My life with lupus. Hmmm, I’m not even sure what that means to me just yet.
Last year I began the journey to a lupus diagnosis. I’m not quite finished with the diagnosis, but we’re close. Anyway, I’ll call it a journey since it started with a journey.
Last year I took a girl’s trip with my closest friends. 7 days in Belize. Leading up to the trip I’d not been well for months, and likely longer than that. Low-grade fevers for years maybe, ramping up to extreme tightness and pain in my joints. My hips in particular were getting worse. A family history of early arthritis let me shrug, pop a few more Advil, and try some stretching exercises. The pain interfered with work, sleep, and life in general, but I shrugged and kept going. Until midway through my trip.
I realized one morning that none of my 3 girlfriends were literally struggling to get out of bed. We were the same age, similar fitness levels, and my friends weren’t catching concerned looks from the tour guide as we scrambled up boulders in a water filled cave.
Did he catch my wince? Was it my gracelessness as I pulled myself up the rocks? My quickness to tire? By the midway point of the trip I was measuring my pain level at a 6 on a 10 scale, and teetering over into the 8 range at night as relayed in an email to my boyfriend back home.
An email where I promised to get it checked out when I got home. Extreme fatigue a few weeks later finally led me to go to the doc to see if I had West Nile – a diagnosis my boyfriend had just received after a hike in a local state park. Negative. Within days my hand had swollen with a pinkie joint the size of a golf ball. Gout? Trauma? All ruled out, but finally with a combination of my fevers, exhaustion, and x-rays I had a referral to a rheumatologist. Combined with a family history, and pretty distinct symptoms he seems pretty certain of the diagnosis. I think. I’m on a 10 month wait for a 3 month follow up. That final test he wanted to check in October? I’ll hear about the results in June.
In the meantime I planned another trip for the last week of April. This time with my boyfriend of 5 years. A new kind of adventure travel for us. Again to Belize, his first trip out of the country, with a side jaunt to Guatemala. New way of travel in many ways. Me determined to avoid any flares caused by overdoing it, sun exposure, etc, and coming from a lower fitness base than the year before. Him with a chronic kidney disease fearing food and waterborne illness and what it could do to a pair of kidneys that may only have 20 more years left as they are right now. We researched sun protective shirts and washes, invested in loads of sunscreen, borrowed a water filter although we were planning on traveling mostly in areas of safe water. Our trip was planned to involve air conditioning, slightly less rustic rooms, and lots of cushion for rest days if needed. I like to think that the planning allowed us to live in the moment during the trip. We had a blast. Snorkeling, Mayan ruins, zip-lining, monkeys,memorable bus rides trying to decipher the local slang, and good times catching up with old friends.
Even better my boyfriend has caught my extreme case of wanderlust so I think we’ll try it again in the future. The list of places is growing faster than we’re going! No matter the diagnosis, I think that’s what we’ll do. Research, plan, and go for it. Seems like a great way to tackle a trip, or a diagnosis.
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Jessica is a 31 year old who dreams of travel to faraway places, loves to blog at Notes from the Garden Spot of the World, Twitter as @gardenJess and read. Her brand new kitten keeps her time occupied, as does her garden. She welcomes new readers and new friends.
