Re: ADHD brain (long story and history, sorry)

[Guest guest]

Truly. I spent my whole life - up until my very late

twenties - with my entire identity wrapped up in how

drastically different I was from everyone else ...

convinced my brain was drastically different and

therefore could never fit in. I adapted to embrace my

wierdness, laughed at my tics and wierd behaviors,

laughed at how my brain could scatter.

I didn't know early on until around age 16 or 17, when

I could first actually talk with peers ... but even

then it was rather abnormal because I was always

quizzing my friends about 'do you do this?' or

whatever (like do socks make you wanna freak out, or

do you hear the same song note for note in your head

at all times, and do sometimes 3 or 4 play?). At

first I just wanted to know what song played in

other's head non-stop (mine was Pink Floyd's One Of

These Days-for 15 years - thank God it was good), etc.

I wondered why people didn't walk on their toes or

walk toe-heel like me. I discovered other people

didn't feel a jolt when they made eye contact with

people (like a brief shock). I begged my friends to

show me how to walk like they do, and when I couldn't

- well, of course my brain must be wired backwards

there. Didn't mean to ramble on, but it was

horrifying at first to me to become aware of all the

stuff going on in my brain that did not occur in other

peoples. You mean, you don't have 20 thoughts going

on all at one time? What in the world do you mean

you're not thinking anything right now? That isn't

possible!

Thank God I was a teen in the 80s when many of the pop

stars were freaks and I actually seemed cool to the

high school kids with all my wierdness. I lucked out

on the culture bigtime! lol

Oops - rambling again. But! I defined myself by my

wierdness, believed I was a unique neurological

structural defect. Figured I was hopeless,

fortunately gifted in some areas, managed to thrive in

my jobs despite my periodic squeaking, chirping,

laughing outloud for no apparent reason, leaping into

the air ... once they got used to me. I accepted the

chronic severe pain and fatigue that wracked my body

at all times and even went hiking and horseback riding

and motorcycle riding because I knew even back then

that the fatigue was in my brain and I had friends who

would wait up and that horses can carry you even if

you can't sit up in the saddle and draped across them

instead. I found it curious that I could enjoy life

the way I did despite my diagnosis of severe clinical

depression (their belief of the fatigue back then).

And most of all, when all of that " stuff " started

vanishing bit by bit and one morning I woke up with a

quiet brain (bet you anything it was the first time I

took doxycycline but I dunno), I thought something was

horribly wrong, till I also noticed the pain wasn't

there either. Nor was my song (oh I miss that one).

I was frightened. I didn't leap into the air (it felt

joyful). I was suddenly lonely w/out all the songs

and thoughts. I couldn't understand what was wrong.

I went to the doctor because I didn't feel right. I

gradually realized that I had become normal, only I

didn't have an identity that could conceive of myself

as normal. I was actually depressed for the first

time ever and had to learn to be the new me. Music no

longer gave me an endorphin or dopamine rush or

whatever. I felt like I had lost everything. But I

got used to it when I discovered other things that got

so much easier.

When my first son started his symptoms and I found Dr

Goldberg and Dr Klimas's writings on CFIDS and the

literature on PANDAS and Asperger, it was the answer

to every question I had ever had about myself. It was

like going to heaven and getting the answers to the

universe. I had had a normal enough brain all along,

but it was disfunctioning. Now I can retrain it. Now

I have more hope for my dreams than I ever would have

dared to hope for before. Right now my primary goal

is learning structure from the very basics, and in

this last year have been stunned at my accomplishments

now that I'm coming out of the last PANDAS attack.

I'm completely redifining my abilities without any

belief from experience holding me back anymore.

