#NoNFNovember

 I had the great honor of contributing to the Children's Tumor Foundation's No NF November campaign. I invite you to read the stories of other brave NF HEROES! 

Below is my story! 

I was diagnosed with Neurofibromatosis at birth after doctors thought I had a tumor due to my right eye protruding and having a deformed right parietal bone. I had my first surgery at eight days old to relieve the eye pressure caused by Congenital Glaucoma. I have never experienced a moment in my life in which NF has not played an integral role because NF has always made its presence known due to my facial difference.

Until this year, I thought that the hardest part of NF was living with a face that is not normal. A face that causes strangers on the street to gawk and point. A face that made me a target for bullying at school. A face that made me unworthy of love, I know now, as an adult, that my face is just a face and that strangers will gawk and point, but not all strangers. Yes, I was bullied at school, but I also made friends who defended me against bullies. And most importantly, I am worthy of being loved, not because of my face, but because we are all worthy of love.

In September of this year, after having my annual mammogram and breast MRI, I received the call every woman dreads. My doctor at the NF clinic informed me that the MRI detected an abnormal mass, and while I am statistically too young for breast cancer, with NF, I am not. My doctor informed me that she and the radiologist were recommending a sonogram of the breast and another MRI, and depending on those results, a biopsy may need to follow.

I remember getting off the call and silently crying in my office as I slowly digested the information that my doctor shared. I was scared. I was mad at my body for betraying me after everything that we had gone through the last three years, but through the tears, I knew I would be okay. I had the sonogram and the second MRI, and due to inconclusive results, a biopsy was recommended. My fear of having breast cancer intensified as the nurse practitioner informed me that the sonogram and two MRIs had found abnormal masses, but they were unsure if it was the same mass or two different masses, and because of this, I may need two biopsies, depending on the findings of the first.  

On September 29^th, I underwent a sonogram-guided biopsy, and a few days later, I received a call stating that everything came back normal and that I did not need to worry.  I share this story not to scare you but to make you aware that individuals with NF have a higher risk of developing breast cancer than the rest of the population. I feel as though NF and breast cancer are not spoken about as much, but we need to talk about it.  NF can cause so much havoc in our lives that doing preventative screening can save our lives.

Neurofibromatosis affects everyone so differently; this is my experience, this is my NF life, but I am not NF. I am a lot more than a woman with NF who has undergone over twenty surgeries and medical procedures. I am an advocate. I am brave. I am a fighter, and so is everyone who lives with this relentless condition.

Good-bye 2024

 It is the last day of 2024, and I can honestly say that I am happy to have had a 'boring' year. After having two difficult years, I was ready for a year that did not involve daily visits to the wound care clinic for hyperbaric treatment, high antibiotic doses, and other medical treatments in an attempt to close the two wounds that had formed after my 2022 surgery. 

In January of this year, I was given the all-clear, and in October, I celebrated one year since my last surgery. I spent the better part of two years focusing on healing physically. Unfortunately, I dismissed my anxiety and depression, but now that I am healed, I have been focused on my mental health. I still struggle with the reflection that stares at me each day. I am not happy with my smile; however, I know that with time, I will once again love my smile. 

This year, I stepped away from blogging and posting on @mynf_life. I have steadily lessened my digital footprint because I have been uncomfortable with who I am, which has decreased my confidence and desire to share. It makes me sad that I did not share more because I did have stories and moments of this year that I felt were worth sharing, but I did not due to self-doubts and negative self-talk. 

So here I am, the last day of 2024, and as I reflect on this year, I would like to share impactful moments.

In April, I participated in This is My Brave college edition. Unfortunately, the recording is still unavailable, but I promise to share it as soon as it is. Standing on stage and sharing my experience with bullying was cathartic. 

Also, in April, I flew to San Antonio, Texas, for the NF Summitt. I met and reunited with incredible individuals, one of which is Amit Ghose, an amazing NF hero who lives in London. Amit and I initially connected on Instagram, and when we learned that we would both be in the same city, we instantly knew we would need to meet in person. I am so grateful to have met him because our stories are similar. 

In my pursuit of finding love, I signed up for a speed-dating event with my friend Chantal. It was the first time I had done something like this. To say I went out of my comfort zone is to put it lightly. The whole event lasted about two hours. I spoke to about eight men for a total of six minutes each. Even though I did not have a 'love connection,' the experience was worth it, and I would absolutely do it again. 

I started my second year in my master's program in August; as of this month, I have 21 credits and 43 to go! Getting into graduate school has been one of my most significant accomplishments to date, and I am excited to graduate in May 2027. 

