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.

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.

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! =)

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.

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 !

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 !!!

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**