The Steroid Superpower: Living Between Lupus, Exhaustion, and Gratitude
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With an autoimmune disease, you become extraordinarily aware of how you’re feeling. Most days, I spend my time battling exhaustion and pain. It’s unfortunate because I’ve always been an ambitious person. I want to do more, create more, accomplish more.
But I have limitations. Or at least I did, until I discovered steroids.
When I was diagnosed with lupus six years ago during COVID, I was hospitalized with a serious complication called diffuse alveolar hemorrhage (DAH), a potentially fatal condition that causes bleeding in the lungs. After my third hospitalization, my doctors started me on an infusion treatment called Rituxan. I’ve been receiving it ever since.
Now, my life revolves around those infusions.
There’s an ebb and flow to it all. For a while after treatment, I feel wonderful. Then, slowly, the flare-ups begin to creep back in. That last month before my next infusion is usually brutal. Fatigue settles into my bones. My muscles become inflamed, and I spend evenings with a muscle stimulator strapped to sore body parts while trying not to fall asleep in the hot tub.
I feel like I’m drowning. It takes everything I have to drag myself out of bed at six in the morning and go to work day after day. It affects everything: my diet, my mood, and most of all, my creativity.
I’ve always been heavily influenced by how I feel physically. If my body feels miserable, my mind usually follows suit. (Thank you, Mars in Cancer.) But eventually, the big day arrives.
Of course, getting the treatment is never as simple as showing up.
Rituxan is outrageously expensive, so every six months I find myself tangled in a maze of insurance approvals. Apparently, I must repeatedly prove that yes, I still have lupus and no, I would not like to switch to a cheaper drug that may or may not work as well.
Once the paperwork battle is won, I take the day off work because the infusion itself takes about six hours.
I grab snacks from the hospital deli, settle into a recliner, and prepare for the experience. They bring heated blankets and rounds of iced juice. An IV goes into my arm, and then the magic begins. I am given an antihistamine and, even better, a hefty dose of IV steroids. Whatever they call it in the pharmacy, it feels like someone plugs my soul into a wall outlet.
The steroids kick in like someone hit the reset button on my entire existence. Energy. Focus. Confidence. Suddenly I remember all the things I want to do with my life.
Steroids are a miracle drug. Unfortunately, they’re also dangerous and ridiculously addictive. I spent three years on them, and the fallout was rough. Significant weight gain was only one of the many side effects. I’m grateful to be off them now.
But wow.
That infusion-day steroid boost feels like a gift from God.
It’s been two days since my treatment. I’ve slept less than five hours. Steroids eliminate fatigue to a point that borders on reckless optimism. For a brief moment, I imagine this is what it feels like to be immortal.
Having an autoimmune disease isn’t easy, but I try to find the silver lining. Before my diagnosis, I rarely got sick and almost never went to the hospital. I believed in toughing things out and secretly suspected that many illnesses were exaggerated. Lupus humbled me in a hurry.
It taught me compassion.
It taught me patience.
It taught me resilience and fortitude.
My energy levels may be unpredictable.
Some days I feel like I eat ibuprofen like candy. But it could be so much worse.
At the infusion center, I’m often surrounded by people receiving treatment for cancer. Through the curtain walls, I overhear pieces of their stories. Sometimes those stories bring me to tears.
Wives holding their husbands’ hands through yet another chemotherapy treatment. Young people. Elderly people. People fighting battles far greater than my own. Their courage puts my situation into perspective. Every time I leave that infusion center, I carry a prayer of gratitude in my heart and a little extra bounce in my step.
The gratitude comes from perspective. The bounce, admittedly, comes from the steroids.
For those living with chronic illness, I don’t pretend to have all the answers. But I do believe that pain can ignite passion. Bone-deep weariness can inspire brilliance. We learn to take the good with the bad.
My stories aren’t all sunshine and rainbows. The stories I love most are the ones that dig deep into the darkness before lifting us back toward the light. Those are the stories I strive to write because they’re the stories I’ve lived. They are inspired by my life.
And I’m grateful every day that I finally found the courage to share them with you.
📚 Book 4: A Karma to Kill For — Out Now
Book 4 is brutal, emotional, and the buildup to Book 5 is intense. I take you on a rollercoaster of romantic drama, trauma recovery, and hard‑won strength. It’s one ride you don’t want to miss.
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