And there you have it, my year in summary. I have experienced additional gains and losses, but I prefer to keep those private. I am still figuring out how much of 'me' I will share on my social media accounts. I have become more apprehensive of what I share since my cyberbullying experience last year, yet another reason why I have significantly reduced my presence on here and Instagram. 

All right, this is all. Happy 2025!!

Social Rejection

 This week, I have felt an overwhelming amount of sorrow. I cannot identify an exact trigger that has caused me to feel this way, but I cannot ignore it. I don't know if this is the start of episodic depression or if it's my subconscious is filtering into my conscious, and my fears and insecurities are sipping through. That annoying, horrific voice is taunting me, and I am doing my best to silence it. After introspecting, I realized that Brianna Solari's story affected me more than I initially realized. 

I strive to live and redefine society's beauty standards, but I am struggling. I surround myself with incredible souls who love and support me unconditionally and always uplift me. With them, my mind is quiet, but when I am forced to be with my thoughts, my fears and insecurities creep up. I first learned of Brianna Solari on Instagram. I quickly read her story, making a mental note to read further, wanting to get the full story instead of an excerpt. Yesterday, I did, and I made my own post on Instagram. Why, I do not know? I have no idea how my anger and complaints against Southwest will make a difference. My voice is not loud enough. All I can do is share her story in the hopes that it will not be forgotten and that no one else with NF or any other physical difference has to experience discrimination and humiliation like that again. 

I understand the fear of communicable diseases, especially after COVID-19. However, that does not give anyone permission to discriminate and spew hatred because someone's physical appearance makes them uncomfortable. On the day of Brianna's flight, she stood precautions, wearing a headband and a mask, effectively covering most of the scabs on her face. The scabs were the result of surgery she had the day before to treat her NF. Now, if the scabs were wet or secreting puss, I would understand Southwest taking precautions. However, Brianna is a nurse, so she would know better. Also, her doctors would not sign off for her to go home if she was not healing according to plan. 

Yes, Southwest did not handle this well, but I assure everyone that this happened because one passenger complained and threatened with something; the crew member did not see another resolution other than escorting Brianna off the fight. Brianna was booked on a flight five hours later, but not before having to disclose her medical condition and her surgeon providing a letter confirming that she was healthy and did not pose harm to anyone. All of this could have been prevented if the flight crew had agreed to read over Brianna's discharge papers, but they refused, insisting that she needed to be seen by EMS. Per the various articles and news stories I have seen over the last 24 hours, she was not checked by EMS at the airport. 

I know some may think or say that I am obsessing over this incident, but I do not think so because this could be me, my mom, anyone in the NF community, or anyone with a facial difference, and that makes me angry and hurt. 

I hope Brianna knows she is not alone and has a sister in me. I wish I could give her a huge hug and validate all her feelings. 

So, this week, I am filled with sadness. I'll bounce back, as I always do. 

The Eye Test

 I've been failing my self-administered eye test. A few weeks back, my friend Chantal took me out for my birthday. Our first stop was CW's Gin Joint, followed by Hotel Bar. When we walked into Hotel Bar, we found two empty stools by the bar and planted ourselves there. We casually started talking to the mixologist and another patron. After getting our drinks, we casually continued speaking, but I suddenly turned my attention to a conversation held by the mixologist and with a gentleman I later learned was named Alex. After a few minutes of back and forth, the bartender exited the conversation to attend to new customers, but Alex and I continued speaking. 

CW Gin Joint

He looked at me and said, " You know, I know you." I was taken aback as he shared that he attended USF's This is My Brave; his friend and fellow member of This is My Brave 2024, Ciara invited him. I was in awe as he went on to say that as soon as he walked into Hotel Bar and saw me, he wanted to talk to me and thank me for sharing my story. He urged me to continue sharing it because others needed to hear it. He went on to say that my face was the first one he saw on the show's playbill and that he was intrigued but in awe after he heard me speak. It was during this conversation that I learned about the eye test that athletes are put through. 

I've been revisiting our conversation on and off since that night. Not because he showered me with compliments but because he taught me a huge lesson. Since 2022, I've simply been making quick decisions and judgment calls based on my current state. I have been dismissive of all my collective attributes and instead have been telling myself I am not worthy. 

Honestly, the negative talk has been excessive. The saddest part is that I am so good at it that it sometimes catches me off guard. Even though I have actively worked on correcting the negative talk this year, since my conversation with Alex, I've been more conscientious about my internal conversations. Yes, my body is different, and for the better part of a year and a half, my body was rejecting a foreign
object that was supposed to keep me safe. I was on two strong antibiotics, and I was underweight, depressed, and anxious all the time. I was not okay. 

