Why I Started Livin’ In A Flare: My Journey Through Chronic Illness, PAH, and CKD

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June 8, 2026

A plus-sized woman wearing oxygen tubing sits beside a parked car on a desert highway at sunset, surrounded by soft pink, mauve, and teal tones, looking hopeful and reflective. — Sometimes the moment that changes your life looks like an ordinary road trip.

Everything Changed

I didn’t find out about the kidney disease until after we moved to Las Vegas in 2023. Before that, I had already been diagnosed with pulmonary arterial hypertension in November 2021 as a result of Covid. Those diagnoses changed the course of my life in ways I never could have imagined.

There was a time when a three-hour road trip meant grabbing snacks, making a playlist, and getting on the road without a second thought.

Then one trip ended in the ER.

What should have been a normal drive became one of the moments my husband and I realized this wasn’t temporary anymore. Everything had changed.

Now every trip requires planning for worst-case scenarios. We pack extra medical supplies, map out frequent stops, and check elevations because of my pulmonary arterial hypertension. Things other people never even think about suddenly became part of every decision we made.

And emotionally… it felt hard, exhausting, and like I became a burden overnight.

The Diagnosis That Hit Differently

Around that same time, doctors told me I had Stage 3 chronic kidney disease.

Chronic illness changes even the smallest parts of everyday life.

That diagnosis hit differently because of my mom.

My mother spent 13 years on dialysis before eventually receiving a kidney transplant. She passed away three years later. Going through kidney disease without her has been one of the hardest parts of this journey because she would have understood this fear in a way nobody else could.

The Parts People Don’t See

There are so many parts of chronic illness people never see.

There are days I can’t get out of bed. Days I can’t form complete sentences. I take over 30 pills a day. I’m on a first-name basis with the staff at the ER.

But because many chronic illnesses are invisible, people often assume they aren’t real… or that they can’t possibly be “that bad.”

If they can’t physically see the illness, they think we’re exaggerating. Being dramatic. Lazy. Weak.

What people don’t understand is that chronic illness changes every part of your life. Not just physically, but emotionally too. It changes your relationships, your independence, your future plans, and sometimes even your sense of identity.

Carrying It Quietly

For a long time, I bottled up how I truly felt because I didn’t want to put even more on my husband, John. When you love someone deeply, the last thing you want is for them to carry your pain too.

Some battles are invisible even when they impact every part of your life.

But the truth is… carrying it alone is heavy.

That’s why I started speaking openly about my life and my illnesses. I needed connection. I needed people who understood what this kind of life actually feels like.

This blog isn’t about pretending everything is okay. It’s about honesty — the grief, the fear, the exhaustion, the dark humor, and the fight to keep going.

Most of all, it’s about connection.

You Are Not Alone

If you’re reading this feeling isolated, overwhelmed, or misunderstood, please hear me when I say this:

You are not alone.

There are so many of us carrying invisible battles every day, and we need each other more than ever.

So reach out. Stay connected. Share your story. Build community wherever you can.

That’s what I’m trying to build here — a place where none of us has to carry this alone.