because I found 's to be very rude. I don't know why that would make

you feel uncomfortable about asking questions in the future.

S.

Hjelsvold wrote:

> I thought this was a list that we could post questions on. We are all

> busy and not always able to answer the questions right away. That

> doesn't mean that no one has an answer or a suggestion.

>

> It's not fair to be condescending to someone asking questions, just

> because they are wondering about a response. Many of us are new Mom's,

> full of questions, wanting to do what is best for our children, just

> like the Mom's on here who are seasoned veterans. Just because we ask a

> question does not mean that we are uneducated or looking for someone to

> tell us what to do. We are hoping for someone who has had the same

> experience to share what they did....

>

> When people respond so harshly, it is very difficult to feel comfortable

> here asking difficult questions. Please consider that some of us are

> full of questions and a hoping for someone with the same experience,

> maybe not " answers " to help us out.

>

>

--

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

What happens if a big asteroid hits the Earth? Judging

from realistic simulations involving a sledge hammer and

a common laboratory frog, we can assume it will be

pretty bad.

- Dave Barry

I would rather have a mind opened by wonder

than one closed by belief.

- Gerry Spence

Doctors give drugs of which they know little,

into bodies, of which they know less,

for diseases of which they know nothing at all.

- Voltaire

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Guest guest]

Sorry, I agree with Shelby. This list isn't for one person to get all their questions answered and get all worked up if they aren't answered.

-Dawn

Re: Questions

Shelby, Sorry, I must agree with . I thought your post to was a bit harsh. I do like your very informative posts. The question for me are the best part of this list. I unfortunately don't have the answers as I am learning myself. Jill

[Guest guest]

Until it is a pressing question you may have on your mind, of course it is

no big deal. In case you do not remember it was a vaccine related question

this is a site for discussing vaccines, correct?

I found it hard to believe out of 300 or some odd people no one had an

answer for the formaldehyde question. Going on and on about IUD,

breastfeeding, and so forth may not interest me, so I give no response.

Asking a vaccine related question, warrants I feel some type of feed back,

sorry you disagree. So from now on if someone asks advice on a subject or a

question on any subject or needs help, I am sure I will not see a post by

yourself giving any advice or answers unless you have lived through it, or

know a definite answer, because an " I don't know " answer for you is

unacceptable and a waste of space. Fair enough..

[Guest guest]

rachel,

you need to realize that if no one either knows the answer or doesn't have time at that particular time to answer your question, then you may not get any response at all. there have been several times that i have received no response at all to a particular question and i dealt with it rather than try to "teach" everyone on the list a lesson. i say, if no one answers your questions, either ask it again (with some respect and some patience) or move on and try to find the answer yourself... also, you may not have noticed, but there are some people on this list who post quite a few answers, but do not post every single day, they may just go through their emails once or twice a week, so sometimes they have a response days and days after the original one was written. also, keep in mind that the holidays had just ended when you wrote those questions, so cut people a little slack.

no one "owes" you an answer anyway, this is just a place where some like-minded people get together to give advice and support (mainly about vaccines). it is not a guarantee you will get all the answers you are looking for.

to think that everyone who doesn't know the answers would write in--"i don't know" is ridiculous and i for one, wouldn't like to see that start to happen. i'm sorry you've gotten no answers to your questions, maybe you should try to search around to find the answers for yourself...

good luck and try to be a little more tolerant and patient.

brigit

[Guest guest]

Glad to see you understand.

S.

Tom and Muckerheide wrote:

> Until it is a pressing question you may have on your mind, of course it is

> no big deal. In case you do not remember it was a vaccine related question

> this is a site for discussing vaccines, correct?

>

> I found it hard to believe out of 300 or some odd people no one had an

> answer for the formaldehyde question. Going on and on about IUD,

> breastfeeding, and so forth may not interest me, so I give no response.

