#FibrosingMediastinitis

💊 When the Data Becomes Personal: What a 0.25 mg Dose Means After 38 Years

Sometimes healing isn’t loud — it’s one quiet change that means everything. When Dr. Beglin told me he was cutting my BUMEX to just 0.25 mg every other day , I sat there shocked. I haven’t been without a diuretic since 1987 , when I was diagnosed with idiopathic fibrosing mediastinitis — a rare disease of unknown causes, that creates scar tissue to grow inside the chest, squeezing the lungs and blood vessels and making it harder for my heart to work. Back then, medicine was

Nov 62 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 143 min read

💬 Dear Doctors: Stop Telling Women It’s Just Anxiety

Because I almost died from the thing you said was in my head. Let’s talk about the elephant in the exam room.You know the one—where...

May 273 min read

The Struggle to Breathe: Why I Stopped Laughing

Breathing is automatic for most people. For me, it was something I had to think about constantly. I wasn’t wheezing or dramatically...

Apr 22 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."