March 25th- Moving Day!!!!

I was so excited for moving day to be finally here because I’ve always dreamed of living alone since I was a little kid. Since getting sick, I wasn’t sure if I’d be able to do it, but I really wanted to try.

Having my own space was something I really needed because among all of the chaos and unpredictability of my illness, I wanted to be able to control the space I’d be living in.

I had also spent 6 months planning the design for the space and had put a lot of thought into my goal of, “making the inside just as exciting as the outside” since I knew I wouldn’t be able to spend a lot of time outside of my apartment because of fatigue and flares.

I was so excited and ready for this new step in life to begin!!

I woke up early to pick up my keys and headed into the new place to set up the internet and sign some papers.

Later that afternoon my mom arrived, and I got to show her the new (empty) place!

It was also the first time I was seeing my mom since getting my central line put in (since I saw her last when I had my PICC line in).

We built the couch together and spent time bringing things from the other apartment into this one.

I was super lucky that my roommate’s mom was in town as well helping them move, and they kindly offered to help us out since my mom wasn’t in town for long and I couldn’t go up and down moving stuff.

The second day of move-in early in the afternoon we completed moving everything in!!-Yay!! Right on schedule!

I had ordered some peel and stick wallpaper that my mom helped me put up and it made the space look so cool!! Everything was coming out to how I designed it in my drafts!!

I spent a lot of time unpacking everything and often got really fatigued towards the evening from working on things.

My mom and I had a lot of fun putting everything together and finding more individualized pieces for the space.

On March 28th I turned 20!! I also had classes, so I went to them and then got home to continue decorating and designing!

I had made a sort of “gift-to-myself” for my birthday which was the edited letter to my care team that I had written back when I had the enteral feeding flare that I was saving to send on my birthday.

I had made a big decision as to where I wanted to move forward with my care, and it was the first time I was going to stand up for myself and my needs before my doctors. I have included the letter below with any privacy information redacted.

An image of the letter Emma wrote to her care team saying she wants to remain on NPT in order to have a better life because "although being bed bound is being alive, it's no way to live"

An image of the letter Emma wrote to her care team saying she wants to remain on TPN in order to have a better life because "although being bed bound is being alive, it's no way to live".

The following day I said goodbye to my roommate and her mom, and that evening said goodbye to my own mom since she was flying back the following day early in the morning.

I spent the first day alone in the new apartment feeling so overjoyed and finally at home.

I came back from classes so excited to go back to my own space to wind down and just be.

As new furniture continued to come in, I would bring it upstairs into my apartment (using a cart) and build it myself!

I loved the space, and it did everything I needed and more. I felt a lot of relief being able to have control over the space and to be able to spend time in different areas of the apartment and be creative.

My first decorating project was making the kitchen green!! I had gotten more peel and stick wallpaper and a countertop peel and stick to make the kitchen match with my theme. It took many weeks, but it was worth it!!

I still had my usual health issues, but it felt much easier to manage in the new place.

The apartment also happened to be a handicapped apartment, so it made it really easy in the case of an emergency, for EMTs to fit a stretcher into the house (and not hit things or have to move things).

It also made it really great for my wheelchair because when my dad was coming in May, we were planning on using it for my endoscopy.

I spent a lot more of my free time resting in different spots and doing more creative outlets like making a career vision board.

The house design did exactly what I wanted which was to inspire me to create- something I hadn’t done in a really long time. I was so glad to have different spaces to be able to do that in.