Lupus

Lupus, Laughter, and Loving Support

Valentine’s Day was a telecommute Friday, at the end of an odd week.  Mid-week saw a couple of days diverted due to a sudden respiratory infection, but after seeing the doctor and taking some antibiotics, all was much better.

The house whispered soothingly throughout a productive day.  Alone with my tea and laptop the hours passed computing quietly about business issues and communicating to other colleagues working remotely.  My chair was enveloped in warm indirect light streaming through a living room window.  My winsome little dog curled up on the rug next to my feet, as the melody of windchimes sang peacefully in the breezy yard just outside.

cafepino pizza

As twilight began to fill the yard, the timers in several flameless candles lit in the living room and dining room.  As I finished a last email to my boss, my husband arrived with gifts — flowers, a jar of red vines, a big bag of popcorn, iced valentine cookies, and a couple of pizzas.  We had decided a cozy night at home would be an ideal way to share our evening.

Dinner and a movie included a favorite comedy film about a young woman who lost her ability to form short term memories after a serious head injury.  My situation was all too similar to the gal in the movie.  We chatted and laughed about how bad my lupus had been many years ago, before treatment with Rituxan and Benlysta.  Those were the dark days, by comparison.  But, at the time they didn’t seem as bad as they seem now, in retrospect and in comparison to the incredibly improved state of my health and mental recovery today.

brain x-ray image

Each time we have watched this film, it has triggered a comparison of me and the girl in the movie, and how my lupus had changed for better or worse since the last time we watched it.  This night we reflected gratefully on the realization that my mind and cognitive function is currently better than any time we can remember over the last thirty years.  Although morning brain fog and some other aspects of lupus are ever-present, my cognitive acuity is the best is has ever been.

He remarked how my growing piano skills are also continuing to improve, and pondered how persistent piano training over the last dozen years has helped establish new neural pathways around the CNS damage caused by lupus.  We are grateful for the changes, and have never ceased to pray for God’s help with this uphill battle to regain what lupus had temporarily stolen.  We laughed at the movie, we laughed about the joy of our nearly forty years of being in love, and we laughed about the joy of seeing a recovery we had once thought could never be achieved.

CNS lupus, butterflies and a minor milestone piano performanceCounting our blessings, we finished off the movie with popcorn, red vines, and cola.  Tossing an occasional piece of popcorn to little Annie dog, we enjoyed a quiet lovely evening filled with talk of lupus, laughter, and loving support.

Without my husband’s support through the bad times we might never have made it to this good time in our lives.

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