July 2022

I started July with two trips to the emergency room for uncontrolled pain and nausea. The pain medicine I had at home could no longer control the massive pain spikes I would get with any bite of food or sip of water. My nausea also worsened to the point that it felt like I had never had my surgery in March. In addition to these symptoms causing lots of physical pain, it was hard mentally to feel like the surgery I had gone through hadn’t improved my life at all. While I knew that the surgery had relieved the vascular compressions on imaging, it was difficult to feel like the surgery was successful at all given the symptoms I was still struggling with every day. On both ER trips, I received multiple doses of IV nausea and pain meds. These medicines took the pain down enough for me to get home and get to sleep, but by the next day, I was in the same amount of pain once again. I felt like nothing we were doing was helping.

I also spent July continuing to adjust to life with a PICC line and TPN. I had to be connected to my TPN for 16 hours a day which dictated when I could do things with friends and family. I also had to continue to take care of my PICC line, making sure that it stayed dry and clean. The frustration I had with TPN and my PICC line increased a lot during July, as I felt like we were making no progress towards getting me off of TPN. In order to stop TPN, I have to be able to eat enough calories to sustain myself and maintain my weight. This is something that I am far from being able to do, and the lack of tests and appointments in July made me feel like I will never reach this goal and will be dependent on TPN forever. In the previous months, I was frequently doing testing or meeting with more doctors to figure out what was going on. But it felt like this process hit a pause during July. It made it hard to feel motivated to set up and run my TPN and keep my PICC line in good shape. But, as hard as it was, I did it every day.

Towards the end of the month, I ended up in the ER once again. This time, I tried different medications that my pain doctor had suggested. And while these medications caused crazy side effects like feeling super dizzy and confused, they also failed to provide much relief. I began to feel like there was nothing we could do to help my pain during my severe flares.

While my pain and nausea continued to worsen, I still managed to enjoy the days that I had with less severe symptoms. On my good days, I often went on a walk around the neighborhood with my friends or family. These walks seemed to take my mind off of TPN, my PICC line, my pain, and my frustration surrounding the whole situation. I realized how important it was to find ways to take my mind off of my health, even if it was only for a few minutes. I also continued to wake surf while we were at the beach. It is my favorite thing to do, and it really helps me to focus on something fun for a while. The ability to wake surf and go on walks helped to remind me to be thankful for what TPN and my PICC line have given me. Before I had access to stable, daily hydration and nutrition, I never would have been able to go on walks or wake surf as I was having trouble even making it up the stairs in May.

Overall, while I made no progress towards getting off of TPN or getting rid of my symptoms during July, I did make some progress in learning to adjust to my life the way that it currently is. I never could have imagined a year ago that I would have ended up so sick that I had become dependent on TPN and pain medicine just to make it through the day, but that is how my life is right now. And while this is not the life that I will have forever and isn’t the life that I want to have now, I am learning how to enjoy little parts of it, knowing that making it through the challenges that I face every day will make me stronger on the other side.