body image

November 27, 2008

Perhaps we could have a discussion about body image and what compensations

some of us make because we are so vulnerable with regard to our shape. How

did you deal with dating when you were younger, and how did it come about

that some of you found partners?

Lida in London

Re:Another blow

" freak of nature " .....this term you used, , is what I feel. It is a

horrible thing for a woman to label herself or society, but in this body

perfect (or have surgery to create it) world it seems to fit. On the other

hand

it's a miracle we can function with our spines turning and twisting as they

do.

I need to remind myself, I am not my spine. Body image is badly bruised

with scoliosis.

Others thoughts......

Jolene

November 28, 2008

Body imiage is terrible. There is not a day that I don't go out the door and

think about my deformity. I do feel like a freak of nature. I have terrible

asthma and deression but those

do not effect my self esteem. My body does. I wore a brace in HS (the '70's)

and that was humiliating too. That time of life when you first are dating or

going to dances.

After that my curve wasn't too bad and I dressed pretty normally. I met my

husband in 1980

and fortunately I wasn't too mis-shapen. He is a wonderful man and though my

curve has

progressed horribly - he doesn't seem to mind and is always supportive. I do

often think that if I had to meet someone now it would be hard.

I do a lot of layering. Jackets over turtlenecks in winter shirts over tees in

summer. Even layering doesn't really hide it anymore. No bathing suits of

course. If I could have one wish granted - one miracle - it would be - to be

straight. This group has helped me not feel

alone in all of this though. At least I know there are others out there who

have the same

concerns and fight the same battles. God bless you all. Sara

From: Lida Kraz <lidakraz@...>

Subject: body image

Scoliosis Treatment

Date: Thursday, November 27, 2008, 2:28 PM

Perhaps we could have a discussion about body image and what compensations

some of us make because we are so vulnerable with regard to our shape. How

did you deal with dating when you were younger, and how did it come about

that some of you found partners?

Lida in London

Re:Another blow

" freak of nature " ..... this term you used, , is what I feel. It is a

horrible thing for a woman to label herself or society, but in this body

perfect (or have surgery to create it) world it seems to fit. On the other

hand

it's a miracle we can function with our spines turning and twisting as they

do.

I need to remind myself, I am not my spine. Body image is badly bruised

with scoliosis.

Others thoughts.... ..

Jolene

November 28, 2008

Staci - thank you for your concern. I am 53. I am scared too!

For most of my life my asthma was the bigger problem.

Surgery was suggested as a teen but because I was in and out of

the hospital with chronic lung infections and asthma - the

thought was my lungs could not handle it.

The same was true of my asthma right up through 8 years

ago when I found a new pulmonary doctor and my asthma is

much better and well under control.

Somewhere over the past several years my scoliosis went from

bad to severe. My pulmonagist wants me to see someone

and thinks my asthma could be handled through whatever.

I went on National Scolisis Forum and got some Dr.

recommendations for Boston which is nearby. I haven't made

the call though. I am really afraid.

Also, one big concern is money. I work full time and my family

needs me to. I would not be able to work for a long time after

surgery - right?

Thanks again! Sara

From: Lida Kraz <lidakraz@elkaycorp o ration.com>

Subject: body image

Scoliosis Treatment

Date: Thursday, November 27, 2008, 2:28 PM

Perhaps we could have a discussion about body image and what compensations

some of us make because we are so vulnerable with regard to our shape. How

did you deal with dating when you were younger, and how did it come about

that some of you found partners?

Lida in London

Re:Another blow

" freak of nature " ..... this term you used, , is what I feel. It is a

horrible thing for a woman to label herself or society, but in this body

perfect (or have surgery to create it) world it seems to fit. On the other

hand

it's a miracle we can function with our spines turning and twisting as they

do.

I need to remind myself, I am not my spine. Body image is badly bruised

with scoliosis.

Others thoughts.... ..

Jolene

November 28, 2008

, Sara, and Lida....

