This post is written especially for Gayley and her kindness. Gayley, there is something very special in the mail for you!
Mid August, and we are beginning to detect a change in seasons as summer rolls into its final stages. The heat and humidity of the day are still too much for me, especially since I'm burning up on the inside with a fever that ebbs and rages but never quite leaves me completely, but long afternoon rain showers are becoming more common, the evenings fall earlier and bring with them a drop in temperature. Before bed we open all the windows and turn the fans on, and the house takes a deep breath as the air starts moving through.
I can not remember ever being so enthralled with the seasons turning, not even in Vermont where the shift from summer to fall is so sharp and vibrant. I have never wanted, or needed, time to pass as quickly as I do now. Every day that passes takes me one step farther from the past winter and spring, which, looking back on it, feel like nothing but a fog of fear of despair.
These days- in their sameness and their routine of pills, chores, rest, walks- blend together, and on the days where it seems like I am not recovering, the very essence of time starts to blur. Doesn't there have to be change in order for there to be time? Maybe not. I don't know. But then in the midst of such questions I'll see an advertisement in the paper for Halloween decorations and it reminds me that things are moving forward, however slowly, however strangely.
Whoever designed that particular advertisement and arranged it in the right hand corner of the Mountain Times had no idea that a girl, sitting at the breakfast table one morning, scratching the dog with her foot, would find such triumph in reading it. That she would stand up and exclaim, "I KNEW IT!" then march it over to the bedroom where her husband was still waking up and say, "You see? This summer will end! It should be over soon!"
Not that it's been a terrible summer, not at all. I listen to a podcast called Lyme Voice where on each episode they discuss their "Fight Heal Live" mindset. I believe that I spent the past three seasons Fighting, and somewhere back in June I transitioned over to Healing. I can't wait until this is all behind us and I'm back to Living, but healing is a breeze compared to fighting.
Fighting was fear and convulsions and herxing and tremors, fearing food and telling my husband I was ready to give up and crawl back home to my childhood bed in the upstairs of my parents' house. Fighting also meant taking my medicine at exactly the right time every singe day, spending hours each night researching and taking notes, weekly acupuncture and therapy and daily PEMF treatment, salt baths, saunas and screaming and conjuring an enormous amount of strength and courage just to get out of bed every morning.
I wouldn't describe my summer as anything like that. Now I sit across from Whitney at the cafe and compare symptoms the way two mothers might compare the behavior of their two year olds. We roll our eyes and pay half attention- what's new this week? I'm sure this stage won't last too long, what else is new?
Yesterday I even forgot to take the Killing Medicine in the evening, which was not good, but it meant that my illness was not the first thing on my mind. Dave and I were at the YMCA swimming leapfrog laps, which means we swim under one another like leapfrog (four whole laps!) and we were having the greatest time, when we got home it was almost 10pm and after taking the dog for a walk we went straight to bed. In all the normalcy I forgot to swallow my Omnicef, Cipro and Mepron, it was fantastic. And it set me back one whole day.
I went to see a regular doctor the other day, not a Lyme specialist, and he frowned and appeared quite concerned about all of my enlarged lymph nodes. If my CBC was off just a little bit, he told me, he'd send me to the hematologist. I left that office shaking and light headed with fear and frustration- I'm so
tired
of this! Every time my phone rang for a week I'd jump out of my seat but it was always something innocuous- the computer store, the North Carolina Democratic party, a wrong number. Eventually the results came by mail, everything is normal. The doctor called later that day with a follow up. "Who knows," he said. "With Lyme, all bets are off."
My LLMD, June, told me my last visit that she's thrilled with my overall progress. In two weeks she's starting me on a four month course of Rifabutin, Minocycline and more Cipro and after that- I don't mean to jinx anything here, but I could transition to a year of maintenance antibiotics, which sounds like a walk in the park compared to this past year.
One thing she made clear, however, is that because of my personality, I'm at a big risk for "Blowing it." Those are her words. David agrees with that wholeheartedly. He sees me wanting to take on more and more as I start to feel better- more writing assignments, bigger excursions away from the house, more exercise. We've agreed that traveling to New Hampshire for alternative treatment at a Lyme Clinic in September, a couple of low-stress articles for Roots Rated and a low residency course in positive psychology coaching that I'm starting in October along with Whitney should be more than enough. I'll travel home for Christmas but no trips besides that.
Other than that, it's just more of the same. Finding waterfalls to swim beneath, writing thank you letters, swallowing a handful of medicine each night to get to sleep, listening to podcasts as I do the dishes, trying to speed up time with my mind, keeping a tally of every clue that autumn is almost upon us, trying not to blow it.
