Recently, I signed up to run in my first half-marathon. I was planning to cross the finish line this summer as the ultimate way to overcome PANDAS. I was hoping to be able to say, “Nine months ago, I couldn’t walk, but today, I’m totally healthy and symptom-free!”
But my plans have been ruined, and my dreams have been shattered.
When I underwent high-dose IVIG therapy in August, for the first time since I got sick eight years ago, I was hopeful about making a full recovery. I knew it could take up to a year for me to get completely better, but I didn’t mind. As long as I was getting better, no matter how slowly, I could keep hoping.
But then I stopped getting better.
I started tapering off my daily 20 mg dose of Prednisone in December, and I’ve gone downhill ever since. When I got to 3.5 mg, I was close to psychotic. I had some sense that I wasn’t right, but I wasn’t completely aware of how irrational and out-of-it I was. I stayed in bed all day long and didn’t go to class. I have since been staying at 7.5 mg, and although I’m in my right mind, I know I’m still not “right.”
Two weeks ago, I had the second-worst panic attack of my life during an exam. It had been three months since I had a panic attack at all. Even when I made up the test a week later, I was fighting off another attack the whole time, and as a result, I got a low grade.
On top of that, my OCD is suddenly out-of-control, to the point where I sometimes stay in my room instead of doing what I want because I don’t want to have to go through my decontamination rituals when I get back home. Not too long ago, I would’ve told you I hardly had any sign of OCD.
And now, I get confused at the strangest things. In church yesterday, as the offering plate was passed around (the same way it always is each week), I stared at the folded up checks in the plate and actually wondered for a moment, What am I supposed to do with this? What are those pieces of paper? Do we each take one?
My ticks and chorea are also back, and falling down is a daily occurrence. My concentration is a joke. No matter how much I sleep at night, I fall asleep all the time during the day without Provigil. I sometimes impulsively eat when I’m not even hungry (and I’ve still lost two pounds in the last month).
My parents told my neurologist about my ongoing symptoms, and now I’m scheduled for a second IVIG in March.
So here I am, six months post-IVIG about to go through the whole process all over again. I’m going to have to keep fighting for far longer than I expected. I may need plasmapheresis, too. I’m going to get extensive viral and infection testing to be sure there isn’t another underlying cause for my continuing flares—and if something comes back positive… Well, I don’t want to think about having to fight that off, too.
To say I’m devastated doesn’t even begin to express what I feel right now. It isn’t the fact that I’m spending two more days of my life getting treatment—it’s the fact that my “everyday” is still terrible. It’s the fact that the first IVIG wasn’t enough. It’s the fact that I’m still so sick when I hoped I would be almost completely better.
But I’m still running. I’m still training as hard as ever and not giving up on crossing that race’s finish line…
I don’t understand why I can still run when I’m otherwise dysfunctional, but running gives me the courage to keep persevering through the fight of my life when I’m sure I cannot possibly go on. Every time I finish a long run in spite of the last few miles of feeling exhausted and wondering how I would have the strength to finish, it gives me hope that I will someday also cross the finish line of PANS.
Someday, I will look back on this eight-year endurance challenge feeling on top of the world, and I will say, “That was one helluva run, but I did it!”