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Vacationing w/Lupus

I need a break.

A common phrase to say after a long day at work, taking care of family or just being damn tired. Then the planned vacation does arrive and the break from daily life also arrives. Unfortunately, Lupies, a break from chronic illness is not possible. Those little moments of relief are small and fleeting. During the summer break, my New York family flies down for a week and we rent a beach house in St. Augustine, FL.

(St. Augustine is a city on the northeast coast of Florida. It is the oldest city in the U.S., and is known for its Spanish colonial architecture as well as Atlantic Ocean beaches). The beaches are lovely, fantastic fresh sea food, beautiful coastal art works and The Castillo de San Marcos. Its a wonderful time. I highly recommend the trip. So what happened?

Lets start with the preparation of going, the travel, the erratic food/drink schedule, the daily trips, everything is out of whack! I relied on my medical cannabis like it was going out of style. I cried five out of the seven days during various moments from physical despair. I spent a lot of mental energy focusing on my present surrounding so I would not just start holding myself and wail in my desperation. I want to participate. During the early hours or late evenings, sun exposure is "Lupus kryptonite," I sat at the edge of the beach. The waves would rush over my lower body. I touched the water. I smelt the salt air. I felt a relaxation around the current of pain. Vacation is a lot to handle. A lot of movement, a lot of intent, a lot of sensory overdrive for Lupies. Upon my return home, it took me three days of bedrest for my flare-up to calm down. Six days later and I feel ok.


“She made broken look beautiful and strong look invincible. She walked with the universe on her shoulders and made it look like a pair of wings.” — Ariana Dancu

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