23rd Surgery, Life with NF

 In June of last year, I became a patient of Moffitt's NF clinic; I was honestly apprehensive with the whole process. I did not want to be treated like a guinea pig, being poked and prodded for having a condition that affects everyone living with it so differently. My fears quickly vanished. Dr. Mahktari saw me as an individual, not as another case for the NF clinic; she and her APRN Amal spent a  solid hour conversing with me. It was not a Q&A. So I left my first NF appointment with five scheduled MRI/CT-scan appointments, an appointment with a neurosurgeon, and a geneticist. I had a busy NF-filled summer ( as if I never have an NF day!). 

Dr. Mahktari sent me to see Dr. Tran after I showed her two pin-prick size wounds on the side of my skull. I knew instinctively that the titanium mesh was causing the tiny wounds. When Dr. Tran reviewed my brain MRI and examined the open skin, he determined that at that time, in early July, it did not require surgical intervention; however, we would monitor the wounds for any changes. 

Fast forward to early October. I made an appointment to see Dr. Mahktari because the skin on the right side of my skull was red and sensitive. She agreed that the area where the wounds were appeared irritated and scabbed. Dr. Mahktari took pictures of my right temple where the wounds were and sent them to Dr. Tran's team. I received a call later that week from his team; they wanted to schedule an appointment right away. When I finally saw Dr. Tran, the scabbed area had expanded, and the irritation had increased; he cleaned and carefully removed the scabbed area, underneath was the exposed titanium mesh.

So now I am scheduled for surgery on 1/19/2022, making this surgery number 23. 

In preparation for this upcoming procedure, I took the initiative and got rid of my long locks! This surgery is one of the riskiest I had endured as it will involve replacing the mesh that I had placed when I was 17 years old. This surgery is anticipated to last ten hours and includes a skin graft.   I am ready to take on this surgery, just like I have with the 22 others. I will recover and live my best life. 

As always, I have NF, but NF does not have me! 

I invite you to follow me on my NF journey on Instagram and Twitter @Mynf_life 

He Stood Me Up... I Won

Yes, we are totally exposed when we are vulnerable. Yes, we are in the torture chamber that we call uncertainty. And, yes, we're taking a huge emotional risk when we allow ourselves to be vulnerable. But there's no equation where taking risks, braving uncertainty, and opening ourselves up to emotional exposure equals weakness.- excerpt from Brené Brown's Daring Greatly-  I highly recommend reading this book; the insight you will gain is priceless. 

Whichever way you look at it, being vulnerable is scary and uncomfortable. I share this because the fear of being vulnerable is not exclusive to having NF; it's the anxiety all humans experience. Opening up your heart and letting someone in is frankly terrifying. It is the pinnacle of vulnerability. It becomes significantly more problematic if previous experiences were not so good. Nonetheless, I believe it is a positive experience to dive right in and swim in the ocean of vulnerability. 

My biggest fear is rejection, especially from someone I am interested in being more than friends with, and yes, I am fully aware that we all experience rejection. However, I want to take a moment and discuss what it feels like to be rejected for something that you have no control over because this is something in particular that not everyone will experience. 

My facial disfigurement caused low self-esteem and confidence as a teenager and well into my mid-twenties. I did not feel beautiful, and therefore I did not believe anyone else would. Despite not feeling pretty or attractive, I still craved to have a high school sweetheart. I wanted my own Hollywood movie. Spoiler alert, I graduated high school never having been kissed! -Get it, Never Been Kissed, Drew Berrymore's 1999 movie? So technically, I did get a Hollywood movie ending.-

Even though I've experienced being crushed on and being a girlfriend, I still at times struggle with realizing that I am beautiful, attractive, and worthy. I am still very much terrified of not having my feelings reciprocated and of being rejected. These insecurities cause me to be hesitant about dating, especially after my three-year relationship ended. 

