Friday, March 25, 2016

Simon Says: You can make a difference

Simon Says: You can make a difference: Cleft Palate Foundation 1504 East Franklin Street, Suite 102 Chapel Hill, NC 27514-2820 USA (800) 242-5338 (919) 933-9044 When I was...

You can make a difference


Cleft Palate Foundation

1504 East Franklin Street, Suite 102
Chapel Hill, NC 27514-2820 USA
(800) 242-5338
(919) 933-9044
When I was searching the internet for a Craniofacial specialist I came across the website for The Cleft Palate Foundation. It was on this website that I was able to find the University of Illinois Craniofacial Clinic. While looking at all the resources on the Cleftline website I saw that you could purchase a cleft line bear. The teddy bear had stitches on his lip. For $10.00 you could support the Foundation and also bring a smile to a child's face.

When I was at the University of Illinois Craniofacial clinic I saw how many children were being treated for cleft lip/palate. I had no idea how many kids are born with cleft lip/palate.

When I was born, I had surgery at about 6 months of age and then again as a teenager. I went on with my life and never really gave it much thought. I would go for dental care during my adult years and never had a problem. Until I developed an abscess. Then it changed everything. It changed my life and opened my eyes.

 After doing further research, I came to learn how many children are born throughout the world with cleft lip/palate. I realized things just don't stop once you have the initial surgical repair. Some countries, there are still thousands of children waiting to have the initial surgery. The children are looked upon as outcasts and abandoned.  My family has always contributed to the Smile Train over the years. But, I needed to do more. I felt compelled to give back. But how??

While at one of my appointments at the UIC clinic I sat and watched the steady stream of children and parents coming in for their appointments. Every seat was taken in the waiting room. It then hit me. Why don't I buy as many of these cleftline teddy bears and give them to the children at the Clinic. And, that's exactly what I did. I would buy 20 bears at a time because that is how many would fit in a box to be shipped to the clinic.

I would buy the bears throughout the year. I also got people at work to purchase a bear. I also would give bears out at work to people that had little kids. My thinking was every child would love a teddy bear and it teaches children at an early age that we are all different. Even teddy bears are not all exactly alike.

In the last two years I've been able to purchase a large number of teddy bears. It supports the Cleftline Foundation and it brings a smile to a child's face. Plus as an added bonus, it makes me feel good.

When I came to the clinic for one of my appointments, Alma, one of the terrific nurses there told me that she gave a bear to a girl that was going off to college. The girl had been a patient of the clinic for years and she was so happy to receive the teddy bear. Alma told me the young lady was going off to college and she was going to bring it with her for her Dorm room.  That brought a smile on my face!

And yesterday, when I went to the Clinic for another appointment, Alma greeted me and told me how much the patients like the bears. A smile appeared on her face and mine. She made my day.

So you see, sometimes when you least expect it, a simple gesture can make a difference. We get so caught up with our life that we forget the small things. Those small positive gestures can turn into something wonderful and powerful. And, it creates a snowball effect. You want to do more. You want to make a difference. You want to leave a legacy of doing the right thing and doing something positive for someone. And so, more good things are coming out of being treated as an adult cleft lip/palate patient.









The cleft line bear has stitches over its lip. It's really adorable. And, on its ear is a tag of the 1-800 number saying that Hope and Help are on the line. Just hugging the bear makes you want to smile.

For $10.00 you can purchase a bear. You are never too old to have a teddy bear!

Thursday, March 24, 2016

Never give up hope



Today I went to get my one dental implant removed. When I walked into the Clinic, Alma, one of the R.N.'s said hello to me. She proceeded to tell me that the kids just love the teddy bears that I donate. She told me she handed one out earlier to an adult cleft lip/palate patient and was so thrilled to hug it. I told Alma, that she made my day.

I then went to dental Clinic for my appointment with Dr. Reisberg. He is not only a great Dentist but a great man. He is very caring and it's like watching an artist at work.

He put cherry numbing gel on my front gum. While he waited for the numbing agent to take effect, he showed me two dental markups. Two dental students and a newly hired Dentist came into the room. He asked me to smile. He did careful measurements of my scar and where my midline was. They discussed options amongst themselves and he looked at me so closely, as if he was going to do a painting. He'd line things up, then ask me to smile again and this went on for about ten minutes.

It was then time for the injection. Well, it was really unbearable. They had to use a larger needle because there was so much scar tissue. 54 years worth of scar tissue. As he did the injections I begged for him to stop. Pleaded with him to just give me a moment to compose myself. But, he told me that he had just a little more to do. Maria, the assistant, handed me Kleenex. She told me she wanted to hold my hand but she didn't know if I would swat her away. Ok, so the injection part was over. I no longer was laying stiff in the chair with my feet hyperextended.

He took the little silver cap off of the tooth. He tapped it and asked if I had any pain. I told him no pain, just a little pressure. He then tested the implant again. He asked me again if I had pain. I told him again no pain, just pressure. I opened my eyes and looked into Dr. Reisberg's eyes. He said to me that he never saw anything like this before. He told me that he thought the implant may be good. He thought for sure that he was going to remove it at this appointment. The past two appointments, he would tap on the implant and I almost jumped off the table. He thought that perhaps the screw was too tight and when he went to loosen it in prior visits that maybe there was tissue that had adhered around the implant and that's what caused the pain.

And so, there is still hope. I told him it must be due to the Holy Water! I bless myself with Holy Water and say a prayer each morning.

The implant was not taken out. Not at this appointment. Maybe, just maybe, the implant will turn out to be good. I have faith that all will turn out the way it's suppose to be. I'm ok with that. If it turns out that the implant is indeed not good, then I know Dr. Reisberg has a plan to attach two crowns to the other implant. I'm in good hands.

Just when you prepare yourself for the worst, sometimes you are given some hope. And, the frown turns into a smile.

Wednesday, March 23, 2016

Look beyond what you first see



Tomorrow I go to get my dental implant removed. I dread tomorrow. I am in mourning. I've waited two years for my bone to grow. I had bone taken from my hip to build my palate. I then waited another year and had the rods surgically implanted into the bone so it could withstand eventual implants.  I waited two years for the bone to get strong. I was missing my front teeth for two years. But, I adapted knowing that one day I would have two beautiful front teeth because of these dental implants. I never for a moment thought the bone would not be strong enough.

