#PatientExperience

What Clinical Trial Data Can’t Show — But Patients Can

Because lived experience explains the “why” behind every statistic. ❤️‍🩹 I can’t shake this one line that keeps echoing in my head: “Data comes alive through a real human story.” ✨ It sounds like something you’d jot down during a meeting about “impact,” right?But honestly… that line sums up my whole life.A little humbling. A little exhausting. And every bit is true. The Two Worlds We All Move Through 🌍 Most of us bounce between two very different worlds. 1. The World of

Nov 253 min read

💹 Somewhere between MyChart and policy, we lose people.

Simply because connection was never the system’s design goal in the first place. 📱 Today I got a notification in MyChart — that little ping that’s supposed to make managing your care easier. It told me to schedule my final clinical trial appointment. So, I followed the instructions. I scheduled my echo. A few minutes later, the phone rang — it was the clinical site coordinator asking to reschedule the appointment I just made. Turns out, the doctor assigned to my study is onl

Nov 113 min read

When Frustration Becomes Data: A Simple Act of Patient Advocacy

A reminder that every reaction, emotion, and question tells a story worth hearing. There's a moment in every care journey when you feel...

Oct 143 min read

The Everyday Battles That No One Sees

The unseen moments that define what it means to keep going. At one point in my journey, my whole life felt ruled by lab results. Every...

Oct 92 min read

The Body Doesn’t Lie—But Sometimes Doctors Don’t Listen

Lived Experience Isn’t Optional Data. It’s the Truth You Can’t See in a Test Doctors vs. Patients: Why Being Heard Means Everything in...

Jun 192 min read

✨ When the World Shut Down, My Fight BeganSurviving Hospice in the Time of COVID

Facebook Memory April 2020 | UW Regional Heart Center This popped up today, and I felt it in my bones.April 2020, UW Medical Center. I...

Apr 301 min read

"If no one else was telling their story, then maybe I needed to tell mine. And maybe, just maybe, that would give others permission to share theirs too."