After my appointment with my GI specialist, I followed their advice naively instead of thinking of the past and realizing I had already done their food trials (the 3 months I continued eating which only worsened my pain and caused more severe symptoms) and had dire consequences.

On October 20th, the day after the appointment, I looked at the food list my nutritionist had given me and decided to try the mashed potatoes later that day.

I had gone to physical therapy, and it was my last day with my physical therapist since they were moving to work at a different hospital. To make it memorable, I was able to walk up and down the stairs (with assistance) and didn’t need as long a break. It was hard to say goodbye but I’m glad we spent such a great last appointment together.

When I had gotten home, I was feeling really motivated after such a great physical therapy appointment, so I worked on some stage management paperwork for a show I was going to *hopefully* do in the spring.

At 3:30pm that day, I heated up a mashed potato cup and ate a couple spoons of the mashed potatoes.

At 8:30pm all hell broke loose. Little did I know that these 2 spoonsful would result in a week long flare.

My stomach on my upper left side had swollen out and I began having diarrhea and nausea. It was the time when reality hit me and I realized, “why did I do that?”

I kept doing the same thing over again and expecting different results- AKA the definition of insanity- per my doctor’s requests.

I didn’t sleep much and was woken up multiple times in pain. I had more diarrhea and had lots of dry heaving the next day.

On October 21st my pain just kept escalating and I was just stuck in bed crying since none of my medications were helping with my pain. My dad’s company sent some flowers to me (unknown to me or my dad) and it was really nice to have some extra support on such a tough day.

I sent out that evening a 2 paged letter to my medical team expressing my disappointment in them not listening to me and having me do these “trials” and it failing, for them to want me to just “try again” while I’m left to suffer through it.

In the letter I expressed how all my work in physical therapy went down the drain just from eating a couple spoons of mashed potatoes because I was immobile again and needed the wheelchair to get up and move around. I requested to have the central line placed since I didn’t want to subject myself to more torture for nothing. I also requested to have my pump time remain at 24 hours and not jump down an hour since I was so symptomatic being off of it. I also told them I wanted to go back to school in the spring. (I have included the letter with redacted identifying words below with the images).

On October 22nd I had a phone call with one of my GI doctors at a different hospital (the ones who were looking into MCAS and Mitochondrial diseases) and it was a very upsetting call. We talked and argued as I was fighting to explain why I needed to remain on TPN and them advising strongly against it. They ended the call saying if I wanted their help on my case, I needed to switch to their plan fully and be put on an NG tube with enteral feeding. I also told them I wanted to go to school in the spring which they were very strongly against. They said if they were me, they’d be doing everything in their power to find out what’s wrong and not waste my time going to school. This frustrated me because they hadn’t been in this journey for as many of the years as I had been. If they had been, I’m sure they’d have very different thoughts.

Emotionally during this time, it was so challenging as I began for the first time fighting to have a life and everyone was against me. I knew I wanted to go to school in the spring so everything I did onward was to accomplish that goal.

On October 23rd I woke up unable to talk or move from pain (because I was still flaring from the mashed potatoes). I had to take my oxycodone so I could make it to the bathroom in the wheelchair to pee.

On October 25th I saw my primary care physician while still in the potatoes flare. They were on my side with everything I wanted to do. IT WAS SO AMAZING! They wanted me to go back to school and they would remain as the only doctor on my side up to my care today. They also at this time gave me the best advice any doctor had ever given me, they said, “stop eating, please stop eating. We don’t know how much damage this could be causing to your body.” They also were ‘for’ me getting the central line and I told them that the only way I’d do it, is if I was put under anesthesia for the procedure since I REFUSED to be awake as they cut into my chest and neck for the line. They agreed.

On October 27th, the day the flare was ending, I walked to my physical therapy office which I was super proud about. Afterwards I had some pain in my abdomen and got hives again.

I received a phone call from my dietician/nutritionist who told me they agreed with my plan from my letter. They said that whenever I was comfortable, I could disconnect for like 10 minutes whenever I needed to shower.

I also had ordered a new TPN backpack which I received that day and sewed on an iron on label that said “parenteral feeding equipment do not separate” for any future hospital visits so people stopped yanking away the backpack, pulling me with it. I also resewed the inside to be able to fit my massive 2 liter TPN bags.

That evening I was putting together more items for the medical binder and was reading my barium swallow report. It was then that I noticed the report had incorrect information on it that had been affecting my care :-( . It said that I had swallowed the pill at the end and that they “saw it reach my stomach”. Huh, WEIRD considering I never swallowed the pill, guess I have teleportation powers.

I then called the hospital who then had to call all these people and the witness said that I never swallowed the pill. They then sent out in the following days an addendum piece that said I didn’t swallow the pill.

It’s a good thing I got a new portal when I was an inpatient to be able to see this document because otherwise, I wouldn’t have been able to read it.

Lesson from this- READ YOUR REPORTS CLOSELY!