As I was walking Barrett today, I came across a lawn filled with colorful Easter eggs sprinkled all over the front lawn. It hit me. My dental implant process is like I've been holding this very fragile egg for two years. I nurtured it and was hoping it was growing. I did everything I was suppose to do. And yet, the egg cracked. Like my bone with the screw in it, it just cracked when an attempt was made to see if it was strong enough. It wasn't.


And so tomorrow I go to have the screw pulled out of my bone. All that time hoping and praying the bone would take. Yet, it didn't.

I looked around the front lawn with the colorful Easter eggs. Eggs, like people come in all colors. And, an egg can be made into crepes, deviled eggs, quiche, omelet, poached, fried, scrambled, over easy, basted, and hard boiled. So many varieties.


So, my egg has a crack in it. I realized that a egg doesn't get thrown out because it has a crack in it. It can be made into so many wonderful dishes and enjoyed.

So,this implant didn't work. But, I have high hopes that my wonderful Dentist will be able to work his magic. I'm confident he will. He will somehow utilize my one good implant to make it into a beautiful pair of front teeth.

Sometimes things don't go as planned. That's when you have to realize that maybe it wasn't meant to be. You realize a plain white egg may have a crack in it, but it's still good. You have to look at the bright side.


Maybe it's a coincidence that my appointment is just a few days before Easter. Easter, is celebrated as a time of rebirth and renewal. And so, I'm going to forge ahead. I might be losing my dental implant, however, I look at this as a time of rebirth/renewal for me. All will work out just how it is suppose to work out. I have faith.

We need to learn to look beyond the physical and appreciate each other for what's on the inside not the outside.

Tuesday, March 22, 2016

Everyone needs a sign


My sign came to me on my way to work. I was contemplating leaving a stable job in which I had been with the company for 12 years. It would be a major move. I liked the people I worked with and knew my job. However, it was becoming very clear to me that the right thing to do was to leave. 

As I was driving down the road and making my way to the gatehouse, a car was in front of me. Oh my goodness. I looked at the license plate. And there it was, right in front of me. I grabbed my cell phone and quickly took a picture. This was just too amazing. This was finally the key to the lock, the combination numbers to the safe, the answer to my prayers.

Let me go back. For a good year or two I kept seeing this number. 808. The more I noticed it, the more it appeared. The key to our file cabinet is 808, my eyes always seem to look at the clock at precisely 8:08. Our hotel room on vacation was 808. The extension 
to the front desk was 808. Everywhere I looked I saw 808. The area code in Hawaii is 808-one of my favorite places to vacation. The restaurant in Las Vegas was named 808. Those numbers spoke to me. If I had a camera for every time I saw the numbers 808 it would be full. But, I didn't need one photo album. I just needed that one picture. The picture that literally spelled it out for me.

You would think I would have gotten it earlier. I would have understood the meaning. But, no. It had to spelled out to me.

I firmly believe you have to be open to things. You have to let things in. Even though you might not understand it, you need to embrace it and go with it.

I believe in angels. I believe that you have souls watching out for you.

I've told my family and friends this story. Now when they see 808 they will call me, or text me saying they saw the number and were thinking of me.

I wear a bracelet with 808 on it. It's always on. It serves as a comfort for me.

The picture that literally spelled it out for me was a license plate that read "Dad 808".  It was right in front of me. I firmly believe that it was and is my Dad saying to me that he is with me. Always watching out for me. 

My Dad died when he was only 72 years of age. I was 32 years old. He died too soon. I needed more time with him. I was lucky enough to have 20 more years with my Mom before she died. I had so much more to learn from my Dad. He was a great man. He had a heart of gold. He helped shape me. He taught me to speak up. He helped me with my confidence and told me that "education can never be taken away from you". He was so proud of me. He was thrilled that I went into Nursing. 

I remember coming home from church one Sunday and telling my Dad that they said they were praying for him. I thought to myself that he was fine. But, he knew better. A few days later he died of congestive heart failure. I was in shock. How could a man with such a huge heart die of congestive heart failure. His heart that was once so strong just gave out.

And so, eighteen years ago after my Dad died, I finally started seeing his presence. Every time I see 808 I think of my Dad. I know he is watching over me. I'm sure I saw 808 way before 18 years after his passing. But, maybe I was not ready to put the connection together. My eyes were closed but now they are open. I'm trying to make my Dad proud of me. I'm trying to do the right thing. Each and every day. 

Sometimes when you least expect it, you are given a sign. It's your choice whether or not you want to embrace it. I'm so happy I chose to make the connection. It gives me peace.





Monday, March 21, 2016

Why do bad things happen to good people?

Why do bad things happen to good people?

I ask myself this question and have not found a good enough answer. Is it to make us stronger? If so, I would rather lift weights. 

Newborn babies are born with life threatening health conditions. Children get diagnosed with life threatening health issues. And, adults get diagnosed as well. 

It's not just health issues. It's people who suffer from emotional, financial, and other hardships. 

You hate to see anyone in pain or anyone having a rough go of it. You feel helpless. 

I know I try and be very positive and say to smile because it does the body good. But when you hear that someone you know just heard that their brain tumor is back. Well, I just have to be sincere and say the F word.

Sometimes, the only thing to do is say the F word. Over and over again. Loud and clear. It makes me feel better. I don't know why. I can't explain it. It just feels good to say the F word.
Kids, if you are reading this, please say "Fudge", instead.

Thank Goodness my Mom is not alive to hear me say the F word. She would give me a very disappointed look and say, "Oh honey, please don't say that word". But I'm almost 55 so I feel like I've earned the right to say it.

Please take a moment and tell your loved ones that you love them. Give them a good hug.  Raise them up. Cherish their laugh and the good times you've shared. Don't put it off. Tomorrow is not a given.

The reality is bad things do happen to good people. That's when they need you the most. Be strong for them. Sit, listen, and hold their hand. 

