Sunday, May 29, 2016

Living with NF1 and NF 2 : Catie's Story

Catie and me became friends on Facebook a year before we actually met in person. We were put in contact by our mutual friend, Candice. In February of 2015, we  met at the first St. Petersburg Cupid's Undie Run. When Catie saw me, she ran towards me and gave me the warmest and biggest hug ever. I felt as if she and I had been life long friends. Catie was all smiles and excited to have finally met me, as was I. In the two years of knowing Catie I have learned she is bubbly, sweet, loving and caring. Despite being in pain due to having both NF1 and NF2 she has chosen to enjoy and love her life.

Catie and her mom, photo from Catie's Facebook
Catie said that she has had well over five dozens surgeries and will soon have another to remove some tumors that are causing her discomfort and pain. In October of 2011, Catie and her mom where featured in a segment of  HealthyState in which she spoke in vivid detail how she  manages living a happy life despite the constant reminder that she is living with an incurable disease. 

 Catie's first surgery was when she was nine years old to remove a fibroma on her back. Since then she has had tumors removed all over her body both internally and externally. I can attest that surgery is not easy on either your body or your mental state; it takes one strong individual to be able to endure 65 surgeries and counting, and still be  optimistic about life.

I find Catie inspirational because she simply lives her life as she wishes. She welcomes love into her life and grabs onto it with all her strength. It is not always easy  getting out of bed each morning  because sometimes she is in tremendous pain, still, she gets out of bed and goes on with her day.  

" I'm just trying to make life good every day." - Catie

Monday, May 16, 2016

An NF Solider


In the Summer of 2014, I had the great pleasure of meeting Kim, a seemingly average woman living with NF, but thee is nothing ordinary about this woman.  Kim is a retired  U.S. Military Veteran.
Did I blow your mind?
You may ask yourself ,how a woman living with a debilitating and progressive disease served her country for 20 years? The answer is astonishingly simple: sheer determination  For 20 years Kim devoted her life to the Air Force, working in supply and training.
Kim and brothers, taken from her Facebook
To date, Kim has not had the need to have surgeries to treat her condition. She is a vibrate, sweet and tenacious individual. 
When I asked her if I could write a post about her because I found her inspirational her response was, " That's awesome but I really don't consider myself a super hero...just trying to do my best." 
Kim does her best to not allow NF to win, she says that she may not have many tumors but does have, ".. the things that are not visible," of the disease.
" It takes me a little longer to get things, some words are harder for me to pronounce, I take medicine to help me stay focused." 
Her hobby of taking pictures has turned into a very successful business with quite a following. Kim's keen eye for photography can be seen in not only family portraits but also in  community events, including this years Cupid's Undie Run in St. Petersburg.   
I find Kim an inspiration because she just brings so much  joy and simplicity to life. In the two years I have known Kim she has made me realize that life is not a race and that I do not need to prove  others wrong. I simply need to live for me.


Friday, May 13, 2016

NF2: A True Butterfly, 1 in 40,000


photo by Kelly Coulson Photography
Throughout my life I have heard from many that I am such an inspiration to others because I have not let NF dictate my life. However, contrary to what others see there was a time in my life that I did allow NF to control me. I was constantly depressed and angry with life despite of what others saw. Then one day, in 2011, during one of my bouts of depression I read a newspaper article about Candice, an amazing, strong and true inspirational woman that, like myself, was born with NF.
After reading Candice's story, I felt a sense of connection that I have never felt before. Despite my mother and brother having NF, I did not know anyone else that like myself needed to have multiple surgeries to repair the damage that NF has caused.

Candice was born with NF2, and in the course of 46 years has had 28 surgeries. Now I am no mathematician, but that is roughly one surgery every two years. Her face bares the scares left behind from a lifelong  battle with NF2. The surgeries were done to remove various tumors that have left her with an unconventional face. These scars are not just physical but emotional too; each one telling a story of perseverance. When I first saw a picture of Candice I was automatically filled with a sense of sadness because  I wanted what she had, I wanted to love myself.She spoke so eloquently about her life and how she chooses to live it. After reading the article and befriending her on Facebook, I realized I had just learned the biggest life lesson ever, I had to stop allowing NF to dictated my life!

I find Candice an inspirational woman because she is truly remarkable! Candice does not hide her beauty nor does she stay silent. She participates in triathlons and NF events, she is an avid volunteer in her community and best of all she's in the medical filed! She also shares her story of strength and survival in her Facebook page Butterfly Challenge, a Site for Inspiration.  To me, Candice is a true butterfly because like the butterfly she has gone through metamorphosis and become a woman of not only beauty but also courage.
  

picture taken from Candice's Facebook account




" To those who have this disease, staying at home or being sheltered from all the bad things people say, it doesn't help. I've never walked into a public place ever-one day, one hour, one minute-where there wasn't a reaction to me entering the room. Fear, curiosity, what happened to her, disgust from some people. Strangers come up all the time at the grocery store, movie, in the elevator alone, I get questions. But I can use that experience to teach people about this disease, or at least teach them manners." - Candice P.
( from: Tampa Bay Tribune, 02-26-2006-Joe Henderson)