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”
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”
Three months ago, as I drove away victoriously from the IV infusion center for the ninth, and final, time that semester, I almost dared hope I’d left behind the last three years of treatments and relapses… Almost.
It was the end of my college career, and I’d just spent its entirety fighting Lyme disease and an autoimmune condition that doctors still aren’t sure how to treat—or what the long-term prognosis is. I’d not only juggled exams and papers and weird living arrangements for four and-a-half years, but I’d been battling through countless procedures and medications and appointments—always in the naive hope that my illness would soon be over. Continue reading “Is There Hope in the Unknown of Chronic Illness?”
When people talk about PANS and Lyme recovery, I’m frustrated that it’s always in terms of symptoms. For me, it’s never about the symptoms—it’s about coming back from the dead and regaining the parts of me that were lost.
When PANS makes my immune system attack my brain, the physical effects (similar to a brain injury) give me a mental sense of losing who I am and even of being disconnected from reality. Continue reading “Not About Symptoms: The Truth on PANS/Lyme Recovery”