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!

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.


 

Donate to my Cupid's Undie Run page!

So I am asking for donations for my Cupid's Undie Run page. Every little bit helps! I assure you that every dollar raised goes towards research to find a cure for Neurofibromatosis. 

In advance I thank you! 💖 

 



Donate to my Cupid's Undie Run page!: Make a donation toward Angela Velasquez's fundraising effort in support of Cupid's Undie Run.

Updates.... Life Happens!

So lots of things have happened since I last published.

 I had another surgery, this time it was minor. In fact, I had it in my surgeon's office. I am wearing the eye patch again..but I will survive. My surgeon wants to take it slow, he wants to see my progress before he works on me which makes me feel very comfortable. So I may have one or two more surgeries on my eye.

I also got published!!! Yep, you read it correct! I got published not on one, but two sites! The Children's Tumor foundation contacted me in mid-August and asked me to write a piece for their blog, they also informed me that sometimes The Mighty picks it up and also publishes on their site. I was very honored to write for CTF and could not have been happier when I received confirmation that both CTF and The Might would be publishing my post!

And to complete my updates for 2017... I was interviewed by Chris from Special Books by Special Kids!! I am on cloud 9! Check out my video and all the other amazing interviews that Chris conducts daily. Enjoy!! Special Books by Special Kids

Post Surgery

It has been a little over a month since I had my surgery and I have not stopped smiling. I know that for some the change is minor or not apparent, but for me, it has made a big difference. I am overjoyed with the results.

The most challenging aspect of all this was not the itchy stitches or the nagging pain but the fact that I was forced to wear an eye patch for five weeks. I was reluctant to leave my house or to go anywhere else other than my job. Thankfully, I have people in my life that will not allow me to become a hermit crab. Despite my apprehension and the uneasiness, I  felt with my eye patch, my friend Chantal took me out one night after work. She encouraged me to do so because she was not going to allow some eye patch stop me from being the vibrant person that I usually am.

She alongside many amazing co-works made me feel the most comfortable I have ever felt while wearing an eye patch. I cannot put into words how thankful I am to work alongside individuals that genuinely care about me and my well being. Now that I think about it, it was very silly of me to have been so nervous my first day back to work after surgery. The first thing my manager did after stopping an entire meeting because I walked into the room, was to tell me that I had reports due! To some people that may have been off-putting, but to me that was the best thing she could have done because it made me realize that the eye patch had not changed anything about me. I was still me; I just happen to be wearing an accessory that was covering my right eye!

I  dedicate this post to my CCTB family. Thank you, guys.

Surgery

In August of 2015, I blogged about the possibility of having my 18th surgery, but I decided to postpone it because the timing was not right. Thankfully, I was able to wait without any repercussions. But now, surgery 18 is happening, and I could not be more nervous and scared. I will have my eighteenth operation on Wednesday,  August 30th.
After over ten years I will be going under the knife once more, this time I will have fibromas removed from my back that I find to be too big and bothersome.  The surgeon will also attempt to correct a botched surgery that I had in my right eye from when I was a teenager.  The surgeon wants to not only fix the damage done by a previous surgeon but also make my right eye more ethically pleasing. 
I am finding myself more nervous about having to wear an eye patch for four to six weeks than the surgery itself. I do not like the idea of having this big black circular thing on my tiny face. I get anxious just thinking about it. I feel like the walls are closing in on me and I have no escape. When the surgeon told me about his plan and how I would not be able to use my prosthetic because I needed time to heal I almost told him to forget about it. That is how much I dislike the idea of wearing an eyepatch. 
I 've tried using an eye patch before, and that did not go very well. The last time I wore my eye patch this guy tried taking it off! I've written blog posts about my apprehension of using it and have weighed in pros and cons, as it turns out I rather people look at my face and gawk at my eye than having people guess what I am hiding under it.
"The Patch" describes my first experience of wearing an eye patch out in public. I now realize I did it so that I could please family that kept insisting I try it. My second eye patch post details my dislike towards them and how some family members have always wanted me to wear them.

So now it looks like I have no other choice but to use the one accessory in my closet that I despise. I'll have to use it for about a month...unless I decide to become a hermit crab and never leave my house.