> Asking a vaccine related question, warrants I feel some type of feed back,

> sorry you disagree. So from now on if someone asks advice on a subject or a

> question on any subject or needs help, I am sure I will not see a post by

> yourself giving any advice or answers unless you have lived through it, or

> know a definite answer, because an " I don't know " answer for you is

> unacceptable and a waste of space. Fair enough..

>

>

--

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

What happens if a big asteroid hits the Earth? Judging

from realistic simulations involving a sledge hammer and

a common laboratory frog, we can assume it will be

pretty bad.

- Dave Barry

I would rather have a mind opened by wonder

than one closed by belief.

- Gerry Spence

Doctors give drugs of which they know little,

into bodies, of which they know less,

for diseases of which they know nothing at all.

- Voltaire

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

[Guest guest]

Gotta throw my .02 in for Shelby's response too! Our computer was down

for ONE DAY and I was faced with 135 unread messages! Just imagine if we

all responded to every question, especially the ones we don't even have

an answer for, we would never see our families for reading all the

email!!! I love this list, but it's busy enough with the relevant posts

(like this one *smile*.) Namaste, Gretchen

On Thu, 4 Jan 2001 15:45:38 -0500 " Nittany Lion " <dasweeney@...>

writes:

> Sorry, I agree with Shelby. This list isn't for one person to get

> all their questions answered and get all worked up if they aren't

> answered.

>

> -Dawn

> Re: Questions

>

>

>

> Shelby,

> Sorry, I must agree with . I thought

> your post to

> was a bit harsh. I do like your very informative posts.

> The question

> for me are the best part of this list. I unfortunately don't have

> the

> answers as I am learning myself.

> Jill

>

>

> eGroups Sponsor

>

>

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

What happened? I must not have received all posts?!

I am completely unaware of unanswered questions or harsh responses.

Could somebody please tell me what happened?

a.

Questions

> I thought this was a list that we could post questions on. We are all

> busy and not always able to answer the questions right away. That

> doesn't mean that no one has an answer or a suggestion.

>

> It's not fair to be condescending to someone asking questions, just

> because they are wondering about a response. Many of us are new Mom's,

> full of questions, wanting to do what is best for our children, just

> like the Mom's on here who are seasoned veterans. Just because we ask a

> question does not mean that we are uneducated or looking for someone to

> tell us what to do. We are hoping for someone who has had the same

> experience to share what they did....

>

> When people respond so harshly, it is very difficult to feel comfortable

> here asking difficult questions. Please consider that some of us are

> full of questions and a hoping for someone with the same experience,

> maybe not " answers " to help us out.

>

>

>

>

>

>

>

[Guest guest]

Nittany Lion wrote:

Sorry,

I agree with Shelby.

Me too. When I come across a

question I can't answer, I just delete it, mostly b/c I assume someone

else will know the answer, which is usually the case, but also b/c if I

reply that I don't know, does that mean the asker of the question will

just shrug her shoulders and assume that no one knows, based on the fact

that I responded with an "I don't know"? Perhaps a better option

would be to simply repost a few days later. It's true that sometimes

this list gets very busy, and sometimes questions get missed, but I think

we can all rest assured that if someone has something to say about a topic,

they will say it. Not many of us pass up an opportunity to share

our knowledge, opinions, resources, etc. Besides, I think

once mentioned that there are about 300 members of this list. Do

you really want 300 messages in your mailbox saying "I don't know"?

I sure don't.

[Guest guest]

I have a couple of questions on different topics. Here goes :

First: I am the one who has been doing so well on the MGN3. I am into my

second month and my NK cells have more than tripled now. Anyway, the past

week I have been feeling kind of bad again, chills, headache and really

tired. Thought maybe i was getting the flu. This morning i realized that my 8

year old has the chicken pox. I vaguely remember hearing that even if you

have had chicken pox when you are re-exposed you can get some of the flu like

symptoms. Anyone else ever heard this?

