May 26th, I went to virtual class and had 1 Smarties pack afterwards. In the late afternoon I began having severe abdominal pain that was making me consider taking an oxycodone.

I had plans in the evening to go watch a theatre show that I was really looking forward to so I was trying everything I could to be able to go and watch it that evening.

I had tried having some gum to help with the hunger craving aspect of things, but I had to spit it out after 2 minutes because of how sick my stomach was feeling.

I laid on my couch all the way up until I had to leave to watch the show. I left at 6:30p.m. and got to spend the evening to watch the show with some friends. It was so nice getting to see them and the show was fantastic.

I ended up arriving home at 11p.m. and was so tired that I didn’t really notice any of my symptoms from earlier in the day.

The following day I woke up and was struggling a lot because of the heavy amount of pain I was in. I took some nausea medications and an oxycodone as I headed out for physical therapy.

I had also stopped taking my sodium retention pill that morning (fludrocortisone) since my tilt table test was coming up and I was asked by my doctors to start getting off of it for the exam.

Because I was off of the fludrocortisone, I could feel a lot of how fast my heart rate was because it had been kept much lower with the medication.

I got back home from physical therapy and felt like I needed to vomit all of my insides out.

I took a nap and woke up feeling just as bad as before. I went to sleep with my trash can in my bed in case I vomited.

May 28th, I realized I had missed my period for the month which was odd considering the only other times I had missed my period was while I was going through malnutrition (which makes sense). I wasn’t sure what was making it miss now…

I had really bad fatigue, had a lot of nausea and a vertigo attack in the afternoon. I sent along a message to my care team just letting them know what had been going on just to try and keep them informed.

May 29th, I woke up at 8:10a.m. after sleeping for 13 straight hours (I had fallen asleep at 7p.m. the previous day). I SPRANG out of bed to pee and took a shower. I had to take glucose tablets afterwards because I accidentally took too long again which resulted in my whole body shaking.

I had still been off of food since I was trying to recover from the flare but it’s always the absolute hardest part (and the first 4 days are the hardest).

I watched so many food videos on Instagram of food being prepared while I had cooking shows playing in the background on my TV. If a neighbor was cooking something I could identify what it was from down the hall. It helped stave off some of the cravings, but it continues to be the hardest challenge.

That evening my PICC scar suddenly had an itchy bump on it that lasted for about an hour and then went away which was weird.

May 30th in the evening, I tried for the first-time reintroducing food into my diet again because I couldn’t hold off any longer (psychologically speaking). I had 1 Smarties pack while watching a movie.

3 hours after eating it I had more uncomfortable abdominal pain, so I went to bed to try and sleep it off.

I was kept awake and didn’t end up getting to sleep until about 6 a.m. I woke up at 8a.m. because I had classes.

My stomach felt awful, so I did not eat anything for the day.

The pain and nausea were extremely heavy and during my class breaks I had to lay on the floor and moan out of pain.

The pain remained steadily increasing in symptomology throughout the day.

I tried to nap and ended up missing my alarm to take out my TPN to defrost so I had to connect to very  cold TPN. Afterwards, I remained in bed trying to watch thriller movies to try and help distract myself from the amount of pain I was in.

June 1st was day 7 of the flare and I didn’t get to sleep until about 4 in the morning.

I went to physical therapy and studied for my virtual class’s exam the following day.

June 2nd, I had an appointment with my primary care physician which I had been looking forward to in order to hear their opinion of my letter from back in March (Moving Apartments, Turning 20, & Making Decisions).

After my virtual classes I headed to the hospital for my appointment. I went in and explained how good everything had been going on TPN. We once again had some more difficult conversations about the risks of TPN. They mentioned how it’s a challenging place to be because enteral feeding would make me very sick but parenteral feeding could kill me.

It was about midway through the appointment, and they then let me know that this would be my last appointment with them because they were leaving primary care.

It was tough for me to process it in that moment because I was still trying to focus on getting everything answered from my list of questions and to have them help me (for the last time I guess) persuade the GI team to keep me on TPN.

They also mentioned that they realized that TPN became my “treatment” so to speak which no one had expected but I hadn’t thought of it that way.

We finished the appointment, and they wished me good luck in all of my endeavors and hoped that I got to remain on TPN.

I arrived at home and just began crying. It was hard to have the last person who was on my side leave, and it was a tough realization knowing that I would be continuing on the battle to live my life with just me now.

They had also been one of 3 people on my case who actually had listened to me and believed me. Out of the 93 doctors I have seen I have only had 3 who have been on my side which makes it challenging to have to “argue” in a sense with the doctors to get them to believe you first in order to help you.

I spoke to a lot of family members afterwards to try and remind myself that I’m still in control of my body and to remind myself to still have the courage to advocate for myself.

The following day I was still flaring but no longer with abdominal pain just a lot of fatigue.

June 4th I was less fatigued and was able to shower and work on a new art project in my home. I was making a wall feature mirror out of picture frames that I wanted to paint blue. It was really relaxing and helped to cover the breaker box I had on my wall. I had used Velcro command strips in the case that I needed to get to the breaker box for some reason, I could get to it.

My flare continued through to June 8th. This flare was 14 days long.

See how Emma’s tilt table tests go in, “Spending a Day Like Han Solo”.