Cooking Through the Chaos: My Life With Sarcoidosis, Heart Failure & Debut Novel Dreams

Hey there. I’m a private chef by trade, a debut novelist by hope, a husband by choice, a pet-parent by joy, and lately a full-time participant in the “I have sarcoidosis and heart failure” club. I was handed a diagnosis of pulmonary sarcoidosis back in 2006 (yes—that long) and with it came the steroid, Prednisone, life. The kind of drug that says “I’m here to save you” with one hand and “I’m also going to mess you up a little” with the other hand. Side effects? Oh, we’re best friends: weight gain, mood swings that rival reality TV, infections that throw surprise parties in my lungs. It’s the delicate dance of chronic illness: stay alive, keep breathing, don’t let the meds kill your spirit.

And just when I thought I’d mastered the art of lung-inflammation juggling, along came heart failure. Because of course. Now everything gets more interesting: fatigue that makes 10am feel like midnight, shortness of breath like I just sprinted up three flights of stairs (which I didn’t), fluid retention that’s basically a full-body surprise party. And here’s where my chef life, writing life, spousal life, pet-parent life all collide with my health life. One day I’m plating delicately seared scallops, the next I’m propping myself up with pillows because lying flat is so last year.

But you know what? I still cook. I still write. I still hope. That’s the weird beauty of chronic illness: the world tells you you’re slowed down; you tell the world you’re re-imagining your speed. In the kitchen I chop, sauté, taste and create because the sizzle reminds me I’m alive. And in my notebook (or laptop, more realistically) I write because my story—yes mine—matters. If you’re a first-time or soon-to-be-published author, maybe you get this too: creation is your rebellion, your therapy, your legacy. Meanwhile, as a husband and pet-parent I cling to normalcy: my wife laughing at my weird antics, my dog demanding extra treats because hey, life’s short—especially their’s.

Here’s the thing: living with sarcoidosis, with heart failure, with long-term prednisone usage is a journey and a circus. It’s messy, emotional, courageous, frustrating, and yes, sometimes downright ridiculous. But it has taught me that growth doesn’t only happen in triumph; it often happens at 3 pm, breathing through the exhaustion and finding yourself still smiling. It’s in those moments when you realize that a “small victory” is when you plate something edible, or hit “finish draft” on your novel, or walk the dog without collapsing on the lawn for 10 minutes. It’s everything everyone else calls “normal,” just measured differently.

To all of you reading—especially those who are doing the chronic-illness-and-creative thing, who are fighting to finish a manuscript while your body waves the white flag, who are cooking dinner when your energy says “nah”—I feel you. You’re not alone. There is no rulebook for how to be a chef-novelist with sarcoidosis plus heart failure, but maybe the best we can do is find our own rhythm, lean into the weirdness, cry sometimes, laugh often, write like we mean it, and cook like we’re saying, “Yes I can.” Because you can. I can. We can.

If you’ve been in this chronic-illness boat (or are writing your first novel, or both), I’d love to hear your story. Drop a comment below: what’s your small victory today? What creative project are you holding gently in your heart despite the fatigue? And if you want more tales from my kitchen, from my heart, from the unseen corner of chronic-illness-meets-creativity, subscribe. Let’s keep cooking, writing and surviving together.

To hear this episode on my podcast, Still Breathing Despite Odds, Click here