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Hi joy !!! Are you new here??? Or I'm just not remembering today???

White in the cold, yes, that is what my Dr. said too... But I told him mine turn blue...He said no, it has to be white...I am very light skinned and I am red a lot of the times... Mine will turn white very briefly, but then they are onto blue... I wear gloves to bed and socks as i get so cold...I wear gloves here at the computer sometimes too, as i just can't warm my hands :o(

How are you ??? Drop us a line when you are up to it...

{{{ Happy Hugs }}}

Helen

x 46. RAYNAUD'S LIKE SYMPTOMS what is this???

this is when the hands turn white in the cold..and they are always

cold..

joy

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Well, Hi joy !!! Welcome, glad you found us !!! Not glad your ill though, or are you a caregiver ??? Tell us about yourself when you are up to it... I'm Helen from ohio...51 and have a few things wrong...Please join in ...

((( Welcoming Hugs )))

Helen

yes i am new here...

joy

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Hello joy,

Welcome to our group. We don't like having to be here, but we sure do like having someone to talk to. Someone who knows what it is all about being sick. This is a loving, caring group always ready to help. I'm Carolyn from the mid-west. I have myasthenia gravis, heart and lung disease, diabetes, high blood pressure and more. I live with my husband and son. They take excellent of me and won't let me do anything. They are so afraid I will hurt myself. Of course they have good reason to think this. I fell off a chair New Year's Eve and broke my tail bone. It took 3 firemen, a policeman, my husband and son to get me off the floor. I guess they would rather do the work themselves.

Well feel free to jump in anytime. Someone is usually here round the clock. Long, short, venting, crying, screaming, even laughing are all OK with us.

Hugs

Carolyn

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> Well, Hi joy !!! Welcome, glad you found us !!! Not glad

your ill

> though, or are you a caregiver ??? Tell us about yourself when you

are up to

well really i am ill and i am a care giver to the sick...

my oldest daughter has sclorderma my mother has als and my father

prostrate cancer..(my parents live next door to me).

i have many things going on with me and the dr. is deciding maybe

they all add up to fibromyalgia. we will see if his feelings

pan out to be anything...

to tell you a bit about myself..i have been married for 25 years to

my high school sweetheart..we have 3 children 24 (she has

sclorderma) Emalee 23 married for 2 years to kyle

and 22 he and his wife of almost 3 years are the proud

parents of my 1 and 1/2 year old grandson Ian and his soon to be

brother or sister...

well that is all about me..thanks for the welcome..

joy

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Hi joy, Welcome to the group!!!

Sounds like you have a lovely family... Sorry you are so ill and your daughter and parents... You have your hands full... Do you have help with caring for your parents and daughter??? Being a carer and also ill is hard work... You must be a very loving person... When will you know for sure of your diagnosis???

Take care and write as often as you can...

{{{ Welcoming Hugs }}}

Helen

Signature Creations by

PANDORASBOX8

"Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen."

- Anonymous.

well really i am ill and i am a care giver to the sick...

my oldest daughter has sclorderma my mother has als and my father

prostrate cancer..(my parents live next door to me).

i have many things going on with me and the dr. is deciding maybe

they all add up to fibromyalgia. we will see if his feelings

pan out to be anything...

to tell you a bit about myself..i have been married for 25 years to

my high school sweetheart..we have 3 children 24 (she has

sclorderma) Emalee 23 married for 2 years to kyle

and 22 he and his wife of almost 3 years are the proud

parents of my 1 and 1/2 year old grandson Ian and his soon to be

brother or sister...

well that is all about me..thanks for the welcome..

joy

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Hello joy and welcome to the group. I am also fairly new here but I can

see already what a great group this is and I am glad that my friend Terri

told me about it.

Have you seen your doctor lately. Does he think that you have Fibromyalgia.

Helen sent some great links earlier to the group about FMS & CMPS. They are

great sites and explain a lot about fibro & the symptoms. I can imagine the

stress that you are under being ill yourself and also taking care of 3 ill

relatives also.

