You are already beautiful by Cheryl Rick Klein: For my mother

You are already beautiful by Cheryl Rick Klein: For my mother

You Are Already Beautiful by Cheryl Rick Klein

Already Beautiful Art

Survivor Diaries on CNN

Boston and the rest of America should be so proud of Adrienne Davis, a dance instructor whose leg was blown off watching the Boston Marathon when the bombing occurred last year.

This documentary type special is so extraordinary because it is raw, real and such a inspiration to others especially those who have lost a limb. The hour long  special is filled with emotional clips such as Adrienne on the ground moments after the bomb went as

first responders try to save her life

is not edited and very disturbing.

    I broke out in tears in the clip when Adrienne is wakes in the hospital and is told she lost a leg.

The sheer horror of her new reality broke my heart.

However, over the next year this courageous young woman fights to regain her life back. This was not easy to watch because although she was making great strides such as walking again with a prosthetic leg, emotionally she is terrified of going out in fear another bomb will

go off. Most upsetting was when she had a emotional meltdown when she saw her husband watching a fireworks show on his computer.

As time passes she returns to the exact place she was during the bombing. It was right in front of a restaurant and she goes in and hugs the man who works there. He was the first person to run to help her and probably saved here life.

As she promised Anderson Cooper in the hospital days after the bombing, she with the help of a special bionic like prothesis gives him a dance lesson.

Adrienne you Rock!!!!!

 

Read my new blog on Facebook pages!

 

My new blog on FaceBook pages!!!!!!

  http://livingwithtwitterfamousdaughters@Facebookpages.com

Scars make you stronger

Scars Make Youy Stronger

Searching for a great Plastic Surgeon is so hard when I had the best. No Plastic surgeon would touch my face because of the lack of experience with my facial rare disease, Parry Romberg Syndrome. Somehow Dr John Westin Seibert ,who was based Manhattan ,lost his medical license in New York. Totally unfair because Dr Seibert, who was the chief of the Plastic Surgery at NYU Plastic Surgery Teaching Hospital. Among his fellow Plastic Surgeons  he was highly praised and considered a "pioneer" in the development of new facial procedures to help people with disfigured faces regain their dignity,lead normal lives and smile when they look in the mirror. 

He invented a very radical micro surgery called a "Vascular Facial Transplant." The first long term procedure to stop and fix the damage caused my this rare ullness. I had this surgery 12 years ago and I only have to have a little touch-ups every 3 or so years. So little is actually know about PRS and Through social media and my blog based on living with a rare disease many desperate people saw Dr. Seibert many traveling thousands of miles to have the costly life changing surgery I had. This disease varies in severenes and  

The procedure helps some more than other's. So someone who wasn't happy spread vicioious news stories and eventually Dr. John Seibert relocated his practice to Wisconsin. I was devastated.

     I saw a new doctor last week to check my face since my much loved doctor who I have mentioned in many posts no longer practices surgical procedures in New York.

    This doctor who I introduced through my blog to so many readers is now practicing in Michigan.

    So how did I pick a new doctor to trust? I first researched my areas top doctor lists and called looked at their 

experience and patient comments.

     There were so many it took me hours of research and basically it was a waste 

of time. I then thought back to the Surgeon who saved my daughter's arm 

10 years ago when she was just three years old and was critically injured when her camp bus flipped over leaving her left arm completely "de-gloved" of skin her bus flipped on its side and her little arm

was dragged through the window and road for half a block.

    His was on call that day and miraculously was able to pull down all the skin on her arm and close the massive 

wound. 

     Yes she still has a large scar in the back of her arm that has faded with time

but will always be part of who she is.

 The important thing is she survived and that wonderful Plastic Surgeon gave my

daughter back the total use of her arm.

   I brought my daughter with me to see this doctor and he still remembered her first name and he told her she was his his favorite patient! I know he wished he could tell Samantha her scar can be revised by the look I saw in his eyes. However, it just isn't possible without the risk of joint and nerve damage. 

   I told him I could never thank him enough for saving her arm and my daughter hugged him. 

   She then said, "My mom and I have scars but we are stronger because we learned life is not about being perfect."

  Quite a statement about life from my

beautiful Samantha. 

 

 

Health is wealth

My Family 2013

Me, my husband and my two awesome daughters. Photo taken Feb 2013 on the Carnival Miracle

   

You are already beautiful by Cheryl Rick Klein: The Romberg Connection and John Weston Siebert Md

aYou are already beautiful by Cheryl Rick Klein: The Romberg Connection and John Weston Siebert Md

in response to your comment heather i can certainly relate to most of your comment. i am sorry my capital key on my blackberry is not shifting for some reason, i apologize.

my parry romberg took a major change for the worse after i gave birth to my first daughter in 1998. i never really thought there was a connection until three years later when i gave birth to my second daughter. to make matters worse i didn't even know what illness i had until i saw dr. seibert who diagnosed me and confirmed prs had become a rare disease just a year before.

i know there is a link with hormone levels in women regarding parry romberg syndrome.

it seems that i contracted prs at the time of my first menstrual cycle and it flared up during and after pregnancy also when my estrogen level was elevated. i can now look forward to see what happens in a few years when i hit menopause, lol, can't wait.

heather i had a few facial seizures and usually it was stress related. some prs patients i heard have seizures almost everyday.

this strange illness is scary and i have my good and bad days. you and i are lucky god bless my girls both have had their first periods and knock on wood, no signs of..........

thank you for your comment and you can contact me personally anytime.

