Feeling frustrated about that cliffhanger huh?

I added that in there to have you as the reader feel some of the craziness I felt in that appointment!

My dad and I were obviously very opposed to enteral feeding since we figured having things run through my digestive system (the thing that put me on a central line in the first place) would be a bad idea.

They said the only other option would be a trial of me not being on TPN for a week, but it would be very rough since I wouldn’t have nutrition.

In all honesty, I was much more willing to do the “not on TPN for a week” than enteral feeding. I just kept a mental note that I’d likely need to be admitted since it’d be pretty dangerous to monitor on my own.

After they gave me that information in the appointment, they also said we were going to do an esophageal manometry and that it’d be very uncomfortable, and I’d have to be awake. They said that this either finds that my swallowing issues are fine, or they find that they’re nerve related in which case, they can’t do anything to fix it (which made me consider for later if I even wanted to do this).

They did a repeat of labs to check my liver enzymes which unfortunately all grew higher in number. This also resulted in hematology being very confused as to why I also had my anemia. This began the endless explanation of me trying to explain that not eating anything with iron for 6 months will result in not having iron equaling anemia.

I left and would see GI again in March to “enact” one of these plans… great…

Off to class!!- First in person class too!! It went really well but I had trouble figuring out how to place my backpack in a spot where people wouldn’t trip over my line. Made me pretty nervous anytime anyone stood up to walk around the aisles.

Also, for this first day of in person classes I did use my old CADD Solis tubing which was very helpful.

I got home and saw that my dad and roommate had a little surprise for me from doing my first in person class.

I had still also been going to physical therapy at this time (once a week) and my visiting nurse still came to my house every week.

My second day of in person classes was with my other classes I hadn’t seen yet. It was a bit more challenging because, I didn’t have as many places I could set my backpack and the pump was also audible which made me so embarrassed too.

It was a bit weirder in person interacting with peers since it was so evident that things had changed. This was one of the largest challenges with coming back to school.

It definitely felt like I had lost time or that I was “behind”.

I had a hematology appointment after class and once again tried to explain to them how anemia happens, but it wasn’t working. I also was told that the hematology team thought I had some form of Porphyria (a rare blood disease). They thought I specifically had acute intermittent porphyria and had my labs sent off to Mayo clinic to be gene tested.

I had been tested for porphyria 3 times before and did not have it, so I wasn’t sure why they were so adamant on it. They said my most recent urine sample showed some markers for one of their porphyria tests (but my past urine tests during my flares hadn’t).

Later that day I had also gotten a call from my nutritionist detailing out a new TPN plan that I wish I had been informed of before all of the giant leaps during my past appointment. They said I would be getting new “non-lipid” TPN bags for 3 days out of the week. Therefore, I’d be alternating from lipid to non-lipid bags throughout the week which would hopefully give my liver more of a break.

January 21st, I had gotten my second iron infusion, but I was still so fatigued and wasn’t feeling any better. The doctor’s mentioned that since my red blood cell count was so low, it’d likely take months to get it back to where it used to be to feel normal again.

It was also a really significant day on January 21st because that evening my dad left back to Texas. My dad had been living with me at this point for 6 months and had also become great friends with my roommates (which at this point only one remained still at the apartment since the other moved). It was a sad goodbye for everyone, but it was a good sign that things were moving in the right direction.

January 22nd, I began on my new “non-lipid” TPN bags which looked like yellow Gatorade. It was really hard to prime the tubing because the liquid when it isn’t all together appears clear.

Classes were going good and it was nice to have some time in my day to escape and feel like I wasn’t sick. Often times class would make me forget about it and it was nice at that time.

On January 24th I headed to my first rehearsal since getting sick which I was really worried about being able to handle. I had to go to rehearsal after my TPN change time, so my backpack was FIFTEEN POUNDS. Oh boy it was a noticeable weight.

My shoulders were always bothering me when I had rehearsals because of how heavy the bag was. It definitely took time to get used to.

It was a great time being back at rehearsals, but it made me realize very blatantly how much I missed theatre and how much I couldn’t do the things I used to do.

During this time at school, I was having to be much more cautious with my glucose because my sugars where always dropping with certain activities.

I went to the store to try and find some smarties to get to help with the sugar levels because I didn’t want to be having glucose tablets too often.

Unfortunately, none of my local stores sold smarties so I got the next best thing- Nerds?

I got pain after eating a few of them but it wasn’t a flare, so I considered eating them again the following day (as needed for low sugars).

On January 26th I had a virtual appointment with my autonomic neurologist which was perfect because I had also been having circulation issues for a couple months leading up to the appointment.

They went over the cervical spine MRI with me and said they didn’t think it had anything to do with my tremors but that it could be a rheumatology related issue, so they sent a referral for me to see one (I hadn’t seen one yet).

They also ordered more lab work for me to stop by the hospital some time to get it done.

After my appointment I had decided not to go to my next class because I had a huge fatigue wave hit and I couldn’t move much and was out of breath. I was glad that for the first time, I put myself first.

Later that day I also had used up my last CADD Solis tubing and had to ship back the pump to my supply company- Bye Steve, you will be missed.

The next day was set as a doctor filled day since I had to go to 2 different hospitals!