NF and 'Anorexia'

" I love my body," I've said never, but I don't hate my body either. I do however like my body and one day I know I will love it. The truth is after years of harsh bullying and body shaming I am just now coming to and appreciating my petite figure and curves. I was bullied for being "too thin" and was accused of being anorexic multiple times.
Growing up I was made to feel ashamed for being thin and petite. I really disliked and hated my small frame. I was ridiculed for not having a voluptuous body, for being flat-chested and for not meeting beauty standards. I went through a phase in which I seriously considered having breast augmentation in order to fit the mold just a little bit.
The taunting became so bad that I  started internalizing the comments and actually began to believe that there was something seriously wrong with me. As a teenager, I would stand in front of the mirror naked and point out every wrong and ugly part of my body. I would tell myself, " So not only do you have NF but you also have no boobs or ass. What guy would ever find you attractive?"  I essentially was bullying myself.
The saddest part of this story is that growing up I also heard from my family and friends that I did have a beautiful body, that my small petite frame was proportionate and perfect, but that did not matter because the voices of my bullies were louder. And so that was my reality until I stopped liking the reality that I had created and started reevaluating everything. Little by little I started to like my body and learned how to appreciate my small frame. Now, at 30 more than ever, I am thankful I did not have a boob job or any other unnecessary surgery. What also helped me through this process is that the two boyfriends I've had never failed to tell me that they found every inch of me sexy. I do not want to give them all the credit, but being told that you are beautiful (and sexy) from someone other than your brothers does help.  It took me a very long time to consider myself sexy because I was told by so many that I was anything but sexy.
So, I do not love my body but I do like it. I appreciate my small frame and curves. I am healthy and NOT  anorexic. People still do comment about my thinness but it no longer bothers me because I ignore the comments even if they are meant as compliments. 

Brave at 30

Happy 30th birthday to me!!!

Yep, I am 30! I never thought I would reach my 30s and be as happy as I am right now, but truth be told I would not have it any other way. You see, when I was 15, I told myself that by the time I was 30 I would be a published author, happily married with at least two kids and traveling the world. Well, reality check, I am happily single but open to finding love, I may not be a published author but I blog and share my story with anyone that wants to read it. And I do have two fur-children. So, I am not doing too bad. In fact, I am doing better than expected.

I am just now realizing just how brave I actually am, I mean my family and friends have been telling me all my life but I never really thought about it until recently. I do not know why I am just now realizing it and I am not about to question it because that is not important. What is important is that by me recognizing this I am now giving myself more challenges and opportunities to make mistakes. I've always been afraid to make mistakes because I didn't want others to say, " Oh she has NF, that is why she failed." I know, sad, but by having that mentality I was only failing myself.  So no more, I am leaving that thought process behind, and telling myself every day just how brave, smart, funny, and beautiful I am!

And by the way, you too are brave!!

Working Girl

As I have shared multiple times in my stories; I was not supposed to speak two languages, I was not supposed to 'learn' in a traditional classroom, let alone go to college, I was not intended to do many things.But, as all of you know, I do not like being told what I can and cannot do.
I welcome a challenge.
So when a Supervisory position opened up at my job I instantly jumped at the opportunity. I knew that the job would be demanding and that I would be tested every day but that didn't scare me. What did scare me, however, was not applying because that I would regret it forever.
With the encouragement of loved ones, I applied for the position of Supervisor of Gateway for the Crisis Center of Tampa Bay. I had my interview on March 24th, what followed were three weeks of anxiousness. I knew that there had been other internal candidates and I was told that they may also consider external applicants. I was freaking out!! I became more nervous as my April vacation neared.I was going to be unreachable for seven days, and I did not want to walk into the office on my return with a surprise be it good or not. 
So when the then manager of the program approached me and told me that he wanted to speak to me by the end of the day on April 5th, I became even more nervous. I went into his office, but he said that since it was a nice day we should go for a walk around the building. I took a deep long breath and followed him outside. 
In that 30 minute conversation, my former manager offered me the position of Supervisor for Gateway! I accepted it right away, of course!
Not bad for someone that was once told that she would not be able to do much in life! 

I would now like to take some time to tell all those that never believed in me, a little message.....but I am almost sure they do not read my blog. But just in case they happen to stumble across it and decide to read it....

 

Cupid's Undie Run 2017

 Cupid's Undie Run 2017 was a huge success!I was ecstatic to see returning faces but even more so to see so many new ones. It makes me so happy to see that by having this event and others like it the NF community is no longer in the dark.We cannot pretend we do not exist. I cannot remain recluse due to fear of what others may say or do. That is why events such as Cupid's Undie Run are so important.  It is why I write and share my story; I want the world to know that I have NF but NF does not have me! Thank you Cupid's Undie Run for giving me the stage to do just that!

