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In a message dated 6/9/2003 5:47:07 PM Central Standard Time,

Kvanryzin@... writes:

> One misconception that I run

> into a lot is people thinking that a child with less obvious features of ds

> must

> be more capable than a child with prominent features.

>

> Karyn

HI Karyn :)

Also don't you find some folks will talk baby-talk to our kids, thinking

because they are language impaired that this is what they want? Once Sara asked

this elderly man in the grocery why he was talking baby talk ........... he

about died, he was a wee bit embarrassed and said " Oh so you are a big girl " I

wanted to say " yes and she is a sassy girl "

Kathy mom to Sara 11

(^) (^) (^) (^) (^)

,,\)/,,,\)/,,,\)/,,,\)/,,,\)/,,

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In a message dated 6/9/2003 8:04:47 PM Eastern Daylight Time,

b4alltoday@... writes:

> Also don't you find some folks will talk baby-talk to our kids, thinking

> because they are language impaired that this is what they want?

One of my favorite parts from the movie The Eighth Day is when the two

actors are driving in the car and the young man with DS is not responding to the

other's questions .. .which makes that man get REALLY REALLY LOUD. Finally the

guy with DS yells back, " I'm not DEAF! " ;-)

Cheryl in VA

People with disabilities are here today to remind us that equal justice under

the law is not a privilege but a fundamental birthright in America.

                            Senator Ted Kennedy, during the Senate's passage

of ADA-July 13, 1990

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Tim is often talked down to, partly becoz of the language issues and partly

becoz he is so small, tho I noticed today he has grown and is as big as some

of the 5 year olds in school now! I've had a lot of comments along the

lines of he must only have a 'touch' of down's becoz its not in his face,

but this is a kid who is pretty much bog standard average ability for a boy

his age with ds, even verging on the less able in some respects. It really

is in the genes and not the appearance!

sue wong

Re: a

> In a message dated 6/9/2003 5:47:07 PM Central Standard Time,

> Kvanryzin@... writes:

>

>

> > One misconception that I run

> > into a lot is people thinking that a child with less obvious features of

ds

> > must

> > be more capable than a child with prominent features.

> >

> > Karyn

>

>

> HI Karyn :)

>

> Also don't you find some folks will talk baby-talk to our kids, thinking

> because they are language impaired that this is what they want? Once Sara

asked

> this elderly man in the grocery why he was talking baby talk ...........

he

> about died, he was a wee bit embarrassed and said " Oh so you are a big

girl " I

> wanted to say " yes and she is a sassy girl "

>

> Kathy mom to Sara 11

>

>

> (^) (^) (^) (^) (^)

> ,,\)/,,,\)/,,,\)/,,,\)/,,,\)/,,

>

>

>

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  • 1 month later...
Guest guest

In a message dated 7/17/2003 8:18:24 PM Eastern Daylight Time,

greenpak@... writes:

> YAAAAAAAA P-A-R-T-Y AT CHARLENE'S PLACE. Oh Yes!

> Charlyne

> Mom to Zeb 10 DS/OCD ?

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In a message dated 7/17/2003 8:18:24 PM Eastern Daylight Time,

greenpak@... writes:

> YAAAAAAAA P-A-R-T-Y AT CHARLENE'S PLACE. Oh Yes!

> Charlyne

> Mom to Zeb 10 DS/OCD ?

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  • 3 weeks later...

In a message dated 8/12/2003 7:26:38 PM Eastern Daylight Time,

greenpak@... writes:

> sometimes i wish i had a suagther to do fun stuff like that with, take her

> out for me too, shawna.

>

Hi a,

I would take the boys anytime to the girls. I have one you could borrow

anytime,LOL.

Charlyne

Mom to Zeb 10 DS/OCD ?

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hehehehe may take u up on that sometime,lol shawna

Re: a

> In a message dated 8/12/2003 7:26:38 PM Eastern Daylight Time,

> greenpak@... writes:

>

>

> > sometimes i wish i had a suagther to do fun stuff like that with, take

her

> > out for me too, shawna.

> >

>

> Hi a,

> I would take the boys anytime to the girls. I have one you could borrow

> anytime,LOL.

> Charlyne

> Mom to Zeb 10 DS/OCD ?

>

>

>

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  • 1 month later...

Hi Gail,

Thanks for asking about Hannah. I have not seen the chair appear yet in

the classroom but I have noticed that Hannah is no longer tied into her chair.

For that I am thankful! Hannah has had about as much time at home being sick as

being in school so the chair could have arrived and disappeared the same day

when we weren't there. I will have to call the kindergarten teacher and see if

it actually was delivered. If so, then I'll ask about it.