When my last PANDAS hit in 2003 and also dealing with

the stress of starting the protocol on the boys and my

obsessive observations and hysteria every time they

got a little ill or had a rotten week, I also

experienced that brain thing, the songs, the hundreds

of thoughts and brain-loops etc all over again, after

the perspective of normal for a few years, and boy I

hated it to the very core (except the music was

awesome again - that I would give anything for again

now). The whole time, I was emotionally brittle,

fractured, verging on crazy, desperate, etc, but this

time I had hope and belief in the ability to get

better ... it just wouldn't happen the way I wanted it

to, nobody would read papers and say " Oh! Okay " and

happily hand me some meds, and the meds I could get

didn't fix me up right away but still made me sooo

much better, and golly was I pissed. But the thing I

learned best of all was humility and submission, and

to look outside of myself for help, and that lesson is

probably the best thing ever, so I thank God for these

last few years of extreme torture! Because now I'm

better again, and established with a doc who won't

likely let me get that sick again, and I know now that

I truly am going to be able to do things I've always

wanted to in life.

So moms and dads, when you look at your children

dysfunctioning deeply on levels, remember. I couldn't

make eye contact for many years (although I had

developed a lot before this happened). For several

years in my teens I could barely speak. I've run the

gamut (lesser than some of course) but the ability to

change, heal, and experience life was waiting for me,

and even at 38, I know I'm about to restructure it all

over again even better than I had ever adapted to

myself before. I'm already half-way to where I'd like

to be in just a years time.

Never give up on your kids. If I had been your

teenager, you would have thought me hopeless too. My

mom did. She freaked out in fear to no end - couldn't

fathom how I was going to have a job or anything then.

I would label myself as pretty severe Asperger at

that time, w/a lot of PANDAS and Tourette's thrown in

to really mix it up. Oh - don't forget fybromyalgia

and CFS. Today - no pain. I don't mind the mild

OCD - bet it'll keep going away too - I mean just 6

months ago it was raging.

If I was structurally defective and had a different

brain like I had always believed, no way could all of

this change so drastically. I thought the waxing and

waning over the years meant I must be bipolar on top

of everything else, except I lacked some pretty

necessary things for that diagnosis. I knew I surely

had severe ADHD the way my brain flickered - and

everyone who had ever known me shared that assessment

bigtime and helped me along there so kindly. The one

thing I'm crippled by now is the lack of good

structure and discipline, but with the help of

Flylady.net, I'm building that everyday.

I just hope that long history just reminds every

parent that there is just so much hope for each and

every child. And for those parents who can't afford a

doctor to treat their kids and feel like their kids

can't possibly have a life if they can't get meds ...

I never had a med to help with this (if I had, I know

I wouldn't have been as sick, but anyway) and I STILL

got better. Some people don't. Don't ever stop

fighting to get your kids well, but don't ever

sentence them to a horrible life ahead because you

haven't been able to help them YET, and don't torment

yourself imagining their futures.

I know your torment, people, I had it, I wanted to

die, and I can't stand the thought of you moms

suffering the kind of excruciating pain I suffered for

my kids envisioning their futures based on where they

were at that time. But I guess if we do, we get that

much more joy and strength later if we're lucky. I

would have expended that energy somewhere else if I

had known. Like learning better structure and

patiently bringing that structure to them. Because

now I'm having to do it while they're 8 & 6 and this

wasn't fun until I found the right trick. And it's

only been fun for a week so I don't know how that's

going to last. Oh- and I still trash myself daily,

hate myself many times when I see areas of structure

that are such a challenge, when I see the things I

have failed to instill YET. I'm going to keep falling

apart and then trying to put the pieces back together

with a few improvements. And you folks are the ones

who get me there.

Thanks! One day I'll find a support group for totally

shell-shocked moms like me - but you guys are that for

me right now. I see miserable moms at the playground

and see in their eyes their sadness as I watch the kid

I can spot immediately as theirs, and I want to give

them hope without trying to tell them what to do.

They have to travel that road themselves and most of

them never visit this list as far as I can tell. I

hope it changes one day.

Anyway - I'll shut up NOW. ! Love you all.

--- meljackmom <meljackmom@...> wrote:

> Different Brain category vs. MEDICAL DISEASE

> category.

>

> I have never *really contemplated* this distinction

> before and how it

> really relates to how everyone looks at our kids.

