Thursday, December 31, 2015

Beyound NF

Tonight, I find myself thinking about life. Within hours 2016 will arrive and with it new goals and opportunities for growth and development.  I am thinking about everything I have overcome and gone through. I sometimes wonder how I got to this point when so many thought I would not be able to do much in life. I was judged severely by doctors, teachers, and peers. I have been bullied and shunned. I have been treated as an inferior and trampled on.

Despite everything, I have triumphed. But there is still a lot more that needs to be done and accomplished. I still wake-up and wonder how different my life would be if NF were not part of it. Would it be necessarily easier? I will never know the answer. What I do know is that anything and everything I do in life NF will be a significant part of.

There is so much that I have already accomplished that I was told I would not be able to do. But there are still many many things I would like to check-off my bucket list. I want to get married and become a mom. I want to write and publish books. I want to be a voice for those like myself.  I want to travel around the world!

2015 brought many challenges that were not necessarily having anything to do with my neurofibromatosis.  Nonetheless, I am stronger and better prepared for the curve balls of 2016!!!


Sunday, December 6, 2015

Happy Holidays

                 HAPPY HOLIDAYS 
photo by: Andres Velasquez
I cannot believe that 2015 is nearing its end!! What a year has it been! I am so excited to start 2016 because I know that it will bring more amazing opportunities.I feel that this year my blog has reached more lives than ever before.I was also able to meet some of my readers who have honestly given me more reason to keep sharing my story.
My goal for 2016 is to continue sharing my story perseverance and to reach more lives. I hope to one day be able to publish my story, but until then, I will blog!!
I am very proud of myself because as promised I have written at least one post per month. My resolution for 2016 is to write more often than I did in 2015. I promise to share more personal stories like the one I did about suicide. 
I would also like to invite all of you, my readers to contact me if you would like me to share a personal anecdote or have any questions in particular. I am already working on two topics that I have put off since I began writing my blog in 2012.
I wish you all happy holidays and a fantastic closing of 2015 with the best start for 2016!!!

Oh yeah, and join my team for Cupid's Run! You will have a BLAST

I'm fundraising my pants off for @CupidsUndieRun! Make a donation here to help #EndNF

Join the fun and see me run in my undies!! =) Lets do this!! 

I'm fundraising my pants off for @CupidsUndieRun! Make a donation here to help #EndNF

Sunday, November 1, 2015

Thoughts of Suicide:My Battle with Neurofibromatosis

Photo by Joseph J. Meier
I was washing dishes. I was angry and crying silently. I purposely broke a glass and held it to my left wrist.
My brothers were in the family room laughing. Their laughter made me even angrier because I was not able to participate in their joy. I had just turned 18 and felt ugly, alone, worthless and lost.

I was still upset over the fact that I did not get kissed for my 18th birthday. Almost a month later, I was more furious and empty. I could not understand why I was incapable of sharing the laughter that should have been contagious. Instead, I shunned myself and washed dishes.

I just felt hollow. I was not able to see a day ahead let alone a future after high school. The Summer seemed endless and pointless. Going into my senior year of high school was absurd. Nothing seemed to go right. I was unknowingly depressed and only sinking more and more into my depression.

I held the glass to my wrist for what seemed like hours but in reality could have been seconds. My mind and body dissociated. I saw myself holding that broken piece of glass with the sharp tip to my wrist. I could not recognize myself. I saw this fragile 18 year old trying to escape the pain of rejection. Somehow, and till this day, I cannot explain how I put the broken glass down and walked away.

I did not open up about my suicidal ideations until years later because I felt ashamed of myself for wanting to die or hurt myself. When I finally told someone in hopes of getting support, he just ridiculed me for not going through with it. Despite everything that I have gone through in my life I am happy that that day I did not cut my wrist.

I still have bad days. Days I do not want to leave my house, but I still do because I know that that is what I need to do. I cannot shun myself and wash dishes anymore.

If you are feeling suicidal, please call The National Suicide Prevention Line at  1-800-273-8255.