I'm still not sure what to think about the school. I LOVE the SLP! She is

the augmentative communication queen of the entire school district and she is

just in the room next door and actually asked to have Hannah put on her

caseload. WOW, somebody actually wanted my kid!

The rest, I don't know yet. Her kindergarten teacher was tops last year.

Hard to beat that. We have conferences coming up in 2 weeks so we'll see.

Blessings,

a

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> Hey hon...I forgot to say WELCOME BACK! Ain't it too cool to have

a

> computer at home so you can play here all day with us! lol

>

> Are you ready for a little butt kicking? Too bad your getting it

> anyway..lol..I'm sorry your still having problems with

> vomiting...but I see that as no excuse for not exercising. Hey

you

************************************************

yes mommy, i was listening. geez- you know me too well. i am

walking - which i love. the weather is getting so nice now. thats

all i do though. at 4 weeks out, im not going to the gym yet. i walk

with my doggies though.

vicki

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  • 4 weeks later...

I was going to write an e-mail to you, but instead I will just go with what Sheila said. So, DITTO! and I'm praying for you!

Cherilyn

-----Original Message-----From: Sheila [mailto:sjackson@...]Sent: 03 November 2003 5:00 PM100-plus Subject: a

Hi a,

What's going on with you? You have been a big source of inspiration for me on this list and I just worry that you are heading the wrong way. Why did you buy candy? What can I do to help a?

We are in this together kid.

Sheila

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.534 / Virus Database: 329 - Release Date: 10/31/2003To unsubscribe DO NOT send a message to the list.Please click on this link and unsubscribe:100-plus/join

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> What's going on with you? You have been a big source of

inspiration for me on this list and I just worry that you are heading

the wrong way. Why did you buy candy? What can I do to help a?

>

Thanks Sheila! As I just wrote in my other email it is my way of

*not* bingeing on the kids candy. I know it is there, it is mine and

I can eat a piece when the kids are eating theirs and know that I

wont' feel deprived when they are unwilling to share theirs. It may

sound odd, but they seem to be only willing to share things that I

don't like, and so to keep me from binging on their candy while they

are at school I know I can have a piece or 2 while they have theirs

at night. So far it seems to be working fine, I haven't touched

their candy which *I* think is an accomplishment in and of it's

self. Granted yes, I have chocolate in my freezer, but I'm not

chowing it all down either.

I've had a pretty good day food day, oatmeal for breakfast, left over

stirfry with brown rice for lunch and left over stew for dinner. I

had a couple of apples for snacks and 2 miniture candybars this

evening.

Maybe I should go back to posting my daily exercise and food so

everyone doesn't think I'm just pigging out on stuff. Sometimes I

feel like that must be what everyone is thinking when I don't post,

then when I do post, well... that has caused problems in the past

too.

As far as getting back to exercise and feeling better about myself I

guess maybe I need to do some soul searching again and get back with

it. There are many things going on around here and as I've told many

others you need to take care of yourself and I guess I've made *me*

less important again and I need to take control and make ME a

priority. It seems like I've been doing everything for everyone else

these days and haven't had any time to do anything for me.

> We are in this together kid.

>

Thanks Sheila, I will try to do better and post more often.

a

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****take care of yourself and I guess I've made *me*

less important again and I need to take control and make ME a

priority. It seems like I've been doing everything for everyone else

these days and haven't had any time to do anything for me.

**I can relate to this, I had five kids--all grown and on their own now, and

I never made time for just me.

Re: a

>

> > What's going on with you? You have been a big source of

> inspiration for me on this list and I just worry that you are heading

> the wrong way. Why did you buy candy? What can I do to help a?

> >

>

> Thanks Sheila! As I just wrote in my other email it is my way of

> *not* bingeing on the kids candy. I know it is there, it is mine and

> I can eat a piece when the kids are eating theirs and know that I

> wont' feel deprived when they are unwilling to share theirs. It may

> sound odd, but they seem to be only willing to share things that I

> don't like, and so to keep me from binging on their candy while they

> are at school I know I can have a piece or 2 while they have theirs

> at night. So far it seems to be working fine, I haven't touched

> their candy which *I* think is an accomplishment in and of it's

> self. Granted yes, I have chocolate in my freezer, but I'm not

> chowing it all down either.

>

> I've had a pretty good day food day, oatmeal for breakfast, left over

> stirfry with brown rice for lunch and left over stew for dinner. I

> had a couple of apples for snacks and 2 miniture candybars this

> evening.

