Monday, October 24, 2016

Cupid's Undie Run: Angie's Awesome Angels


Let's do this again. Cupid's Undie Run St. Petersburg is back! You can join my Triple A Team where fun is guaranteed! If you are a little more reserved, and rather not see me or anyone else in their fundies, you can make a donation that will go towards research to find a cure for NF. So what do you say, will you be part of the third annual Cupid's Undie Run? Last year my team raised $335; I think we can do much better than that!! 

Cupids Undie Run 2015

Cupid's Undie Run 2016

Wednesday, October 5, 2016

N.F. Stands for Not a Freak

 At times I feel as if am caged in with a dozen people surrounding me with their wide eyes and pointing fingers. Sometimes I feel like I am wearing a big neon sign that reads, "Laughing and pointing are welcomed." It is as if people feel entitled to glare at my appearance for the simple fact that I look different.  I am not a freak. I am a human being that happens to live with NF.

Scream Queens,Warts and All
picture taken from tvequals.com


I am going to jump on the bandwagon here and talk about my dislike towards the ill informed episode that recently aired on Scream Queens. The episode titled, Warts and All depicted a charter,Tyler, that was living with a severe case of Neurofibromatosis type 1. The show, which describes itself as being horror-comedy, described Tyler as a monster that used to be hot before his body was invaded with fibromas. 
The show called the benign tumors bubble-like warts. One article even described the fibormas as pimple-like tumor. I can assure you that my fibromas are not pimple-like whatsoever! In the first place, pimples develop on the surface of the skin. Secondly, pimples do go away, mostly by popping them. Guess what? My fibramos do not pop and unless surgically removed will not go away. In fact they get irritated and can bleed if I mess with them too much. 
I tried to force myself to watch the episode but I could not bare it. What I saw was disgusting and far from funny. 
How is it possible that a show like Scream Queens,with so many fans, is allowed to make light of a real disease? I find it very offensive that the show had the audacity to claim that Tyler could be cured by using a laser that could potentially remove all the tumors making him hot again. At the end of the episode Tyler dies after the treatment failed.Which is not surprising as there is no cure to date for NF. The show could not have ended any other way because then the fans of the show would actually believe that with a very expensive laser my mom would no longer have the fibromas that cover a good part of her body. 
The show also failed to mention that NF affects everyone differently. In my house alone, NF affected my mother, brother and me in very different ways.I know that the show is not suppose to be educational but pure entertainment. It is too bad that the opportunity was not taken to educate their audience on a disease that could very well lead to death. I just hope that the people that saw the show were curious enough to do their own investigation about NF because that way they would realize just how wrong their weekly entertainment was. 
I am not a monster.I am not a freak. Sadly, there are people that think I am. Thankfully, those people are insignificant to me.  
 

Sunday, September 25, 2016

Surving NF:Suidcial Thoughts (part 2)


Let's talk about suicide, because it can no longer remain a taboo subject. It is highly important that we are all able to talk about suicide without feeling odd or uncomfortable.You never know when you can save someones life by just asking, "Are you having suicidal thoughts?" I wish someone would have asked me that question when I was 18 years old, because I truly needed to feel validated and understood. Last November, I shared with you one of my most difficult moments ever. I shared with you my suicidal thoughts and my near attempt.

Even though I never cut my wrist that night, I did not stop having thoughts of self-harm for the longest time. In fact, I kept spiraling further and further into depression, I lost weight, strength and motivation in life. Things got a lot more difficult after I graduated high school because I found out that my father had been having an affair with a family friend. After my father left, my depression only got worse. I felt completely lost and alone.

Despite the countless nights of crying myself to sleep and fighting for every breath I took, I never attempted to hurt myself again. I forced myself to get up and out of bed every morning, to go to class and to work. I even forced a smile or two. I did whatever I had to do to keep myself from hurting both physically and emotionally.

