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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
From Cancer to Comeback: Care partner. Fighter. Gym Partner. Louis Is Doing It All 🫶
From side effects to strength training — Louis is proof that progress is possible. Louis is almost finished with his last month on...
Jul 29, 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
From Misquote to Misdiagnosis: How Tori Took Control of Her Medical Story
🫀 Real Advocacy. Real Impact. Tori Lungren’s Two-Story Reminder That Your Voice Might Be the Most Important Tool You Have 🩷 PATIENT...
Jul 22, 20253 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
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
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
💓 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
Healing Out Loud: The Story Behind the Smile
Because surviving isn’t the same as healing As we know mental health doesn’t always come with a warning sign. It’s not as visible as a...
Jun 3, 20252 min read
The Interview Every Patient Deserves
Questions Every Doctor Should Be Asked—Before You Trust Them With Your Care I can’t tell you how many times I’ve been let down by a...
May 15, 20254 min read
From Barely Breathing to Truly Living — Why I Won’t Stay Quiet About TVR
Why am I talking about Tricuspid Valve Regurgitation (TVR)? Because talking about it creates change.Because sharing our stories makes...
May 14, 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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