NOBODY IS PERFECT

Hello,

Even though I have been blogging like crazy not only here but on FACEBOOK CAUSE, MY SPACE, TWITTER, THE SCLERODERMA fOUNDATION, FDA/OOPD-RARE DISEASE BLOG, THE ROMBERG CONNECTION, LINKEDIN and others I wonder if I am making any kind of difference.

I do not care about my google ranking, or becoming a "rock star" or people knowing my name.

I am only concerned that this still very unknown illness gets the attention it needs and to let other patients like me that I am walking in your shoes and I just know........................

Looks are everything in this society. I have been treated badly when I was disfigured and when I had cosmetic revision finished by 17, I was dating a lifeguard who introduced me to a group of friends from a popular fraternity at his college. "WOW" your girlfriend is hot, and other similar comments were said to my boyfriend Jeff.

Walking to his car a few hours later, He stopped and told me those three little words "I LOVE YOU, for the first time by a boy.

I will forget that life changing moment. He only said he loved me on that night in particular because his spoiled, popular friends "approved" of my looks.

That night over 30 years ago changed my life forever.

The summer before I worked as a lifeguard in a day camp. When I saw one of the lifeguards I would be working with I felt a tingle go down my spine. It was the first time I felt that sensation and I wanted "Bill" to notice me and ask me out.

I heard he had a really pretty girlfriend. I was shy and blushed when he spoke to me. He never asked me out and I was heart broken.

A few months ago he became reunited with my husband on Facebook because they went to the same college. My husband mentioned I think you worked with my wife about 30 years ago when she was a lifeguard.

That is when suddenly I started getting messages on Facebook from "BILL" directly to my Facebook page. I finally told him I had the biggest crush on him the summer we worked together. He answered back that is so strange "I had a crush on you too"

We should get together. I met him for a drink and was very nervous, it was against my morals being married but I had to see if I still felt a spark.

Well he still looked great and he never married. When he saw me he said "you do look exactly as your Facebook photos". Do you remember what I looked at 30 years ago? "What color hair did I have?" he didn't remember me at all. He made up the story he had a crush on me. He wanted only to see me because he liked my Facebook photos. I almost for the first time in 17 years cheated on my husband. I didn't.

Looks opened many doors for me and yes men were proud to be with me. I even was hired because of my looks especially working in the fashion field for 25 years.

I never have had any serious relationships with men based on their looks, I looked deeper and were atrracted to men who treated me with respect and loved me for being me.

I was once called a "trophy" wife from a shrink I started to see because I was having panic attacks, I just looked this so-called MD. I laughed if you only knew......... me before.

Most girls are getting cosmetic surgery to fix the damage that Parry Romberg Syndrome caused. All I can say is yes, most likely you will be find suddenly you are getting "looks" of approval instead of those"stares." Don't get carried away with the "fixed you". remain true to who you are and what lessons you have learned from the "dark side".

HIDE AND SEEK

When my right side of my face became visible to everyone I was about 12. Not quite a child ,I was still mature enough to realize I was living with a undiagnosed illness that stole my identity and my self image. Ok , I was angry very angry. I asked God what did I do to deserve this? I was the perfect child.

After a while I accepted the fact I could not control what this illness was going to do, and nobody had a clue what I had. All I know I was still the same person who was "given too many gifts" according to my mother.

I resumed playing tennis, I was so good my father was told to get me a coach. I was the only girl on the varsity boy's tennis team. Nobody mentioned my face instead they noticed my killer serve and backhand.

I also never stopped playing the violin. I started in second grade and out of 20 girls my teacher, Miss Ball picked five girls, including me to continue. She said to the others"go back to class you have no talent." I played in the orchestra from 2nd grade to 12th grade. I have to say when I was playing in the orchestra I was lost in the beauty of the music and nothing else mattered.

What I am trying to say is Parry Romberg Syndrome did not steal my entire identity. It wasn't going to make me give up the things I loved. Everybody has their own hobbies and talents.

Keep living!!!!! Do the things you love to do!!!!! Show the world that you a shining example to inspire other people who may be ill or impaired.

This helped me get through the worst part of my illness and I didn't want to hide from the world anymore. Hide and seek was after all never really a fun game.

I still get nasty Parry Romberg Syndrome comments.

I was just going to watch the Superbowl game last Sunday at my neighborhood temple. It was also my first social event since I had a little Parry Romberg Syndrome surgery to maintain the balance of both sides of my face. I had some fat injections on the right side of my face, and my lip was lowered a bit. This work mainly cosmetic was performed by John W. Seibert late Dec 2009.
Some of my friends know what illness I have and when they saw me just commented that I looked good and asked how everything was nothing personal. Most people in my temple do not even know a thing about my PRS.
From years of dealing with social idiots I know there will always be one person who says the wrong thing. In this case, a lawyer friend who always lets say "admires me" and always tells my husband how attractive I am, came up to me and commented how good my face looked and to my surprise he had to add, I thought something was a little "off" with your lips. He went on to ask me if I was going to have more surgery.... I cut him off there, and told him it was none of his god-damn business and added "enjoy the rest of the game". I turned around and smiled.
Nobody treats me this way and I don't have to listen or defend myself. I hold my head high and smile. Some children never grow up.

Should Parents Post Photos of Their Children with Parry Romberg Syndrome?

I often wonder if Parents think about the effects of posting images of their own child suffering from Parry Romberg's Syndrome on a cover of a magazine .
Often the parent makes the decision for the young child without their approval.
The stories I have read about a few young patients with Parry Romberg Syndrome is done with the best of intentions I am sure.
BUT, are these photo's doing more harm than good to a young teen girl who see's her face and the facial damage the syndrome has caused plastered on a national publication that millions will view? I would have been horrified to say the least if this was done to me at the age of 13 or so.
Children that have Parry Romberg Syndrome do not like to have their photo taken.
I HATED IT.
When my parents realized this they quietly removed the huge famaily portrait from my brother's Bar Mitzvah from the Living Room Wall.
My face was used for medical publications that did not show my identity. This I feel was for the good of medical research.

No name calling week

My children attend a elemtary school in New York where they devote one week of the school calander year to a great educational and sociol issue.
They call this event "No Name Calling Week"
The name practically says all but children are given a heightened awareness about issues they do not know or learn fromtheir parents.
It is a basic concept that it is cruel to call anyone who is diferent, physically ,emotionally and academically should not be singled out and be called names that hurt.
Some kids are too immature to realize that it is not socially accepted at school or anywhere else.
Children need to know even if they are kidding around for the student on the receiving end it isn't funny and hurts their self image and self esteem.
I was called "scarGirl" and "freak" and similar names when the right side of my face began to "melt away" a few times, but it hurt me and it felt like a stab to my heart.
Funny though I am sure back in the 1970"s when I decveloped Parry Romberg Syndrome, the teachers also heard the comments and just did nothing.
Kids during this special week are also taught to reach out to those who are different and treat them with kindness or in some cases offer them support, friendship and trat them like anybody else. Children who are sick, handicapped or just a few pounds overweight have enough have enough to deal with without being called names.

Every school in the United Srates should participate in "No name calling week" It works wonders and has tremendous impact on children's lives.