Sunday, October 11, 2015

Mad Love: My NF Girlfriend

Blog Post By
Joseph Meier

I remember the first time I saw Angela Velasquez.  In a sea of vapid hollow normality, she stood like a lighthouse shining in the darkness.  I was in the lunchroom at King High School, and she was standing, tray in hand, looking for a place to sit.  She had the stupidest look on her face, typical of a freshmen during the first week of school.  Despite the fact that our cliques brushed shoulders, I would not see her again for ten years. 

 My first week of school at the University of South Florida as a transfer student, I was kicked out of one of my class because the alarm on my phone went off.  Professor P and I had a standoff which made quite a scene in my sociology class.  Angela was sitting there in the front row and watched me walk out.  She later told me that she did not think that she would ever see me again, but I am a tenacious person.  I was not going to let one teacher detour my goals in life.  Professor P and I are friends today.

 One day our class was canceled, and neither Angela nor I checked our email.  I saw her face to face and recognized her from the lunchroom all those years ago.  Then I asked the words that would begin a relationship that has changed my life: “What high school did you go to?” 

 It has been a seemingly short two years since I asked that question, and I cannot understand why people look at me and wonder why I am involved in a long-term relationship with the person I affectionately call Baby Bird.  How can these people look at her face and not see what I see? 

Symmetry is so very boring; there is nothing interesting about it.  I find the “different” far more alluring.  What people call ugly, I find fascinating and beautiful.  The first time I saw a dying tree, I fixated on its wondrous form.  Perhaps no one will believe me, but I was first attracted to Baby Bird because she is attractive, yes even her face.  I did not see her inner beauty initially, nor am I free of shallow tendencies.  I was attracted to her. 

 Over the past two years, I have discovered her vibrant personality, her soul-pounding inner strengths, and her emotional frailties.  She gets more beautiful every day.


Thank You NF

I am who I am, because of this crazy disorder that has no cure. I share my story on my blog because I want others affected by Neurofibromatosis and their loved ones to know that despite all the pain, surgeries, treatments and fibromas TRUE HAPPINESS is possible.

As I have shared in various posts, it has taken me countless tears and years to realize that happiness is up to me. If I am not happy, I cannot blame NF. Why will I allow NF to be the maestro of my life?

So, thank you Neurofibromatosis for making me one strong cookie!
When I started my blog over three years ago, I never fathomed that it would reach so many lives or open so many doors.

On October 03, 2015, I spoke at the first Neurofibromatosis Education Symposium at All Children's Hospital in St.Petersburg, Florida. I felt honored to have been given the opportunity to share my story.  I was overjoyed to meet and speak to some of my readers.

Thank you, NF for all that you have given me. Despite all the pain and hurt I have now and will continue to go through, I would not be the person I am today if it were not for this crazy disorder with no cure... for now.

Tuesday, September 15, 2015

Fibromas and Showing Skin

 As I get older, I, sadly, have become more self-conscious with my fibromas. I look at my body and dwell on the fact that there was a time when I did not have single fibroma.  Sometimes I blankly stare in the mirror and wonder if I will get more. As of now, I do not have many, and the ones I do have are small. I work myself up over something that is completely out of my control.

Thankfully, I have an amazing boyfriend that snaps me back into reality. He tells me I am perfect just the way I am, and that he will always love me with the fibromas I have and will continue to get. Even though I honestly believe him, it is sometimes not easy.

I make it hard on myself because  I am self-conscious about my figure. I do not have a womanly figure. I am petite and short. My small breasts make it hard to buy adult clothing. At the age of 28, I still purchase clothes in the junior department. People still think I am in my late teens at times. I like that I look young but sometimes having a small frame, and NF causes my self-esteem to not be so high.  I know I can get a breast augmentation, but after 17 surgeries I am not about to have one just to be able to fill a dress more.

A few days ago I read a beautiful story about a young lady. Due to an illness, she has an ileotomy, a G-tub and a J-tub. To accompany the story, there is a beautiful picture of this most courageous young lady. This story on The Mighty put everything into perspective for me because I realized that I can let my fibromas keep me hidden or show them off to the world. After all, I and I alone, am the only one that is keeping me from being confident.

