With another year of college behind me, I recently packed up my apartment and headed home. Although I was unbelievably busy this semester and definitely overworked at times, I had a great junior year. I’ve truly put down roots in the college town where I spend the school year now, so it was with mixed emotions that I pulled into my parents’ driveway for the summer.
Since being diagnosed with PANS, I’ve been on antibiotics for twenty months straight, save for one two-week break. I’ll continue until six months after my last symptom, or at the very least, through my senior year of college.
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.
When I was first diagnosed with PANDAS in 2014, my doctor said the treatment plan was to give me “the whole kitchen sink.” In other words, I would receive the full range of therapies, many of them all at once. It was unscientific, since this made it hard to tell which treatments turned out to be the most effective, but for a girl who could hardly walk and had lost over 10% of her body weight, this approach was necessary.
During my first few months of treatment, whenever anyone asked me what percent of myself I felt I was, I usually said 80 or 90%. Although I believed this was accurate, I was grossly overestimating my level of wellness, because I’d forgotten what life was like at 100%. As I’ve said before, I’ve never realized how ill I’ve been until I’ve gotten better.
To me, one of the most difficult parts of recovering from PANS is how, just when you think you’re done having symptoms, your life can change again in a day. Sometimes, I feel like with PANS, the only certainty you have is the uncertainty of the course of the illness.
Yesterday, I humiliated myself in front of the whole class.
Most days now, I feel that I have my mind back—that I can actually think without anxiety and malfunctioning cognitive processes clouding my every thought. But every once in a while, I do something really strange or stupid, and I find myself truly questioning my recovery all over again.
I haven’t had time to write a longer post for a few weeks, but I just wanted to assure you that I haven’t disappeared.
I’ve been away, not because I’m ill, but because I’m well. In fact, I’d say I’m the best I’ve been in the last nine years.
With Thanksgiving this week, as I returned home and sat around the table with my family, despite flaring recently, I couldn’t help but be thankful for the progress I’ve made over the last year-and-a-half that allowed me to be at that table—and for the family surrounding me, who helped me get there.
As awful as the latest flare was, now that I’ve switched my antibiotic to Azithromycin and am doing better, I’m all the more grateful for everything I have. It may sound like a cliché, but it’s true that there’s nothing like losing something to make you understand its value…
Last Friday, I would’ve said I was 100% symptom-free. I went the whole day with no tics or OCD symptoms or depression, and most astonishing of all, I could pay attention in class. My mind was the clearest it’d been in years.
But just as I’d put my life back together after the last flare, it suddenly fell apart.