> It is tragic.

>

> Thanks for making this point.

>

>

>

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs

[Guest guest]

One question - how old were you the day your brain became quite?

alice

---- <thecolemans4@...> wrote:

> Truly. I spent my whole life - up until my very late

> twenties - with my entire identity wrapped up in how

> drastically different I was from everyone else ...

> convinced my brain was drastically different and

> therefore could never fit in. I adapted to embrace my

> wierdness, laughed at my tics and wierd behaviors,

> laughed at how my brain could scatter.

>

> I didn't know early on until around age 16 or 17, when

> I could first actually talk with peers ... but even

> then it was rather abnormal because I was always

> quizzing my friends about 'do you do this?' or

> whatever (like do socks make you wanna freak out, or

> do you hear the same song note for note in your head

> at all times, and do sometimes 3 or 4 play?). At

> first I just wanted to know what song played in

> other's head non-stop (mine was Pink Floyd's One Of

> These Days-for 15 years - thank God it was good), etc.

> I wondered why people didn't walk on their toes or

> walk toe-heel like me. I discovered other people

> didn't feel a jolt when they made eye contact with

> people (like a brief shock). I begged my friends to

> show me how to walk like they do, and when I couldn't

> - well, of course my brain must be wired backwards

> there. Didn't mean to ramble on, but it was

> horrifying at first to me to become aware of all the

> stuff going on in my brain that did not occur in other

> peoples. You mean, you don't have 20 thoughts going

> on all at one time? What in the world do you mean

> you're not thinking anything right now? That isn't

> possible!

>

> Thank God I was a teen in the 80s when many of the pop

> stars were freaks and I actually seemed cool to the

> high school kids with all my wierdness. I lucked out

> on the culture bigtime! lol

>

> Oops - rambling again. But! I defined myself by my

> wierdness, believed I was a unique neurological

> structural defect. Figured I was hopeless,

> fortunately gifted in some areas, managed to thrive in

> my jobs despite my periodic squeaking, chirping,

> laughing outloud for no apparent reason, leaping into

> the air ... once they got used to me. I accepted the

> chronic severe pain and fatigue that wracked my body

> at all times and even went hiking and horseback riding

> and motorcycle riding because I knew even back then

> that the fatigue was in my brain and I had friends who

> would wait up and that horses can carry you even if

> you can't sit up in the saddle and draped across them

> instead. I found it curious that I could enjoy life

> the way I did despite my diagnosis of severe clinical

> depression (their belief of the fatigue back then).

>

> And most of all, when all of that " stuff " started

> vanishing bit by bit and one morning I woke up with a

> quiet brain (bet you anything it was the first time I

> took doxycycline but I dunno), I thought something was

> horribly wrong, till I also noticed the pain wasn't

> there either. Nor was my song (oh I miss that one).

> I was frightened. I didn't leap into the air (it felt

> joyful). I was suddenly lonely w/out all the songs

> and thoughts. I couldn't understand what was wrong.

> I went to the doctor because I didn't feel right. I

> gradually realized that I had become normal, only I

> didn't have an identity that could conceive of myself

> as normal. I was actually depressed for the first

> time ever and had to learn to be the new me. Music no

> longer gave me an endorphin or dopamine rush or

> whatever. I felt like I had lost everything. But I

> got used to it when I discovered other things that got

> so much easier.

>

> When my first son started his symptoms and I found Dr

> Goldberg and Dr Klimas's writings on CFIDS and the

> literature on PANDAS and Asperger, it was the answer

> to every question I had ever had about myself. It was

> like going to heaven and getting the answers to the

> universe. I had had a normal enough brain all along,

> but it was disfunctioning. Now I can retrain it. Now

> I have more hope for my dreams than I ever would have

> dared to hope for before. Right now my primary goal

> is learning structure from the very basics, and in

> this last year have been stunned at my accomplishments

> now that I'm coming out of the last PANDAS attack.

> I'm completely redifining my abilities without any

> belief from experience holding me back anymore.