Second question : I have been reading Mark Konlees How To Restore Immune

Function. In it there is mention of Naltrexone a prescription drug used to

raise NK Function. Anyone on this or heard of it?

a

_________________________________________________________________

" Do me a favor, doc, tell me something good. " - Blair - The Exorcist

[Guest guest]

a,

I have heard Naltrexone in extremely small doses can raise immune function.

Steve B.

Re: questions

> I have a couple of questions on different topics. Here goes :

>

> First: I am the one who has been doing so well on the MGN3. I am into my

> second month and my NK cells have more than tripled now. Anyway, the past

> week I have been feeling kind of bad again, chills, headache and really

> tired. Thought maybe i was getting the flu. This morning i realized that

my 8

> year old has the chicken pox. I vaguely remember hearing that even if you

> have had chicken pox when you are re-exposed you can get some of the flu

like

> symptoms. Anyone else ever heard this?

>

> Second question : I have been reading Mark Konlees How To Restore Immune

> Function. In it there is mention of Naltrexone a prescription drug used to

> raise NK Function. Anyone on this or heard of it?

>

> a

> _________________________________________________________________

> " Do me a favor, doc, tell me something good. " - Blair - The

Exorcist

>

>

>

[Guest guest]

I think Naltrexone was discussed on this list about a year ago, check the

archives.

Al

Re: questions

> Second question : I have been reading Mark Konlees How To Restore Immune

> Function. In it there is mention of Naltrexone a prescription drug used to

> raise NK Function. Anyone on this or heard of it?

>

> a

>

[Guest guest]

LAURA7028@... writes:

> <I'm sorry for asking the question.>

I'm sure that you're not alone. In the past months, somebody has had to say

something about everything posted on the list... mostly, " That doesn't belong

here; go someplace else. "

I know we're not supposed to discuss religion on this list, but lately it

seems that there are more " thou shalt nots " here than in the book of

Leviticus. Now, we're not even allowed to discuss dwarfism... Go figure.

luthien

[Guest guest]

I understand about the religion issue, etc. But is

this group's e-mail address not

DWARFISM ? It says so right in its

name.

I also agree about the more thou shalt nots than in

Leviticus. It's fine to moderate, but there should be

benefits and enjoyment to everyone.

--- luthienx@... wrote:

> LAURA7028@... writes:

>

> > <I'm sorry for asking the question.>

>

> I'm sure that you're not alone. In the past months,

> somebody has had to say

> something about everything posted on the list...

> mostly, " That doesn't belong

> here; go someplace else. "

> I know we're not supposed to discuss religion on

> this list, but lately it

> seems that there are more " thou shalt nots " here

> than in the book of

> Leviticus. Now, we're not even allowed to discuss

> dwarfism... Go figure.

>

> luthien

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Well, I don't know a lot, but I know you are not

alone! It is scary!! I have good days and bad days. I

saw a 'Top Doc' three weeks a go and feel MUCH

better. Amazing!! I see him tomorrow for a follow up as a

matter of fact.<br><br>Have you tried selenium? COQ10?

flax seed oil? B vitamins? They seem to have made a

big difference for me. In January I began taking

Cytomel 5 mg 2X daily. The 'Top Doc' switched it to 7.5

time released T3 2X daily. <br><br>The worst time for

me is about a week before my period. I just really

crash, get VERY hypo and VERY PMSy. My poor DH, he puts

up with a lot!<br><br>How is your daughter?

<br><br>Who is the Top Doc you are seeing in

Texas?<br><br>:-) Bev

[Guest guest]

Hi ,

Thanks for writing. Yes, LPA Today is still accepting photographs from those

who attended the LPA National Conference in Toronto. But not for long.

Please let me know if you need the address. (It should be on the inside

cover of the Spring issue.) We do allocate a larger share of the total LPA

Today funds to produce a larger issue with photographs.

