Today, I’m thrilled to have a guest blogger, Olivia Cyr. She is seventeen and lives with a few chronic conditions including dysautonomia, OCD, and anxiety. Olivia has been featured on The Mighty, and her perspective as a teenager dealing with these issues is important.
Being a teenager is hard. I don’t think that many would dispute that fact. Between boy/girl drama, friendship struggles, school, teachers, homework, a job for some, and more, teens often don’t get the credit they deserve for juggling all they have.
Continue reading “Guest Blog: The Challenges of Being a Teenager with a Chronic Illness, by Olivia Cyr”
Before I’d even opened my eyes, I knew something was terribly wrong. Every muscle in my body hurt. I was drenched in sweat. My heart was racing. I had an 101º fever.
As I lay there trying to will myself out of bed, my heart-monitor watch went off, warning of a high heart rate. I didn’t think much of it because I had a fever, so of course my heart would be above 100.
But then it kept going off. Again. And again.
Not having it, I rolled over and slapped on my blood pressure cuff. My pulse was 166. Crap crap crap! This was really happening again.
Continue reading “My Disastrous Symptom Flare & How I Plan to Get Out of It”
The other night, a horrifying realization jolted me awake: I haven’t rode my bike in over two years.
Suddenly, the memories came rushing back, and I imagined myself biking like I once did. I remembered how, in college, I would bike to errands and class. I remembered zipping around town with the wind in my hair. I remembered the long rides in the bike lanes and on the greenway, and my riding buddy’s incredulousness when I’d already run ten miles that morning and still was hard to catch.
Continue reading “When Good Memories Torment You”
“Just go to the lab,” the doctor says, handing me a long list of tests.
“I have a port,” I remind her. “You’ll have to send this to the infusion center since my veins are too scarred.”
She paused, mulling it over for a second. “Well, the lab is where you get blood drawn, so I’m sure someone there will help you.”
“But phlebotomists can’t access a port.”
“They’ll find someone,” she ushers me out of the office, leaving me to hang out and dry and ignoring farther warnings about what will happen to me if I go to the outpatient lab…
Continue reading “The Problem with Having an Anxiety Disorder AND Another Chronic Illness”
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”
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”
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”
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”
This weekend, I’ve defied all odds; I’ve done what never should’ve been possible…
I graduated from college, Summa Cum Laude… While in a long-standing battle with PANS and Lyme Disease!
When I was first diagnosed, it felt like my life was a tragedy, and PANS was the ending. I was sure that it had completely ruined me, and pursuing my dreams seemed inconceivable…
Continue reading “I Graduated College with PANS, Lyme, and…. Highest Honors!”