Simon says never upstage the Bride




When I was a young girl I always had one ear that would stick out. No matter how I parted my hair, my ear stuck out beyond my hair. Like Mr. Potato head.

I'm not sure how old I was, maybe 10 years old. I remember my Mom taking me downtown to see this doctor. The minute, I walked in his office, I could smell the rubbing alcohol. From what I can recall, the doctor gave me 10 injections in each ear of novacaine or something along those lines. I screamed with each injection. It really was torture. I was screaming and crying as my Mom tried to comfort me. The doctor then surgically pinned my ears back. He took tissue off each ear to make my ears smaller. This was all done in his office. No day surgery with IV sedation. Not back then. It is hard to write this because I remember those injections to numb the pain. The injections were the worst part.

After he was done, he bandaged my head up in gauze. I'm not talking a little gauze. No. My whole head was wrapped up like I just had brain surgery. No piece of hair was showing. Just me and my head wrapped in a turban of white gauze.

I remember going home and the injections wearing off. It was unbearable pain. My ears were throbbing and nothing stopped the pain. I don't remember taking pain medication. I am not even sure if he gave my Mom anything to give me. I remember being in our basement, being held by my Mom as she rocked me. She was beside herself. I was inconsolable. The pain was just terrible. My Mom would rock me and try and comfort me but it didn't work. I needed some IM Demerol or something strong like that. I remember my Mom finally giving me some Irish Whiskey to sip. Irish household so Irish whiskey was in the cabinet. It did the trick. I fell asleep in my Moms arms. Come to think of it, maybe that is why as an adult I loved Irish coffee!

About a week or so later, I remember going with my family to our neighbors wedding. Seriously. There I was in a cute dress and my head wrapped in gauze. I have no idea what my parents were thinking. Clearly they could see my head was wrapped in gauze. You would think that one of them would have stayed home with me while my family went to the wedding and reception. But, no. I went. And, I was happy to go. I remember smiling and having a good time at the wedding and reception.

Can you imagine the horror on the Brides face when she saw me with my head wrapped up in a white turban. And, the guests. Talk about taking away from the Bride. Well that's what I did. I knew I looked different and stood out. But, I didn't care. It was as if I forgot I was walking around with my head wrapped in white gauze. I knew I had surgery. I knew I had a bandage (albeit a HUGE bandage) and I was ok with that. And so were my parents.

I know that is where I got my spunk. My confidence. My family never made me feel different. They encouraged me to go out and play. To make friends. To smile and laugh. To love life.

I'd love to reach out to the Bride to apologize some forty five years later about showing up at her wedding looking like a mummy to some extent. I know I took away from her special day. Knowing her and her family, they were good sports and said it was fine for me to attend. But, I still crack a smile when I remember the day I went to her wedding wearing a white turban. I so stuck out! I am smiling just recalling this. I'm sure I'm in her wedding album. Please forgive me!

God Bless The Day Susie Was Born














Little did I know that I already had a best friend even before I was born. Susie is my sister. We are about 18 months apart. She has always been my protector, my side kick, my partner in crime, my  supporter, my shoulder to lean on and my buddy.

See, when we were young, I always used Susie as my excuse. I would write on the sofa cushions with a Bic pen and tell my parents that Susie did it. I would fall asleep chewing gum and would wake up with it stuck to my hair. I'd tell my parents Susie put it in my hair. I blamed a lot of stuff on Susie and my parents bought it.

We would watch the Brady Bunch together, Bozo Circus, pretend we were wrestlers, play HORSE basketball, ride our bikes together, play catch and running bases in the front of our hose, kick the can and play hide and seek.

See, these were the days before internet, cable TV, mobile phones, texting and Facebook. You went out and played and came home before dark. You ate dinner as a family. And, you talked about how your day was. The girls set the table and cleared the dishes.

 I went to Kelly Day Camp as a young girl and came home crying after the first day. I told my parents that I was not going back to camp. The kids bullied me. They made fun of me because I had a scar and talked with a slight speech impediment. My Dad had already paid for the summer. And, this camp was not cheap. My parents tried to talk me into going back. Give it another go. I said, "no." And so, Susie went in my place. She went to this day camp for me. The entire summer. June, July and August. I never remember Susie being mad at me for having to take my place.

My first day of high school I was petrified. I had made friends in grade school but none of my close friends were going to Regina Dominican. I believe I was crying for days knowing that the first day of high school was approaching. I remember my sister making sure she was with me on my first day of school. She was there to take me to each class and made sure I survived my first day of high school. I was so afraid of leaving my comfort zone and going to a new school. But, there was Susie with me each step of the way, holding my hand and making sure I would make it. And, I did!

Susie also took me driving. I had no permit. Nor did I have a drivers license. But, she would take the car out and we would change seats. She would let me drive around the area. Those were the days. Windows rolled down and the radio blaring.

As we got older, Susie and I would go downtown to Rush street on the weekends. We would go from bar to bar and dance and drink and drink and dance. We had a blast. And, we always made sure we were home before our 2 a.m. curfew. Well, a few times we were a little late. We did use the pay phone to call my parents telling them we would be a little late. We would pull up to the house and all the lights were on. We were in big trouble. Big trouble.

After I graduated from high school I went to Felician College while trying to figure out what I wanted to do. I graduated from Felician College with an Associate of Arts degree. I then decided I was going to be a Nurse. I applied to Evanston Hospital School of Nursing.  A prerequisite was high school chemistry. I had never taken high school chemistry. So, that meant I had to take a chemistry class in order to get into nursing school. I signed up and started my chemistry class at North Park
College. After the second class I realized I would not pass this class. This was a college chemistry class and it was way over my head. I never took high school chemistry. So, I came home and told my parents that I was going to drop the class. It meant that I would have to go to Loyola Academy and take high school chemistry. Mind you, I had graduated from high school and had my Associate degree. But, I needed that high school chemistry class and this was the only way I could do it. So, I took chemistry at Loyola Academy two years after I graduated from college.