>

> When my last PANDAS hit in 2003 and also dealing with

> the stress of starting the protocol on the boys and my

> obsessive observations and hysteria every time they

> got a little ill or had a rotten week, I also

> experienced that brain thing, the songs, the hundreds

> of thoughts and brain-loops etc all over again, after

> the perspective of normal for a few years, and boy I

> hated it to the very core (except the music was

> awesome again - that I would give anything for again

> now). The whole time, I was emotionally brittle,

> fractured, verging on crazy, desperate, etc, but this

> time I had hope and belief in the ability to get

> better ... it just wouldn't happen the way I wanted it

> to, nobody would read papers and say " Oh! Okay " and

> happily hand me some meds, and the meds I could get

> didn't fix me up right away but still made me sooo

> much better, and golly was I pissed. But the thing I

> learned best of all was humility and submission, and

> to look outside of myself for help, and that lesson is

> probably the best thing ever, so I thank God for these

> last few years of extreme torture! Because now I'm

> better again, and established with a doc who won't

> likely let me get that sick again, and I know now that

> I truly am going to be able to do things I've always

> wanted to in life.

>

> So moms and dads, when you look at your children

> dysfunctioning deeply on levels, remember. I couldn't

> make eye contact for many years (although I had

> developed a lot before this happened). For several

> years in my teens I could barely speak. I've run the

> gamut (lesser than some of course) but the ability to

> change, heal, and experience life was waiting for me,

> and even at 38, I know I'm about to restructure it all

> over again even better than I had ever adapted to

> myself before. I'm already half-way to where I'd like

> to be in just a years time.

>

> Never give up on your kids. If I had been your

> teenager, you would have thought me hopeless too. My

> mom did. She freaked out in fear to no end - couldn't

> fathom how I was going to have a job or anything then.

> I would label myself as pretty severe Asperger at

> that time, w/a lot of PANDAS and Tourette's thrown in

> to really mix it up. Oh - don't forget fybromyalgia

> and CFS. Today - no pain. I don't mind the mild

> OCD - bet it'll keep going away too - I mean just 6

> months ago it was raging.

>

> If I was structurally defective and had a different

> brain like I had always believed, no way could all of

> this change so drastically. I thought the waxing and

> waning over the years meant I must be bipolar on top

> of everything else, except I lacked some pretty

> necessary things for that diagnosis. I knew I surely

> had severe ADHD the way my brain flickered - and

> everyone who had ever known me shared that assessment

> bigtime and helped me along there so kindly. The one

> thing I'm crippled by now is the lack of good

> structure and discipline, but with the help of

> Flylady.net, I'm building that everyday.

>

> I just hope that long history just reminds every

> parent that there is just so much hope for each and

> every child. And for those parents who can't afford a

> doctor to treat their kids and feel like their kids

> can't possibly have a life if they can't get meds ...

> I never had a med to help with this (if I had, I know

> I wouldn't have been as sick, but anyway) and I STILL

> got better. Some people don't. Don't ever stop

> fighting to get your kids well, but don't ever

> sentence them to a horrible life ahead because you

> haven't been able to help them YET, and don't torment

> yourself imagining their futures.

>

> I know your torment, people, I had it, I wanted to

> die, and I can't stand the thought of you moms

> suffering the kind of excruciating pain I suffered for

> my kids envisioning their futures based on where they

> were at that time. But I guess if we do, we get that

> much more joy and strength later if we're lucky. I

> would have expended that energy somewhere else if I

> had known. Like learning better structure and

> patiently bringing that structure to them. Because

> now I'm having to do it while they're 8 & 6 and this

> wasn't fun until I found the right trick. And it's

> only been fun for a week so I don't know how that's

> going to last. Oh- and I still trash myself daily,

> hate myself many times when I see areas of structure

> that are such a challenge, when I see the things I

> have failed to instill YET. I'm going to keep falling

> apart and then trying to put the pieces back together

> with a few improvements. And you folks are the ones

> who get me there.