Sunday, August 16, 2015

Number 18

The last time I had surgery I was 18 years old and a senior in high school. Now I am 28 years old, out of college and working as an Intervention Specialist. I am planing on having surgery number 18 soon. I do not remember being so anxious or nervous before, but that is exactly how I am feeling now. I think it is because in the past, all I had to know and care about was the day of the surgery. Everything else was left to my parents.

For the most part, I never thought to ask them about my insurance or out of pocket expenses. One time,however, I asked my parents if they ever had to cut corners to pay for my surgeries, and they said no because the insurance took care of everything.

Now that I am a big girl, I have to take care of all the costs and deal with the insurance company on my own. It has not been an easy process at all. I find myself adding up costs and calling my insurance provider, doctor and hospital trying to get three simple answers to three simple questions: how much will my surgery cost, how much will my insurance cover and how much will I have to pay?

To be honest, I am not liking the numbers that have been given to me to date. I am having a difficult time wrapping my head around the situation. I cannot believe that this surgery will cost so much.When compared to my other surgeries this surgery is not as delicate or relevant to my health, yet it is still so expensive.

I am currently talking to my cousin in Bogota, Colombia, a surgeon, to give me an estimate of how much it will cost to have an out-of-country procedure. If airfare and the cost of surgery is less in Colombia than what it is here, I will go to Colombia.The exchange rate is already in my favor (for now).

As things stand today, I wish I were 18 again because that way I would not have to deal with any of this nonsense! But alas, I need this surgery, however minor it is. I still freaking need it.

Friday, July 3, 2015

NF... Need No Rescuing.

Rummaging through paperwork I found an old poem. It was folded in four. I had no idea of what I was about to read; I read it once, twice, three times and I allowed my own words to sink in. I wrote this poem back in 2008. What I did not know then that I know now was that I was truly depressed. My dad had moved out of the house and to Miami with his mistress, my mom filed for divorce. My childhood home was going through foreclosure. I did not know who I was or who I wanted to become. I was lost.

I remember writing the poem and reading it after printing it. I also remember reading the words but to me it was just black words on a white sheet of paper. Finally, I remember reading this very poem at a local cafe on an open-mic night and the audience looking at me in awe.  Again, the words I wrote did not hit me until I read it today. 

 I am looking for my soul
The soul that I seem to have lost  
I seek through through memories of the past to see if i find it
I draw a blank canvas-nothing
I wander off into the pool of emotions that I have dived into before
But  all I hear are echoes
My soul has fled- and I don't know why
There is not hope
I can't find it
I am just a shadow walking in the wind
Hoping, to one day find what I have lost-
My soul

It took me a few years to realize that my soul was never missing, I wast just not living. Life is not easy not because I have NF but simply because life is not meant to be easy.I have gone through a lot in my 28 year of life, some of my life experiences have been due to my NF. While others, are just things that I have lived through. I am a stronger and better person. I am not the girl in 2008 anymore and I NEVER  want to be that girl AGAIN.

Hope you enjoy this song by Yuna. I found it very fitting for this post. Every time  I listen to this song I remember how far I have come and how many more miles I have left to walk.
Enjoy! =)

Thursday, June 18, 2015

Another NF Birthday... and counting

Yay!! I am 28 years old!! Whoop-whoop!!

For my 18th birthday, I had a party at my house and invited all my friends. Even though I threw a party for my birthday every year, I remember being extremely excited. I also remember being extremely disappointed and crying... a lot.

All I wanted for my 18th birthday was to be kissed. I felt like a total outcast because I was the only one in my group of girlfriends that had not been kissed, and I did not like it. So, I made up my mind that I would get kissed that particular night by one special party guest.

I created this scenario in which he would take me aside. Pull me onto him with one hand and gently plant a kiss on me. Of course, he did not know that he would be the one giving me my first kiss, but that did not matter to me because somehow I  knew that somehow he would know.