That wasn't really the bad part. The bad part was this-I had made plans to go to China with Susie at the end of the summer. We were all booked-airfare and tour. But, the class at Loyola was still going to be held when we were suppose to go to China. What did I do? I told my parents and sister that I could not go to China because I was still gonna be in class.  The trip was to be cancelled. But wait, my Mom and Dad decided to go on the trip with Susie. I'm laughing as I write this. I know Susie could have killed me. But, she didn't. She went on the trip with my parents while I stayed home andwent to  summer  school. Susie, yet again was my hero.

I passed the chemistry class and went on to become a Nurse. I worked at Northwestern on a female gynecology oncology unit for two years. I then spent a few years traveling the country while doing nursing for 4 month temporary assignments ( Irvine California, West Palm Beach Florida, King
George County hospital in Maryland, Phoenix and Univ of California in San Francisco.)  I was a "traveling nurse". They would give you a one day orientation to the unit, then you were on your own. In San Francisco, I worked on the AIDS floor. This was first in any hospital. Before you could go into any room you had to gown and glove. These patients were all in isolation. This shows you how far we have come in healthcare.

 I returned home one summer and went downtown with Susie to see the beautiful lakefront. Susie andI were walking along the lakefront when all of a sudden, KABOOM. I fell in an open MANHOLE. Yes, you read that correctly. When Susie realized I was not walking next to her, she looked back and saw me hanging by my elbows as my body was hanging through the manhole. Somehow, Susie was able to put her arms under my arms and after a few tries, I was able to get out of the manhole. She saved me yet again. Honest to God, there was no drinking involved. We were just walking and talking and laughing.

I came out to my sister when we went to the Wisconsin State Fair. I was in my mid to late twenties.  I was so afraid to come out to her. I was so afraid of being rejected or being a disappointment. I knew in my heart that she would be loving and approving but there was always that possibility of rejection. Some of my friends suffered horrible rejection from their parents, siblings and friends. And even though I knew that would not happen I just was so afraid of the possibility. I lived my life in secrecy.

You have to understand that times were different back then. Being gay was considered a sin and I was brought up Catholic and attended all Catholic schools. It's hard to put into words. I know Susie was upset that I did not come out to her first. I had told my sister Sherry a few months earlier. I know that hurt her deeply that I did not tell her first. That is on me and has nothing to do with Susie. It was my fear.

As a young adult, my fear of coming out led me to live in secrecy. But, I knew I could not live my life as a lie. And so, I came out to my family, friends and co workers. I am who I am. You either like me or you don't.  I was Susie's Maid of Honor and she was my Maid of Honor.

Susie has always accepted me for being me. She has such a kind, loving heart. She has volunteered with me as I become more active in the cleft lip/palate community. As we get older, our bond becomes even stronger. Susie has helped shape my life-for the better. I am a better person because of her.

Not sure how this happened, but we are now going to Estate Sales. And, Susie turned me on to butterflies. We were in Aruba and we went to the Butterfly farm. She knew a lot of the names of the butterflies and would say, "Look, there is a Monarch". A butterfly would land on me and she would quietly whisper to me that it's good luck if a butterfly lands on you.

I'm lucky alright! God sent me my angel and her name is Susie. My Boopie!

Sunday, March 20, 2016

Simon says, Pledge Allegiance to the Flag

The Pledge of Allegiance to the Flag: “I pledge allegiance to the Flag of the United States of America, and to the Republic for which it stands, one Nation under God, indivisible, with liberty and justice for all.”

I pledge allegiance to the flag.

Going back for my Grade school reunion reminded me of this experience.

I think I was in 4th grade and every day a student was picked to say the Pledge of Allegiance over the speaker system. It was a big deal! It was an honor. It was your 5 minutes of fame.

The room was actually a very small office where there was this huge silver microphone. You know the type of microphone. The type you see in the hands of singers-Elvis or Frank Sinatra.  So big that singers had to hold it in both hands as they sang.

The room was next to the Principal's office. This was the microphone that was used to make major announcements throughout the school. If your name was called to go to the Principal's office, it was because someone was using this microphone.

I knew maybe a week before that my day to say the pledge of Allegiance was coming up. I would sit with my Mom in the breakfast room as I practiced the pledge. I had problems with pronunciation -especially words with S and T in them. I would say the pledge and my Mom would listen carefully and correct me if there were words that she could not understand. I worked hard on saying the Pledge of Allegiance. Every day after school I would practice with my Mom

Well, the big day came. I was so excited. I mean crazy happy excited. I remember getting to the office way ahead of time. I did not want to be late. I remember sitting at the desk holding the huge silver microphone in my hands. I moved closer to the microphone. I wanted to make sure everyone could hear me.

The woman flipped some switches on the desk and made the announcement that "Patty Simon would now be saying the Pledge of Allegiance" and to stand. She then handed me the microphone. I started to say, "I pledge allegiance" and well, I think I blew out the speakers. I was way too excited. And, way too loud. The woman looked at me before I could continue and signaled to not shout but to talk softer. And so I did. I have to say that I nailed it. I said the Pledge beautifully. Oh, I wish my parents were at school to hear me.

I finished the pledge and walked back to my home room class with a great big smile on my face. All of the practicing payed off. I did a great job. I smiled nonstop for the entire day. I not only was proud to be an American but I was also proud of myself. I had a small speech impediment but that did not stop me from doing what every other kid in school could do. When it came time for me to step up to the microphone, I cherished the moment and grabbed the microphone with both hands. And, a huge smile came over my face.

It was a great confidence booster for me. And, I was so proud to say the words of Pledge of Allegiance.

Maybe now is the time that we all need to stand tall and be proud to be an American. Reinstalling this faith and unity in citizens is key to our future.

Never let anyone put a hand on you

The "Slap"

When I was a young child I had a speech therapist come to the house to help me with my speech. She was a friend of a friend. I was maybe 7 years old.

Now you may think, wow, you had a speech therapist come to you house? Yes. This was the 60's. Doctors used to make house calls as well. There was no Craniofacial team of doctors and specialists back then.

So, anyway, I was in the breakfast room with the speech therapist. I was practicing my pronunciation. I had exercises to do and I was saying the words out loud. Well, evidently I did not say the words correctly. The therapist slapped me hard across my face. She slapped me!

