2022, A Recap

2022, A Recap

The year of 2022 can only be described as, once again, quite the roller coaster. I mean, I hit my maximum out of pocket on my High Deductible Healthcare plan in JANUARY. Please note that I said maximum out of pocket and not deductible. That is a new record for me, and it involved many really scary moments. But as I sit here and reflect on the entire year, I am filled with awe.

Y’all. I have come so far. As is tradition, let me show you.


Woman holds up her cortisol pump while her bandages from her port surgery are still visible.
Please enjoy this post-surgery victory photo.

2021 ended with me being too medically fragile to fly to Texas to visit. Thankfully, my parents were able to fly to me for New Years. Then on January 20th, I had what I would consider a “nightmare crisis” level episode. Perhaps one day I will be able to put into words all that happened, but at the moment it is still too traumatic. The good news was my PCP’s office was able to advocate for me, my mom was able to get completely across the country in under 24 hours when she realized how unstable I was, and I had an emergency inpatient surgery at my local hospital in which I had a port-a-cath placed. This is how I hit my maximum out of pocket in JANUARY.


Woman draws attention to her accessed port with a bag of saline hooked up to it.
The port allows me to run IV saline at my home. This is a significant improvement in my quality of life.

I was released from the hospital on January 25th with this new piece of hardware surgically implanted in my body. This new piece of hardware gave me access to one of the most amazing resources: my home health nurse. She started coming weekly to access my port and run IV fluids at my home as I worked on trying to regain my strength and piece together what had happened medically. I thought I was spoiled with the ability to get saline at my PCP’s office. Y’all, getting them at home is even better.


Two women smile ridiculously standing outside of an NBA arena.
Outside of an NBA game. GO MAVS!

In March, I started on a new medication that drastically improved my quality of life. Here’s just one specific example: While barometric pressure changes used to knock me out, this new medication reduced my sensitivity to them. I’m no longer trapped in my bed for 8-12 hours with a debilitating migraine at every severe cold-front. My father was also able to come out for a visit. I did end up in the ER in March, but the ER was able to use my port! This visit actually marked the last time I was in the ER for 2022. Another highlight was my ability to go to an NBA game with a friend, which was my first social outing in a long time.


Two Assyrian women smile for a photo.
Always a joy to meet another person from a rare group and realize that you are not alone.

In April, I was able to meet another ASSYRIAN ARTIST. It was actually that blog post shared on a mutual friend’s Facebook timeline that led her to speak up and go “Wait! I’m Assyrian too!” And then it worked out to where we could meet up in person. Community is such a beautiful and necessary thing. We are never truly alone in our journey.


I graduated! I’m also port accessed in this photo.

In May, my family was able to watch me walk in my graduation ceremony. I am now the proud owner of a very fancy piece of paper that declares I have a Masters in Computational Data Science and Engineering with a concentration in Systems Engineering. It took 2.5 years to earn this degree with many unforeseen challenges along the way (a global pandemic, multiple hospitalizations / ER visits, a move). To celebrate this accomplishment, my mom and I took a trip to Key West. That was also a significant milestone, as it was the first time I got on a plane after my December 2021 adventure at NIH.


Rocking that Port Life.

Nothing really noteworthy happened in June, which I guess can be viewed as a good thing given the craziness of January. I began driving again (something I had given up for a few months) and was able to return to a regular working schedule on site in my lab. It was odd to not have several hours of each week taken up by grad classes. I was also still getting 2L of saline weekly through my port and my home health nurse.


Text I sent to my PCP’s office at the beginning of July

The Fourth of July was spent with my mom, a dear Addy friend, and her family. We had SO MUCH FOOD. But during that weekend, my adrenal insufficiency was unstable and I was burning through an abnormally high amount of cortisol. Well, my troubled tonsils had more cysts on them that did not resolve themselves with a 14 day course of antibiotics. I was referred to an ENT. This was a different ENT than the one that irresponsibly triggered an adrenal crisis by inappropriately lancing my tonsils April 2021.


