On January 27th, I had to head to the hospital to get my abdominal ultrasound done to check on how my liver and gallbladder was doing since my liver enzymes were continually elevated.

I had some trouble finding where I needed to go in the hospital and people weren’t super helpful in helping me find my way there.  :-/

My appointment was at 7:30 in the morning and I had class later in the day which I was already feeling really exhausted for.

The ultrasound was fairly short, but it gave me quite a lot of abdominal pain and nausea since they have to press the wand into your abdomen to get a good reading. I went home with my pain spiking knowing my entrapped nerves were likely also triggered.

I got home at around 8a.m. and received an email that my class had been canceled!!

At around 10a.m. I went to a different hospital to go get my labs done for my autonomic neurologist. The blood lab office was so packed with people, and it took an hour and a half in the waiting room!

Luckily, I didn’t have anything else on my agenda, so I didn’t mind the wait. It was a bit awkward though because most of the patients in the room were much older than I was, but they were all staring at me and the backpack. Definitely a scenario where I practiced not being bothered by the stares!

At 5:40p.m. while I was in the middle of disconnecting my TPN, I suddenly had a super sharp abdominal pain deep at the bottom center of my rib cage (around where my hiatal hernia is) and had to sit down on the floor from the pain/nausea.

I laid down on the kitchen floor since the pain kept escalating and took a Zofran for my nausea. I had to remain on the floor for 40 minutes until I could sit up again. I had called my dad on the phone and pulled my TPN bag to the floor so I could change it there.

I quickly reconnected at 6p.m. and continued remaining on the floor.

My abdomen began swelling at about 6:50p.m. so I removed my tank top since it was becoming too tight and leaving a mark around my epigastric region.

At 7 p.m. I had enough and knew I was either taking ½ an oxycodone or going to the ER. I knew I’d be turned away at the ER, so I took ½ of my oxycodone pill. Luckily, after 10 minutes I was now able to stand up from the kitchen floor and make it to my bed.

I didn’t take my nightly pills that evening because I usually have to take my muscle relaxers to be able to swallow the others. I have an app that measures pill interactions (so I know what things might interact with each other) and it said my oxycodone was not safe to take with the muscle relaxer. Therefore, no pills that night.

I spent most of the day in bed the following 2 days.

On January 30th I had taken a shower but accidentally spent too much time inside (about 15min). I could tell because mid-shower my hands started shaking.

I got out of the shower and took my glucose level and it had dropped to 89 (it was usually in the 100s while connected to TPN). I had to take my glucose tablets and sit and wait until my body stopped shaking.

From this point on I knew I needed to be more careful and try to shorten the time I was in the shower as much as possible.

On January 31st I had received a call from my GI doctor who went over the results of the liver ultrasound with me. They let me know that I had stage 1/mild steatosis (fatty liver disease) and biliary sludge. They said they spoke to a hepatologist (liver specialist) and said that my gallbladder didn’t seem inflamed so at the moment I don’t need surgery to remove it.

They just wanted me to continue trialing the non-lipid TPN bags and we’d see how my liver would respond.

Later that day I had spoken with my parents, and we discussed the whole moving apartments situation. We figured that since 1-bedroom places in the area were all generally the same price as the one bedrooms in the building I was already living in, we’d keep me in the same building since it’d be easier for me to move a few floors rather than a whole new building (having to hire movers, etc.).

We had found some 1-bedroom floor plans in my building, so I spent my free time over the coming months, drawing up floor plans and designing the space on paper.

On February 1st I was still having a lot of issues with fatigue and blood pressure being low. One of my blood pressure readings from that day after arriving home from walking back from class was 94/52 which was quite low for me especially after physical activity.

I had also noticed over the coming days that since changing to lipid and non-lipid bags I was having more issues with constipation which was another unfortunate side effect.

On February 4th I had my next appointment with my primary care physician however, my building shut down all their elevators without telling anyone.

I had to call the building, the manager etc. to get help getting downstairs since I still couldn’t walk downstairs. It was a bit annoying that the building hadn’t thought of that, and I had went ahead and called the doctor’s office to let them know I’d likely be late- since me calling the building had already taken 20 minutes!!

The office receptionist said I had to arrive within 10 minutes of my appointment or else it would be cancelled!

Oh boy- a challenge.

I FINALLY got downstairs after the building manager met me on my floor with the freight elevator. I raced all the way to the hospital with my feet killing me and my heart rate beating through the wall. BUT, I did in fact MAKE IT.

I spent my time in the waiting room trying to catch my breath.

It was a fine appointment and was mostly a check-in.

They told me that with elevated liver enzymes, Porphyria labs can look falsely elevated- which you know I made sure to remember for the next time I saw hematology.

After the appointment I spent the rest of the evening at home resting in bed and worked on inspiration and designs for the future apartment.

Read about Emma’s new hunger issue in, “Hunger Cravings”.