When Getting Better Hurts More Than Staying Sick: The Paradox of Recovery

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”

I Woke up in a Body I Didn’t Recognize: Living with Involuntary Movements

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”

The Part of PANS/Encephalitis Recovery We Don’t Talk About

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”

Why I’m Doing Better Than I Think

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”

Is There Hope in the Unknown of Chronic Illness?

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?”

I Wasn’t “Sick Enough” to Have Lyme. Then 2017 Exposed a Shocking Truth…

I’ll never forget the day I first set foot in a Lyme clinic, as I watched other patients with pale, exhausted faces roll into the waiting room in wheelchairs. I’d just finished another semester of college and a ten-mile run that weekend.  I remember thinking, I can’t possibly be sick enough to have Lyme Disease.  What am I doing here?

Continue reading “I Wasn’t “Sick Enough” to Have Lyme. Then 2017 Exposed a Shocking Truth…”

I Did 8 Weeks of IV Steroids. Here’s What Happened…

This semester, I wasn’t at school until October… Though I’d never missed a single day of sitting in the classroom.

After returning home from my summer internship in August, where I’d felt almost 100%, I noticed symptoms creeping back in. At first, I waited it out to see if they would pass, but I kept getting worse and worse, slipping farther and farther into a tormented mind that I no longer recognized. Continue reading “I Did 8 Weeks of IV Steroids. Here’s What Happened…”

What I Really Mean When I Say I’m Fine

My life with PANS and a brain on fire! (cred: KC Green)

As I hurried off to class the other week, suddenly, I knew things were awry: it was that strange and all-too-familiar feeling in my head that foretells a drop attack.

Continue reading “What I Really Mean When I Say I’m Fine”