Thursday, January 4, 2024

Social Media-ing with NF

 I have been contemplating sharing this experience because I felt ashamed for being such a fool and was angry at myself because I fell victim to a wanna-be influencer on Instagram. While I never intended to talk about it, NF has gotten in the way, so I will be vulnerable and share. 

The day before Thanksgiving, I was walking into my local grocery store when a man approached me. I noticed him and his companions a few feet away as I exited the car. The man, let's call him LeFou, still walking behind me, asked me if I wanted a blessing; I turned around, and he again asked if I wanted a blessing. I thought he would say a prayer because, in the past, this has been my experience. Suddenly, one of his companions got right before us while the other two popped confetti canons as LeFou blessed me with cash. In the video, I am in complete shock. I took this cash and am ashamed and angry for doing so. I still have the money; I feel dirty for having it and do not know what to do with it. The whole interaction took at most 30 seconds. In hindsight, I should have said no. I should have given him the money and asked him to delete the video, but I didn't because, at that instant, I did not consider the events that would follow. 

For those 30 seconds, I forgot all about NF and my facial difference. I know perfectly well that if I did not have a facial difference, this post would not need to be written, but alas, NF...

Two weeks later, my little sister sent me a message on Instagram and asked me about a confetti shooting video I was in and a man giving me cash. Ironically, she was not talking about the video that LeFou made but one that another Instagram influencer did; we shall call him Timon. Timon has made his mark in the world of social media by making satire and commenting on videos like the ones LeFou makes. Timon claims I was "hired" because he knew Lefou would profit from the video. Timon also argued that LeFou was not being genuine with his actions. My little sister, being her incredible self, reached out to Timon and cleared up a few things about me and what had occurred in the video. Her interaction with Timon led to Timon and I communicating on Instagram. 

So, now I am not on one but two reels on Instagram. Both platforms have well over 500k followers, and although the intentions of both reels are different, the outcome is the same: me. I have become the punch bag for awful and hurtful comments. Both platforms have put me on center stage and left me there for their audiences to do as they please. After speaking with Timon, I asked him to give me LeFou's Instagram, and I regretfully decided to view the clip. I was disgusted at the clip's presentation, but even more so at the comments, people made. I've read comments on both platforms, and Timon's followers are not as ruthless; if anything, the comments are more geared towards LeFou and how distasteful and disingenuous he is than on my physical appearance. Also, Timon has responded to a few of his followers and "defended" me.

After talking with Timon, I messaged LeFou, hoping he and I could clarify a few things about the video and his followers' comments. It has been almost three weeks since I sent him a message and crickets. This, unfortunately, proves Timon's point that all LeFou cares about are views, likes, and comments, even if they are at my expense. The vast majority of comments on LeFou's platform are beyond disrespectful. Seeing the GIFFs and others laughing at them hurt me to the core. I do not understand how someone who is "blessing" people allows followers to leave comments filled with hate. LeFou is not a kind human being; his blatant disregard for my message and inability to stop cyberbullying only prove that he cares about himself and not the people that he claims to be "blessing."

After feeling like I lost a bit of myself due to social media and the desire to gain views and likes, I decided to take control of the narrative as much as possible and commented on both videos. I first commented on Timon's platform, not expecting much but hoping that my comment would not backfire; it didn't because I have received likes, comments, and followers.

Yesterday, 01/05/2024, I decided to view the comments on LeFou's video; I think that subconsciously, I knew that I needed to see the painful words to snap and comment. To take back control, so that is what I did. Surprisingly, I've received likes, comments, and a few followers as well. 

I do not know what is to come due to these two clips that are now forever part of the social media realm, but I know that I am more determined than ever to spread my message of acceptance, tolerance, and love for all. People need to realize that words hurt. Words have the potential to cause irreparable damage. I know this because I still have vivid flashbacks from middle school, and I am an adult woman in her 30s. 



Thursday, November 16, 2023

The Culprit is Gone

One month post-up, and I feel amazing. Recovery from this surgery has been so different when compared to my traumatizing previous surgery. With this one, there was no ICU and, most importantly, no trach. In recovery, as a nurse checked my vitals and dressing, she asked how I was feeling. I nonchalantly  responded with, " I am good, but the doctor didn't give me boobs." The nurse stopped what she was doing, pausing to ensure I was okay before laughing. I followed up by saying, "So if you were giving me a neurological test, I just passed it, right?" This time, she continued working on me and said, " Yes, yes, you did." 