I, too, wish for a straight back....such a simple wish that 'normal' women

would never need to even think about. But I know some women very self

conscious of their teeth, nose size, complexion, wrinkles, height, weight, shoe

size

etc. That seems so important to them. Perspective rules, I guess.

I met my husband when I was 17-4 years after my first fusion. I was very

shy and didn't date until he came around. The shyness didn't have anything to

do with my spine...I was just quiet and lacked confidence. He didn't notice

my back at all. And it didn't slow me down much then anyway. Luckily, that

was a time when girls didn't sleep around or rarely before marriage so my

back was hidden from him.

Anyway, I'd hate to be dating or young today with all the sexual pressures

on women in their early teens and with our backs. And the fashions today

seem impossible.

Lucky for me, that guy I found is still hanging around celebrating our 40th

anniversary. He is very understanding of my limitations.

My spine has just been giving me a painful time the last 10 years. My

fusion in 1960 was too short and after being in denial I needed another fusion

I

finally agreed 2 years ago. Unfortunately, I waited too long and I have

osteoporosis so surgery had to be stopped short. That's is why I'm an advocate

for

women to not wait until they are 50 to have it. Learn from me.

Osteoporosis did not show on any of my bone density scans for the last 12

years. The

machines are not calculated for curved spines so the laser does not read the

bone accurately.

Jolene

**************Life should be easier. So should your homepage. Try the NEW

AOL.com.

(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000002)

November 28, 2008

Oh Sara, You are one of the most beautiful women I've known and I

haven't even laid eyes on you. How many " beautiful people " have we

known that said or did something that took away that " beautiful

image " and replaced it with a deformity. The deformity of spirit is a

whole lot worse than a deformity of the body. Sara your family loves

you very much for who and what you are to them. You, my dear, are a

very special person indeed. Love ya and God Bless You!!

>

> Body imiage is terrible. There is not a day that I don't go out

the door and think about my deformity. I do feel like a freak of

nature. I have terrible asthma and deression but those

> do not effect my self esteem. My body does. I wore a brace in HS

(the '70's) and that was humiliating too. That time of life when you

first are dating or going to dances.

> After that my curve wasn't too bad and I dressed pretty normally. I

met my husband in 1980

> and fortunately I wasn't too mis-shapen. He is a wonderful man and

though my curve has

> progressed horribly - he doesn't seem to mind and is always

supportive. I do often think that if I had to meet someone now it

would be hard.

> I do a lot of layering. Jackets over turtlenecks in winter shirts

over tees in summer. Even layering doesn't really hide it anymore. No

bathing suits of course. If I could have one wish granted - one

miracle - it would be - to be straight. This group has helped me not

feel

> alone in all of this though. At least I know there are others out

there who have the same

> concerns and fight the same battles. God bless you all. Sara

November 29, 2008

I know that even though I have accepted my body I still look at

people, women and girls, that do not have that scar down their back.

It makes me more than a little sad to see that perfect, unmarred skin.

I see them as perfect and myself as broken and torn apart. Maybe I

haven't fully accepted my body.I think I have accepted it in the fact

that it is what it is and I can't change it, but not enough that I

don't wish for something different. I will not change clothes in a

dressing room, like at the gym.

Clothes shopping is a nightmare. I tend to wear my clothes at least a

full size and preferrably two sizes too big. The only way will wear a

swimsuit is if I can wear a Tshirt too. I am also very fair skinned so

I can blame it on that.

As far as my husband goes: we will be celebrating our third

anniversary in a couple of weeks. I didn't tell him I had back issues

one of our friends did and made it sound even worse than it is. He was

fine, and we went out a few more times before he ever mentioned it. He

is very considerate and watches me very closely for the first signs of

pain outside my normal pain to make sure I didn't overdo it. What the

scars look like didn't come into play until after we were married so

then it was too late! He says they don't bother him, he married me,

not my back.

