When people ask how I’m doing these days, I never know how to answer, so I just say to everyone:
“I’m tired.”
Tag: Sickness
Why I Look Forward to Tomorrow
Last week, as I climbed into bed and turned out the lights, I experienced something very strange: I realized I was looking forward to my tomorrow. In that moment, it struck me that after ten years of PANS, I couldn’t recall the last time I was truly excited about waking up for another day.
Why I’m Not Living up to Your Expectations
Last semester, when some of my work got a major recognition, my college experience transformed. I quickly went from being the quiet kid with few friends to the student that everyone in my department knew about. People who’d barely spoken to me before were now congratulating me and asking for advice. And I finally got invited to social events.
While I enjoyed my upgraded status, with my success came a side effect: unreasonably high expectations.
Continue reading “Why I’m Not Living up to Your Expectations”
Why I Won’t Eat
With this latest flare, I’ve been struggling with an eating disorder again. Restricted food intake is one of the two major diagnostic criteria for PANS, so my new obsession is nothing unusual. In fact, this is the third time in my life that I’ve faced an eating disorder: the first was when I was nine or ten and the second was in 2014, at nineteen.
One Wrong Step and…
I know I said I’d start a series on the different treatments I’ve tried, but I’m pausing to tell you why I haven’t been able to post in several weeks…
I caught some terrible virus and have been having symptoms again. As a result, I got behind in school, so I’ve had to use all my time to get on top of things again.
Until the Victory Is Mine
One of the hardest things about PANDAS is that you never know what it’s going to do next. Just as you’ve finally gotten your life back, it can strike again. Or just as you’re sure the fight is hopeless, things might turn a corner. Sometimes, it seems like there’s no rhyme or reason to its course.
Indeed, it wasn’t too long ago that my doctor said I was in remission. My family and I were stunned at the improvements I was making after my tonsillectomy. But this week, the unthinkable has happened: I am, once again, having a flare.
Why I’m Glad I Got Sick
It was the first full week of class, and just like Freshman year, I had gotten sick. My body ached. My head pounded. I felt exhausted.
When you have PANS, getting sick is often far worse than just feeling tired and congested—in the past, a simple virus could send me into a full-blown flare of severe OCD, panic attacks, involuntary movements, and even hallucinations. So naturally, when my nose started running last week, all I could think about was how much I didn’t want to flare. I couldn’t have cared less about the cold symptoms themselves.
Another Flare, Another Decision
With PANDAS, it’s astonishing how much can change in one day. Last June, I developed a tic disorder and became unable to walk in just a few hours. I’ve spent the year that followed fighting to get my life back. One day this week, I flared again, and it’s already had astonishing repercussions…
After a week on Wellbutrin, I was starting to feel the closest to normal that I’ve felt in two years. It was like the summer before I went off to college—I had some OCD and anxiety but was mostly functional and otherwise healthy. Unfortunately, after five days of feeling great last week, I slowly fell back into depression. Then, I got a sore throat, a headache, and a cough.
A few days later, I lost it.
I Don’t Know Anymore
Well, after dreading it and hoping and praying it wouldn’t happen again, I’ve just had another bad flare.
On my way to class last week, I overheard someone say she had Strep throat.
No. I can’t flare again, I thought to myself. It’s not going to happen. I’m still on antibiotics. I’ve had two IVIGs. I should have plenty of good antibodies if I’m exposed. I’ll be fine…
But then, when I got to class and saw one of my lab mates who hadn’t been around in a few days, I asked where he’d been—and immediately wished I hadn’t:
“Oh, I had strep throat. It was a really bad one!” Continue reading “I Don’t Know Anymore”
IVIG #2: I’m Finally Aware
I just finished my second, and hopefully last, IVIG treatment!
Recently, I’d been feeling like I’d made no progress with any of my symptoms after my first IVIG. But strangely, it was the process of going back for another IVIG that showed me this was simply untrue.
When I had the first IVIG in August, if I got out of the chair to stand up and stretch my legs, I started doing a wild choreiform movement dance. I couldn’t even look at my doctor to talk to her because I was moving so much. I had to hold onto the IV bag pole to keep from falling down when I tried to walk down the hall to the bathroom.
This time, I hardly had any movements, and the ones I did have were barely noticeable to anyone besides me—except for when I took one spill in the hallway… Continue reading “IVIG #2: I’m Finally Aware”