>

> Thanks! One day I'll find a support group for totally

> shell-shocked moms like me - but you guys are that for

> me right now. I see miserable moms at the playground

> and see in their eyes their sadness as I watch the kid

> I can spot immediately as theirs, and I want to give

> them hope without trying to tell them what to do.

> They have to travel that road themselves and most of

> them never visit this list as far as I can tell. I

> hope it changes one day.

>

> Anyway - I'll shut up NOW. ! Love you all.

>

>

> --- meljackmom <meljackmom@...> wrote:

>

> > Different Brain category vs. MEDICAL DISEASE

> > category.

> >

> > I have never *really contemplated* this distinction

> > before and how it

> > really relates to how everyone looks at our kids.

> > It is tragic.

> >

> > Thanks for making this point.

> >

> >

> >

>

>

>

________________________________________________________________________________\

____

> Never miss a thing. Make your home page.

> http://www./r/hs

>

>

> Responsibility for the content of this message lies strictly with

> the original author(s), and is not necessarily endorsed by or the

> opinion of the Research Institute, the Parent Coalition, or the list

moderator(s).

>

>

[Guest guest]

hugs and kisses. love Kavita

<thecolemans4@...> wrote: Truly. I spent my whole

life - up until my very late

twenties - with my entire identity wrapped up in how

drastically different I was from everyone else ...

convinced my brain was drastically different and

therefore could never fit in. I adapted to embrace my

wierdness, laughed at my tics and wierd behaviors,

laughed at how my brain could scatter.

I didn't know early on until around age 16 or 17, when

I could first actually talk with peers ... but even

then it was rather abnormal because I was always

quizzing my friends about 'do you do this?' or

whatever (like do socks make you wanna freak out, or

do you hear the same song note for note in your head

at all times, and do sometimes 3 or 4 play?). At

first I just wanted to know what song played in

other's head non-stop (mine was Pink Floyd's One Of

These Days-for 15 years - thank God it was good), etc.

I wondered why people didn't walk on their toes or

walk toe-heel like me. I discovered other people

didn't feel a jolt when they made eye contact with

people (like a brief shock). I begged my friends to

show me how to walk like they do, and when I couldn't

- well, of course my brain must be wired backwards

there. Didn't mean to ramble on, but it was

horrifying at first to me to become aware of all the

stuff going on in my brain that did not occur in other

peoples. You mean, you don't have 20 thoughts going

on all at one time? What in the world do you mean

you're not thinking anything right now? That isn't

possible!

Thank God I was a teen in the 80s when many of the pop

stars were freaks and I actually seemed cool to the

high school kids with all my wierdness. I lucked out

on the culture bigtime! lol

Oops - rambling again. But! I defined myself by my

wierdness, believed I was a unique neurological

structural defect. Figured I was hopeless,

fortunately gifted in some areas, managed to thrive in

my jobs despite my periodic squeaking, chirping,

laughing outloud for no apparent reason, leaping into

the air ... once they got used to me. I accepted the

chronic severe pain and fatigue that wracked my body

at all times and even went hiking and horseback riding

and motorcycle riding because I knew even back then

that the fatigue was in my brain and I had friends who

would wait up and that horses can carry you even if

you can't sit up in the saddle and draped across them

instead. I found it curious that I could enjoy life

the way I did despite my diagnosis of severe clinical

depression (their belief of the fatigue back then).

And most of all, when all of that " stuff " started

vanishing bit by bit and one morning I woke up with a

quiet brain (bet you anything it was the first time I

took doxycycline but I dunno), I thought something was

horribly wrong, till I also noticed the pain wasn't

there either. Nor was my song (oh I miss that one).

I was frightened. I didn't leap into the air (it felt

joyful). I was suddenly lonely w/out all the songs

and thoughts. I couldn't understand what was wrong.

I went to the doctor because I didn't feel right. I

gradually realized that I had become normal, only I

didn't have an identity that could conceive of myself

as normal. I was actually depressed for the first

time ever and had to learn to be the new me. Music no

longer gave me an endorphin or dopamine rush or

whatever. I felt like I had lost everything. But I

got used to it when I discovered other things that got

so much easier.

