Today is PANS Awareness Day 2018. There’s so much I could write as someone who has lived with PANS for most of my life—even more than I’ve already said in the 100,000+ words I’ve written in previous posts on this blog.
However, I’m doing things differently this year, and instead of posting about PANS awareness, I’m going to speak on national talk radio. I’ll be interviewed on Worcester, Massachusetts’s John DiPietro show along with some New England PANS Association board members and a PANS parent. Continue reading “On the Radio Today! A Special for PANS Awareness Day 2018”
Hi everyone, I’m interrupting our regular programming to let you know I’m speaking on the Stanford PANS Parents Support Group teleconference tonight at 5:45 Pacific Time!
You don’t have to be in California to listen. You can hear it by calling 1 (650) 724 9799. International numbers are available here. The meeting ID is 649 394 165.
Dr. Frankovich from the Stanford PANS clinic will be conducting a Q&A at 5:45, and then I speak around 6:30. I’ll be sharing my story, some encouragements, and some things I wish I could’ve told my parents when I was at my worst.
I hope you’ll join me!
In the last couple of months, I’ve had a breakthrough in my recovery. After being mostly couch-bound since January, I’m now able to run. And my cognitive abilities have improved so much that I just finished a small project. So many things I’ve hoped for have become reality!
I thought I’d feel nothing but elation if I ever got back to this point, but instead, now that I’m here…
I’ve found a dark side that no one wants to talk about.
Continue reading “When Getting Better Hurts More Than Staying Sick: The Paradox of Recovery”
What in the world have I done?! I thought to myself.
A wave of panic ran through me, and my heart began to pound as I stared back at the computer screen. I couldn’t believe it finally happened. I’d exposed myself before the whole world—my life story, in front of any eyeballs that landed upon it. Despite everything in me saying I shouldn’t be sharing so much, I’d just published the first post on this blog. But there was no turning back now. Continue reading “4 Things I Learned from 4 Years of Blogging… And an Announcement!”
In June 2014, I lost my body.
Over seventeen hours, I watched in shock as my body grew a mind of its own, erupting in wild, bizarre movements I couldn’t control. What started as innocuous twitches in my legs grew into full-body thrashes and twists and jerks over the course of one day. And then I realized I couldn’t walk, because every few steps, my legs gave out and sent me collapsing to the floor. Continue reading “I Woke up in a Body I Didn’t Recognize: Living with Involuntary Movements”
When I was a kid, I never quite fit in at school, but the outdoors were my refuge—every day, I came home and found peace and quiet in our woods. Little did I know, nature was about to stab me in the back worse than anything the other kids might’ve said.
Continue reading “11 Lyme Facts I Wish I’d Known Sooner…”
For the last eleven years of being sick, time has been my enemy.
The first sign I was ill was that I started moving in slow-motion—I lost awareness of time passing. Doctors thought it was late-onset Attention-Deficit Disorder. Instead, as I’d find out eight years later, my immune system was attacking my brain.
Continue reading “The Part of PANS/Encephalitis Recovery We Don’t Talk About”
These days, when friends ask how I am, I tell them I’m fantastic—and for a moment, I almost believe it.
I tell them about my new projects. I tell them about grad school in the fall. I tell them about a professional development program this summer. When I talk about everything I’m doing, I fool everyone—even myself—into thinking I’m healthy. Continue reading “Why I’m Doing Better Than I Think”