And yes, budget issues have impacted the redesign of LPA Today to a certain

extent. Previously a large share of LPA's operating budget was consumed by

the newsletter. While it may seem like LPA generates a lot of money from

dues, this money must be stretched across a growing number of programs and

services LPA offers to the members, not just the newsletter.

LPA is working on acquiring additional sources of funding to better support

all its programs. Later this year LPA will publish its first-ever annual

report, which will provide a breakdown of where your membership dollars go.

In the mean time, I suggest you check out Hagen's explanation of LPA

finances in the spring issue (p.9).

Cara Egan

LPA Public Relations

> From: irish_p_butter@...

> Date: Thu, 09 Aug 2001 04:24:07 -0000

> dwarfism

> Subject: Questions

>

> Hey all,

> I know I and others have brought this up but I have questions about

> the newsletter.

> 1. Are they still taking pics to be put in for the conference

> issue?

> 2. If it is about budget, then why is it a couple years ago these

> issues had about 25 to 30 pages when dues where less, now the dues

> went up and we only get maybe 15?

> 3. Is it possible to allocate money so that the conference issue

> will be packed with tons of pics (to me this issue could clearly have

> pages and pages of pics and commentary from people).

> 4. Is there somewhere where there is a percentage break down of

> what we pay goes to? meaning 20% of your money went here, 40% goes

> here etc.

> These are just 4 questions that I feel are important that I

> would like answers to. I am not knocking anyone at all I just want to

> know? To me our organization keeps expanding and the dues went up and

> that is totally understandable and expected but when it comes to

> something I can have in my hands meaning the newsletter, to me

> something doesn't add up. P.S I will gladly submit photos

> Again I would like to say that I am not knocking anyone, I would

> just like to better understand how it works.

> -

>

>

>

> Looking to unsubscribe? Don't e-mail the list! Just send a blank e-mail to

> dwarfism-unsubscribe

>

>

[Guest guest]

From: Cara Egan <egan921@e...>

Date: Thu Aug 9, 2001 10:36 am

Subject: Re: Questions

And yes, budget issues have impacted the redesign of LPA Today to a certain

extent.

Cara Egan

LPA Public Relations

Could you be more specific, Cara? According to the winter 2001 issue the

layout/design process is completed by the Editor on a QuarkXPress templete.

Bill, & Kids

Aucott@...

[Guest guest]

,

Povinelli initiates design of the newsletter, the template for which

was originally designed by Irene Yuan.

We then send it to PVI Printing, which despite the name, is not the actual

location for printing. This vendor provides supplemental design support

(adding graphic elements, overseeing any last minute revisions), and

coordinates production, printing and mailing.

PVI provides a valuable resource for LPA, an organization that is short on

time and staff. (Much like LPA National has come to rely on the services of

an outside vendor for meeting planning.) One only has to look at the

dramatic decrease in " typos " in the newsletter over the past year to realize

the back-up support that PVI provides.

I rely on this vendor frequently in my full-time position as manager of

communications at Holy Cross Hospital in Silver Spring, land.

It should be noted that the cost for PVI's services is dramatically less

than previous " editorship " fees which had been charged by the previous

editor.

, I understand that you have issues with the current design of the

newsletter. However, the Board has voiced its support for the current

approach.

In terms of the newsletter, and I answer to the Board, not to this

listserve. You or anyone else is welcome to voice your concerns to the

Board.

Cara Egan

LPA Public Relations

> From: " & Aucott " <Aucott@...>

> Date: Fri, 10 Aug 2001 10:25:38 -0400

> <dwarfism >

> Subject: Re: Questions

>

> From: Cara Egan <egan921@e...>

> Date: Thu Aug 9, 2001 10:36 am

> Subject: Re: Questions

>

>

> And yes, budget issues have impacted the redesign of LPA Today to a certain

> extent.

> Cara Egan

> LPA Public Relations

>

>

>

> Could you be more specific, Cara? According to the winter 2001 issue the

> layout/design process is completed by the Editor on a QuarkXPress templete.