It is so lovely to read about your 25 yr marriage to you high school

sweetheart. Successful marriages are so rare now adays. I am sorry to hear

about your daughter having sclorderma. I understand that this is a rare

disease but I do not know very much about it. Does you daughter have a very

severe form of this illness?

((((((( Big welcoming Hugs)))))

in Finland

well really i am ill and i am a care giver to the sick...

my oldest daughter has sclorderma my mother has als and my father

prostrate cancer..(my parents live next door to me).

i have many things going on with me and the dr. is deciding maybe

they all add up to fibromyalgia. we will see if his feelings

pan out to be anything...

to tell you a bit about myself..i have been married for 25 years to

my high school sweetheart..we have 3 children 24 (she has

sclorderma) Emalee 23 married for 2 years to kyle

and 22 he and his wife of almost 3 years are the proud

parents of my 1 and 1/2 year old grandson Ian and his soon to be

brother or sister...

well that is all about me..thanks for the welcome..

joy

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  • 10 months later...

Hello Joy,

So good to hear from a Newbie. I happen to be a moderator and can

assure you that this is not an anti-American group. It is, however,

an anti-SSRI drug group. *None* on here approve of the methods or the

drugs of the Psychiatric industry. You and your doctor are playing

Russian Roulette with that drug. We are here to educate and inform

and please, make *no* mistake, we take our mission *very* serious.

All on this group have been harmed in some form or degree by these

drugs. We have seen the body count. We are only human and we do

sometimes joke on here. Yes, we do joke a little, but if you stay

with us Joy, you will began to realize that we have to in order to

keep from dying. Yes, I used the word die because that is exactly

what I wish I could do sometimes, so that I don't have to hear the

cries coming to our groups in the form of email. So that I don't have

to hear the pain. So that I don't have to watch my son suffer

*daily.* If you believe that the drug problems are out of control,

you my dear are *correct* and have come to the right group. Are you

aware of the number of people who have been harmed by the very drug

that your step daughter is on? How many victims will their need to be

in order to stop the lies? How many lives are worth the body count? I

would like to tell you Joy that your daughter is safe, but she isn't.

Is she better than she was before the drugs? Is the improvement worth

the risk? You should watch her very carefully and never let her self

medicate and educate yourself like there is no tomorrow. Her life and

maybe even your own life could depend on it. You sound a little

angry. I am sorry for all the pain in your life, but you should be

very angry! If *one* innocent victim dies at the hands of Prozac (and

there have been *many*) it should be taken off the market. We hope

that you will stay and help us fight this battle of greed at the

expense of our children.

Kindest Regards,

Connie In Dallas

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Hello Joy,

So good to hear from a Newbie. I happen to be a moderator and can

assure you that this is not an anti-American group. It is, however,

an anti-SSRI drug group. *None* on here approve of the methods or the

drugs of the Psychiatric industry. You and your doctor are playing

Russian Roulette with that drug. We are here to educate and inform

and please, make *no* mistake, we take our mission *very* serious.

All on this group have been harmed in some form or degree by these

drugs. We have seen the body count. We are only human and we do

sometimes joke on here. Yes, we do joke a little, but if you stay

with us Joy, you will began to realize that we have to in order to

keep from dying. Yes, I used the word die because that is exactly

what I wish I could do sometimes, so that I don't have to hear the

cries coming to our groups in the form of email. So that I don't have

to hear the pain. So that I don't have to watch my son suffer

*daily.* If you believe that the drug problems are out of control,

you my dear are *correct* and have come to the right group. Are you

aware of the number of people who have been harmed by the very drug

that your step daughter is on? How many victims will their need to be

in order to stop the lies? How many lives are worth the body count? I

would like to tell you Joy that your daughter is safe, but she isn't.

Is she better than she was before the drugs? Is the improvement worth

the risk? You should watch her very carefully and never let her self

medicate and educate yourself like there is no tomorrow. Her life and

maybe even your own life could depend on it. You sound a little

angry. I am sorry for all the pain in your life, but you should be

very angry! If *one* innocent victim dies at the hands of Prozac (and

there have been *many*) it should be taken off the market. We hope

that you will stay and help us fight this battle of greed at the

expense of our children.

