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Judith,

This is a wonderful post that I can deeply identify with.

I am also working on repairing the damage done by peering

into that AA mirror. In that mirror was a beaten, sad person

who felt that they had nothing to do with controlling any

of the events in their life. That person had been told that

they had no choices because they were powerless over people,

places and things. And ultimately powerless over them-

selves. And there is where the fear appeared for me. To

be afraid and never trust ones own self is perhaps a fate

worse than death. The mental torment is horrendous.

Eventually taking a leap off of a tall bridge would have

been a better choice than looking into the mirror that AA

had created for me.

In today's mirror, I have been pleasantly surprised occassion-

ally, when I catch myself with a smile. The smile is

looking back at me for me. From me, to me. In the eyes

above the smile I am beginning to see faint amounts of

trust. And dare I say? Even maybe a teeny, tiny amount of

" self-like " . At least enough to make the effort to

take care of the person in the mirror for the first time

in my life.

PS. I am also white, American female, 40 and agree that

humility is not the fix for me.

Sue

>

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Guest guest

Dear Sue,

You touched a nerve with your remarks about the choice between being an

all-out AA " loyal plastic robot for a world that doesn't care " ( Zappa)

and jumping off a tall builidng as the basic AA options. I could never quite

understand why my stepNazi wife insisted she had to leave me as she would

have to commit suicide if she did not. You've helped me too, a little,

Yours,

.

>

>Reply-To: 12-step-freeegroups

>To: 12-step-freeegroups

>Subject: Re: Judith

>Date: Sun, 14 May 2000 03:23:10 GMT

>

>

> Judith,

>

> This is a wonderful post that I can deeply identify with.

>

> I am also working on repairing the damage done by peering

> into that AA mirror. In that mirror was a beaten, sad person

> who felt that they had nothing to do with controlling any

> of the events in their life. That person had been told that

> they had no choices because they were powerless over people,

> places and things. And ultimately powerless over them-

> selves. And there is where the fear appeared for me. To

> be afraid and never trust ones own self is perhaps a fate

> worse than death. The mental torment is horrendous.

> Eventually taking a leap off of a tall bridge would have

> been a better choice than looking into the mirror that AA

> had created for me.

> In today's mirror, I have been pleasantly surprised occassion-

> ally, when I catch myself with a smile. The smile is

> looking back at me for me. From me, to me. In the eyes

> above the smile I am beginning to see faint amounts of

> trust. And dare I say? Even maybe a teeny, tiny amount of

> " self-like " . At least enough to make the effort to

> take care of the person in the mirror for the first time

> in my life.

>

> PS. I am also white, American female, 40 and agree that

> humility is not the fix for me.

> Sue

>

> >

>________________________________________________________________________

>Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

>

________________________________________________________________________

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Guest guest

It has really helped me to find a group of people who can understand what I

went through. I stayed up most of the night reading Ken's book, and I hope I

don't sound like too much of a brown-nose when I say it is EXCELLENT. I

like the balance between personal experience and research-based evidence.

I'm glad you have a smarter mirror now, Sue :)

Judith

On Sun, 14 May 2000 03:23:10 GMT, 12-step-freeegroups wrote:

> Judith,

>

> This is a wonderful post that I can deeply identify with.

>

> I am also working on repairing the damage done by peering

> into that AA mirror. In that mirror was a beaten, sad person

> who felt that they had nothing to do with controlling any

> of the events in their life. That person had been told that

> they had no choices because they were powerless over people,

> places and things. And ultimately powerless over them-

> selves. And there is where the fear appeared for me. To

> be afraid and never trust ones own self is perhaps a fate

> worse than death. The mental torment is horrendous.

> Eventually taking a leap off of a tall bridge would have

> been a better choice than looking into the mirror that AA

> had created for me.

> In today's mirror, I have been pleasantly surprised occassion-

> ally, when I catch myself with a smile. The smile is

> looking back at me for me. From me, to me. In the eyes

> above the smile I am beginning to see faint amounts of

> trust. And dare I say? Even maybe a teeny, tiny amount of

> " self-like " . At least enough to make the effort to

> take care of the person in the mirror for the first time

> in my life.

>

> PS. I am also white, American female, 40 and agree that

> humility is not the fix for me.

> Sue

_______________________________________________________

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Visit http://freelane.excite.com/freeisp

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Guest guest

How many people do you suppose there are who feel the way we feel and don't dare

to say so? I felt this way for years before I found others on the internet. I

didn't dare say a word. How many fellow-sufferers do you suppose I had, and who

haven't yet found the groups on the internet?

---

Kayleigh

Zz

zZ

|\ z _,,,---,,_

/,`.-'`' _ ;-;;,_

|,4- ) )-,_..;\ ( `'-'

'---''(_/--' `-'\_)

>It has really helped me to find a group of people who can understand what I

>went through. I stayed up most of the night reading Ken's book, and I hope I

>don't sound like too much of a brown-nose when I say it is EXCELLENT. I

>like the balance between personal experience and research-based evidence.

