New Symptoms on A Long Overdue Trip

As a lupus warrior who got diagnosed with Sjogren's and non-Hodgkin's lymphoma, I have been very hesitant to travel. I didn't know how my body was going to react. With Covid cases rising and people not wearing masks it made me even more nervous.

But since my birthday was coming up, I decided to make the leap and book a trip to Orlando with my husband, and then when we got back we would go on a road trip with my parents upstate to Ithaca.

Packing and itineraries

I was excited and anxious about these trips. It had been over a year since I took a vacation or had been on a plane/road trip. So I had no idea what to expect.

I began making a checklist to ensure I packed everything I needed. The top things in my carry-ons were my medications, sunscreen, umbrella and plenty of masks. These are all a must for any lupus warriors.

I also planned out our itinerary and made sure I planned out rest time. Having multiple chronic illnesses, fatigue is a major thing that affects me. So I planned days when we got to sleep in, or even had naps in the afternoon.

Airport and plane paranoia

The day before we flew out, we took at-home Covid tests to ensure we weren't sick and good to go. Thankfully all negative. We had an early flight but I just couldn’t sleep. It was a mix of nerves and excitement.

Once we were at the airport, my anxiety levels went through the roof. I saw so many people and barely anyone wore masks. My husband tried to calm my nerves with some Starbucks.

Once on the plane we sat down and wiped down the seats, tray table and screens. I was so paranoid thinking about all the what ifs.

But I managed to watch a movie and 3 hours later we touched down and were welcomed by the sunshine of Orlando.

Making fun of our masks

We enjoyed our first night at Icon Park. Went to the museum of illusions and rode the ferris wheel. Unfortunately, we were met with people who made fun of us for wearing masks, especially outdoors. It was disheartening to know that this was our reality. But we had to do what was best for us.

Because of my health I would be masking forever!

Day 1 was done and I was feeling great that we finally took the plunge on a vacation.

A new lump

But, the next day when I woke up, I was doing my morning face routine and felt a new lump on my face. I began freaking out because this was how it all started with my lymphoma diagnosis. I woke my husband up and asked him to confirm what I was feeling. He jumped out of bed so fast and said he felt it too.

I messaged my doctor but since it was a Saturday I knew I wasn't going to hear from them anytime soon. I began to regret my decision on this trip. My husband told me its going to be ok, and to just monitor it for now. Thankfully I was not experiencing any other symptoms.

My doctor's advice

We tried to enjoy the rest of our time in Orlando and even had a trip to Disney World planned out which a was a great distraction for me. For anyone that knows me, Disney is my happy place. Thankfully no new symptoms appeared but the lump was still there. Monday finally comes around and my doctors messaged me back to just monitor for now since no other symptoms have appeared.

Our time in Orlando was really nice and I enjoyed our time there despite the craziness of this new lump.

More new symptoms

Soon I was off to another adventure with my parents and husband upstate. We wanted to take in the fall foliage and get some fresh air away from the city. It was the most breathtaking scenes and I couldn't believe a place like this was real. It was just so calm and serene. We hiked for hours taking in the scenery. This was something that we were not going to see in NYC so we were all taking it in.

Unfortunately, on our way back my ear started to hurt. I knew this was the early symptoms of something bad. Soon the earache turned into a sore throat and stuffy nose. I went to urgent care just to double check it wasn’t Covid, the flu, RSV or strep. I was negative for all and it was just a viral infection. Fluids and rest was all that was prescribed.

My body paying for my trips?

Sitting in my room now with a full blown cold, I contemplated whether I should of taken these trips. I felt that it was my fault for having fun and now my body was paying for it. Was is the airplane ride, was it the long hours, was it the weather. So many scenarios played in my head as to what could have caused this. I masked up. I washed my hands. I was so careful. But, I guess not careful enough. Especially now with so many people not masking.

Doing the best we can

Even though I was super sick now, I did make incredible memories. This was not how I imagined the first few days of being 34 would be. But, I still enjoyed my trip and thought I can't live in a bubble forever. I'm always going to have risks but that should not diminish my way of living life. If I let my illness control my life like that it’s like I've let my illness win. My husband also reassured me that it was not my fault and we did the best that we could with the situation at hand.

In the interim, I am going to continue to rest and will hope and pray that the next vacation has a better outcome.