Kindest Regards,

Connie In Dallas

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Joy,

I don't know how to respond to this email other than apologize for

any misunderstanding. I volunteered to help Dawn (the real expert

moderator) because she has been very busy fighting our battles. Maybe

I will try to respond less and just try to make sure that everyone is

heard by posting their messages and approving any new memberships.

You are right, words really hurt. They can be so painful. You are

*correct*, we must be very careful when responding to email.

Unfortunately, email doesn't show faces or emotion, so it is easy to

be misunderstood. Anyway, that is the cyber world that we live in.

Joy, I have spent many years filled with your pain and I have sent

many emails with your tone and I have *no* desire to hurt anyone

anymore. Especially you, you have been through way to much and still

have a long way to go. About one month ago I turned my life over to

God and he took that pain and that tone from me. He gave me Peace and

Hope and Love. Love being the most outstanding. My only objective in

life is to spread these feelings. To touch those that stand where I

once stood. Those that are filled with pain and anger and hate. If I

can't do that now my life has *no* meaning. I will pray for you Joy

and please pray for me that God will touch me in a way that will make

*every single word heal and not hurt.*

Connie

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Amen..

I was raised to have a very close relationship with Our Heavenly Father,

sometimes I take it for granted that most everyone was. God Bless You, His

love will surely bring you peace and understanding that you cannot imagine.

God has been very tolerant of mankind over the years, He must love us an

awful lot to put up with us! When I am getting into this legal battle,

inside I know that God in in control and that His will is to be done, and

the truth is so abundantly clear, yet it seems that nobody except me knows

what the truth is, we have to PROVE everything. Still, I have faith that

" everything will be allright " , I keep that to myself. I will indeed pray

for you, one thing that is helpful if you have a doubt, ask yourself " what

would Jesus say? " or " what would Jesus do? " , and follow your heart, God is

in your heart, (not the muscle) and He does give you signs. I am constantly

asking God for guidance, patience, and strength to get through this tough

time. In return, or as my offering to God, I will always stand up for what

is right, for what is good, and will speak out against evil in any form,

then take my lumps for it. That is what I believe is my calling.

Keep the Faith

Joy

Re: Joy

> Joy,

>

> I don't know how to respond to this email other than apologize for

> any misunderstanding. I volunteered to help Dawn (the real expert

> moderator) because she has been very busy fighting our battles. Maybe

> I will try to respond less and just try to make sure that everyone is

> heard by posting their messages and approving any new memberships.

> You are right, words really hurt. They can be so painful. You are

> *correct*, we must be very careful when responding to email.

> Unfortunately, email doesn't show faces or emotion, so it is easy to

> be misunderstood. Anyway, that is the cyber world that we live in.

> Joy, I have spent many years filled with your pain and I have sent

> many emails with your tone and I have *no* desire to hurt anyone

> anymore. Especially you, you have been through way to much and still

> have a long way to go. About one month ago I turned my life over to

> God and he took that pain and that tone from me. He gave me Peace and

> Hope and Love. Love being the most outstanding. My only objective in

> life is to spread these feelings. To touch those that stand where I

> once stood. Those that are filled with pain and anger and hate. If I

> can't do that now my life has *no* meaning. I will pray for you Joy

> and please pray for me that God will touch me in a way that will make

> *every single word heal and not hurt.*

>

> Connie

>

>

>

>

>

>

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  • 11 months later...

Joy, I am so sorry for your losing your dad. I lost mine in 87 and I still

miss him. But, it does get 'easier', just not right away.

I am so sorry you were unable to be by his side. That is hard to try and get

there and not quite make it. I can only imagine how much that must hurt.

What a beautiful day for a service, New Years Eve. I think that is a really

special day to remember someone always!

You are in my thoughts and prayers.

K

Adrienne's Mom

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  • 5 months later...
Guest guest

Biancka,

It sure seems like taking out a pouch would be one of those

things that a Dr. could do with a needle/thread and make a few

tucks. Some things seem like they should be easier than they are I

guess. Then sometimes they do something that seems impossible and I

never can figure out how they do it. Hmmm> Well, just happy for you

that it will all work out.

