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. 

Post 23, part 1

 I am officially two weeks and a day post-surgery; I honestly cannot believe it has already been 15 days since I had surgery! I spent a week in the hospital. Six days were in the ICU and one day in a standard room; this was the longest I have spent in the hospital following an operation, I usually leave the hospital on day two post-op, but this time was different. 

1-19-2-22, before surgery

January 19, 2022 Surgery day

I arrived at Moffitt at 5:15 am to register and prepare for the surgery; I was wheeled into the OR by 7:15 am, and surgery began at 8:35 am. Due to the ongoing COVID pandemic, my mom was the only one allowed in the waiting room. I cannot begin to imagine how my mom felt being alone in the waiting room. Yes, she kept in contact with family and friends, but still, I would have liked for her to have someone else accompany her while I was in surgery. By 4 pm, I was wheeled into recovery.

My first memory after coming to is of being in a dim room and having my mom next to me. I was unable to speak and in pain. My mom explained that I had a tracheostomy which prevented me from speaking. I recall pain on my left leg and an overall heaviness on the right side of my face and neck. I kept coming in and out of consciousness that night. At one point, my mom left, and my dad came and spent the rest of the night with me. My dad later told me that I kept asking him to rub ice on my chapped lips; I have very little recollection of asking him to do this; however, I recall having him right next to me and holding my hand. 

On Thursday morning, my dad explained that that surgeon had placed the tracheostomy as a preventive measure; due to the surgery, there was a possibility that the swelling could extend down my neck, which could cause difficulty in breathing. The trach was a second layer of defense in case I could not breathe on my own. Thankfully, there were no complications with my breathing. Despite understanding the reason behind the trach, I wanted it out! I was in constant discomfort. I used pen and paper to communicate because I could not speak. Drinking and eating were also challenging. I was not happy. 

 Friday, January 21

One of my doctors placed a cap on the trach; this allowed me to speak. Of course, the first question I asked was when the trach was being removed; of course, my doctor had no specific date but said soon. I was thankful to be able to speak once again. However, my voice at first was weak and sounded robotic. Even though I could talk with the cap on the trach, eating and drinking remained a challenge; to do either, I had to tuck my chin to facilitate swallowing. Additionally, the right side of my face is swollen from my temple down my cheek to the nape of my neck; this means I cannot chew on the right side.

 Monday, January 24

Finally, one of my doctors walked into my room at 7:15 am and removed the tracheostomy! You have no idea how happy and relieved I was! I immediately noticed my voice improve, drinking and eating also enhanced. It has taken about a week for me to gain full vocal strength. 

Check out part 2 for the continuation of my post-surgery progress...

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