Traveling to California

Up until the night before traveling I was still experiencing a lot of pain (refer to my last blog post here) and felt very discouraged. I had planned this trip in mid-July, about two weeks before the consistent FOP flareups and other medical obstacles. Needless to say I was already looking forward to exploring San Diego with some of my favorite people to be around (they also happen to be related to me). I was terrified to think about the possibility of FOP preventing me from going, but it was out of my control.

Thankfully, I had manageable pain (not excruciating; able to be ignored for the time being) the morning of October 6th and was able to make it to the airport! However, I knew that traveling this time would probably feel a little different due to the circumstances.

Prior to my trip I decided it was best to pack a box of instant cold packs in my carry-on to use if I happened to experience tailbone pain on the flight. I also requested a letter from my primary care physician just in case I ran into any difficulties. It was hard for me to accept this new medical necessity even though it might not really seem like a huge change. To me, it means that my disease is progressing.

I ended up using a cold pack towards the end of the second flight. It surprisingly became a sort of ice breaker to chat briefly with the very kind man sitting next to me. He overheard me explaining the situation to a flight attendant before takeoff, so it wasn’t a huge shock when I suddenly told him I needed a cold pack. He reached for one from my tote bag on the floor and then pressed the overhead call button (we were afraid to attract awkward attention if we popped it ourselves). I was in quite a bit of pain at this point, trying to focus on my breathing to take my mind off the discomfort. The flight attendant eventually arrived to assist us in popping it at the front end of the plane and then returned a few minutes later. I was relieved to finally be able to sit comfortably for the remainder of the flight.

Approximately one hour and many prayers later I exited the plane and was wheeled (via a more modernized airport wheelchair) to meet a couple of my family members at the baggage claim! I was so happy, thankful, and excited.

The day after my arrival we headed right to the San Diego Zoo for part of the day! There’s something about being at this particular zoo that makes me incredibly happy. I think it’s a combination of being with family, seeing the polar bears and big cats, and just having the environment be so familiar. Also, it really helps that there are electric scooters available for rental (even one with the handle bars tilted slightly towards the driver which accommodated my limited mobility) at both the Zoo and the SDZ’s Safari Park since I’m unable to walk long distances. Pretty much everything is accessible in the scooter which makes it even more enjoyable while also conserving my limited energy.

The following days we visited the Safari Park, the Zoo again, and some state parks and beaches. We made sure to plan two break days where we stayed inside so I was able to rest. Whenever I travel I do my best to not overexert myself (even just getting in and out of the car a few times can be strenuous for me) but it’s frustrating when there’s so much I’d like to do within a time constraint. Prioritizing is key so that I’m able to experience the top things on my list and maybe leave the rest for a future trip.

Although I had wished that California would somehow magically heal me and I wouldn’t have pain, this was not the case at all. I had some level of pain every day of my trip. The simplest actions of getting ready for the day, sitting down to eat a meal, and especially showering forced me to need to lay in bed with an ice pack for at least 30 minutes to allow my body to fully relax. I call these inconvenient moments “pain attacks” because it feels like a rush of pain comes over me. The only way I can think of to describe this sensation is when you feel a sudden chill and your body shudders. Imagine the chill as pain that lingers and is only relieved by ice and rest.

It was definitely challenging for me to make this trip with the pain I’ve been having but I just couldn’t imagine not going. I really needed a break from what it was doing to my spirit. The incredible memories made, countless photos taken, and overall experience of San Diego was worth having to fight through the physical pain.

I believe that a piece of my soul was healed in California. I found so much strength and courage in each day, enough to remain optimistic about my life and my future. It was just what I needed.