>

>

> Bill, & Kids

> Aucott@...

>

>

>

>

[Guest guest]

In a message dated 8/11/01 1:48:06 PM, Aucott@... writes:

<<

Lack of voluntary manpower and finances is illogical reasoning.

In specific regard to the deliberate decision of withholding relevant

human interest stories, we are social animals by nature, needing other little

people to make meaning out of life. As our lives and LPA Today becomes ever

more fragmented, the need for community (in my opinion) takes on new urgency.

Based on my understanding the Editor of LPA Today is directly appointed

by the members of the Executive Committee. Thank you for dismissing my

concerns, rendering the Executive Committee totally unapproachable, while

putting genuinely concerned LPA members (domestic & international) in our

" highly respected " places.

To quote a friend, " I'm sorry for caring, it's easier when no one does. "

Bill, & Kids

Aucott@...

From: Cara Egan <egan921@e...>

Date: Fri Aug 10, 2001 9:27 pm

Subject: Re: Questions

, >>

, I've just about had it with reading your " nitpicking " of the newsletter.

As a career designer, art director and advertising professional. I have to

say that this design(Irene's) is far better and more contemporary than

anything LPA ever had in it's history.

Infact I showed both old and new to other professionals in my field and they

agreed that the new design was far and away more " with it " .

Irene attended Art Center in Pasadena, one of the top art and design schools

in the world.

LPA members should be thrilled. As an artist I can agree that maybe LPA has

deviated a bit from Irene's design, and I commend Irene for sticking pure to

her initial concept.

As an analogy let me point out the National Vietnam Memorial in DC.

When it was first designed by a young artist, many old school politicos were

outraged!

" A memorial without a sculpture of a soldier? No wounded marines cast in

bronze, no classic white male hero carrying our flag?

NO.

What was there was a new monument that has everyUS citizen who lost or MIA in

Vietnam. Along a black monolith, that people visit from around the world,

place flowers on, take " rubbings of the embossed names " and it is now one of

the most visited national monuments in DC.

The point is it was different, like our new newsletter. Different yes, better

I'd say so.

Just because you and a few others are not getting your way, you shouldn't be

on the war path against this fine publication.

, let me ask you this? Have you gone to design school? Majored in

Journalism? Published a national publication? Written for the media?

Look Why not leave LPA Today to the professionals that are running it? Then

once they are burned out after years of volunteerism, you can take over.

However, I have received your chapter newsletter, and to me it's most

substantive content is plagiarized from pre published articles.

That's fine on a chapter level.

Not on a National level when we are on the verge of an aggressive fundraising

and membership drive.

[Guest guest]

While Irene Yuan designed the original template she has requested that her

name be removed from LPA Today's title " Art Director/Graphic Designer. " As I

understand it, Irene has absolutely no consensus in the overall look and design

of each individual issue (as it has changed drastically from her original

design).

Lack of voluntary manpower and finances is illogical reasoning.

In specific regard to the deliberate decision of withholding relevant

human interest stories, we are social animals by nature, needing other little

people to make meaning out of life. As our lives and LPA Today becomes ever

more fragmented, the need for community (in my opinion) takes on new urgency.

Based on my understanding the Editor of LPA Today is directly appointed by

the members of the Executive Committee. Thank you for dismissing my concerns,

rendering the Executive Committee totally unapproachable, while putting

genuinely concerned LPA members (domestic & international) in our " highly

respected " places.

To quote a friend, " I'm sorry for caring, it's easier when no one does. "

Bill, & Kids

Aucott@...

From: Cara Egan <egan921@e...>

Date: Fri Aug 10, 2001 9:27 pm

Subject: Re: Questions

,

Povinelli initiates design of the newsletter, the template for which

was originally designed by Irene Yuan.