I do feel bad for him because my pain does limit our activities.

Sometimes a little sometimes a lot. It did take him a while to

understand my issues with furniture. When we get invited to someones

house I don't go sometimes because there isno comfortable place for me

to sit. I almost never accept invitations to cook outs because outdoor

furniture is almost always painful.

On Nov 28, 2008, at 10:15 PM, Buttonjo@... wrote:

> , Sara, and Lida....

> I, too, wish for a straight back....such a simple wish that 'normal'

> women

> would never need to even think about. But I know some women very self

> conscious of their teeth, nose size, complexion, wrinkles, height,

> weight, shoe size

> etc. That seems so important to them. Perspective rules, I guess.

>

> I met my husband when I was 17-4 years after my first fusion. I was

> very

> shy and didn't date until he came around. The shyness didn't have

> anything to

> do with my spine...I was just quiet and lacked confidence. He

> didn't notice

> my back at all. And it didn't slow me down much then anyway.

> Luckily, that

> was a time when girls didn't sleep around or rarely before marriage

> so my

> back was hidden from him.

>

> Anyway, I'd hate to be dating or young today with all the sexual

> pressures

> on women in their early teens and with our backs. And the fashions

> today

> seem impossible.

>

> Lucky for me, that guy I found is still hanging around celebrating

> our 40th

> anniversary. He is very understanding of my limitations.

>

> My spine has just been giving me a painful time the last 10 years. My

> fusion in 1960 was too short and after being in denial I needed

> another fusion I

> finally agreed 2 years ago. Unfortunately, I waited too long and I

> have

> osteoporosis so surgery had to be stopped short. That's is why I'm

> an advocate for

> women to not wait until they are 50 to have it. Learn from me.

> Osteoporosis did not show on any of my bone density scans for the

> last 12 years. The

> machines are not calculated for curved spines so the laser does not

> read the

> bone accurately.

>

> Jolene

> **************Life should be easier. So should your homepage. Try

> the NEW

> AOL.com.

>

(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000002

> )

>

November 29, 2008

Dereise - Thank you for the beautiful words. You lift my spirit.

Dereise, Jolene, , Lida and all who share both our pain

and damaged spirts - Bless you! Bless you as you live with this

horrible disease, Bless you who live with constant pain and

limitations.

As for body image. Society makes it hard on women anyway.

We are supposed to be thin and beautiful. Throw in scoliosis

and we have a double handicap.

I have said this before and say it again. You have all changed

my 53 year old life. Until I found this group I didn't know anyone

else with scoliosis. Supposedly one our of ten people have it

but looking around it doesn't seem that way. Now I don't feel

alone in this battle. Also I know you are experiencing the things

I am and it is normal.

Thank you for the info on bone density. I have had several

bone density scans as I have been on Prednisone (steroid)

for my asthma for most of my life. They all came back good but

maybe that is not accurate.

Also - a question. What happens in a lightning storm if you have a

rod!

Sara

From: Buttonjo@... <Buttonjo@...>

Subject: Re: body image

Scoliosis Treatment

Date: Friday, November 28, 2008, 10:15 PM

, Sara, and Lida....

I, too, wish for a straight back....such a simple wish that 'normal' women

would never need to even think about. But I know some women very self

conscious of their teeth, nose size, complexion, wrinkles, height, weight, shoe

size

etc. That seems so important to them. Perspective rules, I guess.

I met my husband when I was 17-4 years after my first fusion. I was very

shy and didn't date until he came around. The shyness didn't have anything to

do with my spine...I was just quiet and lacked confidence. He didn't notice

my back at all. And it didn't slow me down much then anyway. Luckily, that

was a time when girls didn't sleep around or rarely before marriage so my

back was hidden from him.

Anyway, I'd hate to be dating or young today with all the sexual pressures

on women in their early teens and with our backs. And the fashions today

seem impossible.

Lucky for me, that guy I found is still hanging around celebrating our 40th

anniversary. He is very understanding of my limitations.

