I had been informed by my supply company that there was a national shortage of the type of tubing I had previously been using since I got my PICC back in August. It was a type of tubing that was connected to a CADD Solis Pump which I always describe as the Apple product in terms of central line pumps.

On New Year’s Eve I had been sent the new tubing and new pump (since this tubing only worked with a different pump) and I was so bummed to have to switch. The pump itself was the pumps they used in the 80’s. It was so clunky and would alarm even if you removed the batteries from it!! -You can imagine my surprise when this happened!

The tubing was so thin, and the tube was really short compared to my other one. I have a photo below of my old tubing and how I could reach my bedroom door with my backpack on my IV pole. Now with the new tubing, I only had enough excess to be able to stand up with the bag directly below me.

This took a surprising amount of time for me to get used to because my spatial awareness had adapted since August to the length of the other tube. Also, my TPN change time became longer with the new pump as well. The new pump was weirdly shaped too so it didn’t fit in my backpack properly like the old slim one used to (there was a pocket it used to fit into).

Since the new pump was such an old model, I decided to name it “Gertrude”. I felt it was appropriate, but I wasn’t ready to say goodbye to my nice pump “Steve” yet.

So, I made a plan.

I saved the remaining CADD Solis tubing so when I started back at school in the spring, I had a familiar tube that I felt safe and at home with, in order to give me some comfort among the scariness of starting back at school.

So, in the interim, since I didn’t have enough old tubing to last me through the month, I switched to Gertrude and the MOOG tubing.

On New Year’s Eve I had gotten a new nightstand to help reorganize my room and make it look closer to the “non-medical” room it used to be a year ago.

My roommate, dad and I watched the New York ball drop on TV and enjoyed watching the fireworks through the apartment window.

Unfortunately, among watching the fireworks, my body was having severe pain for some reason, and I had considered taking my oxycodone multiple times but didn’t end up doing so.

January 1st, I rained in the new year in severe abdominal pain with severe swelling and diarrhea!

*Insert a sarcastic “yay” here ;-)*

My pain and nausea just continued throughout the day into the evening, and I just generally felt awful.

On January 2nd I woke up in the late afternoon (body needed to sleep all day I guess) and was able to shower but I was so fatigued.

I was having more esophagus spasms and had more consistent difficulty with swallowing my pills in the evening and in the mornings, so I began taking my muscle relaxer beforehand to drop my pills down in order to swallow them.

This actually helped so much and relieved a lot of pain (since my pills would usually take 2-3 hours to drop all the way down).

January 3rd, I began the first day for the high dose Ibuprofen trial that my GI doctor wanted me to do to see if I had costochondritis. I had waited a while to do this trial since I was so concerned about taking NSAIDs as a person with severe GI issues.

On January 4th I went to see a dentist-first time in over a year (yikes). It was interesting to say the least….

I was explaining to the dentist that I didn’t have the chance to care for my teeth very much because I was debilitated by my illness and was very much focused on the “not dying part”. They seemed uninterested in any of that and were upset that my gums were inflamed.

Other than that though, teeth were doing pretty great! - I take that as a win!!!

I was given a medication for gingivitis and walked home with my mouth literally all bloody and scraped (which made sense because it had been so long since a dentist, but it hurt quite a bit).

I was slowly beginning to get used to changing my TPN on my own with the new tubing and pump which was really great because my dad was set to leave in a couple weeks.

School was starting up soon and we had made a plan that when it started, he’d go back to Texas, and I’d go back to being on my own (since I MISSED MY INDEPENDENCE SO MUCHHH).

The most annoying symptom that was affecting me so much as of late was the esophagus pain and spasms. It was waking me up from sleep and just causing so many problems.

I could only take up to 2 of my muscle relaxers a day which I reserved for the times I had to swallow my pills so the rest of the day I was left to fend for myself.

January 7th, I had a morning virtual meeting for the show I was working on in the spring and I had overslept my alarm. I woke up at the EXACT time the meeting was starting so I leapt out of bed and ran to my computer to join the meeting.

From racing to get up out of bed, I created a dry heaving fit.

I joined the meeting with my camera off and then messaged that I had a medical emergency because I then had to sprint to the bathroom to continue dry heaving (since I thought I was going to throw up).

That evening I was feeling meh (better ish) and I was happy to have my last ibuprofen for the Ibuprofen trial!!!

YAY!!!!

And the results? - You guessed it! - It did absolutely nothing!

As I had already expected (which was why I didn’t want to do the trial, and other doctors of mine also didn’t want me to do the trial….) but I was glad to have my GI doctor stop nagging me about it because I was stuck with them not wanting to do anything else in my care until I did this.

On January 9th I went to an art store with my dad to pick up some school supplies for one of my classes which was set to start tomorrow!!

It was a pretty relaxing day, and I watched a very beautiful and realistic documentary on Netflix about chronic illness (specifically chronic fatigue syndrome also known as M.E.) called “Unrest” with my dad. We both reflected a lot watching it and could relate so much even though I don’t have M.E. It was more about the connections of the debilitating aspects, the clinical diagnosis aspect, and the social aspect that relates to many.

I was excited and nervous to start school the next day since it had been so long since I had taken classes.

The good thing was the first 2 weeks of school were virtual, so I didn’t have to go in person quite yet.

Read how Emma’s in-person classes go in, “Liver Disease, Anemia and Ready for School!”