He never made it to my party. So I began my 18th birthday thinking that I would live the rest of my life kiss-less. Yes, I know, it is just a wee bit dramatic. I did get kissed eventually... at the age of 23, but I am far from the person I used to be.  I used to dislike not being part of the inner circle, now I relish the fact.

You see, I have come to learn that things happen when they need to not a moment earlier or a moment later. The way I see it now,  if he would have kissed me, my life today would be completely different. To tell you the truth, I really like the way my life is right now.

For my 28th birthday, I got kissed... many times over by my boyfriend. The best part of this story is that I do not have to wait until next year to get kissed. All I have to do right now is look to my left,  and kiss Joe, my Lucky Charm.

Sunday, May 10, 2015

Mi Mama Me Mima

 My mom is great. I know, every child believes their mother is great, but not every child has a mother like mine. My mom also has Neurofibromatosis, she was diagnosed when she was a teenager. Unlike me, she has not had to have multiple surgeries on account of her NF. However, she does have a lot more fibromas than I; but she also did have three kids by the time she was my age.

I asked my mom once if she would have had children if she knew that her NF would have been affected. Her response was simple. She said, "Yes."  I've also asked my mom if she would have still had me if she would have known that my NF would be more complicated. Again, her response was was simple. Once more she said, "Yes."

My mom has been by my side during all my surgeries. She is always the first person I ask for after waking up from an eight-hour surgery. She has slept on uncomfortable hospital beds and ate yucky hospital food all to be by my side. She has nursed me back to health when I have been sick. She has even removed stitches from my index finger.

My mom is great. She has done a fantastic job raising my brothers and me. She has taught me to never allow myself to believe that I am incapable of accomplishing my goals due to having NF. My mom is a beautiful, smart and talented woman that I one day hope to become. She is by far one of the strongest women I have had the privilege of knowing. After overcoming a divorce and financial difficulties, she is now graduating with her Master's degree in Counseling! I am proud to call her my mother!

Te amo Mima !

Friday, May 1, 2015

To My Brothers... Thank You !

When I was four my brother Andrés advised me to hit a bully over the head with my lunchbox. When I was seven, my brother Fransisco took me by the hand while pulling a boy by the arm to the vice principles office for being a bully. These are my brothers, always protecting me and making sure I am happy, smiling, and laughing.

I am the youngest of three, but I feel as if  I am the baby sister of ten brothers. My brother's friends have always treated me as their little sister and even now, at the age of 27, all of my ten brothers will do anything in their power to make sure that their little sister is happy, smiling, and laughing. 

Andrés being six years older than me has always had the ideal words to use whenever I am feeling upset with myself for having NF. He has this uncanny ability to turn any situation around by just saying, " Are you kidding me, Angela Lucia, you are letting that _____ (input curse word here) put you down? Do not let ______ waste you time. You know better than that." Yeah, I know it sounds like his punishing me for letting some ignorant idiot put me down. But in reality he is right; I allow people to put me down when I should not. 

Fransisco is only 18 months older than me. Therefore we went to school together. Hence, he has had to stand-up for me many many times. Fransisco has always been one of my biggest hero's because he has always protected me. In my eyes, he has also saved my life twice. When I was eight, I experienced two episodes of grand mal seizures. During my first episode, my brother and I were curled up in bed with our grandmother. She was telling us a bed time story.The next thing I remember my entire family was gathered around me and an EMT was kneeling next to me. I later found out that my brother ran to my dad whom is medically trained when my grandmother noticed I was not breathing. A few months later I had another episode, this time I remember waking up in the hospital. Again, my brother acted fast by calling 911 while my dad held me as I had my second seizure. 

Both my brothers have been a significant influence in my life. I would not be the woman I am today if it were not for them. They never treated me different or special for having NF or looking different. In fact, I grew up horsing around with them, rolling on the floor laughing due to tickle wars or just because. My brothers have always made me feel proud to be their sister, even when we argue and not get into stupid silly sibling fights. 

Thank you, brothers, for all that you do! 
Love you !!!

