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Data Doesn’t Live in This Body—I Do
Without patients, your data is just numbers. Data doesn’t sign consent forms while shaking from exhaustion. Data doesn’t wonder if today...
Aug 19, 20251 min read
When Your Body’s Screaming and No One’s Listening
How a Rare, Overlooked Disease Nearly Took My Life Before My Heart Journey Even Began. Most people have never heard of fibrosing...
Aug 14, 20253 min read
Decoding the Science: A Patient’s View from Inside a Virtual Study
Building a bridge between research language and patient voices. I’m part of a virtual medical study, and it’s been a fascinating...
Aug 12, 20252 min read
Healing Didn’t End With the Procedure—It Started With My Story
This isn’t just a story about heart disease. It’s a story about hope —and how a clinical trial saved my life and gave me a brand-new...
Aug 7, 20253 min read
Clinical Trials: From Dark Spots to Safety Rules
Learning from the Past to Protect You. We’ve all heard about new medicines that help people live longer and feel better. Some can even...
Aug 5, 20253 min read
When “Back to Normal” Doesn’t Happen: The Part of Recovery No One Talks About
Redefining “Normal” After Illness The bridge between real stories and how care should be designed After a major health scare, surgery, or...
Jul 31, 20252 min read
This Is the Gap No One Wants to Talk About
Why does care disappear when we need it most?The system stops at the procedure. We don’t. They saved my life—and then handed me discharge...
Jul 24, 20252 min read
How Many More Will Die Waiting for a Cure That’s Stuck in Testing?
Every life-saving treatment starts with a clinical trial . You can’t approve a cure no one is willing to test. I didn’t say yes to the...
Jul 17, 20252 min read
Not Just Bloating—This Was a Full-Blown Crisis
My scale decided my dose. My labs decided my life. No one prepares you for the mental load of managing fluid overload. Every ounce...
Jul 15, 20252 min read
Diary of a Dying Woman: I Was Drowning From the Inside Out—And No One Believed Me
April 17, 2020 – From my hospice diary: I’m back in the hospital—swollen, tired, and uncomfortable. My legs feel heavy and tight. My feet...
Jul 10, 20252 min read
My Rent or My Medicine: No One Should Have to Choose
People are breaking down in Facebook comments—because they can’t afford their Eliquis. It’s hard to read.Some are skipping doses.Others...
Jul 8, 20252 min read
Women Were Left Out of Research—And We're Still Paying the Price
Let’s talk about something that doesn’t get enough attention. Before 1993, most women weren’t included in medical research. Not because...
Jul 3, 20252 min read
Patient Responsibility: A Conversation We Need to Have
Being quiet won’t protect you—but being informed just might. If you're anything like me, you didn’t choose this health journey—but here...
Jul 1, 20252 min read
The Quiet Side Effects of Survival
Because Some Wounds Don’t Show Up on X-Rays I’ve talked about this before, but I don’t think I realized just how real it was until now....
Jun 26, 20252 min read
Held Together by What We’ve Survived
Every scar tells a story worth sharing . Life and advocacy really is like a rubber band ball. Each band is something you’ve lived...
Jun 24, 20252 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 19, 20252 min read
I Lived What 95% Don’t—And I’m Telling the Story
How surviving fibrosing mediastinitis, a rare disease no one believed, changed everything. My first dance with death started in 1987....
Jun 17, 20253 min read
The Letters I Wrote When I Thought I Was Dying
How hospice taught me to leave a legacy and live one too. When I was in hospice, everything changed. Not just physically, but...
Jun 12, 20252 min read
The Part of Heart Disease No One Prepares You For
We hear so much about the physical side of heart disease. The surgeries, medications, rehab. But what about the emotional side? What...
Jun 10, 20253 min read
💓 One Less Thing to Worry About: My Lp(a) Test Result
Heart stuff is never simple, especially when you’ve walked through it like I have. But sometimes, we get a bit of good news in the...
Jun 4, 20252 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."
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