Challenges of driving with NF: A Rainy Day Story

On this day, the last day of August, I will share with you a rainy day story, since it has been not stopped raining since 5:00 am, and it does not look like it will stop raining anytime soon.

On rainy days, I like to stay inside the house, with a nice cup of tea, wrapped in a blanket, and entertaining myself with various sedentary activities like reading a book. However, sometimes I feel adventurous, and I go outside in the rain and get soaking wet as I wait for the bus to take me to my final destination: the University of South Florida.  You see, I am a 29-year-old woman living in Florida that does not drive.  You may ask yourself how that is possible, but it is not as though I do not want to drive, or that I do not know how to drive. I know how to drive, and I have driven.  However, I am not very confident behind the wheel.

When I took Drivers Ed. in high school, I had some difficulties and was not able to drive much and never took the final for my license. I did continue to drive with my dad, but then he left, and life got more complicated. I drove a few times with my brothers, but that never worked out because my confidence level never improved. My best friend drove with me a few times, and she was great, but she moved, and I just stopped driving altogether.

It seems that there has always been something preventing me from driving, or so I thought. The only person that has been stopping me from driving has been me! I know that now, I need and want to drive because it is important for my well being.

Thankfully, Joe has gotten me to drive and has helped me gain confidence in driving. He has also talked me through one of my scariest panic attacks ever over me getting behind the wheel. He has been motivating me to drive because he knows it is important.  Unfortunately, we have had some set backs because the car has not been working very well and my mom does not want me to drive her car unless it is in better conditions.

photo by, Hung Trug, taken from Facebook

I have NF, part 2

It has been four years since I started my blog of battling and surviving NF. My first blog, I have NF,  was about NF affecting my life in all areas, and how I have overcome it. Without knowing it, I have been giving myself therapy by writing my struggles and short comings.

When I first began writing, I was still in college and struggling to find meaning and motivation for the career path I had chosen. I was in a very unhealthy and self-destructive relationship, and I was still trying to make sense of my father's infidelity which lead to my parent's divorce. In 2012 I was emotionally lost and burnt out. I was trying to find meaning to life.

Now, four years later, I can happily and honestly say that I am no longer the same person I was in 2012. I graduated college and shortly after began working in the Crisis Center of Tampa Bay.  I finally ended the emotionally draining and damaging relationship with the person I thought I loved. By putting an end to that relationship, a great man was put in my life, a man that has truly shown me what love is. And although I have not fully healed from my father's infidelity, I am in a better place.

This year I turned 29. It brings me to tears to recall the young girl I was before I began writing because I do not like the person I was and who potentially could have become. But I have to own up to those emotions and experiences because I would not be the person I am today if it were not for my struggles and heart breaks.

So, I am 29 years old and live with NF, so what? I will never, not have NF, so why just focus this blog on NF? I am so much more than neurofibromatosis.  I have said this so many times before but have not shown it on my posts. I need to practice what I preach. So, you get to know Angela as a whole not just NF Angela.

Let's end with a few updates:

I did not write a June post because I was in Colombia visiting family and reconnecting with my roots. I simply did not have the mindset to write a post.

I got a promotion at my job. I am now a Lead Intervention Specialist! With that being said, I also got MVP for the month of June!

Living with NF1 and NF 2 : Catie's Story

Catie and I 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 were 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

An NF Solider

In the Summer of 2014, I had the great pleasure of meeting Kim, a seemingly average woman living with NF, but there 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 needed 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 year's 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.

To view Kim's work: Kimberly Norman Photography, LLC

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 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 a truly 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 bears the scars 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 field! 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 a metamorphosis and become a woman of not only beauty but also courage.
 

picture was 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)

Schwannomatosis and My Friend Kathy

My friend Kathy is an inspiring fashion designer with hopes and dreams of one day being able to make life easier for individuals with physical limitations. Kathy has chosen this career path because she knows first hand how difficult it can be to perform an everyday task due to a physical limitation. Unlike me, Kathy was not diagnosed with  NF until she was in her late teens; nonetheless, she has been victorious through over a dozen surgeries and painstaking physical rehabilitation.

Through it, all, Schwannonatosis, has left Kathy paralyzed. She would like your help with obtaining a safe wheelchair accessible vehicle. You see, Kathy goes to and from the art studio in public transportation; I know how frustrating it is to have to count on public transportation and how unreliable it could be. Living with pain is already an everyday battle, being able to travel in a wheelchair accessible car makes a living with  NF a lot more bearable.

Please help my friend Kathy accomplish her goal as a fashion designer for  her to make life easier for those with physical limitations.

Check out Kathy's Go Fund Me page and learn more about this amazing woman!!

A Face for NF

 Created with Imgflip by Angela.
 FYI, Joe made me watch this stupid show.

Joe and I began talking because he remembered my face from high school. He saw me once in the lunchroom at King High School, and that is all it took. Ten years later he saw me again in our Classical Theory class in USF. Joe says that I have a memorable face because everything about me is pretty, but I find it hard to believe because I have had much more encounters of that sort that lead to nothing more than awkwardness.

A few years before meeting Joe, I was walking into yet another class at USF when one of my brother's childhood friends saw me standing in the middle of an auditorium filled with students. He walked to me and said, " Hi, do you remember me? Juan? You're Andres' little sister." It took me a minute to recognize his face because last time I saw him, I was still in grade school.

Unfortunately, not every experience on behalf of my appearance has been as positive. In fact, Joe and Juan are pretty much the only encounters that have been positive. On more than once occasion random people have approached me to say something along the lines of; hey, don't I know you from somewhere? You look so familiar. Didn't we take a class together? Giving the person some benefit of the doubt I would inquire about their major or electives. By the end of the two-minute conversation, the only thing we had in common was that we attended the same university. More often than not the person would just stare at me for a couple of seconds as if they were still trying to figure it out and walk away

You may think that I am looking too much into situations where people approach when they are in fact genuine, but I assure that I am not. Yes, people have approached me with the same curiosity that has been correct, but those are too far in between. Besides, in those instances, the person tells me the class we took together or the name of the professor.

It's not that people cannot approach me in such a matter, it's that after almost 29 years I have become suspicious of people that randomly approach me to say hi. What is it? Do I just look so familiar that you must talk to me? Whatever the case maybe, positive or not I will all ways look at the person that approaches me with doubt in the back of my mind.