After a couple of years of being single and healing from an unhealthy relationship, I felt ready to join the dating pool again. I downloaded a dating app towards the end of October and found an instant connection with Bluto. Our conversations were fluid, easy, and at times profound. I took a risk when I told him about my 20 surgeries, NF, and prosthetic eye. I figured he had already seen pictures of me, so he knew I had a facial disfigurement. Why not tell him why I look the way I do? He would either unmatch me, or we were going to continue talking. His reaction could not have been better; our conversation continued that day and the following. 

After almost two weeks of continuous conversations, we decided to make plans and meet. I was beyond excited! The Saturday we were supposed to meet, he messaged me around 5 am apologizing because he had to reschedule. I was disappointed, but I understood, life can throw curve balls that we have to catch. So we rescheduled after he explained what happened. We agreed to meet the following Saturday. When Saturday came, he messaged me early in the morning requesting we reschedule to meet on Sunday because he forgot he had to take his elderly mother to the hair salon. I was not as understanding this time, but I was still eager to meet him, so I agreed to meet him on Sunday. 

I woke up Sunday with butterflies in my stomach; I had no cancellation messages, so I figured we were still on. I got dressed and left my house around 11:30 am to meet him for lunch. I arrived at the tavern, went inside, and sat at the bar near the entrance. After fifteen minutes, I called Bluto, but it went straight to voicemail. I did not bother leaving a message. Instead, I walked back inside and ordered a beer and food. 

Waiting for Bluto

Bluto stood me up. However, I still came out winning because I took a risk. I allowed myself to be vulnerable. I got out of my comfort zone. This experience has not detoured me on dating; I know I will find my Mr. Right. 

Permission to...

Life has been pretty busy for me this year. I know, how can life be busy when we are still living in a pandemic? Well, life does not stop just because of Covid. But honestly, the reason I have not posted is that I keep deleting everything I've been writing. I cannot count the number of times I have rewritten this post. Ironically my hesitation in publishing something is exactly what I am going to share in this post. I have a nasty habit of not allowing myself to just flow. I do not give myself permission to simply write and post for fear that my words are not the right words or that what I have to say is not deep or impactful. 

Not giving myself permission to just write and post does not stop with my blog, but sadly with many aspects of my life. This in the past has been a hindrance as I now recognize that I've missed out on great opportunities or have punished myself severely for what I believed to be catastrophic mistakes. 

Now I do not want to give NF the power and blame my condition entirely for this behavior, however, I do need to say that NF has contributed to my hesitation in many aspects of my life. And yes, I have always said that I am not my NF, that my NF is just an aspect of who I am; but you must understand that the person I am today, is not the same person that cultivated these fears and hesitations. 

Even though I have improved enormously in giving myself permission to feel, act, say, and yes make mistakes, sometimes, I have setbacks and simply freeze. Case in point, writing and posting this piece. 

So, my message to you is to give yourself permission to live your best life 100% of the time.  Allow yourself to feel every single emotion. Welcome uncertainty, take a risk, for all you know you are one step away from checking something off your bucket list. 

One of my goals this year is to not give fear power but instead to simply flow like water. 
 

ABC Affirmations

I recently saw this adorable video on my Instagram of a 4-year-old girl joyfully yelling positive affirmations. So I have decided to do my own ABC affirmations. I challenge you to do the same, and I welcome you to share it and challenge others as well. 

A is for awesome

B is for brilliant 

C is for caring 

D is for daring 

E is for energetic

F is for fearless

G is for greatness

H is for happy

I is for inspirational

J is for joyful

K is for kindness

L is for laughter

M Is for mindfulness

N is for nourishing

O is for optimistic

P is for playful

Q is for quirky

R is for resilience 

S is for sassy

T is for timeless

U is for unique

V is for valiant 

W is for winner

X is for xany 

Y is for youthful 

Z is for zen

Life, NF, and 2020

Where has this year gone? In January, I started a new job, and as I was getting my sea legs with Vocational Rehabilitation, Florida, I went into quarantine. I think I can speak for the majority of the world population when I say that this year has been unfathomable. COVID has wreaked havoc across the world, killing millions in its trail. I am blessed that I have not lost anyone in my inner circle due to this virus; however, 2020 has not been free of death for me. 

