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”
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”
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”
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!”
“How’s grad school going?” my friend from home asked.
“I mean—I’m glad I’m trying it,” I stammered, going on about a few highlights.
“But do you like it?” she pressed.
The truth is that I’d been afraid to ask myself this very question, because I was afraid to learn the answer….
But first, how is grad school going?
Continue reading “How I Tackle Grad School with Cognitive Problems from PANS”
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””