It was a typical Sunday morning a few weeks ago when it happened. My mom was cooking me an omelet, and dad was reading the paper. I was rummaging through the cupboard to get some honey to drizzle on a banana when I heard it:
“CLAW.” And then there was whispering in a female voice I couldn’t make out, which I somehow knew was about me.
“What’d you say, mom?”
“I didn’t say anything.”
I paused for a moment. “Did you say something, dad?”
He shook his head.
“So neither of you heard it?”
A chill ran down my spine as I suddenly realized what just happened: Continue reading “Why I Don’t Care What You Call Whatever’s Wrong with My Brain”
Why would this happen? How could I get worse while getting treatment?
Years ago when I started this blog, every time I had a symptom flare-up, I’d ask myself these questions over and over again sure that if I thought about them hard enough it would all make sense.
Unfortunately, when you have an illness which science has only recently begun to understand, you rarely get the satisfaction of knowing why you’ve gotten sick and what exactly will work to get you better. Sure, well-established, proven guidelines for diagnosing and treating PANS exist (though they didn’t when I started), but all too often, I relapsed without knowing why and had no objective test to prove how sick I was; I’d lose my entire personality, but the autoimmune markers you might expect in someone suffering from brain inflammation never showed up.
Continue reading “Could This Antibody Be Stealing My Life?”
Today is World Encephalitis Day, and I want to take a moment to shed some light on a certain controversy within the PANS and encephalitis communities:
Is PANS a form of autoimmune encephalitis, or is it something else?
Back in 2014, in a matter of weeks, I went from being a typical college student earning straight-A’s to a psychiatric cripple who was afraid to eat and didn’t want to exist anymore. I also lost the ability to walk, was overcome with constant involuntary movements, and couldn’t stay awake for more than a few minutes at a time.
How could a person develop sudden-onset Tourette’s, narcolepsy, bipolar symptoms, and severe coordination problems simultaneously in isolation from each other?
Continue reading “Why Autoimmune Encephalitis Doctors Need to Stop Ignoring PANS”
As I opened my eyes to the morning sunlight peeking through my blinds, for a feel blissful seconds, I forgot the many reasons I shouldn’t feel as calm as I did in that moment. But not a minute later, it all came rushing back, and my stomach did a somersault.
I rolled over and saw a missed call from my infusion pharmacy, and all at once I remembered the horrible quandary I’m in. I remembered the unfortunate events that led to it. And worst of all, I remembered that losing access to monthly IVIG treatments could mean I was on the verge of a relapse that would make me lose my mind. Continue reading “The Questions No One Should Have to Ask: Life on the Verge of Relapse”
Hi everyone, I’m excited to share that tomorrow (Saturday) is the launch of the first-ever teleconference support group for teens and adults with PANS, AE, Lyme and other similar/related conditions. Let this be your official invitation!
Join me at 2PM EST (7PM GMT) tomorrow.
Call (605) 472-5395, and enter the meeting ID: 339705.
Continue reading “Announcement: PANS/AE/Lyme Teleconference Tomorrow!”
For the last twelve years of being sick, I’ve been embarrassed by all of the ways my disease makes me “different” from everyone else. I may try to fit in, but I’m always waiting for the moment when people discover the truth about me.
From not being able to attend public high school, to going to therapy and appointments instead of hanging out with friends, to living with OCD and chronic pain, my experiences as a person with PANS and Lyme have isolated me from my peers when all I wanted was to be “normal” and feel accepted. Continue reading “My Illness Made Me Feel Like a Freak: Why I’m Done Trying to Be “Normal””
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”
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”