We then send it to PVI Printing, which despite the name, is not the actual

location for printing. This vendor provides supplemental design support

(adding graphic elements, overseeing any last minute revisions), and

coordinates production, printing and mailing.

PVI provides a valuable resource for LPA, an organization that is short on

time and staff. (Much like LPA National has come to rely on the services of

an outside vendor for meeting planning.) One only has to look at the

dramatic decrease in " typos " in the newsletter over the past year to realize

the back-up support that PVI provides.

I rely on this vendor frequently in my full-time position as manager of

communications at Holy Cross Hospital in Silver Spring, land.

It should be noted that the cost for PVI's services is dramatically less

than previous " editorship " fees which had been charged by the previous

editor.

, I understand that you have issues with the current design of the

newsletter. However, the Board has voiced its support for the current

approach.

In terms of the newsletter, and I answer to the Board, not to this

listserve. You or anyone else is welcome to voice your concerns to the

Board.

Cara Egan

LPA Public Relations

[Guest guest]

Infact I showed both old and new to other professionals in my field and

they

agreed that the new design was far and away more " with it " .. . ..

Just because you and a few others are not getting your way, you shouldn't

be

on the war path against this fine publication.

, let me ask you this? Have you gone to design school? Majored in

Journalism? Published a national publication? Written for the media?

Look Why not leave LPA Today to the professionals that are running it?

Then

once they are burned out after years of volunteerism, you can take over.

Soares

, and Cara too. . .

I'm sorry I have to step in on this discussion. The purpose of LPA Today

is to be a Newsletter for the MEMBERSHIP OF LPA, not " professionals in

your field " . I'm not going to say whether the design/layout etc is the

right or wrong, good or bad. . .. , but let's not loose focus on WHO IT

IS FOR . . .and if there are concerns they should be considered.

Cara, I agree the members need to address their concerns to their DD,

especially if they have recently given you and a vote of

confidence. But the membership does need to feel that they can address

the Exec's directly too.

Marge Carlisle

[Guest guest]

In a message dated 8/11/01 10:03:36 PM, margeclpa@... writes:

<< , and Cara too. . .

I'm sorry I have to step in on this discussion. The purpose of LPA Today

is to be a Newsletter for the MEMBERSHIP OF LPA, not " professionals in

your field " . I'm not going to say whether the design/layout etc is the

right or wrong, good or bad. . .. , but let's not loose focus on WHO IT

IS FOR . . .and if there are concerns they should be considered. >>

Marge, I respect your opinion, as well as many others.

However the " professionals " I referring to are people that designed

publications for mass audiences, narrow audiences and special interest groups.

Unless LP's should be treated, spoken to or communicated differently from the

rest of the world , I see no reason why " professional " advice should not be

sought.

Does this mean that if the editor of " Time " or " People " gave their input it

would be of lesser value that a lay member?

I think membership opinion comes first, however it seems to be a VERY tiny

percentage when it comes to dissatisfaction with the new LPAToday.

Not to mention there were no major complaints about LPA Today at the Exec

committee meetings or at the general assemblies in Toronto.

The real question is does LPA want LPA today to be more like " Time Magazine "

or ike " People magazine "

I think a combination of both.

[Guest guest]

Fellow LP's,

Enough is enough!!! Must we drag this topic up year after year? As I learned

during my first term as President, there is not way we are ever going to

please every member. You must be satisfied with doing what is best for the

whole organization. It appears the majority of the membership is satisfied

with what their dues are being used for. Let's give this a rest or bury it

once and for all!! Unless you are ready to step in and take over or service

as a contributing editor?

I'm tired of reading messages, from first time joiners to this service, who

are wondering just what they have gotten involved in? Is this the first

impression we want potential members to have of LPA? I THINK NOT!

By the way, anyone wishing to learn just how their dues are spent by the LPA

execs. can request a copy of the working budget(director/exec). I believe at

one time it was to be published in the LPA Today.

C.