By 8pm on 10/16/23, I was transported to my room. Unlike my previous surgery, I was cleared to consume clear liquids. After 20 hours of not eating, I wanted to put food in my stomach, but unfortunately, the cafeteria was closed. Thankfully, my friend Pachy, who had accompanied my parents in the waiting room during my surgery, offered to get us food. That evening, I had the most delicious wonton broth. After my friend left, I settled down ( as much as possible, given I was in a hospital bed) and attempted to sleep. I was surprised that I could sleep on and off throughout the night, only waking to readjust and when the nurses would check my vitals. 

Early the next morning, Tuesday, 10/17/2023, Dr. Tran walked into my room as I fell asleep and enthusiastically announced that I would be going home by the afternoon as long as I continued to progress. Challenge accepted! Since I had been tolerating water and broth, I was cleared for a regular diet; I ordered scrambled eggs, bacon, and tea for breakfast! Later that morning, after I had consumed my first real meal in 48 hours, my nurse came into my room for my morning exercise. I knew that if I did well on my loop around the nurses' station, I would get brownie points, and the chances of being released would increase, so I did two loops. I know I am an overachiever. 

Shortly after lunch, my nurse walked into my room with a huge smile and informed me that I would be released that day! Both my surgeons and Dr. Yasukawa ( with infectious disease) signed my discharge paperwork. I was only being held back by the hospital pharmacy for my medication; other than that, I was set to go. I made it home just in time for the evening news! 

For the last four weeks, whenever I have been asked how I am feeling, I have responded with, " I feel like me again." My family and friends who have seen me have shared my sentiment, adding that my entire face changed, including my facial expressions. Even though I still have facial paralysis and a skin graft that protrudes, for the first time in almost two years, I like the image that stares back at me in the mirror. 

Now that the mesh is gone and there are no open wounds, I can focus on other aspects of my life, such as renewing my Colombian passport to visit my family! I honestly do not know how I pulled myself together enough to pass my first semester of graduate school with two A's because the level of depression and anxiety that I was going through was severe.  I would like to think that I managed work, grad school, chronic infection/wounds, and my mental health because I have a whole lot more self-awareness than I did in my twenties and because I reached out to my people when I needed to talk. Whatever the reason that has gotten me through these last 20 months, I am grateful and thankful and pray for continued strength because I know this was a battle win, but there is much more to come. I am ready!



Friday, November 3, 2023

Removing the Culprit


 On October 16th, I walked into Moffitt for surgery number 24. The purpose of the surgery was to remove the titanium mesh. It's ironic how the mesh that was supposed to protect my brain and keep me safe and healthy caused havoc in my life. My body ultimately rejected the titanium mesh. Thankfully, despite the rejection, the skin flap remained healthy. 

I did not want another surgery. I was traumatized from the last surgery, and for the first time in my life, I was afraid of having surgery. However, after 40 sessions of hyperbaric treatment, MediHoney, collagen, and transplant of cellular tissue, the wounds not only remained open but had gotten bigger. The entire medical team at the wound care clinic did everything imaginable to help my body heal, but nothing worked. 

These past 18 months have been beyond difficult for me. My depression and anxiety were evident. I was not in a good place. My thoughts were dark. I was hopeless. I felt as if I was an intruder in my own body. I was angry that after everything I have been through, my body was failing me for the first time, and I did not understand why. I found it challenging to look in the mirror and see how surgery #23 drastically changed my face. Facial nerve paralysis, a bulging skin graft on the right side of my face, and a trach scar were the reasons I feared going back into the operating room. If those were the results of surgery #23, how would I look after another? My typical sunny disposition lessened as the wounds remained open and more prominent, and the infections remained. For well over a year, I was on two antibiotics; from July to October, I was taking two different antibiotics to kill and prevent the re-emergence of infections. I feared that I would have to take these antibiotics for the rest of my life and the adverse effects they would have on my liver and immune system. 

In mid-August, I spoke with Dr. Patel, head and neck surgeon, and agreed to surgery. His initial plan was to only remove the exposed mesh, leaving the majority intact. He spoke of using a wound vac and other grafts, such as cadaver skin. I left that appointment feeling defeated. When I got home that afternoon, I sat on the sofa and cried. I cried because I was afraid. I cried out of anger. I cried because I felt powerless. I cried because I missed being me. I cried because I was tired of having to be hypervigilant with the wounds. I was tired and wanted the mesh out of my body, but my doctor did not believe the entire mesh needed to be removed. 