Joy

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  • 1 month later...

Hi Sherry,

What day is your appt. scheduled?

I called and scheduled my own appt. and wrote down all the times of

everything and then 2 days before....the Fed Ex man showed up at my

house with all the " official " paperwork. You will probably get that

too. Anyway, they had scheduled a test on the day before she told me

on the phone and I had a mad dash scramble trying to figure our

arrangements for a one-way rental car (my husband was only able to

take off work the original planned on day and meeting me).

Anyway, this paperwork that they will probably send you has all the

information in it, your scheduled appt. time, which Dr. and where his

office is, where to go, a map of the whole campus, driving

directions from different approaches....basically everything.

Now, I had all my tests scheduled with the Dr.'s appt.s

immediately following (I had called and spoke with Dr. Rice on the

phone prior and he ordered the tests he wanted), but I do think that

Jan from Kentucky went to meet with the Dr.s, then followed it up

with her next appt. being tests and then only shortly after that she

had her surgery....(if I kept track of everything correctly).

I phoned Dr. Rice to speak with him because I had already had a

consult locally for the surgery and was seeking another Dr. with more

experience. I had had most (not all) of the tests done this past

Dec. when they made my diagnosis locally...but the Dr.s at CC like to

have the tests repeated there. So, don't be surprised if you have to

go through some of it again.

Dr. Achkar is a GI Dr. and if he can't solve your problems with

dilation or whatever means he has then he will probably refer you on

to Dr. Rice.

Don't worry, you can't ask too many questions. I felt the same

way. It is scary going to CC for the first time. They are VERY

friendly and my whole experienc went very smoothly. The place is

clean and professional. There is congestion around the parameter due

to some construction...but other than that. Anyway, one nice

employee even stopped his lunch on a bench with friends to help me

find my car. I had walked into the hospital from a door/ hall that

then wasn't labelled from the inside and ended up going out a

different door and wandered around outside unable to locate that

parking lot. Wow the place is big. Don't worry. Write back.

Joy

> I hate to keep asking all these questions but I'm getting nervous

> about this appt at CC.When my Dr's office made the appt for me they

> said I would be getting info in the mail.I haven't received

> anything.I called CC today to get some info.They said it was just a

> consult.I thought they would do some testing while I was there or

do

> they do that after your appt.I am seeing Dr Achkar. I don't even

know

> what building to go to(forgot to ask when I called)Thanks for all

> your time.Really appreciate it.Thanks Sherry from Ohio.

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> My appt is Aug 17th at 5:30 pm.I called there Monday Am and was

told

> it was just a consult. I hope I don't have to make another trip for

> the tests.My appt is in the Crile Bldg.Is parking hard to find? I

> have been there before 15 yrs ago but I was so sick then I don't

> remember much.They did my first two dilations.They were the ones

who

> diagnosed me.Thanks for all your help.Sherry from Ohio

Hi Sherry,

Don't worry, parking is very easy to find. There are several

parking lots all with easy access. My problem was that I had walked

in a door and was expecting to walk out the same door...but it wasn't

labelled from the inside so I missed it and then ended up on the

wrong side of the building etc. etc. That's MY story of not finding

my car....but parking is easy to find.

I still think if they said it was just a consult...then it will be

like Jan and you will meet with the Dr., then he will determine from

your meeting what tests he wants done and then you will go back and

have those tests done another day. How far of a drive is it for

your? They are very considerate of driving times and if you mention

this, you may be able to discuss this ahead of time and get some of

those tests put on your schedule.....because they know they are going

to want to do some of those rather routinely (I think).....especially

if you are being referred etc.

Keep me posted.

Joy

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  • 2 weeks later...