When my first son started his symptoms and I found Dr

Goldberg and Dr Klimas's writings on CFIDS and the

literature on PANDAS and Asperger, it was the answer

to every question I had ever had about myself. It was

like going to heaven and getting the answers to the

universe. I had had a normal enough brain all along,

but it was disfunctioning. Now I can retrain it. Now

I have more hope for my dreams than I ever would have

dared to hope for before. Right now my primary goal

is learning structure from the very basics, and in

this last year have been stunned at my accomplishments

now that I'm coming out of the last PANDAS attack.

I'm completely redifining my abilities without any

belief from experience holding me back anymore.

When my last PANDAS hit in 2003 and also dealing with

the stress of starting the protocol on the boys and my

obsessive observations and hysteria every time they

got a little ill or had a rotten week, I also

experienced that brain thing, the songs, the hundreds

of thoughts and brain-loops etc all over again, after

the perspective of normal for a few years, and boy I

hated it to the very core (except the music was

awesome again - that I would give anything for again

now). The whole time, I was emotionally brittle,

fractured, verging on crazy, desperate, etc, but this

time I had hope and belief in the ability to get

better ... it just wouldn't happen the way I wanted it

to, nobody would read papers and say " Oh! Okay " and

happily hand me some meds, and the meds I could get

didn't fix me up right away but still made me sooo

much better, and golly was I pissed. But the thing I

learned best of all was humility and submission, and

to look outside of myself for help, and that lesson is

probably the best thing ever, so I thank God for these

last few years of extreme torture! Because now I'm

better again, and established with a doc who won't

likely let me get that sick again, and I know now that

I truly am going to be able to do things I've always

wanted to in life.

So moms and dads, when you look at your children

dysfunctioning deeply on levels, remember. I couldn't

make eye contact for many years (although I had

developed a lot before this happened). For several

years in my teens I could barely speak. I've run the

gamut (lesser than some of course) but the ability to

change, heal, and experience life was waiting for me,

and even at 38, I know I'm about to restructure it all

over again even better than I had ever adapted to

myself before. I'm already half-way to where I'd like

to be in just a years time.

Never give up on your kids. If I had been your

teenager, you would have thought me hopeless too. My

mom did. She freaked out in fear to no end - couldn't

fathom how I was going to have a job or anything then.

I would label myself as pretty severe Asperger at

that time, w/a lot of PANDAS and Tourette's thrown in

to really mix it up. Oh - don't forget fybromyalgia

and CFS. Today - no pain. I don't mind the mild

OCD - bet it'll keep going away too - I mean just 6

months ago it was raging.

If I was structurally defective and had a different

brain like I had always believed, no way could all of

this change so drastically. I thought the waxing and

waning over the years meant I must be bipolar on top

of everything else, except I lacked some pretty

necessary things for that diagnosis. I knew I surely

had severe ADHD the way my brain flickered - and

everyone who had ever known me shared that assessment

bigtime and helped me along there so kindly. The one

thing I'm crippled by now is the lack of good

structure and discipline, but with the help of

Flylady.net, I'm building that everyday.

I just hope that long history just reminds every

parent that there is just so much hope for each and

every child. And for those parents who can't afford a

doctor to treat their kids and feel like their kids

can't possibly have a life if they can't get meds ...

I never had a med to help with this (if I had, I know

I wouldn't have been as sick, but anyway) and I STILL

got better. Some people don't. Don't ever stop

fighting to get your kids well, but don't ever

sentence them to a horrible life ahead because you

haven't been able to help them YET, and don't torment

yourself imagining their futures.

