I was a backcountry hiker, swimmer, runner, and exercise workoutaholic! . Someone who thought her body was invincible.
And then it wasn't.
In this episode, I'm pulling back the curtain on my full Inclusion Body Myositis journey — not the polished version, the real one. From the moment I couldn't get up off the floor, to sitting in an infusion chair for two consecutive days every four weeks, to a syncopal episode that landed me in the emergency room — this is what living with IBM actually looks like.
I walk you through every test I had, what my muscle biopsy actually showed, what my enzyme levels have looked like over two and a half years of treatment, and exactly what goes into my IVIG and Rituximab infusion protocols — the drugs, the doses, the rates, the reactions, all of it.
Because when I was first diagnosed, I was starving for this kind of information. And I couldn't find it.
IBM is rare. The community is small. And too many of us are navigating this alone, piecing together information from medical records we barely understand, sitting in waiting rooms, wondering if anyone else knows what this feels like.
I do. And I'm done staying quiet about it.
Whether you're newly diagnosed, years into your own treatment journey, caring for someone with IBM, or just trying to understand what this disease actually is — this episode is for you.
You are not alone in that infusion chair.
In this episode:
- My full diagnostic timeline — EMG, muscle biopsy, MRI, genetic testing and more
- What my biopsy actually showed and why the diagnosis wasn't straightforward
- My complete IVIG protocol — Gammagard 10%, 50g, every 4 weeks, now into Cycle 34
- My Rituximab (Riabni) protocol and what happened when my BP crashed post-infusion
- The post-IVIG migraine that led to a syncopal fall and an ED visit
- The Benadryl reaction that changed my protocol permanently
- What CK and Aldolase levels actually tell you about disease activity
- A free downloadable IBM Treatment Reference Card — link in show notes - right here!
https://drive.google.com/file/d/1E9P7H6uLhkkVwko4IQuq9Q6_YQfb4ncu/view?usp=drive_link
Alicia D. Polak
Chief Enabled Officer
Email: [email protected]
Instagram: @aliciathedisabledcompany.com
Website: www.thedisabledcompany.com