Towards the end of January, my friend Kathy passed away due to NF complications; her death shook me to my core. It was the first time that I saw my mortality; for the first time, I realized that NF could one day be the cause of my death. 

In September, one of my closest friends lost the love of her life. He was only 30. He was a healthy man by all accounts, but he had a pulmonary aneurysm one night in early September and did not recover. An autopsy later revealed that he died due to heart failure. Two weeks after his death, I received a phone call from Colombia; Uchi, the woman that had been my nana, was in a medically induced coma. She had suffered a pulmonary aneurysm and two seizures within hours. Doctors ran multiple tests, but there was no brain activity. She died two days after the aneurysm. I decided not to share the death of Uchi with my friend, she was mourning herself, and I could not burden her with my loss. 

I most recently experienced the loss of my fourteen-year-old boxer, Ki-Bo. On November 28th, I said good-bye to my most loyal companion. A month after his passing, I still expect him to be at the door when I get home. I miss hearing his snores. I miss his licks and wet-nose kisses. I miss his head on my lap and his puppy-eyes digging into my soul. Ki-Bo, helped heal my broken heart after my dad left and kept me company as I recovered from surgeries. He forced me to get out of the house and go on walks when I was depressed. Ki-Bo had the most fabulous happy dance, those that were lucky to witness his wiggle and four-legged jumps know what I am describing. He will forever be my fur-angel. 

COVID altered many plans, for example, my trip to Paris, France, to visit my best friend in September. My trip has forcefully been postponed until this pandemic no longer is. I also planned on taking the GRE in October, but a week before my exam, the test center closed due to COVID. Now I am taking the test in March 2021. I am not too bombed about my exam being rescheduled; I actually need the extra study days. However, I have not taken advantage of this gift that COVID has given me; instead, I find myself with what I have named twenty-twentyities. Do you recall seniorities? Well, same concept but for the entire year of 2020. 

Despite everything that happened this year, I have many reasons to be grateful. I choose to hold on to those instead of gravitating towards the moments of 2020 that shattered me. It's the same concept I utilize when dealing with NF. I know that this concept is hard to grasp for many but think about it, by actively choosing to look at all the good in your life, life becomes a little easier; this does not mean that you ignore the hurt and pain; it just means that you acknowledge it but choose not to make it the center of your life. 

All I have seen in social media is how eager people are for 2020 to end. However, when the clock strikes midnight, nothing changes. Time is relative, and unless you actively change, 2021 is and can be just like 2020. We are currently living through a pandemic, and despite having multiple vaccines, it does not change the fact that COVID is alive and, for lack of a better word, thriving. The only way that this virus will weaken is if we all play our parts and consciously make an effort to wear masks and keep gatherings small. I do not want to get political, but this year has highlighted how racially driven this country is and how racism is a pandemic itself in the US. There is so much that needs to improve and change for humanity to continue because we will self-destruct at this rate if nothing changes. 

For now, my goal for 2021 is to be a better version of 2020 Angela. I am happy to send off 2020 with my family and start 2021 with them. 

Happy New Year! 

Ki-Bo

Ki-Bo means hope in Japanese, and that is exactly what he did when he entered our lives. Ki-Bo became part of our family in October of 2006 at four months old. This past Saturday, November 28, at 14 years old, I had to say good-bye to him. My heart is shattered, and I cannot begin to express the sadness and emptiness I currently feel. I woke up Sunday morning and was startled when I did not see his sleepy face lying on his bed. Tears immediately poured out as I realized that I will never again wake up to his snores or his cold snout. I miss him terribly. 

My mom, brothers, and I got Ki-Bo a month after my dad left. A few weeks before my brother Fransico brought him home, our friend Dai helped pick out a name for the soon to be the newest member of the family. I still remember the five of us huddled around the kitchen island, my mom, my brothers Andrés and Fransico, Dai, and me. My mom asked Dai, what the word for hope was in Japanese, he responded, Ki-Bo, and it stuck. 