Today, I am better. I am not 100% sure, and that is okay because I am aware that every day brings its own challenges and, more importantly, rewards. My new goal for this 37th year of life is to pass my own eye test.

This is My Brave: I Dare You

 On Friday, April 5th, I participated in USF's This is My Brave College experience. I stood on stage, vulnerable and naked ( figuratively), and spoke my truth. I performed an original poem titled, I Dare You. I was inspired by the events after an influencer "blessed" me with cash. I used the cruel words from strangers as a tool to write this piece. 

Below is my poem, enjoy. I will share the link to the performance as soon as it is available. 

Look at me.

Go ahead; I give you permission.

I’ll stand still.

Quiet

Look at me. 

Go ahead; I give you permission.

You can laugh

You can point

Look at me!

Go ahead; I give you permission.

Call me names.

I've heard them all:

You’re an abomination 

You’re fu-gly 

You’re a monster

You’re a mutant

You’re ugly

I said, 

Look at me!

Go ahead; I give you permission. 

Look at my droopy face.

Look at my protruding right eye, 

It’s a prosthetic 

Look at my scars.

You done? 

Now, See me.

Go ahead; I dare you.

Do you see me?

The woman, standing before you?

Here I am, despite you,

I am not afraid.

I am Standing tall.

Outspoken. 

Unbroken,

Brave.

See me.

I dare you.

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. 

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!

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. 

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.

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. 

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**😉

Four Months Post 23rd

 " At the end of the day, we can endure much more than we think we can."- Frida Kahlo

I have reached the fourth month of recovery from my 23rd surgery. Twenty-three surgeries in thirty-four years of life. I would forever be overjoyed if I never-ever have to endure another surgery again, and I think everyone would agree that a surgery-free life would be perfect, but NF does not always play fair. 

This new reflection that stares back at me in the bathroom mirror is one I fully do not recognize. At times I see a glimpse of my former face; a face that at one point was compared to that of a monster is the face I miss. Neither this nor my former face are monster-like. However, I would still like the face I had before January 19,2022. I have to acknowledge that having this recent surgery was the best decision I could have made because continuing to live with exposed titanium mesh was anything but ideal. 

After a week off of antibiotics, I was placed on Cipro again. As I mentioned in my previous post,  Pseudomonas aeruginosa is a chronic infection. Lisa, my APRN, described this infection as very sticky, and since I have a mesh and recovering from surgery, I am the perfect host for the bacteria to adhere to. This round of antibiotics is for 30 days, but I could take it for the rest of my life. It depends on my wound healing and continuous lab work coming back with good numbers. The infection is present, but it appears to be superficial, so here's to hoping and praying that it remains this way and my body can get rid of it. 

My none-medical-training background has hypothesized that Pseudomonas aeruginosa is the culprit that caused my skin to tear. I have made this conclusion based on what I have been told and what I have read; I could be wrong, and if I am, then I am okay with the fallacy I have created. 

5/14/22, Honeymoon Island

So here I am, four months post-surgery, and I am thankful I am healthy and healing. Despite having this infection and taking the second round of antibiotics, my recovery is going beyond well. My mental health is stable. Yes, I have had multiple days in which I feel sorry for myself and am angry that this is my life; but I do not allow myself to stay in that mental state because I know if I do, I will slip back into active depression, and this is something I do not want. I know far too well the depth of my depression and the consequences. After recovering from my last depressive episode, I promised myself I would actively work to never experience another episode again. 

90+ Days Post-Surgery

Outside of Moffitt

 I am back on antibiotics. I have contracted an infection known as Pseudomonas aeruginosa. I am an ideal candidate for this bacteria since I am recovering from surgery; this bacteria can cause infections in the blood, lungs, or other body parts; in my case,  my skin flap. This could explain why my skin flap is taking longer to heal. Hopefully, I will only need one round ( two weeks) of treatment. I spoke to Dr. Patel on Monday, and he said that this is a chronic infection. However, recent tests indicate the disease does not appear to be growing, which is what we want. 

As the days and weeks pass in this recovery process, I have to learn to love my current face; whether my existing face is permanent or transitional, it is difficult to accept the way I look. Dr. Patel says he does not know if my face will return to its previous state or to what degree. Before surgery, my face was asymmetrical and somewhat droopy on the right side, but nothing to the extent that it is now. 

