June 9th my morning was spent with severe abdominal pain that caused me to have vasovagal syncope which was annoying. I never end up passing out from my vasovagal attacks, but it makes me close to.

The following few days I continued to try and rest as much as I could and worked on the mirror wall feature, I was painting.

I also began having issues with my TPN bags ending early… It seemed that some of them were being underfilled, so they were ending 20-30 minutes early from my change time which was causing a lot of problems symptom-wise (it took a lot of me calling my supply company over the course of weeks to try and fix this).

June 13th, I completed my mirror wall and spent some time coloring in some old drawings of mine.

I wanted to try and have as relaxing a day as I could since the following day, I was going to have all of my autonomic testing done. In the evening I decided to watch Star Wars because I had always said that the tilt tables look similar to the carbonite block that Han Solo gets frozen inside of (it really does! - google it!).

June 14th- Test Day!

I walked into the hospital at 6:50 a.m. and the testing lab wasn’t open yet. I met a doctor in the hallway who was off duty, and we spoke a little while we both waited to get into the lab.

When I finally got into the waiting room, I had many eyes on me since I was once again the youngest in the room by decades.

It was really kind because as I was walking with the nurse into the back for the test, the doctor who I had met earlier wished me good luck.

The nurse and I got along really well as they prepped me for the procedure.

We made so many jokes and I enjoyed listening to the science behind how all of the equipment worked.

I began doing a sweat test which had me stand on metal plates while my hands were on metal plates to measure how much sweat I was producing with electric currents.

I then was put onto the tilt table and had a breathing in test, a holding breath test, ankle and thigh biopsies and the tilt table + cranial doppler test.

The doctor had come in for the tilt table and biopsy portion and I kept forgetting to keep my head still for the cranial doppler because I had been trying to help out the nurse with my TPN bag.

The biopsy barely hurt which I was thrilled about because it meant I had to get 2 lidocaine shots and then they did a punch biopsy to test for small fiber neuropathies.

When they were setting me up for the tilt table test, they had to put on so much equipment on me. As they were putting on all of the equipment, a window washer landed on the window!!

The window had the blinds pulled up and the window washer looked SO CONCERNED- it was HILARIOUS!

The doctors and I all looked at each other and started laughing because the room didn’t even look like a doctor’s office it was a laboratory and we all said that the window washer probably thought they were doing child experiments.

After the tilt table test, I had completed the other two breathing tests and then had my biopsy sites bandaged by the nurse.

As I got ready to leave the nurse mentioned how nice it was to meet me and that it was rare to find someone so happy in such chronic pain. -It felt nice to have someone notice that and appreciate it .

I fell asleep when I got home because of how early I had been up for the exam.

The following day I changed out my Band-Aids because the one on my thigh gave me a blister from how sensitive my skin is!

June 16th, I woke up after sleeping another 13 hours straight and had lots of abdominal pain, so I tried to stay off food again for the rest of the day. I had also realized that the end of June was coming up meaning I had missed another period in a row (my guess was because of the flares?..)

I must have superpowers because the following day (after just writing the previous day that I had missed 2 periods) I had my period start.

The following 2 days I had continued upper abdominal pain and nausea which was getting pretty normal at this point, but it made me try to continue to stay off food.

June 21st, I had lots of weird deep chest pain and heart palpitations all day. I figured it was just my line poking me in the wrong place (because that happens a lot when I’m sleeping on the central line shoulder) but it was pretty uncomfortable to have it all day.

I was also getting ready that day to go to my GI appointment, but I got a call as I was getting ready that the appointment got cancelled. So, because of this, I spent the afternoon drawing my parent’s living room instead.

The next day I had gotten the picture frames for my living room posters, so I spent the day putting them up (which made me so fatigued BUT they look gorgeous).

June 24th, I had a dentist appointment, and it was also the one-year anniversary since my most recent flare. It was weird to think that a year ago today I had no idea that the flare would end up lasting as long as it did and would result in me being on TPN.

The dentist went really great, and I had been given a new hygienist who was super kind and we got along really well.

After the appointment I decided to go on a walk because I wanted to try and spend the day in opposite of how my day went a year ago.

I ended up walking TWO MILES which was insane, but I was really proud of myself for getting so far and making sure my walking pace was better.

June 26th, I slept 12 hours straight (you see how this is a pattern?) and decided to spend the day repainting my TV stand.

From working all day painting the stand I did have to take nausea medication in the evening, but I was proud of how well it turned out.

June 27th and 28th I had issues with my blood pressure being really low, so I had a lot of lightheadedness and fatigue.

My nurse went ahead and drew my iron labs to check to see if that was the cause of why my blood pressure had been low the past couple of days.

I spent the following day resting since I knew I had my GI appointment the following day and wanted to give my body as much physical and mental rest as I could.