My Mom came rushing into the breakfast room to see what the commotion was. I told my Mom that she slapped me across the face. The therapist did not deny it. She actually told my Mom that I was not saying the words correctly.

I remember this part very clearly. My sweet, soft spoken Mom who would never hurt a fly said in a very strong and loud voice, "Don't you ever lay a hand on my daughter. Ever. Get out of the house and never come back".

Well that was that. No more speech therapist. My Mom would be my speech therapist.

That experience helped shape my life. My Mom stood up for me and took
on the role of helping me speak better. Pronunciate my words.  We practiced words like thirst, first, shirt, sugar, etc.

Nowadays, this person would have been arrested and charged with battery. But not back then.

Recently, when I told the speech therapist at the UIC, she could not believe it. But, you have to remember that was in the 60s and things were very different. Very different.

For me, I would not change a thing. The "Slap" was an experience that I share because it says a lot without saying a lot.

Never let anyone lay a finger on you. Speak up for yourself. Know that you are not perfect -no one is. And, make sure you surround yourself with people that lift you up. People that are positive and forward thinking. People that embrace and give a good hug! No slaps, just smiles!

Simon says always have a back up plan

Oh my God! Have you ever lost your phone? You search your purse, your pockets, your coat pockets looking for your phone. However, you can't find it. All of a sudden you start going into a panic. You tear your house apart. You tear your car apart. You use someone else's phone to call your mobile phone to see if you can hear your special ring.

You say to yourself that it has all your information in it. Phone numbers, access to your Email, your pictures-well, everything. For the life of you, you can't remember anyone's phone number. If you had to call someone from memory you realize your brain is mush. It's not your fault. It's Apple, Samsung, etc.  They made you rely on technology so much that you can't rely on your memory to recall phone numbers, addresses, last names, Doctor's names or how to get to point A to Point B without the darn mobile phone.

Remember when you knew all of your friends phone numbers by heart? You used to use a telephone book to look up the address for a plumber or painter. You knew how to read a map and carried maps in your car. For me, I had maps of the City of Chicago, Wisconsin and  a highway map of the United States.

You carried people's business cards in your wallet. If you needed someone's number you would rifle through your wallet reviewing your stack of business cards. You then would use your phone at home (land line). Or, if you were out, you would always make sure you had plenty of quarters with you in case you needed to use a pay phone. Back then, pay phones were everywhere-gas stations, food stores, bars, etc.

Land lines and pay phones are becoming extinct. So is the answering machine. I'm the type of person that will always have a land line. Just in case. And, of course, I have to have the answering machine hooked up to the phone. Again, just in case. Now, the only time I use the land line is to call my cell phone number to see if I can hear the cell phone ringing and then I can locate the cell phone.

Oh yes, the cell phone. It was lost. I unknowingly dropped it at a restaurant while having dinner. I realized I didn't have my phone when I got home. I tore the house apart, the car and checked the pockets of all the clothes I was wearing. I retraced my steps and used my Ipad to Google the restaurant's phone number and then used my land line to call the restaurant. After speaking to several people and describing where in the restaurant I was sitting they found my phone. It was as if I won the lottery. They had my phone. My connection to the world was only disconnected for a few hours. I made a sign of the cross and said, "thank you Jesus".

Now, if only Gino's East would call me to tel me they found my wallet. That will not be happening. My wallet was stolen the day after Christmas while at the restaurant in downtown Chicago. My hometown. I was not traveling abroad or in a different state. I was in Chicago. Drivers license, credit cards, cash station card, insurance cards, gift cards and treasured pictures-stolen. Never to be returned.

You don't realize how much you use something until it's gone. It's these life lessons that speak to you. An IPhone and wallet can all be replaced. Albeit a real pain but still replaceable. These are objects. Objects. One thing that can never be replaced is your family and friends. All the memories, laughter, good times, special moments and the love you feel in your heart knowing you are loved!



Nursing is a wonderful career

Nursing is a wonderful career

A few weeks ago, I met up with a team of labor and delivery nurses and doctors. I had not seen them for over 20 years. But, it was as if time did not go by. We met at Meier's Tavern, ate tater tots and sipped our beverages as we reminisced. The laughter and the hugs-we were loud and we were happy. It was a large turnout. Probably 25 people that came out on a cold Chicago winter night to meet up with old co-workers/friends.

When I was a labor and delivery nurse at Evanston Hospital I was around 25 years old. I had done
medical and surgical nursing. I had administered chemotherapy. I had worked at county hospitals and private hospitals. But, I knew nothing about labor and delivery. And, to be honest, I just never felt comfortable being a L&D nurse. Some nurses were made to work in these fast paced areas-L&D or in the Emergency Room. They loved it when someone yelled "crash section", "she is crowning", "footling breech", "decels". Not me. I wanted to hide. I hated the life and death part of working in L&D. One minute everything is going great with your patient. You are out laughing at the nursing station with your fellow nurses and then, BAM, the fetal heart rate tracing looks bad, someone comes in with no fetal movement, or a Mom that is 28 weeks is in active labor.

I had great mentors in L&D. They tried to show me the way. They showed me how to start an IV, administer Pitocin or MagSulfate, push with a patient and monitor the baby's heart rate. They were there when I had to scrub for a crash c-section. The doctor initiated me during my first month on the job. The doctor threw an Alice clamp across the room because I handed him the wrong instrument. I handed him a T clamp and he started throwing instruments across the room. I stepped down, and the circulating nurse stepped in. She was there to catch me when I stumbled.


Working in L&D is a high pressure job. It's great when the board is empty and you can hang out with the nurses and doctors at the nursing station. It's absolutely a miracle each and every time a baby is born and you are there to experience it and have had some small part in that special moment. When it is busy, well, anything goes. All hell breaks loose. It's not all happy with cute Gerber babies being born. There are tragedies-stillborn, babies born with multiple deformities, and mothers that die in childbirth.

The labor and delivery nurses and doctors are there for you. In good times and bad times. They hold your hand, they shout encouragement, and they want the very best outcome for you and your baby. They give everything they got.