>

> Maybe I should go back to posting my daily exercise and food so

> everyone doesn't think I'm just pigging out on stuff. Sometimes I

> feel like that must be what everyone is thinking when I don't post,

> then when I do post, well... that has caused problems in the past

> too.

>

> As far as getting back to exercise and feeling better about myself I

> guess maybe I need to do some soul searching again and get back with

> it. There are many things going on around here and as I've told many

> others you need to take care of yourself and I guess I've made *me*

> less important again and I need to take control and make ME a

> priority. It seems like I've been doing everything for everyone else

> these days and haven't had any time to do anything for me.

>

> > We are in this together kid.

> >

>

> Thanks Sheila, I will try to do better and post more often.

>

> a

>

>

>

> To unsubscribe DO NOT send a message to the list.Please click on this link

and unsubscribe:

> 100-plus/join

>

>

>

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  • 3 weeks later...

Hi a! It is always so wonderful to hear from you! A year and nearly a

month ago, I met you in the hospital...you were doing the tt thing and I was

doing the GR-DS thing...look at how far we've come! Congratulations on having

a wonderful life! Yours was a delightful post! Hugs and blessings, Ann

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  • 2 months later...

Yes a, Please visit! I'll be there w/ family the first day, then I'm

all by myself until they release me! Too far for the family to drive

everyday!

Melisa Rechenmacher

Independent Pampered Chef Kitchen Consultant # 370710

For more information e-mail me at:

KitchenStore2urdoor@...

or call 661-726-9744

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In a message dated 1/30/2004 9:03:59 AM Pacific Standard Time,

RRSandovals@... writes:

> Ann...when is your surgery date, because of course I will be in

> Delano again and again and again :(

Hi a!

I am so sorry to hear about your continued infusions...are things supposed to

get better or is this going to be a lifelong thing? I sure hope not. Since

there seem to be a number of our switch sibs with this problem now, do you

know is it strictly DS related? Or is it because you have other health

problems,

as well? Concerned minds want to know...

My surgery date is February 10. I will be arriving in Bakersfield, February

8 and staying with our wonderful resident doctor -- MARTA! She has graciously

opened her heart and home to me (since there was no room at the inn)! Preop

is Feb. 9th, 2 p.m., surgery is the second surgery of the day, Tuesday (I

arrive at the hospital at 7:30 a.m.). I really would like to make it to the

meeting Tuesday evening, but I know that is really pushing it! LOL I am not

Wonder Woman (although I wish I were)!

I would LOVE it if you have time to drop by and visit...maybe we can have a

party...Jerry is coming by and all others are welcome!!!!! No support person

with me, so I will be wanted company, plus...I want to see how everyone has

changed!

I hope things look up for you in the infusion department...I know how

terrific you look, since I saw you in December.

Hugs and blessings, Ann

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  • 2 weeks later...

Oh my gosh..I don't know what it is sis..but I was at my desk

working..and all of a quick sudden I got a headache..and I knew what

it meant..so I took my wallet and went downstairs to get an icecream

sandwhich..I moaned soooo loud when I first bit into it that I

thought someone might think I was being nasty to it..hehe..it was soo

wonderful...I dont eat sweets often...but I will allow myself to

sample..hehe..I am doing good..i believe my plateau finally broke

because like i was saying i was standing still at 230 for the

longest..my highest before surgery was 303...i go up the 7 flights of

stairs here at work..and i can actually do it over and over

again..YES I DO HUF AND PUF by time i reach the 4th flight...before

surgery i dont think i would have been able to do a set..i have NO

back pain whatsoever..i am down to 226..but still have a long way to

go...my skin gets chapped alot and yes the hair has been falling out

but still looks healthy...i have pics i just have been lazy not to

get them developed..but maybe i will have the time this weekend

because i look totally different...but see I was at this weight

before not even 4 years ago...when i moved here to Houston I just

ballooned out of control...so I will be totally thrilled to be back

at 150..even 160...i will be okay..because one thing i can say about

me..i have always worn my weight really well although some peple may

look at a 4ft11 person weighing 160 as heavy..Diva wears it well...I

have energy and doing very well in school...

I can also eat pretty much whatever I want without my systems giving

me resistance..I am sooo serious..when I hear people say that they

know which foods actually give them gas..I can't say that..I always

take Beano...but I get gas on bread one day and then maybe never have

that problem again (F.Y.I., CHICKEN HAS NEVER MADE ME GASSY...if

anything pasta i think will sometimes makes mme feel bloated but i

dont go around pooting alot unless i have to do the number 2..hehe!