In September, I spoke with Dr. Tran, the neurosurgeon. He proposed removing the entire mesh because that was the only way to prevent my skin from opening again. He explained that my body rejected the titanium and that having a persistent infection does not allow healing. I expressed that I agreed but that Dr.Patel only wanted to remove the exposed section because he did not want to lift the entire graft and risk the graft being compromised. Dr. Tran informed me that he would speak to Dr. Patel and recommended that the whole mesh be removed. I left that appointment feeling less defeated but filled with uncertainties. 

I sought a second opinion. I initially attempted to speak to Dr. Johnson, a surgeon at Shands Hospital in Gainsville, but that proved more difficult than I imagined. This surgeon's office is antiquated as they only accept referrals via fax. I spent the greater part of three days and over 50 attempts sending the required documents to two different fax numbers to Shands from my work fax to no avail. I finally sent the documents to Dr. Johnson's office from my PCP's office. I called Dr. Johnson's office the following Tuesday, and they confirmed they had received it; I was informed that I would receive a call within 72 hours telling me if my case would be taken. Two weeks passed before I heard from his office. 

While I waited to hear from Dr. Johnson, I was connected to Enzo. Enzo is a friend of my parents and a plastic surgeon that operates in Brasil and Colombia. He and I spoke about my previous surgery, the wounds, and my body rejecting the mesh. He explained that he did not have experience with a case such as mine but offered to speak to a fellow surgeon in Brasil that did. With my permission, he sent her a brief medical history with pictures. Within 48 hours, I talked to Dr. Cardim; she explained how she would handle a case like mine, stating that she would remove the entire foreign object and allow the body to heal before operating and, if needed, placing something else in the area. In my case, she explained, she would not operate again due to having a history of rejecting foreign objects. Dr. Cardim advised me not to pursue surgery with a new medical team; she explained that Dr. Patel and Dr. Tran know my case and body best and that a new surgeon could potentially be more damaging because they were not part of the medical team that did the skin flap and mesh. Deep down, I knew this, but hearing this from a surgeon eased my anxiety. 


Part 2 coming soon. 


Sunday, June 4, 2023

My NF Life Update, First Half of 2023

My last post, Finding My Attractiveness...Again. It was written half-heartedly, an attempt to publish a post since I have not been as active on my blog this year. My friend Izzy mentioned my lack of blog posts during Cupid's Undie Run in February. I considered removing my latest post but opted not to because even if I am not a fan of what I have written, it helps at least one reader. 
Cupid's Team 

 I've been away because I'm uncomfortable in the body I am currently in. I have been in and out of depressive moods since I was released from the hospital last year. I do not identify with the reflection I see, which devastates me. I desperately yearn for my smile. I am exhausted mentally and physically. 

In December of last year, I was referred to a wound clinic for medical care for the two temporal wounds. Since January of this year, I have undergone 40 hyperbaric chamber treatments and various therapies, such as Medahoney and topical medications. Additionally, I am getting lymphedema massages through Moffitt to aid in the reduction of the lymphedema I developed after surgery last year. 

 Overall, there have been improvements to both the wounds and lymphedema, which is reliving. My medical team is doing everything possible to prevent me from undergoing another surgery, number 24 or 25... depending on who you ask! In order to tolerate the hyperbaric treatments, I had to have a tympanostomy tube, AKA ear tube, placed in my left ear. It was a five-minute procedure completed at my ENT's office, I do not consider this a surgery, but my mom disagrees. What do you think? 


So, this has been my 2023 thus far. It has been a challenging year, but nothing I cannot handle. I know better things are coming to me; I must first overcome this health hurdle.

Tuesday, April 11, 2023

Finding My Attractiveness....Again

I am a self-proclaimed hopeless romantic; I create love stories in my head as I lay in bed, in the shower, or while I stare blankly at my computer screen instead of writing a case note for the meeting I just had with a client. I imagine all the adventures we will have, the meals we make, and even the fights and the reconciliations. Basically, I create an entire relationship in my head. The last mental relationship I started was with Tats, aka Stretch. The details of when or how I met Tats are not necessary. What is important is that I fell for him; Tats became the main character of my love story because I needed someone to replace Lovebug, someone to fill the void he left. 

