Tag: Health

My 5-Year Blogversary… And What Might Be Next

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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” →

Black and white image of a pillow in a bed

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

Published on by DreamingPanda11 Comments

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

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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” →

Why Autoimmune Encephalitis Doctors Need to Stop Ignoring PANS

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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” →

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

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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?” →

My Illness Made Me Feel Like a Freak: Why I’m Done Trying to Be “Normal”

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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”” →

On the Radio Today! A Special for PANS Awareness Day 2018

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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.

However, I’m doing things differently this year, and instead of posting about PANS awareness, I’m going to speak on national talk radio.  I’ll be interviewed on Worcester, Massachusetts’s John DiPietro show along with some New England PANS Association board members and a PANS parent. Continue reading “On the Radio Today! A Special for PANS Awareness Day 2018” →

Interview with Me Tonight: A Special Announcement

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Hi everyone, I’m interrupting our regular programming to let you know I’m speaking on the Stanford PANS Parents Support Group teleconference tonight at 5:45 Pacific Time!

You don’t have to be in California to listen.  You can hear it by calling 1 (650) 724 9799.  International numbers are available here.  The meeting ID is 649 394 165.

Dr. Frankovich from the Stanford PANS clinic will be conducting a Q&A at 5:45, and then I speak around 6:30.  I’ll be sharing my story, some encouragements, and some things I wish I could’ve told my parents when I was at my worst.

I hope you’ll join me!

8 Essentials for University Success with a Disability: How to Build a Bulletproof Support System

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I have a disability.

I never thought those four words would describe me, especially at twenty-three, but in my first few days as a graduate student, they’ve become a heavy truth I have no choice but to accept—and at the same time, they’ve turned into a statement of empowerment.

Continue reading “8 Essentials for University Success with a Disability: How to Build a Bulletproof Support System” →

When Getting Better Hurts More Than Staying Sick: The Paradox of Recovery

Published on by DreamingPanda15 Comments

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” →