On a recent flight from Miami to San Francisco, I was reminded of another trip to California where I met up with other psoriasis patients for the first time. We were gathered for a National Psoriasis Foundation conference in San Diego. I was nervous and excited to connect and commiserate with new friends and learn as much about the disease as I could. It was the first of many “psoriasis trips,” and it marked the beginning of a lifelong relationship with the Foundation and a community of peers that helped me through some of my darkest days.
From its onset, my palmoplantar psoriasis was angry and unrelenting. During that trip, I was flaring spectacularly. My hands and feet were hot and plump with redness and ravaged with oozing cracks. Just getting through the day, let alone an airport and a 5-hour flight, was a challenge in terms of mobility and pain management. Nonetheless, the promise of camaraderie and the healing power of shared experiences fueled my journey, and I couldn’t wait to get there.
Back then, walking and carrying things was difficult for me during a flare and I shuffled around gingerly like an old lady in her 20s. I was timid and embarrassed about my psoriasis, and asking for a wheelchair or any other special accommodation never even occurred to me. I wore cotton gloves to protect my hands and packed a wet washcloth, an ice pack, and antibiotic ointment in a plastic baggie in my purse to relieve and moisten my tight, painful skin during the flight. Beyond that (and well before self-care was a thing), my approach was to grin, bear it, and make it to the hotel.
Lean on Routine
These days, I understand that traveling well is part of living well, especially now as we navigate the obstacles of an ongoing pandemic. I try to prioritize wellness no matter where I am, and in order to feel like a young lady in her 40s, I know that hoping for the best doesn’t work. It’s easy for me to slip into a vacation mindset and want to “live a little” when I’m on the road. Moderation, rest, exercise, boundaries, and prevention are all disciplines I am tempted to scatter to the wind when I am traveling. On this most recent sojourn to the Bay Area, however, leaning on my regular routine (adequate rest, staying true to my healthy eating goals, not overdrinking, maintaining movement, and meditation) helped me stay energized and keep up with my husband, who likes to run around his hometown like a teenager.
Journey as Destination
On the flip side, sometimes I can get so caught up in my routine that I forget to enjoy the ride. It can be a challenge to feel spontaneous and alive while also packing and tracking meds, anticipating flare-ups, managing pain, and saying no to a nightcap in favor of a good night’s rest. Being a generous, present, and empathetic colleague on work trips can also feel emotionally mountainous when I am inflamed and all I want to do is collapse in my hotel room. I am learning to lighten up about my limitations and afford myself some grace (and a little fun) as a complement to my best laid plans.
Share the Path
We are all weary travelers at times, and often think we are alone in our struggles. But when we open ourselves to new people, new experiences, and new ways of doings things, we discover that we are surrounded by teachers, guides, and comrades in arms. Managing chronic conditions doesn’t have to hold us back from closing the distance between us and the healing connections we crave.
During one of many life-altering conversations on that seminal trip to San Diego, I placed my swollen hand on the arm of a fellow attendee and he began to weep. He was covered in thick psoriasis plaques from head to toe -- a suffocating suit of painful, flaking armor warm to the touch. He wept because I touched his skin without hesitation, without recoiling, and without a second thought about what it would feel like. I didn’t hesitate because I knew it would feel just like home.
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