Shows, Blood Labs, What Else Is New?
After my egg flare had ended, things seemed to be going back to normal mostly aside from just having more tremor issues.
My hands would shake so much in the evenings, so I learned to never do classwork then because my hands were too difficult to function with.
I went back to rehearsals on February 22nd, and it was so nice to be back there with everyone.
I had also noticed that every time I returned home from rehearsals, my blood sugar would drop significantly from all the energy it took while I was there to “appear okay”.
To combat this, I just started taking my glucose tablets more frequently at rehearsals.
I was a bit bummed about the theatre rehearsals because I had wished that I was able to do more and help out more, but I just wasn’t at the place physically to be able to.
It took some time to cope with and was one of the hardest parts of returning to the theatre.
A couple of the rehearsals I had the most embarrassing thing happen- my pump alarmed. *Insert disappointed face here*
It was SO NOTICABLE and one of the times it happened to be in a tech rehearsal which felt so disruptive.
Both times it was because of “sticky keys”. -This, this right here is why I miss my other pump.
Gertrude has a vengeance for me I swear, and she loves to be noisy when I least expect it.
One of the rehearsals I got to run a production meeting which was such a wonderful semblance of how things used to be. I felt helpful and it reminded me of who I was as a stage manager which I hadn’t felt in so long.
The show ended up looking really cool and I was so glad to have been a part of it (even if I was out sick for a lot of my job).
On March 1st it was midterms for my first 2 classes, and I was so proud of myself for making it so far into the semester.
I also had a GI appointment that morning (the first one since my dad left) and it was meh. The good news was that my liver enzymes were going down since alternating between the non-lipid and lipid TPN bags.
The doctor said I didn’t need to do the liver biopsy and that I didn’t need to get enteral feeding in April.
Whew!
They did however mention that they wanted me to trial the enteral feeding formula (the drink) and specifically mentioned for me to have, “ONE sip”. The doctor said they figured it would likely cause a flare because the enteral feeding formulas have a lot of components and nutrients in them.
Great-looking forward to it.
They had also mentioned that they wanted to schedule an endoscopy and colonoscopy to be done in April (which I was going to move to the summer). I asked why they wanted to do a 3rd endoscopy and they said that they hadn’t seen it for themselves and wanted to do the procedure themselves.
On March 2nd I began reintroducing food back into my diet since I figured the egg flare was far enough away that I felt comfortable retrying some of my other “safe” foods.
I had gone to the pharmacy and picked up some Sweet Tarts on my search for Smarties (still not sold anywhere…). They went okay-similarly to the Nerds, but I ate less of the Sweet Tarts because my stomach would hurt sooner so I’d snack on a few throughout the day and let them melt on my tongue.
I worked on my final 3D model for my scenic class as I entered into spring break!!
On March 4th I wrote out a seven paged letter that I read to my family and worked on editing to send to my medical team regarding my medical care moving forward and where I wanted to go from there.
It was an emotional day but a very important one because I made a lot of steps in understanding where to go next with advocating for myself.
Read what happens next as Emma trials the enteral feeding formula in, “Small Sips Still Equals Big Flares”.