I broke down in tears not too long ago because I do not like my crooked smile or how my skin flap protrudes. I am emotionally drained from this healing process. My mom asked me if I regretted having this surgery. Through tears and snot dripping ( it was an ugly cry), I answered that I did not regret the procedure because I no longer have an open wound or exposed titanium. The alternative to not going through with surgery would be 100% worse. Despite this, I am having difficulty accepting the possibility that this is my new face. I want to love who I am, but at this moment, I do not, and I have to be okay with that. 

Since the skin flap has not entirely closed and with the nuance of the infection, OT will have to remain on the backburner. Hopefully, everything heals soon, and I can start OT and work towards getting as close as possible to having the face I love again. 

In other news, I am back to work! This makes me very happy because I love being a Vocational Rehabilitation Counselor. I may be biased, but my work family is the best! I am back to working with clients who want to join the workforce despite having a diagnosis that causes a barrier to employment. 

If you do not already do so, follow me on Instagram @mynf_life.

Scared but Brave

 The hardest part of my recovery from surgery is not at the start but towards the end. When the stitches are gone, the swelling is minimal, and the pain is at its lowest; this is when the most challenging part of healing begins. My mental and emotional health is at its peak at the start, but I break down right when the finish line is in sight. 

I have to be honest; I do not like the reflection I see at this moment. And yes, I get it; I still have at least six months left until I see the final results of this surgery, but I am scared. In past surgeries, the swelling went down to reveal a new face. A face that is more aesthetically pleasing. 

However, this surgery has caused my face to be even more asymmetrical than before. Prior to surgery, I had a consultation with the PT/OT department in Moffitt. I learned that due to the type of surgery I was having, there was a possibility that I would develop lymphedema. Lymphedema is permanent. 

In the best-case scenario, I would not develop lymphedema, and worst-case scenario, the lymphedema could go from the right side of my neck and extend down to my arm. Additionally, due to the swelling and the impacted areas, I could have secondary effects like trouble swallowing, altered speech, and persistent weakness in my right arm. I have what my nurse recently called "minor lymphedema." 

Photo was taken 1-17-2022

I am two months into recovery, and although I see improvement in my physical appearance, I still have significant swelling. Again, I am aware that this last one has been the most invasive out of the 23 surgeries I have put my body through, but I cannot help but feel insecure with the final results, even though I am nowhere near the finish line. 

 

Healing from 23rd Surgery (Updates)

 I am two months post-surgery, and the healing is ongoing. I am not going to lie; recovery has not been easy. It's not about the pain, the itchy scars, or the swelling. It's the fact that I am not 100% yet according to my standards and my timestamp. In my opinion, I should have already crossed the finish line. Instead, I am on mile marker seven on a ten-mile race. 

Dr. Patel informed me that I should anticipate recovery to be six to eight weeks, and here I am, two months in and still waiting to hear those magical words from him, " Everything is healed, call me if you need anything." What I consider setbacks, he anticipated. As he has explained, the skin flap is heavy, and due to past surgeries, it will take my body longer to heal. Parts of the skin flap have continued to open, exposing the titanium mesh. I now need to allow my body to work its magic. The wounds will close on their own. 

There has been progress, but I have at least two areas of concern. During my last appointment on Monday, March 14, Dr. Patel said that if the wounds do not heal within a month, he would need to put me under general anesthesia and stitch me up again; this I vehemently do not want. 

I am desperate to return to my 

Photo was taken 1-16-2022

life placed on pause due to recovery. I want to go out and enjoy the sunshine. Feel the sand under my toes and smell a mixture of sunblock and ocean. I want to cook. I want to wear heels and wedges and do my make-up. As crazy as it sounds, I want to clean! Pick up the broom and sweep! On that note, I got reprimanded by my mother and family friend, a physical therapist, for sweeping. To my defense, that day, I felt fantastic and strong and capable of sweeping the perimeter of my kitchen. However, I will admit that I knew I should not have been cleaning, but I am a rebel ( sorry, not sorry (input evil laugh)). 

I know that I need to be more appreciative and loving with myself and my body. After all, undergoing 23 operations is not an easy feat. My incredible body has never betrayed me, so why should I lose faith now? I cannot. I will not. 

30 Days After 23rd

Today I celebrate one month since my last surgery. I am not sure the word celebrate is the proper adjective to use for one-month post-surgery. However, I am healing and have had zero complications, minus one minor setback that I will explain.

 

About the minor setback... 

This Tuesday morning, as my mom was cleaning my wounds and changing some bandages, she noticed that two of my stitches had popped, and the wound had begun to open. She washed the area and told me to contact my medical team. My mom also took some pictures to send to Dr. Patel and his team to see how the skin flap looked. After emailing my medical team back and forth, I was scheduled for an appointment for Wednesday at 3:20 pm. 