Tats entered my narrative where Lovebug exited. I imagined Tats standing barefoot, Colombian beach sand beneath him, standing tall, wearing cream linen pants ( even though he hates wearing pants), and an ivory short-sleeved Colombian guayabera. Our family and friends standing around him as I make my grand entrance and walk toward him to celebrate our union. We would have our first kiss just as the sun touched the water. Yes, I am fully aware that this sounds corny, but it's the story that Lovebug and I wrote together, and even though he is no longer in my life, I still want to experience this.  

Chattanooga, TN. 1/2023
The true story of Tats is that there is no romantic story to be had; Tats is a sweet, friendly, intelligent, caring, handsome, and ridiculously tall man that I crush(ed) on. Unfortunately for me, we did not want the same things. When we first met, he told me he was attracted to me. I became all giddy with the idea that he was attracted to me. Tats was the first guy I was drawn to after my breakup with Lovebug. He was the first guy I allowed myself to develop feelings for post-Lovebug. I was excited to share myself with someone I intentionally saw a future with; however, this narrative I created in my head and heart was not reciprocated. Tats was honest and told me that despite being attracted to me, he did not want more than some fun.  I, too, want to have all the fun, but I also want more, and just because he is not going to give me everything does not mean I need to deny myself the fun that we both want. 

I've always questioned my attractiveness and, therefore, at times, doubt those that openly tell me they find me attractive. I know it stems from insecurities and low self-esteem that play into my depression, leading me to believe that someone cannot see me as beautiful. I know it's a damaging and hurtful cycle,  but I am aware of this and work on my inner voice daily. So, after undergoing surgery last year and seeing my new facial appearance, my self-love plummeted. The hateful voice became louder, my insecurities strengthened, and my fear of being unattractive became more real. 

My date with an Airman back in August only confirmed my insecurities when I received a text message a few days after our date saying, " ... I don't think I'm interested in continuing our exploration of each other. My decision is really just based on the difference in lifestyles." I call BS on that statement. How different can our lives be? After all, he was the one that reached out first on the dating app. I was honest on my profile and spoke openly about my NF and the surgery I was recovering from. I had recent pictures, so he knew how I looked. He was the one that wanted to meet in person. 

So I have two thought processes on why he made that statement. Irrationally, I believe he realized after meeting me in person that I was not worthy of his time and not pretty. I would be more of a problem, having to explain to family and friends why the right side of my face droops and why I have scars and a "bump" on my face. Rationally, I believe he realized that he could not handle being with someone like me, not just because of my NF and facial difference, but because I am too much of a woman for him. Despite currently being depressed and lacking self-love, I am not meek; and some men do not like women that are strong-willed and independent. 

Sadly, these days I tend to be more irrational. Thus my fear of being unattractive and not having my  Colombian Beach wedding feels real. Rationally, I am aware that I need to first work on myself. I must redefine my attractiveness before seeing others have always found me worthy and attractive. Because for all I know, Tats never stopped being attracted to this 5'2" petit Colombian chick. 


Art by: Banksy, Banksyland Exhibit St. Petersberg, FL. 2/2023

Saturday, December 31, 2022

Farewell 2022...

As 2022 comes to a close, I reflect on the journey this year has taken me on, and I have concluded that 2022 was a year of change. I knew going into this year that by no means was 2022 going to be easy as I started the year with significant surgery, but I did not anticipate that I would end the year with a similar wound then that that caused the surgery. 

Unlike the first wound that led to an almost ten-hour operation, tracheostomy, 31 staples on my left thigh, over 40 stitches on my head, and a week-long stint in Moffitt. The two minor wounds on my temple were caused by gravity, and my skin not being as elastic due to previous surgeries. Early in the recovery process, my surgeon added additional stitches in the incision site that had begun to open, unfortunately. It did not work. My medical team and I hope the two small openings will close by granulation because I want to avoid going under the knife in 2023. 

So here I am typing away on 2022, and I find it challenging to narrow down the most significant moments of the year because it was not all about recovering from my 23rd surgery. What follows are what I consider the most noteworthy moments of 2023.  