This year my beautiful mother and fellow warrior joined the shenanigans of Cupid's Undie Run 2017. Don't telly her, but I think I have her hooked for Cupid's 2018!!

Once again, I was joined by great friends that contributed to all the craziness and laughter that goes along to any and all Cupid's Unfie Run races. We laughed, took part of the pre-race drinks, ran, and once again took part of the post race drinks!!  Alexa, Izzy and Ozzy, you three made this girl truly happy! Thank you for spending your Saturday with me and for partaking in the tiny wardrobe requirement!

Love ya!

Vacationing... NF Free

It is nearly impossible to ever truly go somewhere and not think about the fact that I have Neurofibromatosis of Von Recklinghausen. It's not that I want to forget or pretend I don't have it, it's that people don't let me forget. That is because people tend to gawk, point, or look at me with pity; so it is impossible to live without acknowledging that I have NF.
However, the older I get, the easier it has become to not let the gawking, the pointing, or the pity to weigh me down. I used to think that that was because I was with loved ones that did not let me be affected, but I recently discovered that I am the only one that can stop the ignorance from affecting me.
So, for the first time in my life, I did something adventurous and did not consider what role my NF would play. In April I went on my very first cruise with my cousin, Maria Camila. We both needed some R&R from our hectic lives that seem to never slow down. I not only spent time with my soul sister but also managed to do a lot of self-discovery and healing. I made a silent pledge to myself as I walked onto the ship that I would not let my insecurities ( and trust me, I have plenty) stop me from having fun or trying new things.
I thought to myself, I am going to be safe; If I were to get all gloomy and start shutting down, Mari will rescue me and bring me back to life. I knew she would save me. As it turned out, I ended up saving her! My cousin and I decided to explore Cozumel and visit one of the many beautiful Mayan ruins. We decided to visit this specif ruin because we were able to climb it all the way to the top.
We climbed Cobá, the tallest Mayan ruin in the Yucatan peninsula, measuring 137.795 feet with 120 steps. Half way up my cousin began having a hard time getting her footing and feeling comfortable on the ruin. We were unable to turn back because we had people behind us that were pushing and rushing us to get up. She kept doubting her ability and willingness to climb this majestic ruin.
Once on top, we were able to get our bearings, we realized that we were essentially in the middle of a stampede. People were constantly reaching the summit and rushing down with no regard for others. My cousin started having a panic attack right on top of the pyramid. To be honest, I too, was freaking out. There were too many people in the same confined area, people were pushing others to take pictures or to get down. There were a few risk takers that would walk on the ledge or just sit and soak up the sun.

We, on the other hand, had to figure out a way to get down safely to meet our tour guide. I asked my cousin for our backup, and I slowly coached her down the pyramid. People on either side were rushing by us, failing to realize that the drop could kill. Nonetheless, I was able to have my cousin focus on my voice and two simple commands, breath, and move. We moved slowly, but we got back down... only to realize that our tour guide had LEFT US!!!

After we got back on the ship, my cousin told me how thankful she was that I was there to help her through her panic attack and to guide her back down. I didn't think twice of what I was doing. After all, we needed to get back on our bus to get back on the ship.

Mari, however, had an entirely different perspective. Her take on our little adventure was that I ended up rescuing her, that if it were not for me, she would not be able to go down the pyramid. She reminded me that just because I have NF or see from one eye does not mean I cannot rescue someone in need.

Being single in 2017

So it has been a little over 3 months since my breakup. Three months may not seem like a lot, but after three years and going from seeing him every day to nothing, that my friends is not easy. The first two weeks of my breakup, I was surrounded by so much support that I did not fully digest the fact that the person I called boyfriend... no longer was... my boyfriend. By the third week my break-up became old news and even though I still had ( and still have) an amazing support system it no was longer a priority topic of conversation.

When Joe and I first broke up, I only told my innermost circle; my mom, brothers, and two or three very close friends. One of my brothers let my dad know, who then approached me. I reached out to my Aunt Andrea and her wife, Vane. I needed to speak to people that would encourage me with my decision and would validate my feelings, but at the same time would tell me to not look back and that everything in actuality would be OK.