ARNP Krissie cleaned my wound and explained that Dr. Patel was in surgery, but he had been paged and would take a look at my skin flap. Once Dr. Patel looked at the skin flap and the stitches that had popped, he instructed Krissie to remove the remaining stitches and that he would be replacing them with thicker thread. And so, I am now the proud owner of 12 new blue stitches and four steri strips! Once the local anesthesia wore out, I immediately felt horrific pain. I literally could feel my face swelling again. Due to the pain, I did not sleep much during the night. Therefore, I spent all Thursday in and out of sleep and taking pain medicine. Thankfully, Friday, I felt better, and at night I was able to sleep, only waking up once throughout the night. I have a follow-up on the 28th of this month. 

saying goodbye to 2021

You may be asking yourself why the stitches opened. Well, the answer is quite simple, gravity. As Dr. Patel explained, the skin flap is heavy, and now that the swelling is going down, it has less pressure holding it up, so gravity took over. The 12 new stitches and steri strips pull the skin flap upward, and the pressure bandage I have around my head provides support. 

And so I find myself one-month post-surgery, and I still have many more until I am fully recovered. I honestly have a lot to celebrate because I am healthy and healing, my mental health is also stable, and if I start feeling unstable, I know who I can turn to for support. I am sleeping better throughout the night, eating more, and my leg is getting stronger. The swelling on my face and the droopiness of my right cheek will take much longer to normalize, but at least for now, there are no signs of facial nerve damage. 

 Let the healing continue!

Post 23, part 2

 Recovery from any surgery requires patience, a skill I have gained through multiple surgeries. As I have expressed in previous posts regarding surgeries, I tend to bounce back relatively quickly; however, my body is taking its time to recover from
this surgery. I am healing from different incisions; the right side of my face is swollen, my neck is sensitive due to the trach and Penrose ( a Penrose is a type of surgical drain), and my left leg is weaker than my right due to the skin flap. So, it will take time before I am at 100%. 

Tuesday, January 25

I said goodbye to the ICU! I was transferred to a standard room on the fourth floor, room 402. After settling into my new space and saying goodbye to my mom, I put on a movie and got comfortable in a recliner. At one point, my suction fell; I figured I could stand up, walk the two feet towards my bed where the suction was and pick it up. I did not think I needed to call my nurse to help. After all, it was a short distance. So, I put my movie on pause and slowly scooted to my bed. Two nurses walked into my room as I leaned against my bed to grab my suction. 

Out of ICU

Needless to say, they were not happy; they reprimanded me, telling me that I could have gotten hurt and that I needed to call my nurse if I wanted to move. They helped me get back into my chair and grabbed my suction. My assigned nurse, Nick, came in later and jokingly said, " I heard you were a runaway." I promised him and the other two nurses that I would call for help moving forward. 

Despite my vow not to stand up again, a nurse placed an alarm on my recliner and bed. In hindsight, I should not have stood up despite my self-assessment that I was able and strong enough to perform my actions. 

My brother Andrés also visited me and slept over! By far, it was the best night ever! We watched movies and took a stroll around the floor at 10 pm. 

Wednesday, January 26 to present

Freedom! After one whole week in the hospital, I was discharged! Oh, what a happy day! Being home has been the best medicine! There is nothing better than sleeping in your bed and eating home-cooked meals. At home, I do not have to worry about a chair alarm going off every time I stand from my recliner. 

I went back to Moffitt on Wednesday, February 2, for a follow-up and to remove the staples from my left thigh; I had a total of 30 staples! Kathy, Dr. Patel's nurse, removed the staples and examined the wound; she said my leg was healing perfectly and that I had to increase my walking distance to rebuild my strength slowly. My next appointment is Tuesday, March 1.

As I am nearing a month post-surgery, I can slowly see the results. My left leg is stronger with each passing day. My tracheostomy and Penrose drain in my neck are nearly closed. The swelling on my face and head has significantly gone down, and the stitches have started to dissolve. But, please don't misunderstand; I still have a long road ahead of me to see full results. Dr. Patel said it would take up to ten weeks before I see results, but fully recovering from such extensive surgery will take about a year. 

I do not know if I will need a follow-up surgery once I fully recover, and honestly, that is the least of my worries. Right now, I am focused on healing from number 23. I have had zero complications. I follow all medical advice and listen to what my body, mind, and soul need, and what I need most is patience in the healing process.