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”

10 Ways to Feel Less Hopeless When Chronically Ill

“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”

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?”

Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS

This week, I made the mistake of reading the PANDAS Wikipedia page, and now I’m boiling over:

“Treatment for children suspected of PANDAS is generally the same as standard treatments for [Tourette Syndrome] and OCD. These include therapy and medications…”
Continue reading “Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS”

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…”

Is This a Nightmare Come True?

Sometimes, you don’t get to wake up from your nightmare…

Lately, with each day that’s gone by, I’ve slipped farther and farther into the abyss of my inflamed brain. I’m in a bona fide PANS relapse—there’s no denying it now.

As it turns out, I’ve had too much faith in my Lyme/co-infections antibiotic protocol. Continue reading “Is This a Nightmare Come True?”

Why PANS Awareness Saves Lives

For the last eleven years of my life, I’ve battled a debilitating yet misunderstood autoimmune disease called PANS. It’s a disorder where an infection or an environmental trigger confuses your immune system into attacking your brain. This leads to all sorts of problems like OCD, anxiety, depression, tics, involuntary movements, cognitive problems, and many more horrible things.  It affects at least 1 in 200 people, but you’ve probably never heard of it.  Many doctors haven’t, either.

Continue reading “Why PANS Awareness Saves Lives”