After eight years of a mysterious illness no one could figure out, one July morning in 2014, a neurologist finally cracked the code: I had PANS.My body was attacking part of my brain, leading to all sorts of bizarre symptoms.
But at the same time that she shed a light onto my case, the new diagnosis plunged my whole family into a darkness we couldn’t have imagined.
Yes, we had an answer, but we’d also just opened a pandora’s box of questions without knowing it.
Five years ago today, I made a decision that would change my life: I published my first post on this blog.
I didn’t tell anyone—not even my best friend or my family.It was my little secret project that I never intended to keep up for more than a few months—and yet, here we are in 2019.
Back then, I was a castaway on a desert island of illness, tossing out that first post like a message in a bottle—I didn’t know if anyone would ever see it, but nonetheless I felt compelled to write.After all, it was one of the few things that brought me peace from the depression that was engulfing me.
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.
Today is PANS Awareness Day 2018. There’s so much I could write as someone who has lived with PANS for most of my life—even more than I’ve already said in the 100,000+ words I’ve written in previous posts on this blog.
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”→
It’s 6:00 on a Friday night, I’m drenched in sweat, sitting on my bed with no pants on, and mumbling nonsense. Tears are running down my face for no clear reason, and I feel outside myself, detached from reality. As my mom peeks into my room to bring medicine, I whisper that everyone hates me, warning that the Universe is out to get me. I have no idea why I’m saying or doing any of this—words are coming from my mouth and I can’t stop them. Continue reading “I Lost My Mind… But Haven’t Lost Hope”→
On Thursday morning, I woke up and immediately knew something was very wrong. My whole body ached. I had an awful headache. I was dizzy. I was too nauseous to even think about food or water. It was that familiar set of symptoms that meant one thing: I was in for a terrible Lyme herx.