Making the most of life, even after the plot twist of vasculitis

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by BNS Staff |

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Five photos showing people affected by ANCA vasculitis, who are sharing their real-life stories during ANCA Vasculitis Awareness Month, are hung with clips on a string above the words 'Community Spotlight.'
A woman with shoulder-length brown hair and glasses poses for a photo under a tree blooming with white flowers.

Ioana Miclea has eosinophilic granulomatosis with polyangiitis. (Photos courtesy of Ioana Miclea)

This is Ioana Miclea’s story.

So, picture this: I’m Ioana, your quintessential 20-something girl, living it up with nights out, camping escapades, and a newfound love for festivals. And I’m jamming out to some meme song I stumbled upon online while prepping for a job interview to dive headfirst into the world of legal advice.

Let’s rewind a bit. There’s a sneaky little something messing with me: my back. After working from home for a couple years, it’s slowly turning to stone. In addition, my mom tells me I’m breathing like I’ve sprinted a marathon. I hadn’t noticed!

But I brush it off like a piece of lint. Who’s got time for back pain while battling an annoying urinary tract infection and gearing up for a job interview? But life, that trickster, had other plans.

A woman in a black blouse smiles while standing in front of a wall, which appears to be covered in sheet music.

Miclea has been on a medical journey, but is figuring out her new normal.

Cue a routine checkup and ultrasound to keep an eye on some pesky kidney stones. Everything seems A-OK, except my doc decides to play detective and check out my back. Why? Beats me. But just like that, boom! Plot twist of the century: I’ve got pulmonary edema, or a buildup of fluid in my lungs. That’s when the roller-coaster ride of my life kicks into high gear.

Between doctor appointments, CT scans, and innumerable blood tests, I feel like I’m in a medical drama. Is it lupus? My birth control? Then there’s the “wait, what?” moment when doctors start talking about biopsies and the big C-word. (Spoiler alert: It wasn’t actually cancer.)

Next thing I know, I’m spending an eternity in the hospital, surrounded by white coats and beeping machines. After a whirlwind of poking and prodding, they drop the bomb. I have some fancy disease I can barely pronounce: eosinophilic granulomatosis with polyangiitis. At least I’m “one in a million,” right? (Not exactly the bragging rights I’d hoped for.)

Doctors slap me with a treatment plan and a ban on all things salty. No more fries or chips for this gal, just loads of sweets to drown my sorrows in. Cue the pity party in front of the mirror as I watch the numbers on the scale creep up faster than I can say “cheat day.”

I’m nothing if not resilient … ish. So, I buckle down, start watching what I eat — goodbye, junk food, I’ll miss you — and soldier on through months of medications and side effects. High blood pressure? Check. Mood swings? Check. Depression? Check, check, check.

But despite all the curveballs, I’m still standing. Sure, I’ve had my fair share of bad days — dizzy spells, achy joints, you name it — but I’m learning to roll with the punches. I’m still figuring out this whole “new normal” thing, such as the many different sizes of pants I have in my closet. I face a constant battle of everything being fine one day, and the next, I’m running on Oreos, two hours of sleep, and a really, really bad mood. I’m taking life one day at a time.

Here’s to embracing the chaos, laughing in adversity’s face, and discovering the grit within. Maybe this crazy journey will lead me to a silver lining after all. Until then, I’ll keep dancing to the beat of my own drum, living life like there’s no tomorrow, and never, ever underestimating the power of a good meme song. Cheers to that!

In recognition of Vasculitis Awareness Month in May, the ANCA Vasculitis Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by vasculitis, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #ANCASpotlight, or read the full series.