You Are Already Beautiful by Cheryl Rick Klein

You are already beautiful by Cheryl Rick Klein: Daddy I Wish........

You are already beautiful by Cheryl Rick Klein: Daddy I Wish........

You Are Already Beautiful by Cheryl Rick Klein

Diabetes is a disease that nobody should know from.It attacks the body and a mere cut on the foot could lead to amputation of the whole leg. I watched my father in a span of six years lose both his legs and his dignity.
Like Parry Romberg Syndrome, this not so rare disease is autoimmune and there is no magical cure.
Please Support and donate to find a cure for Diabetes.

Pre-eclampsia Could Result From Rejection Of Fetus By Immune System

Pre-eclampsia Could Result From Rejection Of Fetus By Immune System

You Are Already Beautiful by Cheryl Rick Klein

Both My daughters were born on Friday the 13th.

A hug from nikki, who is 13, is like a soft blanket wrapped around my soul.

I am so blessed to have brought two amazing daughters into this world. I had major complications with my eldest daughter Nicole when I developed Toximia and in my 30th week of my pregnancy and my blood preesure was so high I was admitted to the hospital and for two weeks I was monitored and my blood pressure soared even higher.

Nikki and I almost lost our lives when I about to have a seizure while they prepped me for a emergenency C-section.
I remember my mother just came to visit me and they told her I  was in pre-op

I remember being scared and told the nurse if it is a choice in case you can only save me or the baby,,,,,save Nikki
My right foot I recall wouldn't stop shaking. Nicole Rose was born at 10:07  on friday the 13th , just two hours shy of Valentine"s day.  She was 33 weeks and weighed only 3.14lbs. Yet she screamed when she was born and to everyone"s surprise her lungs were fully developed.
When the showed me this itty bitty "chicken" that is what the doctor called her,
I saw the most gorgeous little face and looked up at the ceiling of the operating room and thanked God.
Nikki was tested and passed all tests and after only three days in the hospital and was sent home with me.

That experience is another story.




Samantha was born three years later also on Friday the 13th. I somehow lost all my water, like a slow tire leak, and at my 35Th week visit to my doctor he was about to see if Sammy's lungs were developed and so he was about to perform amniocentesis and said "STOP" "Where is her water?????"? I don't know isn't it there???
"Well you are going straight to the hospital from this office" he said.
Did you bang into anything pointy in the last few days???? I don"t think so.
That afternoon Samantha Jill was born by emergency c-section. She was a healthy 6lbs 12 ounces/
She had a beet red face , the poor little thing , "Is that permanent??" I asked.
No, she has a red face because she was like a fish without a fish tank.

I looked up at the ceiling and again thanked god for my second miracle.

I am so blessed

I

You Are Already Beautiful by Cheryl R

My blog hits 7000 views! One view for 7000 Rare Diseases

You Are Already Beautiful by Cheryl Rick Klein

A few days ago I added a gadget from Blogger called "stats".
I was not interested in how many people read my blog and I really don't care about rank and things of that nature, it is not why I blog.

I was amazed, shocked and O.K,proud to see over 7000 people had viewed my blog.
How ironic I though the number 7000 was such a familiar number for me and the subject matter of my blog.
There are over 7000 rare diseases we know exist and yet know so little about.
My blog, You are already beautiful, about just one rare disease Parry Romberg Syndrome,
Ironically had over 7000 views.

Is this a sign writing a painful life journey having PRS for over 36 years is actually being noticed?
If so I vow to write more often.
Thanks to everyone from the bottom of my heart.

You are already beautiful: For my mother

You are already beautiful: For my mother

You Are Already BeautifulParry Romberg Syndrome and Me My story by Cheryl Rick Klein

Desperate Parents with Children that have Parry Romberg Syndrome.

You Are Already Beautiful Parry Romberg Syndrome and Me My story by Cheryl Rick Klein

