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

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, it could have been seconds. My mind and body dissociated. I saw myself holding that broken piece of glass with a sharp tip to my wrist. I could not recognize myself. I saw this fragile 18 years old trying to escape the pain of rejection. Somehow, and to 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 always 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.

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.

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.