And so, I guess that is why L&D nurses and doctors are so special. You have to work well together. You have to have each other's back. You have to be there for each other. The normal deliveries are so rewarding, but it is the more complicated pregnancies and deliveries that makes you come together. When one nurse is weak, a stronger nurse steps in.

Twenty years ago, you could smoke in the hospital. In the nurses lounge you could grab a quick smoke and then run out and adjust your patient's IV Pitocin.  Times have changed. That night, at Meier's Tavern, they handed out packs of candy cigarettes. It reminded us of the old days when you could smoke. But, the pack of candy cigarettes serves as a reminder that although things do indeed change, there are things that don't change such as the bond of nurses and doctors. Good people who want to do the best job taking care of you.

I have been so fortunate to work with such a wonderful team. They had a huge impact on my life-they taught me about teamwork, camaraderie, and compassion.

I am so very proud to be a nurse. It's been a very rewarding profession. And, I am the person I am today because I chose to become a nurse. My patients and coworkers changed me-for the better!

All I have to do is look at this pack of cigarettes and a smile comes over my face.



Monday, March 7, 2016

Sometimes you just need to hit alt/control/delete and power yourself down. Then, after a bit of down time, power yourself back up and move forward.

I suffered a major disappointment last week. I went for my dental appointment at UIC. I had told Dr. Reisberg that my implant hurt for a number of days after my last appointment. I told him I felt something crack or snap when he pressed on the screw. He checked the area and said the gum was nice and pink. He then tapped on the right implant and there was no pain. Then he tapped on my left implant and I jumped in pain. This is the side of the implant where my cleft palate runs through my gum to the roof of my mouth.

To go back, I had an oral surgeon use cadaver bone for my first surgery. When sutures were removed it was apparent that a hole was created in my sinus because of this surgery. I developed multiple infections and sought another doctor to help me.

I found UIC Craniofacial center and underwent surgery where they took bone from my hip to build my palate. I had to wait a good year for the bone to grow and get strong. Then last year, I underwent another surgery for them to insert the dental implants into the bone. Both surgeries involved inpatient hospitalization.

So, this has been over  two years in the making. I was so looking forward to getting my two dental implants so I could have two front teeth. I was filled with anticipation and hope. But then, with a simple tap on the dental screw it all changed. Dr. Reisberg said he was so sorry but the pain was not a good sign. He tried to unscrew the implant just a little to see if I could tolerate it, and I jumped off the table. So, in a very caring way, he just said that the implant by my cleft was not good. I almost burst into tears but I kept it together. He kept measuring and looking at the dental screws and was talking out loud of some possibilities. He did a dental impression and said he was going to have to think about Plan B.

He told me he was going to add about five more appointments to the five I already had scheduled. And so, I got up from the exam table and gave him a big hug. He told me the next appointment he would go in, numb me up, and take the implant out.

I walked to the parking garage and got into my car. I put the key in the ignition and then the tears started flowing. I was so deeply hurt. I had waited years for my dental implants and I thought it was all going to work out. I was so optimistic. So looking forward to having this all be behind me. I thought for sure the bone would be strong and could withstand the implant. But, I guess God has a different plan.

As I was driving home I could not help but think of the people undergoing chemotherapy and being told they are in remission. Only to be told, the cancer is back. This really put things in perspective. I mean, come on Pat, your dental implant by your cleft palate did not take and they will have to figure out what Plan B will be.

I got home and did FaceTime with Colleen. The minute i saw her face, i just cried and cried. After I hung up the phone, I texted my family and friends about the failed implant. I then powered down my phone and my IPad. For two days, I just laid low. I was in mourning and just needed some down time.

I went to get the mail and saw a bag by our front door. I opened it up and my tears changed to laughter and a huge smile came over my face.  It was the perfect gift. My lifelong friend, Pauline, left it for me. She knew this was exactly what I needed. The dammit doll. I would love to whack it against the wall but instead I just said dammit, repeatedly. The doll was so cute, I just could not destroy it.





So, today is Monday, I powered back on my phone and IPad. My little pity party is over. I'm gonna just go with the flow and appreciate all the things I have. Most importantly, I have family and friends that support me. And, with that in my back pocket, I can face anything. Now, let's see what Plan B is!

Wednesday, March 2, 2016

Simon Says: Welcome to Simon Says

Simon Says: Welcome to Simon Says: Hello! Welcome to Simon Says the blog of Patricia Simon. You are at the beginning of my new life as a blogger!  It's important to me t...

Simon Says: My Story

Simon Says: My Story: My Name is Patricia Simon and I was born with a cleft lip and palate. My first surgery was at 6 months of age. I had speech therapy wh...

Simon Says: There are unfulfilled needs of adult patients who ...

Simon Says: There are unfulfilled needs of adult patients who ...: Adult patients continue to have a wide range of problems relating to their cleft. For some patients who have had a cleft lip and/or pal...

Simon Says: We all have a story to tell so make it a good one!...

Simon Says: We all have a story to tell so make it a good one!...: I've started this blog so that you can learn about me and my experiences. I was born with a cleft lip and palate. However, that scar doe...

Simon Says: Everyone needs a little bling in their life!

Simon Says: Everyone needs a little bling in their life!: I went Tuesday for my appointment to begin the process of getting my dental implants. Dr. Reisberg had told me in advance that this was go...

Simon Says: It's hard to do something you've never done bef...

Simon Says: It's hard to do something you've never done bef...: I am trying my hand at writing a Children's book and it's been rather hard. My first draft was way too long and had too many positiv...

Simon Says: Sometimes the worst brings out the best in people....

Simon Says: Sometimes the worst brings out the best in people....: When I went for my bi annual dental cleaning two years ago, I never knew that experience would change my life. X-rays taken during the den...

Simon Says: Don't be afraid to speak up

Simon Says: Don't be afraid to speak up: I had so much anger inside of me because I felt the oral surgeon in Palatine that I went to should have known better. He should have said he...

Simon Says: It's hard to do so something you've never done bef...

Simon Says: It's hard to do so something you've never done bef...: I am trying my hand at writing a Children's book and it's been rather hard. My first draft was way too long and had too many positiv...