Before surgery selfie. Who would have thought in 2022 I would have TWO unplanned surgeries!

Unbeknownst to me, my father requested from his company at the beginning of the year that they transfer him to this side of the country so that he could be closer to his daughter. I am happy to report that they transferred him, allowing my parents to move to my side of the country. The timing of their move worked out conveniently for my tonsillectomy surgery on August 22nd. Although the CT scan of my tonsils showed nothing peculiar, my amazing ENT still thought it was wise to cut them out. Only during surgery did it become abundantly clear the extent of their infection.

It is a well known fact that recovery from a tonsillectomy surgery as an adult is unpleasant. Dear Clearly Alive Family, please note that the recovery from surgery was actually less painful than the constant ongoing pain that I was suffering from before surgery. I did not have the words to verbalize how much my tonsils were bothering me.


Cape Flattery, WA. This was a 9 hour road trip day around the Olympic National Forrest with a two mile hike. I’ve come so far since January.

The thing that made me the most nervous about my tonsillectomy was the potential of having to cancel my planned trip to Seattle due to a prolonged recovery from surgery. But I didn’t have to cancel! I was able to spend a week in the Pacific Northwest in which I officially started dating a pilot. Now, this pilot has been in my life for a long time. We first met in college but picked back up our friendship in 2018. In November of 2019, he asked me out but quickly retracted it when he realized that neither he nor I were in the proper place in our lives for a relationship. Three years later, things have changed. I now have my pilot.


Hey look, I have my pilot! Photo from Biltmore Estates. I am port accessed in this photo.

In October, I completed a 5k. I told no one of my plans to do this 5k as I was unsure if I was going to actually make it or not. I woke up that Sunday feeling good and decided, “Hey, why not?” It was another victory milestone for me. Now, my time was slow, but it was such a joy to be able to cross that finish line. Later that day, I picked my pilot up from the airport for a crammed itinerary of birthday celebrations. We took a short trip to Asheville to see a dear Addy friend (same one from July) and tour Biltmore Estates. Then we celebrated my birthday with my parents and close family friends around the fire pit in my back yard. It was absolutely perfect.

Other noteworthy October accomplishments included chopping off over nine inches of my hair and finding an eye doctor so that I could get back into wearing contacts.


The pilot and I in Cabo, Mexico. Also, I’m port accessed in this photo.

In January, I was concerned that I might never live independently again. In November, I was traveling internationally for a family vacation. It was always planned to have this family vacation with everyone (parents, brother, sister-in-law, niece) in Los Cabos, Mexico. When my parents found out about my pilot, they extended the invite to him. He was able to join us on part of the trip, where we got to watch the joy of Dia de Los Muertos from the view of my two year old niece. Also, November marked the TENTH anniversary of my corner of the internet.


The pilot and I during our trip to New Mexico.

December can be described as the month of friends and family. It started out with a trip to Houston where I met up with two couples from my college days and got to hang out with their kids. It was such a joy to witness what amazing parents they are. Then towards the end of the month I headed off to Texas to meet up with my family. Christmas Day, I spent in New Mexico with my pilot and his parents. While in New Mexico, I had the pleasure of catching up with my college roommate. Well, she was more than that. She was also my co-RA, and Korea travel partner. I then flew back to Texas where I was picked up by another dear Addy friend and her partner. We were able to talk about how different this December was from a year ago, where she was riding in an ambulance with me at NIH.

A year ago, I had to cancel Christmas with my family in Texas after a hospitalization in DC and being too medically unstable to travel. This year, I celebrated Christmas with my family on December 31st after traveling all over the country and meeting up with many people whom I love dearly. That stubborn hope that I spoke about at the end of 2022 paid off.

I am Clearly Alive. And I am incredibly excited about what the future holds.

Here are my recaps for 2021, 2020, 2019, 2018, 2017, 2016, 2015, 2014, and 2013.

Amber Nicole is Clearly Alive