His first weekend with us, he got stung by a bee above his eye during his first trip to the park. His face was so swollen, but it did not diminish his spirit of curiosity and playfulness. Ki-Bo was not the typical dog that chewed on shoes; instead, he ate plants. He once ate five orchids my mom had bought on sale.  He was bilingual and responded to numerous names, always coming to the person that called him with big happy eyes, floppy ears, and a huge smile. 

Ki-Bo brought life back to our home after my dad left,  with his spunkiness and clumsiness, tripping over his oversized paws. He filled the void left behind by my father. He helped heal the four of us. I grew accustomed to coming home to his happy dance and kisses, making his loss so much more heartbreaking. I miss him, I miss playing hide-and-seek, I miss walking with him, and I even miss waking up at 3 in the morning so he can be let out to pee. 

After twenty months of battling cancer and arthritis, Ki-Bo is resting and in puppy-heaven. I came home Friday to find him lying under the coffee table, unable to get up. I helped him up, but his hind legs gave, and he fell. I thought it was because his legs were numb, but I was mistaken. He lost his ability to walk and was in tremendous pain.  My handsome 14-year-old pup gave me one last wet- cold snout kiss as I gave him his medication on Friday night. He slept through the night and woke up with more pain on Saturday. I called the veterinary's office early Saturday morning and took him in at 9:30 am. He was gone by 10:30 am. 

My house feels different, odd, empty, too quiet. I know it's going to take time for me to become accustomed that he will never again wake me up at 3 in the morning to pee or give me puppy eyes so I can give him some of my food. Ki-Bo may no longer sleep at the foot of my bed, but his essence, his spirit will always be with me. 

Cyberbullying

 

I find myself having difficulty writing this post because every time I start typing a knot forms in my throat and my eyes fill with tears. Last week, Lizzie Velásquez, an influencer, anti-bully advocate, author and, public speaker, spoke up against a horrific new trend on the TikTok app. 

Users of the app use a Snapchat FaceTime filter to conceal their faces with someone else's face. The idea is to use a  silly, innocent picture to be funny. However, this trend has quickly gotten out of control. As Lizzie shared, she has once again been the target of bullying on social media. A mother, a TikTok user, thought it was acceptable to misuse a picture of Lizzie to show her young son his new teacher. In the video, you can see the mom smile as she turns the phone around, and then you see his horrified reaction. Like myself, Lizzie was born with a genetic condition; her physical appearance is atypical, like mine. I want to clarify that this is just one example; this was not a one time misuse of the trend. 

This mother and anyone that partakes in this trend should be ashamed of themselves. Do they not realize what they are doing is called cyberbullying? Just because you find an image online does not permit you to use it maliciously. Even if the owner of the image never finds out, it is still wrong. Do these people not consider the long term effects of their joke? The mom who showed her son Lizzie's picture is teaching him to be scared of people that look different and that it is acceptable to make fun of others.  

As an adolescent, my classmates bullied me. My haven was my home; I loved Friday afternoons because the bullying would stop with that last bell, and that meant I would have two whole days where I would not have to see my classmates. Unfortunately, with apps like Instagram, TikTok, and Snapchat, among others, it is difficult to escape from bullies. I consider myself lucky because cyberbullying was not as prevalent as it is today. Maybe, I am mistaken, but at least I did not experience this form of bullying. I cannot imagine not being able to escape from my tormentors and not being able to shot it off.

When will society as a whole realize the repercussions of bullying? When will adults recognize that children mirror their behavior? If that behavior is bullying, then it is cemented in young minds that it is appropriate to ridicule others. This time we are having this conversation due to TikTok. Sadly, it is just a matter of time until it is another social media platform. 

I ask that you not promote trends that have the tendency to harm any living organism because, quite frankly, bullying does not stop at humans. Trends like the TikTok one, cause unforeseen harm that participants do not take into account. Please be vigilant if you see something inappropriate; I ask that you report it because that is the only way to make it stop. Lizzie is an incredibly brave woman; she has become the Joan of Arc of antibullying.