5 Things I Would’ve Told Myself When Diagnosed with PANS

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. 

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My 5-Year Blogversary… And What Might Be Next

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.

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What It’s Like to Get an Incurable Diagnosis at 24: How I’m Coping with ME/CFS

“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:

Encephalomyelitis

“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”

The One Thing That May Never Recover After My Chronic Illness

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.

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The Plot Twist I Never Expected… And How I’ve Learned to Accept It

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”

Facing The What-If’s of Chronic Illness: Why Do Grad School While Sick?

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.

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Announcement: PANS/AE/Lyme Teleconference Tomorrow!

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 I Tackle Grad School with Cognitive Problems from PANS

“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?

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