The days following November 12th, I continued to be on the phone sorting out travel stuff and gave my mom a list of medical supplies to buy to have at the house (IV pole, sharps container, etc.)

I also began prep packing to see how everything would fit since we were told my supplies couldn’t be shipped to Texas since they didn’t have my supply company where I lived. Therefore, this meant I had to have a minimum of 3 carry-on bags carrying my medical supplies (not including a regular carry-on and my dad’s bags).

By mid-November, I was able to walk around more (switched out my ambulatory wheelchair pin for a “please offer me a seat” pin) but was still lightheaded after walking for a bit so I still needed to take Lyft’s everywhere and needed to sit down once I made it to my destination.

On November 15th I headed to a new hospital to look into the autonomic issues and other weird body issues (like the tremors and hand locking). The appointment went super well, and the doctor was so kind. Everything they asked they genuinely listened and wanted to look into it. I was sent to the blood lab after where they took 12 tubes of blood! I had to come back the following day to do 2 more tubes because they wanted to send them to Mayo Clinic but they just didn’t have the correct tubes in stock. I had also been given a 24-hour urine sample kit that I needed to complete and bring back.

That evening I received a phone call from a super kind member of my supply company who helped me arrange more for my upcoming travels. They helped me feel a lot calmer and I got a lot of my questions answered.

On the 16th, I got emails from the hospital for my Hickman procedure date and time with a confirmation that I would be under anesthesia, but they had the incorrect dates, so we waited for them to reach out again with and updated schedule.

I went to visit my old boss (from the summer when I was working) and it was super nice getting to see them again, this time with me out of the wheelchair.

In the evening I received a phone call with the finalized central line surgery date which was November 30th at 8 a.m.

I had also gotten some of my lab results back from the hospital I visited the other day and a couple results were unusual but nothing of concern, so I notated them in my binder and knew I’d get more answers about it at my next appointment.

November 17th, I noticed that after physical therapy my injured toe would swell up after activity and walking and then shrink back down when I elevated it and rested.

From the 17th-18th the soup broth I had been so consistently taking for many months began to irritate my stomach and cause hives, pain, etc. I had restarted the Carafate to see if it would help my symptoms, but it didn’t.

I also completed my 24-hour urine test on the 18th and headed back to the hospital to drop it off and complete those last 2 blood tests.

Also, through this time, I was waking up every morning at around 8am-10am racing to the bathroom to pee. Usually at this time every 2 hours I’d have to pee with the amount of fluid being consistently pumped into my body. Sleeping meant I wouldn’t be able to pee for many hours, so I’d be woken up from sleep in the morning to go do so.

I continued prepping packing ideas and how we were going to fill a carry-on with ice to hold my TPN (we were going to get a cooler, but it wouldn’t arrive in time, so we needed the next best thing).

On November 22nd, I had another GI appointment just as a formality before the surgery. It was with the nurse practitioner and was very bureaucratical. My dad and I did try to get in (for the millionth time) that we wanted my iron infusion to be moved closer since we both believed I was anemic and hadn’t been getting iron for very long.

-This didn’t work. Eh, we tried.

Finally, November 23rd arrived!! Travel day!!