You hold a pill in your hand, a white, oblong pill, figure eight in shape. It's not small, by any means, but it wouldn't choke a horse either. And you would know. You've swallowed hundreds of pills over the course of your "treatment," if it could even be called that. Small pills, large pills, round and square ones. Pills of various colors, some coated, most not. Sometimes even capsules.
But this pill, it's special. It might put an end to the mutiny taking place in your body. Your kidneys, lungs, heart, joints, the rash on your face. Maybe this pill. Maybe for lupus.
Earlier that day: You're dressed in a paper gown and sitting on an exam table in a room that Beatrix Potter and her butcher might have co-decorated. Shiny posters pepper the walls: people with no skin, their muscles exposed and labeled or their bones or their joints. It's a grotesque yet sanitized look inside the human body, provided for easy reference when the doctor comes in to discuss bad news. The inflamed disc here, tendinitis there, swollen joints in the hands, feet, or knees.
Poster gore shares space with a kaleidoscope of plastic purple and yellow butterflies that hover around the room, each suspended with a clear line and tacked to the ceiling at different heights. A current of air-conditioned breeze gives them a fake flutter. Along the room's baseboard, painted tulips and daffodils snuggle in grass too green to be believable. Easter basket grass. No matter the season--summer, fall, or winter, like now--here in the exam room, it's always spring.
The nurse has already taken your weight, temperature, and blood pressure. She records these in your chart, confirms the cast of rebelling organs, and ticks down a current list of hurts. Everything, you want to tell her, and then you do. "Everything hurts. Just check all the boxes." The nurse writes quickly, dutifully noting your concerns. "And I'm tired," you add. "But I can't sleep. And my skin feels tight, blotchy." You feel bad, like you're complaining... because you are. "I'll let doctor know," the nurse says, and closes my file.
I hate this part, the waiting for doctor. And I hate that the nurse doesn't say the doctor. Just doctor. Like that's the doctor's name. Not Stan or Melanie, but Doctor. While you wait for Dr. Doctor, you think about Peter Rabbit and all the vegetables Mr. McGregor might have grown in this exam room.
You have an autoimmune disease, and you've tried a number of treatments. While there's no cure for the particular thing you have, there are pills to throw at it. Lots and lots of pills, including anti-inflammatories and steroids. But there's this new drug you might try, a malaria medication, of all things. You're a good candidate, Dr. Doctor says, and is making the recommendation, showing you some literature. "And the funny thing is," he tells you, "we're not even sure why it works. It just does." If it stops the pain, maybe enough to get some sleep, you'll try it. He writes the prescription and leaves. Plaquenil. Maybe this pill. Maybe for lupus. You're going to try it. See what happens. What do you have to lose?
Present day: Worry comes to me in waves, in waves that feel like drowning, like holding the breath. This thing is scary, this COVID-19, and I have good reason to be nervous. Generational concern.
You see, my mother has chronic obstructive pulmonary disease, COPD. She has asthma too, just for good measure. Every day, my mom takes meds to help her breathe. On good days, she takes them, on days a deadly virus isn’t sweeping the planet. I worry about other kinds of days.
My daughter is also immuno-compromised—her risk from a tango with death and the “big c,” a disease I will never capitalize. Ever. And then there’s me. I have an immune system that does’t function properly, and part of that condition involves lung weakness. You may know it as the weird cough I always have, the reason I clear my throat when I have no cause to attract attention.
My mother, my daughter, myself. These are worries that creep.
Other people too, family and friends, loved ones at risk. Nurses, firefighters, people who bag your groceries at Walmart. We’re at risk, all of us, because people in power did not take action when they should have, some even called it a hoax. Others laughed at my own concern, told me I was overreacting, snickered behind my back. My immune system stinks, but my hearing is excellent.
I'm not trying to play the blame game. Well, maybe a little--enough so you'll understand my fear and concern, my outrage. I want you to know these things because nothing much matters if you can’t breathe.
Here something for a Friday in April: I don't know how many days we've been in lockdown. I don't know how many potatoes I've eaten or how many glasses of wine I've sipped. I don't know how many texts I've sent or steps I've walked, round and round, in my tiny little house. I don't know how pounds I gained (can't bear to look) or how many cat and dog treats I've doled out. Everyone is getting fat at my place, even the pets. And I didn’t realize until just recently that the drug I used to take, Plaquenil, is the same one that everybody's talking right now for COVID-19. Dr. Doctor President Trump hails the drug in his press conferences, making premature promises about its effectiveness in treating this deadly coronavirus. When I took the pill way back when, I didn't know it as hydroxychloroquine, the generic name for Plaquenil. I took it every day until it damaged my vision, and then no more. And I remember missing it when I was no longer a good candidate because Plaquenil made me feel better. I took it for SLE (lupus) when the disease almost killed me in my twenties. One of the times. A lot of people take Plaquenil or hydroxychloroquine for lupus and other conditions. And now we have a crisis because there is a shortage. There's a shortage because Dr. Doctor President Trump tells people it's promising, and that hasn't been confirmed yet.
Now that I am mostly in remission, I worry about others, people who need this drug like I did, people whose conditions have been studied. I'm not trying to poo-poo the possibility for this drug as a possible cure or treatment for COVID-19. I hope it works, and that there is enough for the virus and for lupus patients too. My worry is this: SLE is not the shiny illness, not current and not in the news. Lupus kills mostly women, doesn't get a lot of fancy studies or notice in the press. Nevertheless, lupus robs them (us) of vitality and breath, just like coronavirus. So if you see me razzing Dr. Doctor Trumpy Trump, please don’t give me a hard time. I'll listen to the actual doctors. Let's give them more time at the mic.
I’m attaching a few things about lupus, how it feels to live with the wolf, day in and day out, and what happens when it breathes down someone's neck.