2024, A Recap

This was one of the harder recap years to write. Spring of 2024 felt so full of hope, with new medical treatments on the horizon. Summer of 2024, we were settling into a routine and our life was stable. In the Fall of 2024, most of that stability was ripped out from underneath me in a way that I never expected (Side note: my pilot and I are fine!). Winter 2024 was an adjustment to that dreaded “new normal” as we found clarity in some things, but others remained completely unknown.

As is tradition, let me show you the highlights.

January 2024

In January, I joined Michelle as she revisited NIH for a checkup on her rare MEN2A disorder. There, we learned that her cancer has progressed, requiring a new medication instead of surgery. I am so honored she invited me to meet one of the top research endocrinologists, where he said that both Michelle and I were proof that the cortisol pump works. It was a humbling and validating moment that will forever be etched in my brain.

February 2024

February was a busy month! First, it marked the tenth anniversary since I’ve been managing my condition with the cortisol pump, and it’s become a reliable partner in my health. Additionally, I flew to Nevada with my mom to complete a 5 hour long medical test at the request of my endo. It took over five years for us to find a facility to schedule the test. This was to verify his theory that I would respond positively to a new medication. On the way back home, I made quick stop in Texas to celebrate my youngest niece’s birthday.

March 2024

March brought a mix of emotions. First of all, my pilot began officially flying customers with American Airlines. Personally, I hit a fantastic milestone – two whole years ER-free! I also traveled back to Nevada for a crucial doctor’s appointment to discuss the results of the February test. I failed that stim test to a drastic level. When you do a stimulation test, your body is given a medication to make something else “stim” or increase in value. My body went NOPE and instead of increasing the values, it dropped to zero. I loved my endo’s reaction: “Are we surprised by your extremely unusual response? No. Not at all. You are unusual.” My endo wanted to immediately put me on a new medication, hopefully offering a fresh start. However, working with insurance is never simple.

April 2024

At least once a season, my Dallas Mavericks travel to play an away game in my current city. This year, for the April game, I splurged on really good seats (my pilot’s family could see us on the TV!). I also spent the day in Raleigh for a double date with my pilot and one of my favorite fellow female engineers and her husband.

May 2024

In May, my pilot and I vacationed to Cancun. I became ill at Chichen Itza due to heat and dehydration. I had to arrange a private taxi for the two-hour journey back to the hotel, where I could receive IV fluids through my port and prevent an adrenal crisis. Later on in the month, I initiated a frustrating insurance battle to obtain the new medication that my endo wanted me to start in March. This devolved into a frustrating cycle of “Fax back the form,” “We didn’t receive the form,” but “But we faxed it,” and then “Okay, but we did not receive it.”

After a month of this impasse, we discovered that the form could simply be printed as a PDF online.

I also planned a day trip to Tampa, where I was supposed to meet up with my pilot during one of his trips. However, his schedule changed after I had already arrived in Tampa, so I just spent the day with his mom instead. We enjoyed our dinner at the Columbia Restaurant, a traditional gathering place for both his family and mine.

June 2024

At the beginning of June, I traveled to Mankato, Minnesota for work. After four months of fighting insurance, I FINALLY gained access to the new medication that significantly improved my quality of life. Towards the end of the month, I visited North Myrtle Beach for my pilot’s annual family reunion. This new medication allowed me to swim in the ocean without the need for port access to receive IV fluids, which was incredibly exciting. My endo was correct, the medication significantly improved my quality of life. I never wanted to go back.

July 2024

In July, I was required to travel to Mankato again for work, enduring the arduous task of carrying 100 pounds of testing equipment through TSA security due to the company’s inappropriate planning. While the trip itself was successful, the demanding schedule imposed upon me resulted in a visit to the emergency room upon my return. My two year streak of remaining ER free was broken.

August 2024

In August, my family met up in Florida to celebrate my aunt’s birthday. This was a milestone birthday, as my aunt turned 60 years old. Just as recently as three decades ago, those living with Down syndrome only had a life expectancy of half that!

