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.