Nighttime’s were challenging for me in the hospital since I barely got much sleep. I would be woken up either by pump alarms or by nurses giving me my next doses of medications. My medical team would also come by every morning for rounds at 7 a.m. so I was always woken up disheveled with a room of 5 doctors staring at me as I tried to quickly compose myself.

A lot of nights I was left up crying in pain after trying to swallow my pills which would then follow into dry heaving flares. Unfortunately, there was not much that anyone could do to help so I would often ride the wave as best as I could (often having Friends playing on my phone for some comfort). The times it was too bad to be able to have something in the background, I would facetime my dad often at 3, 4 a.m. in the morning.

My inpatient doctors were highly encouraging me to eat, so I finally gave in by fourth day. I had all of my food blended into super small pieces and could basically only eat 2 items on the menu since everything else didn’t fit into my restrictions (which I really didn’t want to invoke a flare). I was only able to eat a little bit before my esophagus bothered me too much and I got in too much abdominal pain to be able to take it. I would also have a lot of diarrhea and constipation from eating anything.

I still wasn’t really able to stand up, so I was given wet towels by nurses to “bathe” with in bed.

On August 21nd, 2021, my dad and I were on a facetime call with my brother. After the call had ended, I mentioned to my dad that my left shoulder was twitching, and it was slowly becoming more noticeable.

After about 10 minutes, my whole left arm was spasming and my left hand was stuck clenched closed. As more minutes went by, my arm was bent up to my chest and my muscles were stuck in that position. It was quite painful with how tightly the muscles were clenching themselves.

We called in the nurses as soon as possible and then my neck started to get stuck bent against my left shoulder.

They got heat packs and after about an hour my muscles relaxed, and I was able to open my hand.

They ran labs in the meantime to check my electrolytes, magnesium, and potassium levels. All came back normal.

About 30 minutes later, my neck started twitching by jerking itself to my left side. I told my dad to call the nurses back.

This time, the heat didn’t work…

The spasming flared into both of my arms, my neck and head. It lasted from 3:30 p.m.-10:30 p.m.

My neck was uncontrollably throwing itself in different directions switching every hour or so to either the right or left side. It was pulling my neck backwards so hard that I thought I was going to hurt myself.

I was crying and freaking out the whole time since I had no control and couldn’t get it to stop. Nurses were consistently calling in different doctors and neurologists while running to take more blood labs. Everything was coming back clear, so we had no idea why this was happening.

My neuro exams all came back clear and everyone in the room said that my movements looked like seizures, but I wasn’t actually having one.

My dad helped hold me up since sitting up was the most “comfortable” position amidst the immense pain and havoc. My neck was bending itself so far back that my forehead would almost hit my pillow if I sat back.

My arms were clenched, and my hands were stuck closed and tightly drawn against my body.

Then, my eyes started spasming.

I got Benign Paroxysmal Positional Vertigo (BPPV) when I was in 6th grade, so I was familiar with my eyes uncontrollably darting around but I HATED it.

Unlike BPPV, my eyes weren’t moving back and forth, they were pulling themselves stuck upward.

I couldn’t see because they were stuck looking so far upward.

Again, this lasted hours.

Doctors came to the decision to try injecting magnesium anyways (even though my labs all came back normal) and to also try giving me Cyclobenzaprine (a muscle relaxer) to see if it would help. The only issue is these things would take 20-30 minutes to activate.

They did eventually get me to be able to lie down and get some sleep and the nurses let my dad stay a bit past the visitor time since I was still freaking out.

I had a few more mini spasms through the night but was sure the next day that they were forever behind me…

August 22nd was a much more normal day; I had been given a “shower cap shower” by one of my CCT nurses which felt so rejuvenating since my hair hadn’t been washed in so long.

I also began doing some small walks around the hallway since my TPN mixture was being more finalized. They had gotten the right balance of nutrients that we needed for my body, and it was already gaining weight and improving.

The thing that became very apparent was how much my leg muscles wasted away while I had been so immobilized over the past 2 ½ months.

I also had been told by my medical team that they needed to release me soon because there was nothing else, they could do for me and that I could only do the last test they needed as an outpatient.

The last test was a Gastric Emptying Study (GES) which involved eating radioactive eggs to test digestive motility. They said I wasn’t allowed to do it as an inpatient because if I vomited, it was considered a “radioactive spill”.

They said they’d release me the next day and that the GES needed to be completed within the same week.

Let’s just say that the plan absolutely did not happen.

On August 23rd, I was very ready to be released.

Over the course of my stay, I was very thankful that my primary care physician visited many times along with my physical therapist to check in.

I was also ready to be done with my daily morning heparin injections into my stomach to prevent blood clotting. I had bruises all over my stomach from those injections and lots of blood stains on my skin.

My dad and I were expecting a calm and smooth discharge from the hospital, but unfortunately, it was not anything near what happened.