In 2012, when I developed an extreme case of Obsessive-Compulsive Disorder overnight, all I wanted was to get better—not to spend the next six years fighting to get treatment for a “controversial” disease. However, when conventional therapies failed, and I rapidly declined after Strep and mono two years later, only steroids were able to help my severe psychiatric symptoms. It was then that I realized the truth wasn’t always easy to accept: Continue reading “These 3 Myths about PANS Are Ruining Lives: A Response to Misguided Medicine”
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”
“I just can’t keep going.”
“I feel completely hopeless.”
“How can anyone live like this?”
These messages come to my inbox nearly every week from kids and teenagers who think PANS or Lyme is the end of the life they once loved; from adults who’ve been fighting for years, unsure how much longer they can go through the cycle of relapse, treatment, and recovery; and even from parents who are tired of being too strong for too long.
Continue reading “10 Ways to Feel Less Hopeless When Chronically Ill”
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”
“Close your eyes,” the Lyme specialist said. “And hold your arms out straight.”
My body began to jerk while I stood in front of the exam table with my arms extended. As I strained to stop the involuntary movements, I could sense my parents’ dismay even through my eyelids.
Continue reading “How I Finally Made Peace with My Lyme Diagnosis”