Confessions and revelations of a “high-risk” Quarantine Queen
I am crushing quarantine like a goddamn champion.
I’m living a healthy, happy, #pantsfree life, and my once very very fucked up body is healing a little more each day. I am a 46-year-old casting director in New York City. I also teach on-camera acting classes at studios in the city and at several colleges on the East Coast. Up until two weeks ago I was walking with a cane. I have a mystery autoimmune disease or two that has taken me to nearly every rheumatologist in the city. All the way to Minnesota to the Mayo Clinic, from which I came home early.
My overall experience with doctors and getting a solid diagnosis can best be described by the shrug emoji.
Bottom line, I can walk without a cane again. Prior to two weeks ago, the only way I could get around without severe pain in my knees, right ankle, feet and thoracic spine was when I was all lubed up on a combo of pain killers, NSAIDs and steroids. Which I was every day that I had to leave my apartment, which was nearly every day.
The world is a mess and too many people are dying. I am devastated about the suffering and loss caused by COVID-19. I am well aware that saying I’m having the time of my life makes me sound tone deaf and privileged. I’d feel like a much bigger asshole for saying this if I wasn’t in the high-risk, immunocompromised, vulnerable demographic, and staying in my New York City apartment for the foreseeable future. For those on the front lines and people staying home for people like me, a sincere thank you for your service.
I’m taking this NY P.A.U.S.E. moment to look at how my shit got so bad health-wise that leaving my home is a really bad idea right now. I’m not alone. 78.8% of autoimmune cases in America are women. Maybe some of you see yourself in my story.
It took a fucking pandemic for me to take even a teeny bit of care of myself.
One thing before I share my list of adulting-while-quarantining accomplishments that may cause some who are actively keeping liquor stores/weed dealers in business to roll your eyes. From late October through what feels like Hanukkah I was laid up with pneumonia, doing nothing but watching all seasons of everything Drag Race and Drag Race adjacent. So I filled my binge-hole pre-pandemic.
Here’s some of the cool shit I’ve done since March 13, my first full day at home:
- Cooked all my own food from scratch, and I can’t cook for shit. Combination of wanting to eat clean and being petrified of restaurant food right now, which I know is also over the top and neurotic. It is what it is.
- Took a nice, hard look at why I’m $50K in debt.
- Lost 20 pounds.
- Canceled all the crap I was spending money on monthly (with almost zero awareness) which was out of fucking hand. Like $145 a month for meat that never left the freezer. Or $47 a month for an unused Quickbooks subscription from 2015.
- Recasting both my bookkeeper and accountant. I know, that shit above is on me, but come on, right? Come on. Flag a bitch.
- Exercising every day.
- Getting almost-daily fresh air and sunshine on my tiny back patio area. We only get about 40 minutes of sunshine back there a day, so when I start to see light it’s like a drill sergeant yelling “GO, GO, GO!!”
- Waking up every morning at 7:30am. It used to be 10:30 or 11am. Really. Like on weekdays, too.
- Writing.
- Meditating at 8am daily with Jackie Stewart on the Journey LIVE meditation app. I mention Jackie by name because she is just super talented and wonderful. As a casting director, I can be a real judgey dick. Jackie’s the real deal.
- Showering nearly every day for both Zoom and self-esteem.
- Teaching classes I love teaching via Zoom.
- Raised my credit score by 40 points.
- Being more social (via Zoom) than I’ve been since my early 30s.
- Squeezing my butt cheeks together because I sit so much my butt is often dead. I think it’s literally called dead butt.
- Talking to my husband more. Like having real conversations as opposed to just grunting at each other as we watch “The Masked Singer”.
- Breathing.
On the whole, I’m feeling like a…
My confession is that I’m scared that when this is all over, that when we return to “normal”, I return to what was my “normal”. My “normal” was severe chronic pain and inflammation. My normal was constant stress and feeling like I could never catch up. My normal was barely being able to walk. My normal sucked balls.
Is a stay-at-home directive from Governor “Daddy” Cuomo the only way I can continue taking care of myself and getting better?
What happens when and if the world goes back to normal? “Normal” clearly brought me to my knees (if only I could get on my knees with this arthritis.) I find myself thinking some fucked up things.
Speaking of fucked up things, I have been on and off (mostly on) Prednisone, a corticosteroid, for nearly 20 years. Those of you that have ever been on Prednisone might ask, “Why would she do this to herself?” I sought out other options. All the other immunosuppressants…the DMARDS/antimetabolites…I tried all the biologics except one. The only one that worked put me into anaphylaxis at my sixth infusion. Prednisone is the only thing that reduces my inflammation a little, but it makes me angry, fat and murder-y, all of which are inflammatory. Vicious cycle here, right?
For years I was on Tramadol for pain. Kind of. It was more about counteracting the muderhole Prednisone put me in.
Yesterday I had a telemedicine appointment with my rheumatologist, who told me 12 times that Prednisone is literally destroying me from the inside out. My bones will decay, my insides will melt, etc. I asked her what our game plan should be, as I want to begin tapering down. Silence on the other end of the phone. But again she reminded me that the Prednisone is definitely “killing me”.
But back to the “fun” pills. Tramadol barely scratched the surface of my pain, but it made me feel a little more sane, a little less anxious, angry and edgy. A friend told me that if I didn’t get off the Tramadol that I’d probably end up dead or with a big ol’ seizure. He had his seizure in Thailand, which apparently really sucked. I had gotten up to a handful of five Tramadol three times a day. 15 pills. Sometimes 20. I was supposed to take four maximum. Then I got the seizure/death message and stopped requesting refills.