 It has been ten years since I attempted to hurt myself and lot has happened during that time. I have graduated college, fallen in love and found work as a crisis counselor. I speak to men and woman from all walks of life, young and old, because depression and suicide do not discriminate. I have been lucky enough to have an extraordinary support system that have carried me through my depression and have never stopped. Unfortunately, not everyone counts on everyday support from home. Thankfully, there is help and support. If you or anyone you know is going through a difficult time, including having thoughts of suicide, please call the National Suicide Prevention Line.



"Try Everything"


Oh, oh, oh, oh, oh
Oh, oh, oh, oh, oh
Oh, oh, oh, oh, oh
Oh, oh, oh, oh, oh

I messed up tonight, I lost another fight
I still mess up but I'll just start again
I keep falling down, I keep on hitting the ground
I always get up now to see what's next

Birds don't just fly, they fall down and get up
Nobody learns without getting it wrong

I won't give up, no I won't give in
'Til I reach the end and then I'll start again
No I won't leave, I wanna try everything
I wanna try even though I could fail
I won't give up, no I won't give in
'Til I reach the end and then I'll start again
No, I won't leave, I wanna try everything
I wanna try even though I could fail

Oh, oh, oh, oh, oh
Try everything
Oh, oh, oh, oh, oh
Try everything
Oh, oh, oh, oh, oh
Try everything
Oh, oh, oh, oh, oh

Look how far you've come, you filled your heart with love
Baby you've done enough, take a deep breath
Don't beat yourself up, don't need to run so fast
Sometimes we come last, but we did our best

I won't give up, no I won't give in
'Til I reach the end and then I'll start again
No I won't leave, I wanna try everything
I wanna try even though I could fail
I won't give up, no I won't give in
'Til I reach the end and then I'll start again
No I won't leave, I wanna try everything
I wanna try even though I could fail

I'll keep on making those new mistakes
I'll keep on making them every day
Those new mistakes

Oh, oh, oh, oh, oh
Try everything
Oh, oh, oh, oh, oh
Try everything
Oh, oh, oh, oh, oh
Try everything
Oh, oh, oh, oh, oh

Try everything



Wednesday, August 31, 2016

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 stop raining since 5:00 am, and it does not look like it will stop raining any time 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 all together.

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

Sunday, July 31, 2016

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 parents 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 ending 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 by 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 nuerofibromatosis.  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!

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)


Saturday, April 30, 2016

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 every day 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 living with  NF a lot more bearable.

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

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




Friday, April 1, 2016

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 many 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 being in fact genuine, but I assure that I am not. Yes, people have approached me with the same curiosity that have 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.

Saturday, March 19, 2016

To My NF Peeps...

I may not know you personally; I may not know your specific pains or how NF has not only affected you but also your loved ones.
Our paths may never physically cross, but we will forever have a bond due to NF. This disorder that causes havoc in its host with no hesitation has brought us together.
I know I have said this before, and I will continue saying it, I never imagined that my stories would reach so many lives.
As of late, I have received messages via Facebook from mothers with children that have NF that have found new strength by reading my posts. They have asked me questions about my life and my struggles. They have asked about surgeries and if their child should have a particular procedure done or just let life take its course. I answer their questions with honesty and hope. I simply say how NF has affected my life thus far and how surgery has improved my overall well being. I tell them that we are all different and that I cannot give them all the answers to their questions because honestly no one can. Regardless, I am still more than happy to answer questions and to provide my life experiences as a testament of how NF has affected me. 
Every single one of us is an extraordinary human! Whether our bodies have dozens even hundreds of fibromas or just the cafe a latte markings;whether NF has caused our bodies to fail us or if we look ordinary we are remarkable. I say this now more than ever because I have been given the privilege of meeting others that have NF and to me you are all, like Children's Tumor Foundation says, CHAMPIONS AND HERO'S.
I dedicate this blog post to all of you!



Friday, February 26, 2016

Getting NAKED for Charity ( Party 2)

My crazy cousins video about her experience at this year's Cupid's Undie Run!! Worth a watch!!!