>

>I'm glad you have a smarter mirror now, Sue :)

>

>Judith

>

--== Sent via Deja.com http://www.deja.com/ ==--

Before you buy.

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Guest guest

Hey Judith

I suffered " Ragge redeye " when I read his book too!

similar effect is also occurring as I read " Resisting 12-step

coercion " which he co-authors with Stanton Peel and Archie Brodsky.

P.

>

> > Judith,

> >

> > This is a wonderful post that I can deeply identify with.

> >

> > I am also working on repairing the damage done by peering

> > into that AA mirror. In that mirror was a beaten, sad person

> > who felt that they had nothing to do with controlling any

> > of the events in their life. That person had been told that

> > they had no choices because they were powerless over people,

> > places and things. And ultimately powerless over them-

> > selves. And there is where the fear appeared for me. To

> > be afraid and never trust ones own self is perhaps a fate

> > worse than death. The mental torment is horrendous.

> > Eventually taking a leap off of a tall bridge would have

> > been a better choice than looking into the mirror that AA

> > had created for me.

> > In today's mirror, I have been pleasantly surprised

occassion-

> > ally, when I catch myself with a smile. The smile is

> > looking back at me for me. From me, to me. In the eyes

> > above the smile I am beginning to see faint amounts of

> > trust. And dare I say? Even maybe a teeny, tiny amount of

> > " self-like " . At least enough to make the effort to

> > take care of the person in the mirror for the first time

> > in my life.

> >

> > PS. I am also white, American female, 40 and agree that

> > humility is not the fix for me.

> > Sue

>

>

>

>

>

> _______________________________________________________

> Get 100% FREE Internet Access powered by Excite

> Visit http://freelane.excite.com/freeisp

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  • 1 month later...
Guest guest

Thank you Carol. I will look for that book, it sounds like a good one. I

really like your last line, it really is speaking to me somehow.

Judith

> Hugs and sighs.

>

> Treat yourself to treats no matter how small. Like flowers, music, " How

to Survive the Loss of a Loved One " by Harold Bloom and Melba Colgrove. It

has very little print on each page and is a cathartic reading. The American

Psychological association recommends it. I and my friends have found it

helpful for any loss. Take care. Treat yourself with the care modeled on

those who cared well for you when you were a child.

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  • 7 months later...

----- Original Message -----

> Some things to consider:

>

> Were the stats on accurate dx based on muscle biopsy given to you? If

the

> carb loading is definitive (assuming you understood him correctly)

then why

> aren't ALL of the docs doing it to rule in or out mito? Normal

lactate in

> blood or spinal fluid does not rule it out.

*Yes, we have the info on muscle biopsy. Based on what we know (my DH is

a physician, and I'm a veterinarian and medical writer), DH had strongly

doubted the diagnosis even before we went. Looks like it was not a good

sample. Frozen is always more dicey.

I'll be talking to the doc again when we get all the test results back

to clarify things. I didn't mean that carbo loading alone ruled out

mito, but in addition to all the other testing that's been done (MRIx3,

MRI-spec, EEG, MEG, muscle biopsyx2, nerve biopsy, nerve conduction

studyx2, urine organic acids, vitamin and amino acid levels in blood and

spinal fluid, genetic testing for NARP, LHON, and DYT-1.....and many

more blood tests that I don't remember offhand) it lends strength to the

" undiagnosis " , so to speak.

So far, we have seen neurologists at Baylor (Houston), Swedish (Denver),

Primary Children's (*all* of the neurologists in the dept in Salt Lake)

and now UCSD. It's really hard at this point to think of any diagnosis

as truly definitive, or any " expert " as the ultimate authority. :-/ I

think it's more likely we will end up falling in the category of

undiagnosable peripheral neuropathy.

Judith

>

> There have been a number of controversies regarding the UCSD group;

though I

> don't know how accurate it all is. I just know of more than one

matter that

> didn't appear to be on target and I now of docs who will not refer

there for

> the same reason stating they are too new at mito dx to know how to do

so

> accurately. My impression is that there are some well intentioned

> individuals there, but, the rumors are fairly numerous and therefor

somewhat

> difficult to ignore.

>

> Lastly, have you considered obtaining an unbiased second opinion, just

for

> your own piece of mind?

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In a message dated 02/20/2001 3:34:34 PM Eastern Standard Time,

smcrjr@... writes:

<< There have been a number of controversies regarding the UCSD group; though

I

don't know how accurate it all is. I just know of more than one matter that

didn't appear to be on target and I now of docs who will not refer there for

the same reason stating they are too new at mito dx to know how to do so

accurately. My impression is that there are some well intentioned

individuals there, but, the rumors are fairly numerous and therefor somewhat

difficult to ignore. >>

Hi:

If there is any way you could tell me about these controversies I would

appreciate it as I am planning a trip there. Thank you.

Michele Sullivan

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