Tuesday, March 31, 2015

My Prosthetic Eye

Questions and Comments I have heard throughout my life:

"Did you get into a horrible car accident?"
"Were you burnt?"
"What happened to your face?"
"Oh, you're from South America, that explains it. People from South America tend to have strange diseases."
"Oh my God! That makeup looks amazing. I almost thought it was real."
" Don't worry honey, God loves you a lot."
" You have a big eye."
" You have one black eye and one green eye." 
" You will never have a boyfriend because you are not attractive." 

These are just a few of the questions and comments I have heard through out my life. It used to make me angry that people always thought that my face was the result of a freak accident.It is as if it is a lot more comprehensible to understand that a car accident caused my scars, verses being born with a disorder. Maybe because that means that it could have been them with NF or even their own child. I really don't know. At times it still hurts my feelings when I see that glazed look on peoples faces as if they just don't get it. How I was born looking this way... and survived.  I used to fall apart. I used to want to cry. I used to hate it. I used too... not anymore. 

Thankfully, I outgrow the phase in my life where I allowed the ignorance of others affect me. Now when I get rude questions or comments I simple smile. I am done explaining to ignorance, I just respond to questions by saying, " I was born this way." I smile and keep on living my life. 

So I have a prosthetic eye, I have had it since I was twelve. Even today, I can vividly remember my excitement for my glass eye, I was giddy with joy! I was excited because I was going to have two beautiful eyes. I did not care that one was fake and that my right eye would never look to my left. I was happy knowing that my prosthetic eye looked one hundred percent better than my real eye. 
The day I got my eye I went to my aunt and uncle's house. My aunt said something along the lines of " You look so pretty!" ( she said it in Spanish). 
I have always been proud of my eye. I like my eye!! 
Through out the years, I have gotten multiple eyes due to surgeries and grown up. I have all my prosthetic eyes. I keep them not only because they were costly but as a reminder of how far I have come! 

So I have a prosthetic eye. Everyone can tell that my right eye is not real, and those that act shocked when I say otherwise are just being nice. 

** Sorry that I am posting so late, I have had a crazy month at work. Thanks for reading**

Saturday, February 14, 2015

First-double-blind Date

When I was sixteen I went out on a very particular date; a date that has forever remained in my vivid memory. It was summer, my friend Catalina asked me one day on the bus ride home from school if she could give my number to her boyfriend's cousin because he was new in town. She told me that her boyfriend's cousin had just arrived from Mexico and wanted to meet a cute girl because he was lonely.

I was excited at the thought that I may very well have a boyfriend very soon! In my mind, I already had the fairy tale written even before speaking to my prince charming. -  Soon I would come to realize that my version of the date was ten times better than the reality. Within a few days, J. and I were talking. We spoke every day for about a week.

My parents knew I was talking to a boy that I did not know personally. They were okay with the idea of me talking to him but not with the notion of going out on a date with him alone. Therefore, my friend Catalina and her boyfriend would have to join J. and me on our date. Unfortunately, the week I was supposed to finally meet my prince charming Catalina and her boyfriend broke up.

I was devastated! Thankfully, we were back on when J. said he would bring a friend for my friend.
The BIG day finally arrived. Catalina and I were both nervous because we were about to go on dates with two complete strangers. All we knew were their names. It was around 3:30 and Catalina and I were standing outside her driveway waiting to be picked-up.

Off at a distance, we saw this little green car. My friend starts laughing nervously and says to me, " Oh my God Angela! That better not be them! I hate green cars!" No sooner she finished expressing her dislike towards green cars when the car parks a few feet away from us and two men step out and start walking towards us.
" Oh shit Angela! This cannot be happening!" Catalina was in horror while I was trying to keep my heart from popping out of my chest.

By the time our dates approached us we had stopped giggling and had already determined who we wanted our suitor to be. Unfortunately, we wanted the same guy.
 J. was around 5'6 and wore baggy clothes. His straight jet black hair was long and looked as if he used an entire gel bottle to glue his hair down. J. had dark brown eyes with tan skin tone to match.
N. was about 5'10 and wore clothing that were his size. He had short black hair, and light brown eyes and deep olive skin tone.
The J. I pictured in my mind was not the J. standing in front of me.