 

Wednesday, February 24, 2016

Cupid's Undie Run ( Part 2)


photo by Kimberly Norman
The second annual St.Petersburg Cupid's Undie Run was a total success! St. Pete raised $75,400! Can I get a "Whoop Whoop!" 
Once again the fabulous Katherine was the ringmaster for Cupid's Undie Run. This event would not have been the huge success that it was, if it were not for this tenacious wife and mother of three. For Katherine NF hits close to home. Her middle child was diagnosed when she was an infant. Like Katherine, many of the participants are affected by NF. 
Some are directly affected like myself and my teammate Catie, while other are indirectly affected like the rest of my teammates.
 
photo by Kimberly Norman

 I would like to take the the time now to thank my teammates for joining Angela's Cherubs. You guys cannot begin to imagine how happy and loved I felt on Saturday. I know you could have done anything else, but you chose me! To Chantal and Alexa, my co-works and friends; my cousins, Cat and Carolina; Catie, my teammate; and William, thank you for spending time with my crazy-hyper self!
To my loving and supportive boyfriend, you are my lucky charm, and I love you endlessly! Finally, thank you to Liz and my mom, I know you were not able to make it to the run, but your spirits were with me! I know next year Angela's Cherubs will be attending, maybe even with new faces. 
photo by Joseph Meier


Sunday, February 7, 2016

Getting NAKED for Charity!




My cousin Caro and me talking about Cupid's Undie Run. Hope you enjoy watching our video as much as we enjoyed making it!!


Friday, February 5, 2016

Cupid's Undie Run (Part 1)

Next Saturday the 13th of February I will be participating in the second annual St. Petersburg Cupid's Undie Run. I will be running in my undiess for a worthy cause. The donations will go towards research to help find a cure for NF.
Now to some being in there teeny-tines is no big deal. But when your body is being taking over by fibromas it is very different. As I have shared in Fibromas and Showing Skin it has become a challenge for me to feel comfortable in a bathing suit. I was not always so self -conscious but unfortunately the more fibromas I see the less I want to show off my body. Of course, Joe tells me that I am beautiful and that I don't have more fibromas. Maybe he is right and I do not have more fibromas and it is all in my head. Or maybe I do have more. Maybe he just does not see them because he does not focus on them like I do.
Still, I will  be in my teeny-tines on Saturday the 13th of February. 
I am even more excited because I have a team!!! I will be joined by an amazing group of gals and gens!! I am very happy and thankful for my very brave teammates. Angela's Cherubs is composed of two other gorgeous woman that also have NF. One of them being my mom. The rest of the team is composed of the magnificent people that will not hesitate to fight off bullies.
If you have not joined Angela's Cherubs or donated you still can!!! Remember, this is for a great cause!! We all wanted a world free of NF!! 


I will write post-Cupid's Run post after the race. =) 


ANGELA'S CHERUBS   thank you for your gracious donations!! 

Saturday, January 16, 2016

Just a Working Class Girl with NF


Two months after graduating college, I was hired as an intervention specialist for the Crisis Center of Tampa Bay. In March, I will celebrate my two year anniversary. Although stressful and emotionally draining, I can honestly say that I love my job!!! I say this with complete and utter honesty.

I worked in retail for six years in two major stores prior to having this job. These jobs taught me how to have patients with both coworkers and customers. I learned to bite my tongue and to tolerate those that live in blissful ignorance. These two jobs made me realize just how strong I really am. I encountered people from all walks of life.

Despite having had customers that made fun of me, stared, pointed and even laughed at my face, it has never deterred me from wanting to work. Not even the time a woman pointed, laughed and said, "You are F***ing ugly."

Neurofibromatosis affects everyone differently. In my case NF has mostly changed my facial bones and right eye. I was told
by many that I would not be able to find a job unless I wore an eye patch (check out The Patch..... and Eye Patch Part 2  for further reading). I have never worn an eye patch  at any of my jobs.

I work because I can. My NF has not stopped or prevented me from obtaining a job. Yes, I see from one eye, have mild dyslexia and have horrible spatial perception. Nonetheless I am more than willing to go into work each day.
For me there is no greater gratification than knowing that I earned a paycheck. May it be big or small, I earned it! 

CHECK OUT MY CUPID'S UNDIE  RUN PAGE!! SIGN UP  AND DONATE =)