Saturday, March 10, 2018

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...

Saturday, February 24, 2018

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!!! 

Saturday, February 3, 2018

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.
Related imageA 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.


Friday, January 26, 2018

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

Saturday, January 13, 2018

Surgery Update

Today I found out that I am having surgery on Wednesday. That is Wednesday, January 17th. Yes, that is less than a week away but when you are talking about two surgeons having the same available date and an operation near my brain... you take what you can, even in this circumstance.
So, I am left with four days to adequately prepare myself and to make sure I leave as many things organized at work as possible.

To say I am anxious is to minimize it, even though this is my 20th surgery I can't help but feel this way. Afterall, I am having major surgery and that is not easily digested.

I will keep you all posted with any and all updates, but for now, I will leave you with this song because it has taken me many years to get to this point and I am not about to let a surgery push me back!





One more thing, go donate to my Cupid's Undie Run Page!!

Wednesday, December 27, 2017

20th Surgery

So due to taking goofy pictures on December 8th,  am now having my twentieth surgery. Okay, to be honest, that is not the real reason I am having surgery, but it is a contributor. So as it turns out my skin on the right side of my head has given out and tore. This means that that plastic covering that is protecting my brain is now exposed. In other words, I am at risk of getting an infection that could reach my brain...not a good thing.
Thankfully I had already set up an appointment to see my surgeon for December 12th. When I showed him my head he was not happy, he told me right away that this was not good and that he would need to do surgery. Since we are talking about my brain, I had to go see a neurosurgeon; he took one look at my head and the results of my CT scan and MRI and said that I needed to have both the plastic cover and titanium mesh replaced. Thankfully, I have no infection and both my surgeons are confident that they can fix me. I currently do not have a specific date, but trust me that when I do, I will write about it.
After I realized that  I was bleeding from the side of my head, I walked quickly from the second floor of the venue to the first floor to the bathroom. It was there that I was able to see the extent of my injury. I knew right then and there that the bleeding was not good and that a band-aid and ice would not fix it. My friend Chantal texted me asking where I was and why I ran out on her. I texted her as I held a paper towel to my head trying to avoid questions and eyes from fellow colleagues that were using the restroom. Chantal met me in the bathroom, and I showed her my injury, her reaction, "shit, that's not good." I told her I was going home to clean it up and to ice it. While she and I discussed on my ride home, my manager walked into the bathroom. She took one look at us and instinctively knew something was off. She walked to us, saw that I had a wet paper towel to my head and asked. So I showed her. Again her reaction was, "shit that's not good Angela."
I kept insisting that I needed to go home, but my brilliant and wise manager was like, " Just put a band-aid to stop the bleeding."
Duh, Angela! Why didn't you think of this before?  After she found a band-aid and placed it on my head, we snapped a picture and continued partying!





Tuesday, December 26, 2017

Thoughts on "Wonder"

The first time I saw the movie trailer for " Wonder" I cried. I cried because I saw a reflection of myself in the main character. I cried because it hurt seeing my childhood on the big screen. My mom hugged me and said, " I know." She knew precisely what was going through my mind and what I was feeling. Finally, the world will get a glimpse of how I felt as a child; they will a feel a slither of a fraction of what I have felt my entire life.
I do not know exactly what effect this movie will have overall but what I do know is that I am not the only person in the world that has walked a similar path that Auggie has.  I have felt and at times still, do feel shunned because of my looks. Like Auggie, I have felt that classmates have avoided touching me for fear of contracting NF.
I have yet to see the movie, but I did read the book over the Christmas holiday. I got choked up before finishing the first paragraph. I cried, laughed and got angry while reading "Wonder." For being fiction, it was very truthful and heartfelt.
 I know and understand why my godmother called to tell me her daughters kept saying that Auggie reminded them of me because he was a brave little kid that looks different and has had a tough life. My little cousins, Camila and Daniela, are two of the sweetest and loving girls I know to them I am their older cousin that just happens to look a little different. To them, I am beautiful, smart and funny. I know this because they tell me each time I see them. So when my Godmother called me and put the phone on speaker so I could talk to Cami and Dani after they saw the movie I knew their comments and comparisons came from a loving place.
So, I think that "Wonder" will open up a lot of conversations at home for parents and it is my wish that parents take this opportunity to teach their children about how diverse humans can be.