After the initial shock had dissipated, Catalina and I were walked to the car where N. and J. proceeded to sit in the front while she and I sat in the backseat ( we opened our own doors). Before driving to the movie theater N. and J. handed us a huge CD album filled with music that neither Catalina nor I liked.

Then N. and J. turned to Catalina and me and gave us two artificial potpourri roses with a tiny and equally hideous white teddy bear hanging from the stem. When we arrived at the movie theater neither N. or J. wanted to go up to the window to purchase the tickets. They were too shy due to not speaking English very well. They handed me the money, and I (the one who spoke the most English) bought the tickets. As if that wasn't bad enough when we sat down in the theater N. and J. sat next to each other followed by Catalina and me. Not the best sitting arrangement for a double date if you ask me.

Following the move, we naturally went out to eat. Instead of asking us where or what we wanted to eat N. drove us to a fast food joint. At this point of the date, I was pretty disappointed because J. was paying more attention to my friend than to me.We ate the food back at Catalina's house. After the dinner part of the date was over there was nothing more to do than to say our good byes. That in itself ended up being the most awkward part of the date. Instead of a quick hug, both N. and J. extended their hands and gave us a handshake.  Till this day I cannot wrap my head around that last aspect of the date.
Undie Run St. Petersburg 2015

The icing on the cake came a few days later when my friend Catalina informed me that J. had begun calling her wanting to go out on a date with her. My friend being loyal ignored him. This story does have a happy ending, Catalina and N. ended up dating for a few years.
As for me, I never spoke to J.


Monday, January 19, 2015

Eye Patch, part 2

"I bet you could get a boyfriend fairly quickly if you wear an eye patch," said a family member once. About three months later I met my boyfriend... I was not wearing an eye patch.

 I have never been too keen on the idea of wearing an eye patch because I have never found a reason or need to wear one. Unfortunately, some of my family members believe that my life would be much easier if I covered my eye. They also believe that by wearing an eye patch it would make it easier for others to approach me because they would not feel awkward or uncomfortable when looking straight at me.

After years of arguments with various family members, I decided to give the eye patch a try. In the summer of 2013, while vacationing in Washington DC, I wore the eye patch on multiple occasions. I actually wrote a post about my experience and thoughts about it. The Patch was all about my one time experience wearing the eye patch at the party full of strangers. That summer I wore it two more times; once for a family Bar-B-Que and finally for a concert. Both times my godmother was very excited because she has always been very vocal when it came to me covering my eye.

 My godmother, her husband, my male cousin and my dad were all for me using an eye patch. They encouraged me to use the eye patch every day and to get them in as many colors as possible. I smiled and nodded because I felt defeated. I felt even more defeated when my father told me, " I have always thought you should use one. I do not know why you have not used it, but I think you should. You look beautiful when you wear one."  My father telling me that was a complete revelation because I always thought that he was against the idea. I mean, he always supported my stand when it came to eye patches.

I wore it once more when I came home from DC. I went out to a bar with one of my best girlfriends, who has always said that she supports me either way but that she does not think I need to use one.My experience that night was not very different than the times I went out with friends without an eye patch. Men looked at me. Some approached me while others just stared and kept on walking.
That night I was approached by a fairly nice man. We spoke and danced for about half an hour. He did ask why I wore the patch, but not being satisfied with my response he reached out to my face and tried to remove my eye patch! I have never before had anyone touch my face or my eye to see if it was real or fake. I was in complete shock! I slapped his hand off. I did not know what else to do or say. I simply walked away.

I attempted to wear my eye patch on other occasions, but I would always end up taking it off before I left the house. Point blank, I do not like it! I met the love of my life with out wearing an eye patch. I work for a prominent non-profit and have never had a problem with not wearing an eye patch.
My godmother, her husband, and my cousin all said that with an eye patch I would find a boyfriend in no time and it would be easier for me to find a job. Hmm makes me wonder just how superficial my family can be. It is kind of sad that some of my family members are so adamant about me using an eye patch while it is my friends that only say, "I do not need one."