My spine has just been giving me a painful time the last 10 years. My

fusion in 1960 was too short and after being in denial I needed another fusion I

finally agreed 2 years ago. Unfortunately, I waited too long and I have

osteoporosis so surgery had to be stopped short. That's is why I'm an advocate

for

women to not wait until they are 50 to have it. Learn from me.

Osteoporosis did not show on any of my bone density scans for the last 12 years.

The

machines are not calculated for curved spines so the laser does not read the

bone accurately.

Jolene

************ **Life should be easier. So should your homepage. Try the NEW

AOL.com.

(http://www.aol. com/?optin= new-dp & icid= aolcom40vanity & ncid=emlcntaolco

m00000002)

November 29, 2008

When I met my husband I was 20 with a 50 degree thoracic curve. When we

started getting serious I told him because I was also told I might not be able

to have children. He didn't care and loved me for me. I was pretty good at

hiding the curve and hump except for the summer. Bathing suits were always a

nightmare and I love summer and swimming.

After 2 children and by age 37 my curve had progressed to 75 degrees

thoracic/64 lumbar. My kids were only 6 and 8 and I finally had my first of 3

surgeries. The last being a total revision anterior/posterior and I am fused

from

T1 to L4. I also went from 4'10 " to 5'1 " to 4'10 " back to 5'1 " . I feel

like I put him and my family through hell during those years but we came

through it. I think scoliosis is a horrible disease but with that said, I have

always thanked God that if he had to give me something, at least this was able

to be handled. While in the hospital I saw such horrible things people have

to endure. A friend of ours lost her 16 year old to cancer. That is horrible.

It is not always easy and I say once in while you can feel sorry for

yourself but then let it go. Most days I am in pain but it is tolerable. I

still

manage to take care of my family and work full time. My kids are now 18 and

20 and my husband and I have been married for 22 years. I may have a few

battle scars - lol - but things could be worst. Just turn on the news for a

few

minutes. I feel I am truly blessed.

I am not preaching, I just hope this helps anyone who is feeling a little

down.

Kathy

**************Life should be easier. So should your homepage. Try the NEW

AOL.com. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=e

mlcntaolcom00000002)

December 1, 2008

Thank you.

n

Re: Re: body image

I met my husband when our cars were involved in a three car accident: a

drunk woman went 80mph down a hill in our city, hit my parked car and

knocked mine into my future husband's car. It was love at first sight. We

dated for a year, were engaged a year, and got married. He knew about my

scoliosis, bc I told him. I didn't act like it was a big deal and, so, I

think he didn't think it was either.

And, I wore bathing suits and still do, scar and all. Scoliosis was/is a way

of life. It helped that it was never separate from myself and the only time

I gave it much thought was when it hurt or when I was buying clothes. So, my

husband didn't give it much thought either.

When it got so bad I needed surgery in 2002, he was sympathetic and helpful.

We just waited until my back was healed and went on with our lives.

But, now I have CMT and we are learning how to live with that now.

Lj

December 1, 2008

This is really getting my attention. I wonder if this had anything to

do with me also getting Bell's Palsy which is a nervous disorder thing

too. Dereise.........

>

> Charcot-Marie-Tooth disease. 27% (or was it 28%?..) of CMTers have

Scoli.

> lj

December 2, 2008

I have had surgery and carry two full rods in my back. I must be missing

something because I have done extensive travels and have never set off any

alarms, I get an uncomfrontable ache when it rains and have been outside in

lightning storms because of shopping or getting out of the car when I reach

home. My rods must be set in alot further than yours as I do not have any

problems like you have. My rods run on both sides of the spine and have hooks

on them similar to fish hooks. All the nerves were cut on the spine so I have

almost no feeling in my back except the lower disc where there is no rods. My

surgery was done in 1967.