Don't be afraid to speak up

I had so much anger inside of me because I felt the oral surgeon in Palatine that I went to should have known better. He should have said he could not treat me because he did not have the experience. And, he should have helped me find the right doctor who could.

I went through so much unnecessary pain, time, expense and suffering because I put my faith and health in the hands of someone I thought could medically treat me. Even though he never treated a cleft palate patient, he certainly knew how to perform oral surgery and treat an infection. So, I thought. He had a large successful practice and came with good recommendations. So, I thought I made the right decision. Boy, was I wrong.

After I went to the UIC, I found out that he should never have instructed me to wear the "flipper" after surgery. Evidently you don't want to wear any type of "flipper" or device that presses on the palate. The "flipper" was also a conduit for infection. That's why I got the yeast infection in my mouth. It was from wearing the mouthpiece. I also found out that cadaver bone is not the way to go. If you need to use bone-it should be taken from your hip because you are less likely to reject your own bone. But probably the most important thing I found out was that the oral surgeon I saw in Palatine was actually good friends with one of the dentists at the UIC Craniofacial center. I was incensed when I found this out. Why wouldn't the oral surgeon just refer me to his friend at the UIC Craniofacial center? When I asked him if he had ever treated a cleft palate patient he said "no" but reassured me that he could do the job. This kept me up at night and my anger towards him grew and grew. Now I am not an angry person. I like to think of myself as happy go lucky and see my heart with a smile. But, anger overtook me. It changed me. I became bitter. I would lay in bed at night and think why wouldn't he just refer me to his friend that specializes in the care of cleft palate patient's. My feeling is that he did this out of greed. Greed. My dental insurance did not cover a penny of his services. Anesthesia was also not covered. So, I paid $6,800 to go through hell! I think he also wanted to say that he "treated" a cleft palate patient.

So, what did I do? I could not live like this. I hated being angry at him. I hated walking around being mad. So, I called up his office and asked to speak with him. The receptionist asked what it was about and I told her it was "personal." He called me back within 10 minutes. I started the conversation by sating, "Doctor I know you will do the right thing". I then said the following. " I'm asking three things from you. One, if a patient comes in and you have never treated their particular medical condition, you have to refuse to treat them and help them find the appropriate doctor. I am going to send you business cards of Dr. Cohen and Dr. Reisberg. If a cleft palate patient comes into your office you have to refer them to these doctors. Second, if a patient wants their medical records you have to give it to them. You can't have your front desk employees refuse to give the patient their records. They said they can only send it to another doctor but that is not correct. I own those medical records and they are mine. He responded by saying that he would send me my records if I could read his "chicken scratch". I said that I'm a nurse and know how to read doctors notes. And, 3rd, I want my money back. I want you to send me the $6,800 that I paid you. Basically, I am having everything redone. I did not ask to be reimbursed for the countless antibiotic prescriptions, CT scan, ENT/plastic surgery consult or infectious disease consults. I just wanted the $6,800 back. But, really the most important thing I wanted was to prevent someone-maybe one person-from going what I went through. I wanted him to promise me to refer patients to appropriate doctors that could treat them. I was very calm when I talked to him and I ended the conversation by saying, "please give this your consideration. I believe you took it upon yourself to treat me because you thought you could. But, you and I both know that this was not the case. Give me a call when you have reviewed my 3 requests".
About two hours later I received a call back and he said he would do all three of my requests. Within two days I had my money back and received my medical records. I, in turn, mailed him business cards for Dr. Cohen and Dr. Reisberg as well as information on Face The Future Foundation which supports the UIC Craniofacial center.

And, after I hung up the phone something instantly happened. The anger that I had disappeared. I felt peace. I no longer thought about this terrible oral surgeon. I hoped that this changed him as well. I hope and believe that he will do the right thing when a cleft palate patient comes into his office for dental care. I believe he will refer these patients out and not take them on as patients.

Now, I could have hired a lawyer and tried to sue him for his incompetence. But, I did not want to do this. I had already gone through so much and that is the last thing I wanted to have to go through.

This story could have a very different ending. Instead of moving on and learning from this experience, I could have walked around with anger and a heavy heart. Anger could be with me today. But, I spoke up. I said my peace. And, I tried to be an advocate for other people that may walk in my shoes.

If you would have told me that I would call up a doctor and call them on bad medical care and make some requests that could possibly impact future patients I would not have believed it. But, I'm getting older. And, something happens as the years go by. You become more confident in saying what is right and what is wrong.

My girlfriend who recommended the oral surgeon apologized to me twice saying both times that she was so sorry that she recommended this doctor and that I had to go through so much. I said, " it's the best thing that has happened to me. It changed my life for the better. It helped define who I am and it's made me a stronger person."

This was just the beginning of my transformation.

In the next few blogs I will tell you what doors were opened for me. They say one door closes and another door opens. But, you have to be willing to open that door.

Sometimes the worst brings out the best in people. It's all in how you look at things. Is your glass half empty or half full?

When I went for my bi annual dental cleaning two years ago, I never knew that experience would change my life.

X-rays taken during the dental cleaning showed I had an abscess by my front capped tooth. I had no idea-no symptoms. My dentist recommended that I see a colleague right down the street that specializes in oral surgery. I made the appointment and went to see him for a consult. He took more X-rays and confirmed I had an abscess and recommended surgery. But, he was clearly nervous. He kept tapping his foot while telling me how many problems I had going on-infection, bone loss, need for root canal, antibiotics and potential loss of my two front teeth. I asked him if he ever treated a patient with a cleft palate and he said "no". I paid the $275 dollar consultation fee and left. This oral surgeon clearly was overwhelmed and there was no way I was going to have him do surgery. The foot tapping really did it for me.

I then called my dentist and he gave me the name of another dentist who performs root canal surgery. I saw the dentist and underwent root canal surgery, however, the dentist could not get to the deep root to entirely clean up the infection.. This dentist also had never treated a patient with a cleft palate.  I was put on antibiotics and told to find an oral surgeon. Even though I had dental insurance, it really didn't cover any of the procedure. I believe that root canal was about $750 out of pocket.

