After the mashed potato flare ended, I was back out of the wheelchair and walking again (which I am very fortunate to have been the case).

I was excited because I was headed to my school on October 30th to watch the production that I had been assigned, but wasn’t able to finish working on since I took a medical leave of absence from school.

I had been planning what I was going to wear since I didn’t want to have to wear my sweatpants. I also wasn’t sure yet if I was going to take the wheelchair or not. I found an outfit I had liked but the problem was I had still been to bloated to fit into the pants, so I put on a scarf overtop like a shawl to cover the fact that the pants were unzipped.

On October 30th, I decided I was going to walk there (took a Lyft to get there and then walked inside). I was so excited and also a bit sad seeing all of my friends having fun and getting to work on shows. It was a beautiful production, and I was so glad to have been feeling well enough that day to have seen it.

On Halloween I had my roommate and my other best friend come over and we played games with my dad all evening. It was super fun but from laughing I started swelling up a bit from my stomach being moved.

On November 2nd I had my dad start teaching me how to put in the vitamins in for my own TPN bags. Since my goal was now to try to go to school in the spring, I wanted to start learning how to be self-sufficient with my medical supplies.

I also began more routinely showering and was able to do it on my own. The prep for my showers also was cutting down to 15 minutes to get ready (which was way better than the 30min-1hr it took before).

On November 3rd I began having a good day in physical therapy since I was able to walk to and from the appointment. Later during the day, I received a phone call from my GI doctor that was surprising. I put the phone on speaker and walked into my living room with my dad and my roommate to listen in. They were yelling at me expressing their frustration with my case. They were upset that my case wasn’t progressing, and that they were not as kept in the loop as my primary doctor. They were also upset that I wasn’t trying the NSAIDs for the costochondritis at the moment and even said I should switch to a different doctor. I had also mentioned that I was planning on going to Texas for a few days for Thanksgiving which they weren’t thrilled about either (because we were trying to see if we could fit the central line procedure before).

On the phone I calmed them down by saying, “I understand this case is frustrating, believe me, as the patient, I get it.” I also said I didn’t want a new doctor (because this was the only one in the state that at the present moment, that was leaving me on TPN). So, I was absolutely going to do as much as I could to keep them.

After they hung up, my roommate and dad’s jaws were dropped. They were so shocked at the tone from my doctor, and I was so surprised I was having to calm them down.

I wrote a follow-up note to them clearing up any “lost in translation” items which I have included a photo of below with of course redacted information.

The next couple days, we further solidified plans for traveling to Texas for Thanksgiving and bought the tickets. I would be there for 5 days. I was super excited to get to see my brother who I hadn’t seen in a year. The stressful part of everything is the prep to fly was going to take weeks to contact the airports, my medical supply companies, etc!

We also decided to extend the central line procedure to be done in December since I didn’t want to fly to Texas in pain, and if there were any complications I wouldn’t have my doctors, etc.

I continued having my usual esophagus spasms and abdominal pain over the weeks but generally had much more energy to be able to handle it all with the TPN.

November 5th was the first day I began having hunger issues. I was starving and my stomach was grumbling, and it made me reconsider breaking the “fast”. It took a lot of self-will, but I managed to not crack and tried to do something else to distract myself.

Unfortunately, that “hunger craving” sensation hasn’t left me and only got much harder to hold at bay.

I understood why Gastroparesis’ slogan is “starving for a cure”.

On November 6th I went shopping for the first time in 4 months. I had gotten some new clothes for my trip and they fit better with my new swollen and bloated stomach that was here to stay.

I also had gotten some Thanksgiving tubie clips and catheter covers for my trip.

On November 8th, I spent the whole morning calling TSA and prescheduling my trip. I requested a Passenger Support Specialist (PSS) to help me get through the TSA line. *In my “Advice & Thoughts” blog tab, I have a whole article on how to fly with TPN (“Traveling With TPN”).

I also received a phone call response from my GI doctor in response to my email which was once again a bit heated. They wanted to urgently do the central line procedure and said it was extremely dangerous that I was waiting. I explained that I didn’t even know I needed the central line until my dad accidentally brought it up in an appointment. If he hadn’t, they wouldn’t have even realized how long I had been on the PICC. I remained calm and tried to get things cleared up so I could get the procedure done after Thanksgiving.

I once again sent a follow-up letter since the letters seemed to be comprehended more on their end then when I spoke. This second letter has also been included below.

On November 9th, stress was heightened as I was awaiting phone calls all day. I was on the phone with the airline to find out more travel info and all the documents I needed to bring. I was also on the phone with the airports themselves and once again TSA. I also called the supply company and was on the phone with them. I had heard from my primary that IR (interventional radiology) was going to call for when my Hickman Line was going to be placed. I had been told over email that they were going to place the central line that week, and the phone call was going to tell me when (but then that didn’t end up happening… all very wishy washy).

On November 11th, I worked on the art for my brother’s music albums in bed. In the evening my friend brought their dog over for us to pet sit and my roommates, my dad and I played games and laughed all evening.

On November 13th, I signed up for my classes in the spring. It was surreal but made the goal feel so much closer.

Fun and relaxing times were ahead but first I had to make it through getting all of the medical travel stuff scheduled and arranged!!