I never ran to Facebook or Instagram to announce my break-up, nor did I send text messages to all my contacts updating them of my "relationship status." I kept it quiet because it was personal, and I needed time to mourn in private. The Monday after the break-up I went to work and surprisingly I held it together. I spoke with the administrative team for two reasons: one, I needed to let them know because I knew I was not myself and I needed them to be aware of what was going on; two, they needed to know that there was no reason for Joe to be on the property because he no longer was my transportation. That is it.

As time has passed, I have shared more about my break-up. Some people are just now finding out after the fact. Interestingly enough, I have learned that people are a lot more shocked that I was not "as open" with my breakup as I "should have been." Well, I am so sorry that I did not tell Facebook right away... yeah, right!
So it is April 2017, and I am single.  I am still figuring out who I am and what I now want. I am not worried about a future boyfriend because when the time comes, I will meet him. Right now I am just focusing on me!

On Depression

Cupid's Unde Run 2017, photo by Angela C. Velilla

What do you do when you are feeling down? When you are depressed and seem to be unable to pull yourself out of the deep dark hole that you have fallen into? 
Feeling sad or being depressed is something that does and can affect every single human on this planet. And so, since it is not related to NF, others may be more relatable with coping mechanisms for depression than with understanding how it is to live with NF. 
 My biggest bought of depression was caused by my father's infidelity and soon after leaving the family home. It took me a very long time to pull myself out of that hole and even though I have not been that depressed in a really long time, it does take constant work to keep myself somewhat even-keeled. Now I am no expert, but I would like to share with you a few things I do to keep myself emotionally healthy and positive. Please feel free to share your tricks on staying emotionally healthy and positive. 

5  SELF CARE TECHNIQUES 


1. Talk: talk to someone you trust. Someone that will listen to the words not spoken. They may not necessarily be able to "fix it" but the simple fact that they are lending you their ears will suffice. 

2. Laugh: Even though it may be hard, laughing will make feeling sad more bearable even if it is just briefly. Laughing may not cure your depression, but it will allow you to feel "normal" again. So, surround yourself with people that know how to make you laugh. 

3. Cry: It may sound counter intuitive but crying is very healing. When we cry, we are able to release a lot more of what is weighing us down. That is why after having a good-hard cry we tend to fall asleep.

4. Sleep: Now this one is much more challenging because when we are sad or depressed, we either tend to under sleep or over sleep. It is imperative that we try to find a happy medium. Too much or too little sleep can have catastrophic effects on the human body. 

5. Be active: Walk, run, dance, swim, etc., Do any physical activity outside your normal routine. Now, I'll admit, I am not much of a gym gal, but I do take Ki-Bo ( my dog) on daily walks. Walking Ki-Bo not only helps me but is also good for him. 

These are just five simple things that you can do to keep yourself emotionally healthy. Now, I know that we all do our own unique things that keep us above water so please share your ideas below.  


 
 
 

I am an NF Advocate

I hope that by now you, my audience, have realized that the reason I write is that I want to advocate for others that like myself have been born with Neurofibromatosis and are at times struggling to cope with it. I am very well aware that NF affects all of us differently and that my blog only speaks about me, but I hope that by reading my struggles and most importantly my accomplishments I will be able to help promote hope and a love for life.

I have always strived to be honest and open because that is the only way I can let you know that despite having NF I live a normal life. But there are times that I do disconnect from this platform because I need time to refocus and figure out how and what exactly I am going to share. Because after all, I am sharing my life and it is not always easy.

So the reason I am going down this rabbit hole is because I have been absent for the past few months due to going through a lot of interpersonal struggles. Many times I began writing about x,y, or z but never completed my story because I was not motivated. I could not shut down my brain enough to allow myself to freely express what was on my mind.

For the first time in a long time, I do not know what to make of life. The constant stability that I had carefully built is no longer there. And although change is good it is not always easy. I am growing and developing at my agency, but it is a slow process. I am starting to not be afraid of driving. I am wanting to go to graduate school but have yet to take the steps towards that.  And finally, I have to get reacquainted with myself because after three years I am single again.

We are a month and 3 days into 2017, and it has already been challenging enough to make me not want to keep on exploring the many possibilities. But I will not give up. I will continue growing and developing either in my current job or another. I will keep driving. I will go to graduate school. And finally, there is no question in my mind, I will find love again. I know all this because I want all of it!!

Oh yeah, join or donate to my Cupid's Undie Run team!!
Angie's Awesome Angels