I left that dentist not knowing what to do next. I was on antibiotics due to the infection and knowing I had to find an oral surgeon who could help me-and quickly. You don't want to fool around with an infection in your mouth. But, I had no where to go. My dentist recommended the oral surgeon-foot tapper-who had no clue how to treat me and I just went to the dentist he recommended for the root canal -which was unsuccessful.

I briefly tried searching the internet for anyone that treats adult cleft palate patients with dental needs. I kept searching but could not find anyone.

I called one of my best friends and asked if she knew of a good oral surgeon. She did some investigation and called me back with the name of a well known oral surgeon. I made the appointment and went to see him for a consult. His practice was fairly large with multiple oral surgeons and assistants sharing the practice.

This oral surgeon did more X-rays and a more thorough dental exam. He recommended further surgery which would involve using cadaver bone to build up my palate and possible removal of my 2 front teeth to get to the root of the infection. I asked him if he ever took care of a cleft palate patient and he said "no". But, he reassured me that he could do the procedure. I had a decision to make. Do I go with this dentist? He seemed to know what he was doing and he came with good references. I really didn't have a lot of time to keep searching for an oral surgeon since I still had the infection in my mouth and was on antibiotics.

After talking with Colleen, who was with me for every appointment and procedure, I decided to go with this surgeon. I made the appointment and they required that I pay for the surgery upfront. I believe it was $4, 750. He said if I wanted anesthesia during the procedure that it would be an additional $1,800. What? That's crazy. He said I would pay the anesthesia company directly. I told him I would think about it. My choice was to be given a pill of Valium while in the office prior to the procedure and then be given injections of novacaine throughout my mouth. The procedure was to last a few hours. After laying awake at night, I decided to spend the $1,800 dollars and go with IV sedation.

The day came and I went to Palatine to have my oral surgery. It was mostly a blur after I took the Valium pre-op. At the end of the surgery, I was told they had to remove my 2 front teeth. I was put on additional antibiotics and sent home.

The next day I called the office and talked to the surgeon and said I had a horrible stench coming from my mouth. He told me to wait a day or two and see if it was getting worse. The next day I called him again and asked to be seen. The stench was horrible. He ended putting me on an additional antibiotic and sent me on my way.

The additional antibiotic seemed to do the trick. I went back in @2 weeks and had the sutures removed. The surgeon removed the sutures and also fitted me with a "flipper" to wear. The "flipper" is like a retainer with 2 fake front teeth.  You have to remove it to eat. So, he removed the sutures, gave me the "flipper" to wear and I was to continue with the antibiotics.

I got home from the appointment and was in the kitchen drinking a glass of water. I took a drink of water and the water shot out of my nose and a sucking blow hole noise came out of me. Oh my God. What the hell was that??? I immediately called the oral surgeon. He told me to come in the next morning to see me. I knew the water coming out of my nose and the sucking noise was not a good thing!

The next day I saw him and he explained the surgery probably created a small hole in my sinus. He said it was, "worrisome".  He told me that he thought it would close on its own over time. He told me to keep taking the antibiotics and to wear the "flipper".

There comes a time in your life when you know something is not right. You listen to your body and your common sense. This was one of those times. And, I listened and heard the message.

I immediately called my primary care physician and explained the situation. She gave me the name of a ENT doctor. I saw the ENT doctor. He did his exam and I looked over at him. He was looking up at the ceiling with a dreadful look on his face. I said, "what's wrong?". He said that he could not treat me because it was out of his scope. He gave me the name of a plastic surgeon and quickly sent me on my way. I got into my car and cried. The look on this doctors face was one of horror. I was so mad at him. Why didn't he put on his doctor mask face? A patient should not look at the doctor and see horror in his face. Shame on him. How would he like it if he went to a doctor and looked over at his face only to see despair.

So, I then made an appointment with this plastic surgeon that he recommended. He examined me and said he could do surgery to help with the sinus and help with improving my breathing. I asked him if he ever treated a patient with a cleft lip/palate. And, he said, "no." He was all set to schedule me for surgery. I told him that I would call him if I decided to go with him.

Frustrated, disappointed and scared. No one seemed to know how to treat an adult cleft palate patient. What was I to do?

I went back to the Internet and searched and searched for answers and help.

In the mean time, I had to go back to the oral surgeon because I developed a yeast infection in my mouth. I was put on yet another antibiotic. The inside of my mouth was all raw and red.

I made an appointment to see my infectious disease doctor-Dr. Leonard Kaplan of Northshore Health Care. I had previously been treated by him due to getting 4 bouts of C. Diff from being on antibiotics. When I saw him I went over all the antibiotics I had been on and what doctors I had seen. He asked me if any doctor ever ordered a CT scan of my face. I said "no". He ordered the CT scan. He called my oral surgeon and adjusted the antibiotics I was on. This doctor definitely knew his stuff. Thank God I had Dr. Kaplan in my corner.

I then went back to the internet and continued to search for cleft palate doctors. I did find some but most of them treated children and not adults. I finally found the University of Illinois Craniofacial Clinic. I found the Golden Ticket. I won the lottery!!

I had an appointment at the University of a Illinois Craniofacial clinic. I brought a copy of my CT results as well as a list of doctors I had seen and medications I was on. The appointment lasted a few hours. I saw Dr. Cohen-the plastic surgeon, and had my hearing and speech tested. I had more X-rays and bone density of my mouth performed. Dr. Cohen answered all of my questions. He put my mind at ease. I finally found a doctor and team of doctors and nurses that knew what they were doing.

That was 2 years ago. And, I'm still going to UIC for care. I'm in the process of getting my two front teeth dental implants. It's been a long journey.

Dr Cohen performed his first surgery two years ago -took bone from my hip to build my palate. The second surgery was in October 2015 where they did a lip revision, and made it so that I could breathe out of my nose. I've always been a mouth breather because I could never breathe in and out of my nose due to a deviated septum. Dr Reisberg also inserted the rods for the dental implants.

The team at the UI Craniofacial center are angels. They treat all patients with respect and provide the best care possible.

Having an abscess and trying to find the appropriate doctor to treat me really changed my life.

In the next few blogs you will see how this experience changed me-for the better.