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.
The fact I’d fallen ill at nineteen, after an amazing first year of college, would have been bad enough, but it was even worse to be sick with something no one knew how to treat or even diagnose. I’d had baffling psychiatric and neurological symptoms off and on for eight years to varying degrees, but in June of 2014 I took a sudden turn for the worse like never before.
Out of nowhere, I developed tics and involuntary movements all over my body in the course of a single day. I had trouble with coordination, so I’d just fall down when I tried to walk. I’d lull in and out of consciousness off and on all day long no matter how much I slept at night. I suddenly had an irrational fear of food, so I stopped eating anything solid. And the most alarming part to me was the look of utter torment and deep sadness I’d see when I looked in the mirror—I barely recognized myself.
“It’s narcolepsy,” one neurologist said.
“It’s a medication reaction,” the ER neurologist declared (without any tests, I should add).
“It’s some kind of tic disorder,” two others decided. “But keep your appointment with Dr. X in ____. Maybe she can help.”
(Dr. X being the PANS neurologist who ultimately saved my life on multiple occasions.)
My family had become highly suspicious I had PANS, but there was one problem: I wasn’t a kid. It was supposed to be a pediatric disorder—the “P” stands for pediatric. I had all the symptoms and fit the criteria, but we couldn’t find anything about PANS in adults on the internet.
And that’s where my blog came in. If something bad had to happen to me, then maybe I could leave behind an account of my journey for the next lonely teen or adult going through something similar so they would know they weren’t the only one.
I was still naive enough to think I could recover from eight years of PANS in a few months, and then I’d log off from my blog once I was better. But instead, it’s been five years, and I’m not sure if or when this blog will end. I’m still sick with the aftermath of Lyme, but I got my mind back from PANS, and I’ve written about every step of the way.
More importantly, the people that this endeavor has brought together and the support I’ve been able to receive and provide mean too much for me to think about stopping anytime soon, even if I woke up tomorrow completely well.
Some of you have been with me from the very beginning. Some of you came in at various points along the way. And still more are just joining. So instead of getting into an overly sentimental five-year anniversary post or trying to say something profound, it seems like an opportune time to recount what these last few years have brought and to tell you where I might go next.
In the beginning, I wrote about the challenges of not having a diagnosis for all of my strange problems, and then I shared that a steroid burst seemed to indicate I just might have PANS/PANDAS after all.
But then I wrote about that first trip to the doctor who pulled me out of the unique hell that we call PANS—and what it was like getting a diagnosis after eight years.
I wrote about my first IVIG a couple of weeks later.
I wrote about the recovery process in the months that followed…
And then I wrote about the relapse and the second IVIG.
I wrote about getting POTS.
I wrote about the PANS/Lyme-induced anorexia which brought me to a skeletal weight less than what I was in the sixth grade.
I wrote about my third IVIG.
I wrote about getting diagnosed with late-stage Lyme, Babesia, and Tick-borne Relapsing Fever and beginning a strong cocktail of antibiotics in an attempt to treat them.
I’ve also written about my mental health and the misadventures when my anorexia turned into exercise bulimia.
I wrote about getting well enough from PANS to spend most of summer of 2017 at an internship (albeit still suffering with my eating disorder).
I wrote about “The Big Relapse,” which was apparently exacerbated by an attempt to treat Bartonella. But I wouldn’t fully acknowledge what was happening or get any real treatment for another two months—all while still enrolled in my final semester of college, only avoiding flunking out due to the grace of the professors willing to wait for me to get better.
And I wrote about the nine weeks of IV steroids that brought me back from the brink and gave me the chance to get straight-A’s again.
I wrote about graduating with my bachelor’s degree, summa cum laude.
I wrote about having no choice but to come home immediately afterwards to receive the eating disorder treatment I so desperately needed, and to allow my brain to continue healing from PANS.
I wrote about kicking out my eating disorder and taking that first step to enroll at the treatment center and give the program my all.
I wrote about the bittersweet process of realizing what PANS and Lyme had done to me as my brain recovered—as I regained insight, the grief finally hit me, and I’ve since been trying to process this entire ordeal.
But then I wrote about my bold decision to go to grad school just a year after “The Big Relapse,” and while still facing crushing fatigue from Lyme.
And since then, it’s been a journey of trying to figure out how to move forward with my life after all that’s happened. I write a lot about this now, but I’m also unpacking things that have happened when I was sicker, which I wasn’t well enough to relay in such detail at the time.
I’m still on monthly IVIG and Solumedrol and probably will be (so long as insurance behaves) quite a while. These days, I often say I’ve recovered from PANS since the few mild, possible symptoms left don’t stop me from doing anything I want to do. Whether I’m truly and permanently cured remains to be seen when I try to come off the infusions—a difficult fact to accept given what I’ve already been through.
Moreover, the other devastating part of this journey has been developing ME/CFS right after finishing college—which I’m thankful is now managed well with IVIG. It could be years before I get better from that, so I plan to continue to write on this blog at least until then.
But another important reason I’m continuing is…
I’m still writing a book.
(Maybe even two or three, but first let’s get through the first one.)
One of my top questions is how in the world I could do college and graduate with highest honors while often horribly ill. So I’m going to unpack how I did it in a part-guidebook, part-memoir. I made a lot of mistakes along the way (like being “that roommate” who’s probably still discussed as a freshman horror story), but this means you’ll get lots of entertainment along with no-nonsense tips and information. The goal is that anyone with a chronic illness, mental health condition, or other disability will find tips and tricks and coping techniques to succeed at university while also managing their condition.
Writing the book went to the back-burner when I started grad school, but I’m working on it more this summer. I’d love to have it out by 2021.
So readers, thanks for all of your love and support over these last few years. Here’s to all that’s still to come!