Tips for parents who have a child with PRS
  1) Stay calm!!!!! I know this is hard but you must do this for your child's sake.
  2) Find the right doctor even if you have to travel. Contact NORD and they can help.
  3) Call your insurance company and they also can direct you to doctor's who are
      listed with their network.
  4) Do not change your daily family routine. This is so important. DO NOT TREAT
      YOUR child different than your other siblings.
  5)  Join a support group for parents like you. The Romberg Connection is the best
       and it helped me and my family get through the toughest times.
  6)  Keep the matter private. Make sure you only discuss the situation with people you
       trust. There are people who may spread vicious gossip and need I say more,,,,,
  7)  Keep your child active aka sports, after school activities and socially.
  8)  Do not take family photos for a while. This was the most disturbing for me, when I
       saw my face in photo's I couldn't deal with it.
  9)  Find cosmetics that conceal some of the facial damage. Sephora has wonderful
       new products that I still use. Bare Minerals powder make-up is wonderful . It looks
       so natural and does wonders,
 10} Angel faces is another support group dedicated to helping young girls with facial
       flaws. They also offer so much hope and advice.
  11) REMEMBER..... there are many new cosmetic procedures your  child can have to
       correct their face.
  12) SSD is now available for older patients and care-givers who had  to stop working
       as a result of PRS.
  13) Support and advocate for PRS and all Rare Diseases. Many groups have monthly
       newsletters that have up to date information,
   14) Contact me.at cklein2794hotmail.com anyttime and I will personally listen to anything on your mind. I am not a professional, and will not offer medical advice.
But I can be a friend with the strictest confidence.

     I have walked and still walk in PRS patient's shoes as a child and now as a parent.
     I will be walking down this road my whole life.
     I no longer walk alone.
     

    

For my mother

You Are Already BeautifulParry Romberg Syndrome and Me My story by Cheryl Rick Klein


July 14 th was a very hard day for me. It was my mother"s birthday. She passed away four years ago at the age of 72.

I miss my mother so much it still is very painful to talk about.

My mother and I had a difficult relationship.
When I was young I thought she was the most beautiful woman in the world, tall slender glamourous.

She was not the typical mother who hugged and kissed me everyday. She didn't tuck me into bed and read me a bed time story.

I thought even back as young as five years old, my mom doesn't like me. I thought of ways to make her love me. I was perfect. I did everything right.

I was such a good girl she didn't even send me to nursery school like my older sister Francine who used to bite everyone in the class.

I wanted to go to school like my sister. I tiptoed around my mother and it wasn't so bad.
She told everyone I was the sweetest little girl. She still never hugged me or told me "I love you"

Fast forward to age eleven.
I was losing my right side of my face and felt well......words can't describe the horror I felt.

My mother still never hugged me or said "you will always be beautiful to me" or I love you.

My mother may have been demonstrutive. But she loved her family more than words can even describe. She was the one who waited for hours every month in the doctor's waiting room and while I was getting painful silicone injections she sat on a chair. I wanted to squeeze her hand while the procedure was done. Instead the nurse held my hand.

My mother was complicated but brilliant. She never went to college but she was CEO material.

My mother didn't like to say goodbye. The reason she told me was that one day the goodbye would be the last goodbye.

When Dr Siebert performed my vascular flap transplant in 2002 she gave me 40 thousand dollars without even a blink. You have to do this procedure. I had complications and almost went into shock because I had so much silicone, the doctor had a hard time.

She told me if I died during that surgery she would never forgive herself.
She was there for me while I recovered and the swelling went down after many months.

I will never forget the day she said "You are so beautiful" with tears in her eyes. Then again you were alway beautiful to me.

When I took my daughters to visit their "grandma" she always told my girls how much she loved them and hugged them and read books to them.

I was amazed, I wasn't jealous, I was so happy my mother finally was able to "show her love."

On March 16th 2006 my mother passed away in her bed. I realized I never told her how much I loved her and never would get the chance.

She never said goodbye.


I love you and miss you forever .
Dedicated to Gladys Ruth Rick (1931-2006)

Daddy I Wish........

You Are Already BeautifulParry Romberg Syndrome and Me My story by Cheryl Rick Klein

It has beem 10 years since you left



Dedicated with love to MANNY RICK my dad who died May 23, 2000



My father was the first to notice that something was very wrong with my face when a small cut by my chin didn't heal. He wasted no time and took me to every medical expert to find out was was wrong



He held my hand and told me that I was still beautiful and told me to remain strong. He told me he would never give up to make me well again.
He showed me what true beauty is. You won't find it in any mirror.

My dad lost both his legs to complications having diabetes.
I told him what he told me so many years ago.
Be strong, you are a beautiful person
And he was.........


It was the day of my little sister's wedding. I went over to my parent's house
to get ready for the big event.
Suddenly, my mother, and my two sisters were gathering their gowns and were heading to the door. " Where are you going ? I asked."
We have to get to the temple early we are having our makeup done professionally. They didn't make a appointment for me.
My face said it all. My dad who was watching the situation remarked "I told you it wasn't right to not include Cheryl."
I just stood speechless as they pushed past me and headed out the door.
I ran upstairs to my old room and cried. I didn't understand why I was not included. I lost half my face to Parry romberg Syndrome and it took years of cosmetic procedures to erase the damage on the outside.
Could my own family be so shallow and actually be jealous I became too pretty???
My father called me to come downstairs.
He had tears in his eyes when he saw me. He opened his arms and hugged me tight. We cried together.
Then he said the most beautiful words to me I will never forget.
" You don't need a make-up artist you are so beautiful just the way you are."
I loved my dad more than anyone in the world.

Diabetes is also a auto-immune illness that can be devastating.

Parry Romberg Syndrome became a official rare disease in 2001.
Sadly my dad never knew I was finally diagnosed, he died just one year before.