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.
Continue reading “5 Things I Would’ve Told Myself When Diagnosed with PANS”
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.
Continue reading “My 5-Year Blogversary… And What Might Be Next”
“There’s no cure. No one knows if you’ll ever get better.”
The realities of my situation swirled in my mind as I tried to make sense out of what was happening. None of it was news, but somehow the word hit me harder than ever before:
“With the encephalomyelitis…” my doctor began at a recent check-up, but I have no idea what came after, because that word was all I could hear.
Continue reading “What It’s Like to Get an Incurable Diagnosis at 24: How I’m Coping with ME/CFS”
With Easter Week and Passover upon us, I’ve found myself face to face with the very thing my chronic illness has changed the most: my faith.
For years, I would’ve told you it was the most important thing in my life. All through high school, I was a leader in my youth group and involved in several ministries. I used to read scriptures daily because I wanted to learn more about God. I used to pray often because I wanted to be closer to Him. I even used to be enthralled by dense theological tomes, started to teach myself biblical Greek, and at one point considered going into ministry full-time.
But then I got ill.
At seventeen, I suddenly developed an extreme case of OCD. I’d already had OCD smoldering in the background of my mind for six years, which I’d concealed from numerous therapists due to shame, but out of nowhere it became incapacitating and all-consuming.
Continue reading “The One Thing That May Never Recover After My Chronic Illness”
After just one stride, I knew something wasn’t right. I’d always run through anything—be it sickness, rain, or depression—but today was different. Today, in the midst of training for my second half-marathon, my whole body felt like it was made of lead, and no matter how hard I tried I could barely pick up my legs.
I shuffled down the road for two miles before the frustration of a terrible performance got the best of me, and I dragged myself home, now dizzy from exhaustion. I went to bed in the hopes that I could sleep it off… Continue reading “The Plot Twist I Never Expected… And How I’ve Learned to Accept It”
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”
Last month, after finishing my first semester of grad school, the dread of having to come back in January to do it all over again drowned out any sense of accomplishment. Although I liked my colleagues, the truth is that I was miserable so much of that fall. And until now, I didn’t know why.
Continue reading “Facing The What-If’s of Chronic Illness: Why Do Grad School While Sick?”
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”