In July, I flew to Chicago, Illinois, and attended the first annual NF Summitt. Attending the summit was an incredible experience because I was forced out of my comfort zone. Even though I knew I would be surrounded by my NF community, I felt uneasy because I was in the midst of recovery and not happy with my face. However, my fears and anxiety evaporated when I met two NF moms at the airport; the three of us carpooled to the hotel. Meeting these two moms made me feel at home; this feeling of love and warmth carried on until Sunday, when I said goodbye to all the friends I had made. While at the summit, I was invited to participate in an interview for a medical program, Tu Salud Tu Familia ( Your Health Your Family), and although the interview has not aired yet, I am excited to see the lasting effects it holds not only for the NF community but primarily for me, as an advocate. The interview for Telemundo was not the only interview I participated in; I also participated in a brief Q&A in the media room for the Children's Tumor Foundation. My Q&A was utilized for the Children's Tumor Foundation's 2022 fundraiser Believe campaign in November and December. 

In August, I went on a date with an Airman I met on a dating app. Even though nothing flourished after our date, I am glad I allowed myself to meet someone that expressed an interest in me. I was transparent with my NF and surgical recovery on the dating app. The Airman called me brave, but I call it vulnerability at its best. Dating has not always been easy for me, not because of my appearance or NF, but because of my self-esteem and self-love. Deciding to date while recovering from major surgery is scary
because I am exposing myself to rejection, but how can I expect to meet my Mr.Right if I do not put myself out there first? My afternoon date with the Airman helped redefine my nonnegotiables for dating as I realized how much of a catch I truly am because I need a partner that fully embraces my NF journey. I do not need someone that gives me the copout, "difference in lifestyles." 

In October, I was contacted by a production company to take part in a reality-like TV show. The show's premise is to feature individuals with facial differences and have a medical team improve their lives through surgery. I declined the opportunity to be on a national TV network because I felt like I would be on a modern-day freak show; I say this with the utmost respect for those individuals that decide to participate in this program and others like it, but being part of a medical program that focuses on "fixing" a physical feature is not something I want to be part of. I have struggled for more than half my life in accepting and loving my body and self that I do not wish to undergo surgery if I do not need it. I also felt as though I would not have control of the narrative and felt uncomfortable allowing someone else to write my NF story for ratings. 

2022 has been a year that has forced me out of my comfort zone because of my 23rd surgery and the various opportunities I had to share my NF story. In 2023, I  look forward to continuing my recovery and my wounds fully closing. For this upcoming year, I want to continue sharing my story through interviews and public speaking because NF visibility is important. 





Sunday, August 7, 2022

Six Months and Beyond

In December of 2021, in Dr. Patel's office, I did not foresee the magnitude of this surgery. I was unaware of how much my face would change, of the 10.5-inch scar on my left thigh, or that I would wake up with a tracheostomy. Going into surgery, I understood that my medical team would be changing the titanium mesh I had since I was 17 and was now exposed due to my skin opening. I understood that this surgery was anything but cosmetic. I needed to have this surgery to prevent the infection that caused my skin to open from spreading to my brain, and potentially the same infection I currently have and the reason I still have two minor wounds on my incision site. And so, I am six months post-surgery, and despite some minor complications, I am healthy and happy. 
Willis Tower

 Even though I have primarily focused on healing from major surgery this year, I have experienced memorable and beautiful moments outside my recovery from this operation. I applied for a scholarship to attend the Children's Tumor Foundation's NF Summit in Chicago
in mid-May. The week of my birthday in June, I received an email informing me that I was one of the scholarship recipients. Tears of joy rolled down my face as I read my award email; I was awarded all summit costs, including airfare. 

Fellow NF Heros, NF Summit, Chicago, Illinois
On July 21st, I boarded a flight for the first time since 2018, headed to Chicago, Illinois; I was excited about what was to come. What followed were five days filled with self-discovery, networking, and learning the latest updates on NF. I met beautiful people who, like myself, are battling this relentless condition, we met because we all share NF, but we connected because we love life despite NF. I believe that one day there will be a cure for NF. I believe that one day, no other little girl will be called a monster for having a facial difference. I believe in a life without NF. Until this day arrives, I will advocate and share my NF journey. 

In other news, I am in the process of getting a new prosthetic! My current eye is over ten years old and no longer fits well. As in, it has fallen out! I don't mind as much if it falls out at home, but falling out in restaurants or a park, as it has recently, is another story. Randy, my ocularist, has me excited with the prospects of my new eye. The new and improved prosthetic will be smaller and lay flatter, which will allow for more movement. He says that changing the size and how it fits will make the eye appear more realistic. If all goes well, I should have a "pretend" eye, as my niece calls it, by early September. 

**Stay tuned. Big things are happening**😉