So I am pretty amazed...my outlook is totally different now than what

is was recent post op..i was scared i wouldnt be able to do

this...but i am soooo normal that i forgot that i had surgery...and

u..how are u

-erica

> hey sis- give me an update. tell me all. how much have you lost??

> how ya feeling? whats life like post op for ya??

>

> vicki

> who is craving ice cream like a mad woman

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> Oh my gosh..I don't know what it is sis..but I was at my desk

> working..and all of a quick sudden I got a headache..and I knew

what

> it meant..so I took my wallet and went downstairs to get an

icecream

> sandwhich..I moaned soooo loud when I first bit into it that I

*************************************

sounds great girl.

i feel great. ive been bloated the last few days but i think its

just PMS. i am at a weight stall right now, but again, i dont lose

when its that time of the month.

i feel great..like i havent even had surgery. im bad sometimes.i eat

sweets and carbs. no sodas though- i was addicted before surgery so

i dont even go there. plus i know we shouldnt have them anyway. i

eat alot of chicken and cheese and lots of other protein. i cant eat

whilte flour- i gas my family out of the house if i do. not worth it

so i stay away. i miss bread and tortillas but thats ok- small price

to pay.

i started at a size 22 and wear a 14 now. im looking forward to

squeezing into a 10 some day. ive heard alot of people who are

afraid their weight loss will stop at about this time and im one of

them. i think i need surgery on the brain. i saw Dr Z a few weeks

ago and he is really happy with my weight loss. i told him i lose

slow and he told me i still have another year of weight loss and

that if i lose any faster, i will get too thin. so i was happy when

i left.

i havent been too hungry the last 5 days or so. dont know why but it

isnt helping me lose weight. usually im hungry 24/7. so life is

great. im happy, feel great and love life. i havent lost any hair

though- i keep waiting for that to happen. my hair feels thinner but

i havent noticed any hair coming out. maybe it is and i dont know

it. sure does feel thinner.

anyway- i miss you. talk to ya soon

hugs vicki

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  • 11 months later...

Hi a

Well, that's exactly what I thought myself. Nobody should be penalized

for somebody else's mistakes. I'll relay that info to the mother of the

girl driving the truck my daughter was in (it's their insurance that

will be paying the medical - not mine). I think she should ask the woman

at Kemper who is handling the claim for my daughter's medical bills

because it was the insurance broker that told her that her rates would

go up. Kemper called me today but I wasn't home so I can't get back

with them until Monday. By the way, not that this has anything to do

with this accident because my insurance won't be involved, but my

husband and I took out a million $ " umbrella policy " a few years ago to

protect us against any lawsuits above and beyond our regular insurance

coverage and I'm glad we have it.

Re: Digest Number 1802

Dear !

Not so at all. I worked for State Farm for years in auto insurance

and had an accident two years ago - not my fault - but had to have PT.

I was rear ended. Your insurance DOES pay your medical. We are in a NO

FAULT state, no fault aplies to medical only and will NOT affect your

rates AT ALL. That is false information completely. Your insurance

will cover ALL the medical bills up to your limit of coverage, and if

your bills go higher than the ceiling limit, then you can be covered

under your " underinsured " coverage (if you have that on your policy).

Also, if the bills go higher than a certain amount (I don't know what

the amount is set at these days) you can sue the other party and/or

their liability insurance to cover the amount and any permanent/ongoing

problems resulting from the accident. The MOST important information

for you is that it does NOT affect your rates. That is why i! t is

called NO Fault. Don't pay for anything! The insurance company will

even pay you for your mileage to and from the doctors!

a

wrote:

Now I'm learning all about the insurance " bull.... " people go through

with car accidents. Did you know that in NYS that even though it was the

other driver's fault the medical bills go against the insurance company

of whoever is driving the car your in? What a crock that is. The

mother of my daugher's friend who was driving was told by her insurance

company that if the bills aren't too high they should probably pay them

out of their pocket so that their rates don't go up. I don't know if

they told her the truth or were just trying to get her to not file a

claim for my daughter's bills. It doesn't make sense that their rates

would go up when the other driver was at fault!!

Well, I've rambled on long enough. I won't even get into the other

things that have gone wrong in my life this week. I feel like digging a

hole and burying my head until Spring. Anybody want to join me??

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  • 1 year later...
  • 1 year later...
Guest guest

Oh yes, I have been seriously considering this. But then got

sidetracked. Partly this is because I had an elevated EBV titre and a

very high c reactive protein result when the head pressure began, so I

wanted to see what the Valtrex would do. (also tried diflucan and

pennicillin with no effect) Now the chiropractor is beginning to look

like a possibility. I am thinking along the lines of mechanical

disruption of spinal fluid flow and inflammation. It's hard to say how

much cfs or Lyme is underlying my current trouble.