I know your torment, people, I had it, I wanted to

die, and I can't stand the thought of you moms

suffering the kind of excruciating pain I suffered for

my kids envisioning their futures based on where they

were at that time. But I guess if we do, we get that

much more joy and strength later if we're lucky. I

would have expended that energy somewhere else if I

had known. Like learning better structure and

patiently bringing that structure to them. Because

now I'm having to do it while they're 8 & 6 and this

wasn't fun until I found the right trick. And it's

only been fun for a week so I don't know how that's

going to last. Oh- and I still trash myself daily,

hate myself many times when I see areas of structure

that are such a challenge, when I see the things I

have failed to instill YET. I'm going to keep falling

apart and then trying to put the pieces back together

with a few improvements. And you folks are the ones

who get me there.

Thanks! One day I'll find a support group for totally

shell-shocked moms like me - but you guys are that for

me right now. I see miserable moms at the playground

and see in their eyes their sadness as I watch the kid

I can spot immediately as theirs, and I want to give

them hope without trying to tell them what to do.

They have to travel that road themselves and most of

them never visit this list as far as I can tell. I

hope it changes one day.

Anyway - I'll shut up NOW. ! Love you all.

--- meljackmom <meljackmom@...> wrote:

> Different Brain category vs. MEDICAL DISEASE

> category.

>

> I have never *really contemplated* this distinction

> before and how it

> really relates to how everyone looks at our kids.

> It is tragic.

>

> Thanks for making this point.

>

>

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I think about 28 or 29 although I could have been 30

--- lucysky@... wrote:

> One question - how old were you the day your brain

> became quite?

> alice

>

> ---- <thecolemans4@...> wrote:

>

> > Truly. I spent my whole life - up until my very

> late

> > twenties - with my entire identity wrapped up in

> how

> > drastically different I was from everyone else ...

> > convinced my brain was drastically different and

> > therefore could never fit in. I adapted to

> embrace my

> > wierdness, laughed at my tics and wierd behaviors,

> > laughed at how my brain could scatter.

> >

> > I didn't know early on until around age 16 or 17,

> when

> > I could first actually talk with peers ... but

> even

> > then it was rather abnormal because I was always

> > quizzing my friends about 'do you do this?' or

> > whatever (like do socks make you wanna freak out,

> or

> > do you hear the same song note for note in your

> head

> > at all times, and do sometimes 3 or 4 play?). At

> > first I just wanted to know what song played in

> > other's head non-stop (mine was Pink Floyd's One

> Of

> > These Days-for 15 years - thank God it was good),

> etc.

> > I wondered why people didn't walk on their toes or

> > walk toe-heel like me. I discovered other people

> > didn't feel a jolt when they made eye contact with

> > people (like a brief shock). I begged my friends

> to

> > show me how to walk like they do, and when I

> couldn't

> > - well, of course my brain must be wired backwards

> > there. Didn't mean to ramble on, but it was

> > horrifying at first to me to become aware of all

> the

> > stuff going on in my brain that did not occur in

> other

> > peoples. You mean, you don't have 20 thoughts

> going

> > on all at one time? What in the world do you mean

> > you're not thinking anything right now? That

> isn't

> > possible!

> >

> > Thank God I was a teen in the 80s when many of the

> pop

> > stars were freaks and I actually seemed cool to

> the

> > high school kids with all my wierdness. I lucked

> out

> > on the culture bigtime! lol

> >

> > Oops - rambling again. But! I defined myself by

> my

> > wierdness, believed I was a unique neurological

> > structural defect. Figured I was hopeless,

> > fortunately gifted in some areas, managed to

> thrive in

> > my jobs despite my periodic squeaking, chirping,

> > laughing outloud for no apparent reason, leaping

> into

> > the air ... once they got used to me. I accepted

> the

> > chronic severe pain and fatigue that wracked my

> body

> > at all times and even went hiking and horseback

> riding

> > and motorcycle riding because I knew even back

> then

> > that the fatigue was in my brain and I had friends

> who

> > would wait up and that horses can carry you even

> if

> > you can't sit up in the saddle and draped across

> them

> > instead. I found it curious that I could enjoy

> life

> > the way I did despite my diagnosis of severe

> clinical

> > depression (their belief of the fatigue back

> then).

