I’m really tired today… a week of restless, topsy-turvy, bed-headed non- sleep.
With no Hepatitis in sight, ma petit foie (that cartoon liver of mine) is easing up on it’s squeaky complaints, but just as Imuran leaves the scene, another kid arrives on the toxicity block. It’s the “Big M” – Mr. Methyltrexate; a cancer drug that Rheumatoid Arthritis patients take in lower doses and apparently, Lupie patients too. And so, the search for a suitable replacement for my old friend Cyclophosphamide (Chemo) continues.
After going up a whole 7.5 mg of “Evil P” (which is most likely the cause of my nights of non-sleep), I am now holding steady at 10 mg of Prednisone. I haven’t started the “Big M” quite yet. I told my rheumatology nurse today that I decided to forgo my other option, Cellcept; the side-effect heavy drug I sidelined in favour of Imuran. The Big M has it’s own list of sicky-ickyness, but the info sheet claims a bedtime dosage could relegate all the pukey, achy fun into sleepy slumber. Sure, as long as you can actually sleep. Of course, it’s stupid to speculate on such things when I haven’t even received a call from the pharmacy to pick up my new bag of goodies.
“People on Methyltrexate can be flare free for up to one and a half to two years. That’s what we want, isn’t it?” My rheumy nurse asked as I stared at the Methyltrexate Info Sheet. I nodded. Sure. One and a half to two years. That’s good, right? That’s good for a Lupie like me, right? I had always convinced myself that I was one of the lucky ones… just a mild case of Lupus, that’s all this was. I’m fully realizing the extent of my denial. How can it be mild when I had organ involvement from the very start? I was never medicated properly. To Dr. H, my wonderful new rheumatologist, well-medicated means little or no pain. Me? I thought properly medicated meant somewhat tolerable pain. It had never occured to me that a person with Lupus could live without pain even if they were taking meds.
“Take your time,” my rheumy nurse said reassuringly. He was talking about the choice between Cellcept and Methyltrexate of course, but I was thinking more about the choice to literally TAKE MY TIME, to take it back, to OWN it, even if it’s just for a year or two. Let’s make it pain-free. Let’s work part-time. Let’s make it MY TIME.
I glanced up at the torquoise hospital sign that was hanging above us as we spoke in the corridor. The rheumatology clinic was in repair, resulting in a temporary change of location in the general hospital. I had found my way there with slow and careful steps, wary of the queasy feeling in my stomach. Sick people were everywhere, on wheely beds and chairs, beside me in the elevator… ME in the elevator. My brain fuzz clicked on, buzzing like a neon sign at dusk. When I approached the unfamiliar receptionists, that’s when I saw it. The white lettering on the floating, blue-green sign said: NEUROSCIENCE. Out of every unit in that hospital, Rheumatology was moved to Brain Central. I managed to smile at the cleverness of the Universe as flashbacks of Lupus Cerebritis psychosis filled my fuzz-buzzing head.
With one last glance at the sign, I navigated my way back to the elevator. Almost immediately, I passed another unit to my right that I hadn’t noticed before:
SPIRITUAL CARE DEVELOPMENT.
I smiled effortlessly this time. Nice one, Universe.