Conclusion for now - wait and see how some friends do on Rich's

simplified approach, meanwhile try to figure out what is really going

on with me since it doesn't really match past experience in my case.

Thanks so much for being concerned for me. It means a lot.

a

>

> a

> I've been thinking about you and wondering if you had considered

doing the shortened protocol that Rich has described? It is finally

not so daunting to me and I did order the 5 supplements. Hoping to

top off the healing that's been done already

> Diane in MI

>

>

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Guest guest

Diane, I tried to order those supplements today from www.holisticheal.com

(where Rich said they are available), and I couldn't find Intrinic B12/folate,

sublinqual Perque B12 or SAMe. I found the Methylation Support Nutriswitch

Formula at longevityplus-rna.com, but not at holisticheal. Oh, I count 7

supplements, not 5. What 5 did your order? Did you order them from

holisticheal?

a

a

I've been thinking about you and wondering if you had considered doing the

shortened protocol that Rich has described? It is finally not so daunting to me

and I did order the 5 supplements. Hoping to top off the healing that's been

done already

Diane in MI

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  • 1 year later...
Guest guest

I was glad Chia was there, but he did not get to present, just a poster. We

barely had time to talk with the scientists who had posters. I have trouble

seeing where a talk on graded exercise was more important than Chia's work. It's

important to note that one doctor I talked with said he found around 55% of his

cfs patients have Lyme disease. Dr. Nicolson and others find a high percentage

have mycoplasmas, and Dr. Stratton probably finds c. pneumonia in most. Until we

get research, good research, funded into studies of what we MIGHT be infected

with we have no clue. If you go back to Incline Village, Lyndonville, NY and

Raleigh, NC - it looks like an infectious outbreak to me. Also my small town in

South Carolina had well over 100 people with fibromyalgia since the 1970's. Why?

We are missing something. Rich V. even had an article showing how borrelia can

cause the methylation cycle to break down. But I just got told by the powers

that be, that IgeneX tests are no good and most cfs folks are negative at

LabCorp and Quest on the western blots. WE have no clue about babesia or

bartonella. How about parvovirus 19?

I don't know the answers, but I do have a lot of questions.

a

>

> I was under the impression that Dr. Chia is finding 82% of CFS/FMS/LYME

patients from large sample sizes as compared to control are coming down with the

enterovirus, which seems like a promising lead. 

>

> Dr. Chia said the same thing as you, that the money is going to the wrong

places, but what was your feeling about how Dr. Chia's work is being recieved by

others?

>

> Walter

>

>

>

>

>

>

>

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Guest guest

paula

whats wrong with hemex, would you still bother to do it if ya hadnt (dont know

if u have--i am considering it as i dont know which way i go with coag and i am

tired of guessing and taking stuff on chance)

also, would you recommend getting any tests knowing what u know to look into any

infections right now? i never have and dont know if its worth it but again,

tired of guesswork.....

i do know from redlabs it looks like i have some virus and that my immune system

is in hyperalert but probly not bacterail per the immunobilan, elastase, nkc and

interleukin etc results.

>

> I was glad Chia was there, but he did not get to present, just a poster. We

barely had time to talk with the scientists who had posters. I have trouble

seeing where a talk on graded exercise was more important than Chia's work. It's

important to note that one doctor I talked with said he found around 55% of his

cfs patients have Lyme disease. Dr. Nicolson and others find a high percentage

have mycoplasmas, and Dr. Stratton probably finds c. pneumonia in most. Until we

get research, good research, funded into studies of what we MIGHT be infected

with we have no clue. If you go back to Incline Village, Lyndonville, NY and

Raleigh, NC - it looks like an infectious outbreak to me. Also my small town in

South Carolina had well over 100 people with fibromyalgia since the 1970's. Why?

We are missing something. Rich V. even had an article showing how borrelia can

cause the methylation cycle to break down. But I just got told by the powers

that be, that IgeneX tests are no good and most cfs folks are negative at

LabCorp and Quest on the western blots. WE have no clue about babesia or

bartonella. How about parvovirus 19?

>

> I don't know the answers, but I do have a lot of questions.

>

> a

> >

> > I was under the impression that Dr. Chia is finding 82% of CFS/FMS/LYME

patients from large sample sizes as compared to control are coming down with the

enterovirus, which seems like a promising lead. 

> >

> > Dr. Chia said the same thing as you, that the money is going to the wrong

places, but what was your feeling about how Dr. Chia's work is being recieved by

others?

> >

> > Walter

> >

> >

> >

> >

> >

> >

> >

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