________________________________

From: Dereise <dereise1958@...>

Scoliosis Treatment

Sent: Monday, December 1, 2008 1:56:45 AM

Subject: Re: body image

Good one Sara.lol In storms I run for cover. With 4 lbs. of metal back

there I'm sure a target to get hit. I will never forget a few years ago

when a Dr. ordered me to get an MRI xray. I wasn't in there 2 minutes

until they brought me back out and said that I was throwing sparks all

over the place. My first trip over seas I sent off the detector with my

rods. I carry a letter from my doctor telling anyone about the fusion

but when they saw my scar that was enough for them.

So glad you are keeping your sense of humor there Sara. When the days

are bad it's go great when something comes along to make us laugh again

and get away from the dark cloud for awhile anyway. Love ya girlfriend,

Dereise..... ........

>

> Dereise - Thank you for the beautiful words. You lift my spirit.

> Also - a question. What happens in a lightning storm if you have a

> rod!

> Sara

December 2, 2008

Hello . Oh, we were mostly joking. I don't worry about being out

in a thunder storm any more than I did before my surgery. I only set

off one alarm. Glad you are doing so well. Most days are good ones

for me. I get tempted to over do on those days so I try and remember

to take it easy. I had 3 rods put in. My curve was so advanced before

I had surgery that I'm glad now the Dr. was thinking ahead. I'm

hoping the 3rd surgery was the last one. Thanks for sharing,

Dereise...

> >

> > Dereise - Thank you for the beautiful words. You lift my spirit.

>

> > Also - a question. What happens in a lightning storm if you have

a

> > rod!

> > Sara

>

December 3, 2008

Hi Guys,

I would like also to add something, sometimes I feel a sort of electricity in my

hands, I think this is because of the rods.Â It doesn't really bother me

" hopefully " .

My concern is when using cell phones or being surrounded by cell phones

frequencies, I think we are taking a lot of frequencies in our bodies because of

the rods/environment around us.

Is there a way to avoid the negative side of that, our bodies are somehow became

like a radio getting too much frequencies inside because of the rods.

Thanks

Â Â Â Â Â Â Â Â

From: Durand <d.durand56@...>

Subject: Re: Re: body image

Scoliosis Treatment

Date: Tuesday, 2 December, 2008, 9:44 PM

I have had surgery and carry two full rods in my back.Â I must be

missing something because I have done extensive travels and have never set off

any alarms, I get an uncomfrontable ache when it rains and have been outside in

lightning storms becauseÂ of shopping or getting out of the car when I reach

home.Â My rods must be set in alot further than yours as I do not have any

problems like you have.Â My rods run on both sides of the spine and have hooks

on them similar to fish hooks.Â All the nerves were cut on the spine so I have

almost no feeling in my back except the lower disc where there is no rods.Â My

surgery was done in 1967.

____________ _________ _________ __

From: Dereise <dereise1958>

Scoliosis Treatment

Sent: Monday, December 1, 2008 1:56:45 AM

Subject: Re: body image

Good one Sara.lol In storms I run for cover. With 4 lbs. of metal back

there I'm sure a target to get hit. I will never forget a few years ago

when a Dr. ordered me to get an MRI xray. I wasn't in there 2 minutes

until they brought me back out and said that I was throwing sparks all

over the place. My first trip over seas I sent off the detector with my

rods. I carry a letter from my doctor telling anyone about the fusion

but when they saw my scar that was enough for them.

So glad you are keeping your sense of humor there Sara. When the days

are bad it's go great when something comes along to make us laugh again

and get away from the dark cloud for awhile anyway. Love ya girlfriend,

Dereise..... ........

>

> Dereise - Thank you for the beautiful words. You lift my spirit.

> Also - a question. What happens in a lightning storm if you have a

> rod!

> Sara

December 4, 2008

My rods have never set off any alarms either

________________________________

From: Durand <d.durand56@...>

Scoliosis Treatment

Sent: Tuesday, December 2, 2008 12:44:45 PM