I had high hopes that 2021 would usher in a return to “normalcy.” Instead, it forced the entire world to wrestle with a concept that those of us in the chronically ill world are very familiar with: adjustment to the new normal. For me, it felt like this year was another year of “just survive.”
This is why my blog sat dormant for the majority of the year. Between a move, starting my job at a new location (in person), grad school classes, and an escalation of health issues, it felt like I was barely holding everything together most days. However, I still have some very fun memories from this year. As is tradition, I shall document the highlights below.
My house went on the market in the middle of January, which involved much work to get it “show” ready. Any time someone scheduled to see the house, I loaded up my two cats and immediately vacated the premise. Although difficult, I did receive seven offers in under three days with all but one of them above asking price. I ended up accepting an offer with a closing date at the beginning of March. I also asked my mom to move in with me to help me manage my move. Working full time, plus grad school, plus my medical stuff, plus a move was too much for me, a single individual, to handle. I needed help! Additionally, we figured out how to get regularly scheduled IV fluids though a local outpatient clinic.
Y’all might have heard about the craziness of the housing market. It was wonderful as a seller, but dreadful as a buyer. I kept losing out on homes due to others putting down cash offers above asking price and waiving all inspections. However, I finally got my offer accepted for a closing mid-March on a gorgeous house because of a handwritten note about cats. Yes, I wrote a letter about how their cats loved me and how my cats would love their house. My mom and I moved into my temporary housing apartment on February 19th and I reported in person to my new lab on February 22nd. To celebrate, I chopped off all my hair for a fresh start (no more purple!). I also received my first Pfizer COVID-19 vaccine at the end of the month.
My previous home successfully closed on March 2nd. My new home successfully closed on March 16th. I moved out of the temporary housing on March 18th. My dad was able to fly in to visit me and he, my mom, and I spent a week unpacking. I must say that my cats absolutely love their new CatTV. At the end of the month, I received my second Pfizer COVID-19 vaccine. I also tried to join a weekly social run club, but my body was clearly struggling.
While we had finally figured out how to get regularly scheduled infusions at my old place of resident, setting that up again after I moved proved to be a challenge. I ended up in the ER at the beginning of the month. During that visit, they found a lump on my tonsil and immediately referred me to an ENT. The ENT identified it as a cyst and started me on a twelve day course of antibiotics, with the threat that if the antibiotics did not work I would require a tonsillectomy. After the twelve days, the cyst was still there. The ENT decided to lance my tonsil with a needle, with no respect or forethought for how my adrenal insufficiency would react. He sent me on my way, where I later started crashing towards an Adrenal Crisis on my drive into work. That was scary and resulted in an overnight hospitalization until fully stabilized. But, the cyst disappeared and I got to keep my tonsils.
At the beginning of May, I took a trip to Biltmore. I began not feeling well around dinner time, but did not decide to ambulance to the ER until several hours later. After released, I met up with another dear Addy friend for some amazing Indian food. Towards the end of the month, my family visited to see my new house.
At the beginning of the month, I ended up in the ER again after a leisurely three mile walk. I also attempted to walk a 5k with some friends, which landed me in the ER with vomiting. Something felt different, something felt off. I used to be able to run half marathons, and now walking was doing me in? I felt much more fragile, more brittle. It was frustrating. But, one of my closest friends from high school was able to come out and visit me with her daughter, which was the highlight.
July marked more visits from friends and family. My parents were able to stop back by and see how I was settling into my new house. My pilot friend came out for 4th of July (in which we celebrated by making some traditional Assyrian food). I gained access to another CGM and began doing more research into the relationship between blood glucose levels and proper cortisol coverage. Though I did end up in the ER again, and I was released before I was fully stable. Another one of my closest Addy friends came out to visit, and she brought her entire family! I was able to take her to one of my doctor’s appointments, in which we celebrated that the MRI on my pituitary gland appeared “normal.” To mark the occasion, we pierced my nose.
In August, I started getting weekly 2L IV saline fill up’s at my new local PCP. I also received a new diagnosis that made my chronically low potassium make a lot more sense. The implications of that diagnosis made me realize that I needed to officially retire from long distance running. At the moment, my body cannot seem to retain proper levels of sodium or potassium. Treatment involves management of symptoms through prescription potassium (check), fludrocortisone (check), salt supplementation (check), and regular IV saline fluids (check).
At the beginning of September, I made a trip out to the San Fransisco area to see my parents and college friend. I unexpectedly ran into some other dear family friends at the airport, which was such an amazing bonus surprise. Classes for the fall semester got back into full swing and I quickly realized that this would be by far my hardest semester yet. “Data Analytics and Engineering Applications” was not looking like it would be a very fun time for me. And that was just three of my seven graduate level hours.
At the beginning of October, I got hit with some sort of illness. Thinking it was a possible COVID breakthrough infection, I completed a COVID test. The results came back negative, so we think it might have been some strain of some flu. With that negative COVID test results, I was still able to fly to Texas to celebrate my niece’s first birthday. Due to a complete meltdown between several airlines, I found myself unexpectedly stranded in Texas for an additional night with just my carry on bag.
This highlighted the importance of ALWAYS carrying ALL medicine with you ON YOUR PERSON whenever you travel. Yes, I was stranded without a change of clothes or a stick of deodorant. But, I had my life sustaining medicine on me. The unexpected extra day also let me meet up for dinner with my same Addy friend who visited me in July. For my birthday, my mom flew in to visit and we both were able to see Wicked through a touring Broadway performance.
At the beginning of November, I flew to Vegas for a bachelors party (because, yes, I will be a groomsmen in a wedding). While it was to celebrate the engagement of one of my closest friends, in reality it was more of a gathering of his closest friends (all COVID-19 vaccinated) for a time of fellowship after a very hard year. It was an amazing trip.
A week later, I was scheduled for a root canal. During the preemptive saline fill up the day before, my PCP struggled to start an IV on me. Seven sticks, one 100 mg emergency solu-cortef injection, and 3L of saline later, we were able to avoid a hospitalization. But we postponed that root canal. I ended up receiving 7L of saline over the course of three days that week, and another 8L of saline over the course of three days that next week. We think I was hit by some sort of infection, but the experience shook us both. Once again, my body just felt more fragile.
At the beginning of December, I successfully completed that root canal! Yay! No more tooth pain. My addy friend also asked me to come visit her during her two week stay at NIH. My goal was to provide her a distraction. I ended up needing an ambulance, an ER, and and overnight hospital stay. This was more evidence that something is not quite right with my body. The day I flew out, I received 2L of saline. I should not have required an additional 4L of saline only 48 hours later. We are currently running more medical tests to figure out our next course of action. Something has changed, and similar to 2013, I am going to fight like hell to maintain the highest quality of life possible.
Two days before I was to fly to Texas for Christmas, we decided to cancel my trip. I did not feel medically stable enough travel. I purchased those tickets in May, full of hope and optimism that the end of 2021 would be filled with a return to normalcy. Instead, I spent the end of December resting and trying to recover from everything. Though my parents were able to visit me to celebrate the New Year.
As I look towards 2022, I am filled with a stubborn hope. I have one semester of grad school left, and I am taking less hours. With respect to COVID, I am changing my expectations. Because I am vaccinated, I am adjusting to “this is becoming an endemic, no longer a pandemic.” Medically, we are still searching for a few more answers. But I promise you readers, I refuse to give up. I will continue to fight to be Clearly Alive.