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.
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.
“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?
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””
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”
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!
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…