Speechless

Candice and I after our presentation

On Saturday, May 12th, I attended an NF symposium at John Hopkins All Children's Hospital. I was eager to attend not only because I wanted to learn about new research findings on NF but more so because my hero and friend Candice was going to speak.
As I was sitting in the second row, sipping some coffee, I saw Candice approach the podium to speak to the host. They spoke for a few minutes, I figured they were talking about Candice's presentation and the other presenters.
A few minutes before the symposium was to begin Candice called me over, I figured she wanted me to meet the host for the day.
I was 50% right.
I was asked if I felt comfortable, if I could speak on my life and how NF has affected it. It took me less than 30 seconds to say "yes".

Giving my speech

So, I gave an impromptu speech on how NF has played a part of my life for almost 31 years. It was a cathartic experiance and at the same time exhilarating. I realized after giving my speech that I want to continue doing this, what can I say, I am hooked!

Motherhood Part 1

In March of 2015, Joe and I had a scare. What followed were three weeks of anxiety and stress. I was so overwhelmed that I got sick with strep throat for the first time in my life. When this first came into play, we discussed our options and ultimately decided that we would wait to take a pregnancy test and go from there; I took two, and both gave a negative result.  If I am 100% honest, I was relieved that I was not pregnant. This does not mean that I do not want to become a mother, in fact, it is quite the contrary, I cannot wait for motherhood.

However, I want to adopt instead of having biological children. I made this tough decision when  I was in my early twenties, and I am not changing my mind. I know of many women with NF that have chosen to have children, my own mother for instance, but that is not a choice I want. I've had many conversations with my mom on this subject, and through them, I have learned that my mom at first was not aware of the risks for her or the baby.

My mother had three children, my two older brothers and myself; Francisco and I have NF. After each pregnancy, my mother developed more and more fibromas. She tells me every time we have this conversation that she does not regret having my brothers and me because we are her life; reassuring me that if she knew then what she knows now that she would still have my brothers and me. That I find very courageous and admirable.

Four months into my relationship with Joe, I told him that I did want to have biological children. I told him this after he made a comment one morning as he was getting ready to go to class. I asked him what he wanted for lunch, and his response was, " I can't wait to have you pregnant, barefoot and in the kitchen."  I knew he said that with no malice but his comment sunk my heart.
Here I was with the man, I then thought was my future husband, and he is letting me know that he wants me to carry his child. After he left, I cried because I knew I had to tell him and I knew I would run the risk of ending my relationship with him because of this.  Nonetheless, I found the courage I needed.  Once again I cried as I told him that I would not be giving him biological children and how I understood if he wanted to end our relationship before it got more serious. As he kissed and wiped my tears away, he said that he could live that, after all his dad and aunt were adopted.

I believed him.

Unfortunately, throughout the three years we were together he would ever so often mention the topic. He would say that he did not care if our child had NF or that he did not care if I got more fibromas. And no matter how many times I would explain to him that I was not changing my mind and how his comments hurt, he would still bring it up.

So, when the possibility of me being pregnant presented itself, I was faced with the possibility of making another tough decision. Ultimately, I decided that if it turned out that I was pregnant that I would go through with the pregnancy.

Yes, I want to be a mom. No, I do not plan on getting pregnant, but if it happens, it happens; and now, I am okay with that.

Flashing Yellow

I've come to a moment in my life in which I have realized that I need to stop proving myself to others and just live my life freely. This has been a tough lesson to learn because by focusing on proving myself to others I have in actuality been failing myself. 

This, I realized very recently, As I began shutting down and creeping into a depressive phase.  I was scared of being depressed once more and of not having the strength to pull myself out of it. It took me a very long time to dig my way out that when I did, I promised myself I would not be in that hole again.

When I spoke to my therapist about my current mental and emotional state he told me that I was, in fact, exhibiting the warning signs.  The way he worded it was that I was flashing yellow and that I was able to turn it around to prevent the light to change to red.

I don't want my yellow to turn red. And so, I need to focus on me and not on others, which always seems to be the most challenging thing for me to do. 
For someone that dislikes being in the spotlight, I genuinely do a  disservice to myself by needing to prove to others that I am capable of everything. I know I can do anything and everything I set my mind too I just need to do it for me and not for them.