> Thanks for your reply.Your husband hasn't been diagnosed with " A "

> Does he have a good GI? What test has he had? Sometimes Drs just

> don't want to admit they don't know.I had that prolem with my 1st

GI

> and he didn't refer me to anyone else.My in-laws made my appoint

at

> CC and was diagnosed there. Sherry

Well, there is little point in doing surgery or dilations on him

because it would not cure the Eosinophilic Esophagitis that is the

cause of the " A " symptoms for him...and his symptoms are minimal as

long as he takes his medicine for the eosinophils regularly (the

steroids and antihistamines). He uses Benadryl liquid when he has

an episode of esophagus swelling that causes a flare in his symptoms

because he only flares when he is exposed to foods he is allergic to

(we try to be very careful with him, but his allergy list is so

incredibly long that it becomes difficult sometimes).

Has anyone else had biopsies of their esophagus to look for

eosinophils? Long-standing Eosinophilic Esophagitis can cause " A "

symptoms...case in point is my husband :)

Cheers,

-JS

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Hi Joy....it's me, the other Joy.

What is " eosinophilic Esophagitis " ? Big words that make it sound

like he has some kind of dermatitis in his esophagus or something?

I think it is incredible and wonderful for you both that you at least

have a cause and know what to do to avoid it. I don't know if I

could drink down that oily medicine he has to take though...that just

sounded not so good. Does he have to drink it even if h has been

very good and avoided all the allergy foods?

Joy (in Michigan)

ps. I like your name and think you should go back to signing it.

Just put the " S " behind it....and keep everyone on their toes.

> Has anyone else had biopsies of their esophagus to look for

> eosinophils? Long-standing Eosinophilic Esophagitis can cause " A "

> symptoms...case in point is my husband :)

>

> Cheers,

>

> -JS

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Hi Joy!

It's really nice to know I'm not alone. Until finding this list, I'd never spoken to anyone else who had achalasia. I'll be going in to Leigh Hospital in Norfolk, VA on Sept. 20th for the pre-op work. Surgery the next day.

What school does your brother teach at? I live on the east coast near the Outer Banks area, but I do love the mountains in the western part of the state. My husband and I took a little vacation to Cherokee just a few months ago and it was beautiful. Driving up them can be a little nerve-wracking though.

I hope all goes well with your surgery. I'll be thinking of you.

Jannie

Re: Hi I'm New Hi Jannie, I am making mental notes of which of us are getting surgery next month. You are on the 21st and I am on the 22nd. I think there was somebody else too. I go to CC on the 21st for all the pre-op stuff - how about you?My brother just got his Doctorate on the Tuba and teaches at a college in North Carolina. It is so pretty in your state but driving the hills makes me queasy. Does it bother you at all?Joy (in Michigan)

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> Hi Joy....it's me, the other Joy.

> What is " eosinophilic Esophagitis " ? Big words that make it

sound

> like he has some kind of dermatitis in his esophagus or something?

Eosinophils are a type of white blood cell that are triggered during

some kinds of allergic reactions. There aren't supposed to be any

of these kinds of cells in the esophagus, so when they are there

(especially in high numbers), they cause inflammation and symptoms

similar to " A. " One doctor describes it as " Asthma of the

Esophagus, " and calles the Eosinophilic Gastrointestinal

Disorders " The Mother of All Food Allergies " because of how food is

often a triggering aspect of the disease. For more info, check out

http://www.apfed.org/

> I think it is incredible and wonderful for you both that you at

least

> have a cause and know what to do to avoid it. I don't know if I

> could drink down that oily medicine he has to take though...that

just

> sounded not so good. Does he have to drink it even if h has been

> very good and avoided all the allergy foods?

There is no food of nutritional value that he is not allergic to, so

he has to drink it every meal or he would starve to death. His only

other option is to be tube-fed a special amino-acid based meal

replacement formula, and he's told me he couldn't handle doing that

(I don't blame him!).

> Joy (in Michigan)

> ps. I like your name and think you should go back to signing it.

> Just put the " S " behind it....and keep everyone on their toes.

Oh, ok, will try it :)

-Joy S.

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  • 2 months later...

Hi Cindi,

Thanks, and you know...I will say that the entire time I was

there I was really worried because I met a man who had a Heller and

then a year later had to have an esophagectomy. He said it was

because he drank coffee and ate the wrong foods and did it to

himself. My husband kept saying to me... " don't worry, honey, you are

different than him. " When Dr. Rice gave me permission to " eat

anything " - it did strike home the notion that even in this disease

we are all different.