Once I returned home and back to work, my position was eliminated. This company turned out to be just another failure of a start up. When I joined, they had dreams of growing to over 200 people by the end of 2023. Now they have less than 30 people, have done countless layoffs, and have no clear path forward. THANKFULLY, the timing of my layoff did not affect the closing on our house. However, the company did mishandle my COBRA insurance, which resulted in the loss of access to that life changing medication that I fought so hard and waited so long to gain access too.

This is where I am going to sing my pilot’s praises. He encouraged me to prioritize healing from the incredibly toxic work environment. As such, I resumed private online tutoring and chose to not actively seek another full time engineering position.

September 2024

In September, my pilot and I officially turned in keys to the apartment and moved fully into our new construction home. I spent my days unpacking, private tutoring, and fighting insurance. While I am very thankful that I can be on my pilot’s health insurance, I did not appreciate having to redo every prior authorization to continue receiving multiple critical medications. At the end of the month, my mom, my pilot, and I visited the local theme park. She used to visit Carowinds when she was in college, and it was fun for us to make new memories together.

October 2024

October had my pilot and I traveling back to Texas to celebrate my older niece’s birthday. While there, I was able to share a meal with Michelle and show her one of my favorite spots in the DFW area, H Mart, the Korean grocery store. Once back home, my pilot and I rode the train to the state fair to meet up with the same couple from our Raleigh adventure in April. I was able to celebrate my birthday with a turkey leg and some funnel cake.

November 2024

In November, I joined a local artist co-op. This means Clearly Alive Art now has a permanent studio and gallery space and the ability to more regularly teach art classes! I also was able to do a quick trip to Atlanta to meet up with my pilot on one of his long overnight layovers. With respect to health insurance, my prior authorization for the life changing medication was denied because although I did fail the medical test back in February, I failed the “wrong” medical test that wasn’t the gold standard.

The reason my endo didn’t want me to take the gold standard medical test was because the Insulin Tolerance Test is an incredibly dangerous and outdated test that would cause me great harm. Other November highlights include Michelle visiting for a week and spending Thanksgiving with friends who have become like family.

December 2024

In December, my pilot and I decided to make yet another trip back to Nevada (the third one this year) to see my endo in person to discuss the prior authorization denial. He was livid. He appealed multiple times and even was able to do the “peer to peer” review. In theory, this is where he could present his research to another board certified physician. However, that is not what happened.

The physician conducting the peer to peer review stated he was not allowed to look at any additional documentation. It did not matter that I failed a medically recognized test in February, or that I responded positively to the medication. It did not matter that this stabilized so many other health issues, or that there is ample research to explain why the medication worked for me. This physician employed by the insurance company was inflexible, uncompromising, and a bit combative. No gold standard test, no approval. My endo and I discussed options, which involve returning to Nevada in the new year for another test (not the ITT).

We worked too hard to improve my quality of life. I am not going to let some insurance company dictate how much I should needlessly suffer.

In 2025, I will once again find myself focusing on the fight for adequate medical care. I am Clearly Alive, and no medical insurance company will take that away from me.

2025.12.31 Update

I actually had to delay the publishing of this post by several hours. Why? Because I spent the day at the emergency room. I woke up around 2am this morning with “that migraine,” the migraine that can only be fixed with IV saline. I used to have access to tools and treatments that allowed me to treat and prevent “that migraine” at home. They were taken away from me when I lost my job. We are fighting to get them back. But because they were taken from me, my pilot and I found ourselves spending seven hours in the emergency department.

American Healthcare Insurance took away my access to preventative care and maintenance care, turning everything into emergency care. I’m going to fight hard to gain back what was stolen from me.

I am Amber Nicole.

And I am Clearly Alive.

Here are my recaps for 2023, 2022, 2021, 2020, 2019, 2018, 2017, 2016, 2015, 2014, and 2013.

Oh also a DECADE of recaps.