And Now to 21

 I went more than a decade without having a single surgery. I had become accustomed to a life free of operations. Of course, a few times I thought of the possibility of having some fibromas removed and even spoke to a doctor, but, nothing came out of it because the timing was not right.

So, let's rewind back to June 2017 when I was reintroduced to surgeries.  I went to Dr. G. because he had operated on two other friends that also have NF and both spoke highly of him.  Since he had successfully removed fibromas from my friends, I had complete trust in him even before I saw him for my first consult.  I was right in not having any apprehension, he far exceeded my expectations.

I never thought in a million years that I would have the face that I have today because passed surgeons said it would be impossible. In fact, those same surgeons spoke of a painful surgery that they considered necessary when in reality it was not.

From the moment I met Dr. G, he has been honest and straightforward. He told me what he was able to improve and what he saw as unnecessary pain for me. Instead, he gave me an option to enhance the appearance of my right eye.

On March 7th Dr. G, operated on me for the fourth time making this my 21st surgery. Yes, this was a surprise for the both of us! Another unplanned surgery. This time two tiny tips of titanium were poking out, this was attributed to my surgery in January. Out of anything that could have happened after that major surgery this was very minimal. Both Dr. G and I were much more relaxed going into this one because we both knew it was a simple but necessary fix.

Dr. G operated on me for the first time in August, seven months and four surgeries later and these are the results...

Cupid's 2018

What an amazing day! Angie's Awesome Angels raised $1,760!   The amount raised just blows my mind, I cannot begin to express my gratitude for every single person that donated.I am forever grateful for your contribution towards finding a cure for NF. 

I would just like to thank my Awesome Angels because you made my day so very special. This year Cupid's Undie Run was more significant than previous years because I was recovering from major surgery. I was embodying the reason we need to find a cure.  I do not want to have to go through another scary impromptu surgery because of my NF again; nor do I want anyone else to go through a similar procedure either.  

So without further ado, enjoy some snapshots of our Awesome Angels.

And now to prepare for Cupid's 2019!!! 

My First Boyfriend

My 'first' boyfriend was a high schooler, had long brown hair, beautiful brown eyes, and was a bit taller than me.At least this is what I told some girls in middle school that would bully me by telling me that I was too ugly to have a boyfriend. They would say to me that I was too skinny and unattractive because my face is disfigured.
So one day, I got so tired of their bullying that I told them that I did have a boyfriend that was a freshman in high school. I still remember their doubtful faces as I shared with them my fairytale romance with an older boy!  One of the girls told me that she wanted to see a picture of this 'boy' that I was so calling my boyfriend.  So, without flinching, I agreed to bring in a picture of Juan and I together.
A few days later I went to school with picture in hand. The truth was that Juan and I grew up together, we were more like cousins than friends. He and I spent pretty much every weeked together. Juan knew very well of the bullying I indured in school, many times I would just cry in his arms as he did his very best to console me. When I asked Juan if he would prentend to be my boyfriend and show some bullies a picutre of the two of us, he agreed right away. I do not know if my bullies believed me or not, and honestly, at this point it does not matter but the girls did stop taunting me, at least for a few days.
Through out my adolescense many classmates and so called friends told me that I would never find love. They would say that men would only see me as a friend. Instead of believing Juan and others that would say that they were wrong, I chose to believe my bullies. Afterall, I went through middle and high school without been kissed.

I had my first kiss and boyfriend at the age of 22.

Post 20th

Surgery went great! I cannot begin to express how happy I am with the results of this operation. Even though I am still puffy, I can already tell the difference. I once again have a nice round head thanks to two amazing surgeons, and best of all I no longer have an open wound on my right temple.
During pre-op, my surgeon told me that I should expect to stay in the hospital for a minimum of five days, this did not make me very thrilled.  Thankfully, my body remembered how to bounce back after major surgery and I was able to go home two days after surgery.
While in the hospital one of many wonderful nurses jokingly said that I looked like Sally from Nightmare Before Christmas. After looking in the mirror, I agree!
So I currently have a shaved head and stitches running from my forehead down to my right eye and back around my head. I thought that having a shaved head would be awful, but it's not.

Pre-surgery

post-surgery

To get a better understanding of this post, please read the following two posts.
 20th Surgery 
Surgery Update