Joy

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  • 2 months later...

:D

Hi Joy Good to meet you too

I have been so busy at work for the last couple of

days and hectic sorting one thing and another out that

this is the first opportunity I have to reply to your

message, although I deleted it!

Life for me is on an upward slope. Things are getting

better. I have decided that men really arent worth

worrying over - I decided before my op that I was

going to live life to the full once I had recovered,

and hey I can do that whether I am in a relationship

or not.

My real passion in life is travelling. I have been

very blessed and been all over the world, at one stage

I had saved money to buy a house and then decided to

blow the lot on a trip round the world for a year.

That was the best decision I ever made!

Last year I had two trips planned, one to the Baltics

and one to New Zealand. I realised that I needed to

do something about my hip when I realised that I wasnt

looking forward to the walking and working out what I

could do in these places without walking too much, and

I actually cancelled both trips and sat miserablly at

home reading about hips!

Being a teacher I do get fantastic holidays. I dont

know where you are from but we in the UK have a week

off, starting Valentines day. Me and one of my mates

are off to Barcelona for a few days and I have just

been planning a 3 week trip to the Baltics over

Easter. How can I be miserable when I can, for the

first time in my life think about travelling without

the pain! I really am beaming :0)

The limp is getting better, slowly but it is getting

better and the swelling is going. I swim practically

everyday (I have some parent meetings and stuff for

school some evenings), I need less sleep and I am

loosing weight. Dancing is wonderful, kinda tricky,

but hey I dont care what I look like, I have a big

cheesy smile on my face just being able to move

without pain.

Anyway, I am waffling. Good to meet you Joy, Take

care and keep doing all those good things, including

smiling and dancing!

Liney

___________________________________________________________

ALL-NEW Messenger - all new features - even more fun!

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  • 10 months later...

Hmmm. I, too, have a 17 year old daughter, red-haired,

opinionated...I could go on and on. I love her to bits, but have to

wonder, is the the " 17 year old " , the " daughter " , or the " red-haired "

part of her that makes me wonder sometimes? LOL!

Heidi

>

> Joy - I'm Laughing at your comment about your redhead daughter!

> Have one almost the same, but she's 17!!!

>

> No virus found in this outgoing message.

> Checked by AVG Free Edition.

> Version: 7.1.371 / Virus Database: 267.14.7/214 - Release Date:

23/12/2005

>

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I've given up trying to figure it out - i just go with the flow!!

Re: Joy

Hmmm. I, too, have a 17 year old daughter, red-haired, opinionated...I could go on and on. I love her to bits, but have to wonder, is the the "17 year old", the "daughter", or the "red-haired" part of her that makes me wonder sometimes? LOL!Heidi>> Joy - I'm Laughing at your comment about your redhead daughter!> Have one almost the same, but she's 17!!!> > No virus found in this outgoing message.> Checked by AVG Free Edition.> Version: 7.1.371 / Virus Database: 267.14.7/214 - Release Date: 23/12/2005>

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.371 / Virus Database: 267.14.7/214 - Release Date: 23/12/2005

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.1.371 / Virus Database: 267.14.7/214 - Release Date: 23/12/2005

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My AS son is also a redhead, he has very dark red almost auburn, it's a beautiful color. My youngest is also red but a lighter blondish red and my daughter is whitish blond, go figure me and my husband both have brown hair. Actually my Father is a redhead. They probably inherited is through my genes. Hope everyone had a great Christmas and has a Wondeful New Year!!!! Heidi <hotcoolings@...> wrote: Hmmm. I, too, have a 17 year old daughter, red-haired, opinionated...I could go on and on. I love her to bits, but have to wonder, is the the "17 year old", the "daughter", or the "red-haired" part of her that makes me wonder sometimes? LOL!Heidi>> Joy - I'm Laughing at your comment about your redhead daughter!> Have one almost the same, but she's 17!!!> > No virus found in this outgoing message.> Checked by AVG Free Edition.> Version: 7.1.371 / Virus Database: 267.14.7/214 - Release Date: 23/12/2005>

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