> >

> > And most of all, when all of that " stuff " started

> > vanishing bit by bit and one morning I woke up

> with a

> > quiet brain (bet you anything it was the first

> time I

> > took doxycycline but I dunno), I thought something

> was

> > horribly wrong, till I also noticed the pain

> wasn't

> > there either. Nor was my song (oh I miss that

> one).

> > I was frightened. I didn't leap into the air (it

> felt

> > joyful). I was suddenly lonely w/out all the

> songs

> > and thoughts. I couldn't understand what was

> wrong.

> > I went to the doctor because I didn't feel right.

> I

> > gradually realized that I had become normal, only

> I

> > didn't have an identity that could conceive of

> myself

> > as normal. I was actually depressed for the first

> > time ever and had to learn to be the new me.

> Music no

> > longer gave me an endorphin or dopamine rush or

> > whatever. I felt like I had lost everything. But

> I

> > got used to it when I discovered other things that

> got

> > so much easier.

> >

> > When my first son started his symptoms and I found

> Dr

> > Goldberg and Dr Klimas's writings on CFIDS and the

> > literature on PANDAS and Asperger, it was the

> answer

> > to every question I had ever had about myself. It

> was

> > like going to heaven and getting the answers to

> the

> > universe. I had had a normal enough brain all

> along,

> > but it was disfunctioning. Now I can retrain it.

> Now

> > I have more hope for my dreams than I ever would

> have

> > dared to hope for before. Right now my primary

> goal

> > is learning structure from the very basics, and in

> > this last year have been stunned at my

> accomplishments

> > now that I'm coming out of the last PANDAS attack.

>

> > I'm completely redifining my abilities without any

> > belief from experience holding me back anymore.

> >

> > When my last PANDAS hit in 2003 and also dealing

> with

> > the stress of starting the protocol on the boys

> and my

> > obsessive observations and hysteria every time

> they

> > got a little ill or had a rotten week, I also

> > experienced that brain thing, the songs, the

> hundreds

> > of thoughts and brain-loops etc all over again,

> after

> > the perspective of normal for a few years, and boy

> I

> > hated it to the very core (except the music was

> > awesome again - that I would give anything for

> again

> > now). The whole time, I was emotionally brittle,

> > fractured, verging on crazy, desperate, etc, but

> this

> > time I had hope and belief in the ability to get

> > better ... it just wouldn't happen the way I

> wanted it

> > to, nobody would read papers and say " Oh! Okay "

> and

> > happily hand me some meds, and the meds I could

> get

> > didn't fix me up right away but still made me sooo

> > much better, and golly was I pissed. But the

> thing I

> > learned best of all was humility and submission,

> and

> > to look outside of myself for help, and that

> lesson is

> > probably the best thing ever, so I thank God for

> these

> > last few years of extreme torture! Because now

> I'm

> > better again, and established with a doc who won't

> > likely let me get that sick again, and I know now

> that

> > I truly am going to be able to do things I've

> always

> > wanted to in life.

> >

> > So moms and dads, when you look at your children

> > dysfunctioning deeply on levels, remember. I

> couldn't

> > make eye contact for many years (although I had

> > developed a lot before this happened). For

> several

> > years in my teens I could barely speak. I've run

> the

>

=== message truncated ===

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[Guest guest]

I would just like to let you know how much I appreciate you telling

that. It gave me even greater insight to part of you- as well as your

strength.

A lot of it (although not all) I could absolutely relate with myself

growing up (and still even now.) It is cool to see hope ahead of me-

while being 25 years old myself.

Thanks again! (BTW- I've heard the 'retraining' the brain aspect-

could you give a little more detail what that is about- as I will need

to be doing the same thing as well I am told. )

-

>

> > Different Brain category vs. MEDICAL DISEASE

> > category.

> >

> > I have never *really contemplated* this distinction

> > before and how it

> > really relates to how everyone looks at our kids.

> > It is tragic.

> >

> > Thanks for making this point.

> >

> >

> >

>

>

>

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