I’ve invested thousands of dollars at Eastern and Western practitioners of all kinds, desperately wanting them to fix and save me. I could say that I was doing ALL THE THINGS, all the while doing minimal “homework” at best — the day-to-day shit that makes these patient/practitioner relationships effective. I was a tricky little fucker. I can see that now. On the outside I seemed smart, likable, compliant. In truth I was a stubborn, willful victim, and in intense denial of the fact that I had any control over my own health at all. I also held a closeted belief that taking care of one’s self was narcissistic on some level, despite my deep appreciation for the hot, healthy bodies of others.
I was also pissed off. I wanted to be normal. I wanted to eat normal food like normal people. I wanted to do all the normal shit that normal people did like go up and down subway stairs and not be tired all the time. I also didn’t want to be someone who had to baby themselves, or meditate, or move out of New York City or whatever because they had low tolerance to stress. Fuck that. Not me. I’m strong. I’m different…more hardcore. A real New Yorker. Prednisone!!
All the while my body was screaming at me. And I was saying “shhhhh…not now” with pain pills, benzos, food, and stories on TV and in my head. You just gotta “power through” it, right? Isn’t that the WAY LIFE IS?
The late, great Louise Hay and Her Majesty RuPaul would together describe my mind-body connection as a Fear and Anger Extravagaaaanzah!
Fear and anger. Fight or flight. They take their toll.
My mom would not have wanted me to have the same story as her. She’d dehydrate herself every day so that she didn’t have to get up and pee, thus jamming more piano students into any given day to pay the mortgage. My mom would have wanted me to take care of myself. Instead, I followed her lead, but with far more Chinese food and pills.
After my mom passed away from cancer 7 years ago, I thought I could pull back on the hustle. Now that the person I was always subconsciously seeking approval from was gone, who gives a shit, right? Not so much.
I was everyone’s bottom bitch or best friend. Been a boundary-less mess since I was my mom’s Lamaze coach at the age of three and a half. A dumpster for other’s mishegas. I’ve got you, babe… lay it on me! I am ON IT! I can handle it! I believed that the only way to earn love, respect and loyalty — or even to be seen, recognized and valued — was to go the extra mile at my own expense. Over time, my body became inflamed to the point that, for years, my CRP (C-reactive protein, an inflammation marker) hovered at 89–100. It should be 0–5. A total goddamn dumpster fire.
My crappy health was a shitty twist of fate but also, I believed, a testament to my strength! I sure as fuck deserved the ramen at the end of the night! Instant gratification outwitted self-care at every turn. Meanwhile, at work, I stayed in a chair, letting my assistants “be my legs” so no one could see me hobble.
Which brings me to another confession. Being unable to move without pain/cane is a very easy way to have those nearest and dearest take care of you.
I have recently discovered that I really want to be taken care of. Which I can ask for. And I can make the choice to care for myself, like all of my therapists have been saying for decades. (I see you nodding, Jonathan.)
Autoimmune diseases and chronic, systemic inflammation were on the rise before COVID-19. Its own global health crisis that has kind of been on the DL. Why? Probably because it’s primarily a women’s issue. We are the ones that are struggling…suffering. We are doing too much, for too many people, too fast…and burning out.
I don’t know how long I have on this planet, I may as well live each day like they’re numbered. Easier said than done, and I don’t have kids and whatnot, but I can choose not to engage with complete bullshit, and do stuff every day that makes me happy. It took a pandemic to change my perspective and behavior.
I’m doing all these things each day that put my health first. Like my morning routine. And trust me, I’m getting on my own nerves writing the words “morning routine”. I feel proud of myself, like a good parent, and I don’t feel self-indulgent doing any of it. I feel good. I can now walk without a cane! I can stand and do dishes. I can get down on the floor most days to do physical therapy exercises! Next, I may try doggie style again, who knows?
Another confession. I still catch myself in the fight-or-flight act daily. This past Friday, while wanting to finish this article and reading a draft of my sister’s upcoming book, a commercial producer called and asked me for a cost proposal for casting a project with a “hopefully in July!” shoot. I gently reminded her that I had written out costs in two emails delivered earlier last week. Silence on the other end of the phone…okee dokee. Knowing full well that even self-taped auditions wouldn’t begin until June at the earliest, I got RIGHT ON THAT COST PROPOSAL! I felt compelled to do it at that moment and no later, pushing off the things I really wanted to do. Why? Out of fear that the job might go away? They’d choose another casting director? I’d lose out on the potential money? I know I am still hanging on to bad habits…they are hard to break. But I’m catching myself in the act, and that’s a good start.
This is what I also know:
My character strengths. Honesty, humor, love, social intelligence. I’m focusing on those.
What brings me joy. I’m doing those things. Besides the beach. At least when we are back, I’ll be able to walk on it.
Who gives me liiiiiiiiffffe! I’ve never been more connected to friends and family, even if it’s virtual for now.
What gets me healthy. I’m doing all the things…and it’s paying off.
That stress fucks me up. That shit is no joke. It’s my Kryptonite.
I’m working on it.
I’m not sure I ever had to power through to be liked, loved, or good at my job. To deplete myself. To live in a constant state of fight-or-flight. Maybe I just needed and continue to need to remind myself the words of my aforementioned meditation teacher, “Stay awake.”
I’ve been looking for The Wizard this whole time, but the “Wizard” is a story…he’s not gonna save me. I am Dorothy. I am The Scarecrow, The Tin Man and The Lion. The gifts and the power to heal myself have been within me all along. It just took a pandemic for me to click those heels.
