I’ll never forget when I ran my first half-marathon in May.
While some people might remember the elation of achieving such a momentous feat, what I remember most was the pit in my stomach whenever I saw a mile marker—all I could think about was how many more I had left and how impossible it seemed that I would finish.
But I made it to the end.
These days, I feel like my recovery is another bad race, but I don’t even know where the mile markers are—nor does anyone else. Worse, no one can tell me how much longer I have to keep running.
With two bad flares in less than a month, I knew it was time to talk to my specialist again—even though we’d hoped to not need a follow-up for another year. So this week, the consensus was that I don’t need any more IVIG or other invasive treatments. I’m not suffering a relapse—my immune system was simply never done healing in the first place.
It’s as if I thought I’d finished the half-marathon, but I now have to keep running for who-knows-how-much farther. I’m tired, worn-down, exhausted, and unsure how long I can keep on.
Apparently, when you’re an adult with a developed immune system, it takes more time to heal from PANS. It’s more difficult for the body to learn to “forget” to make antibodies against the brain. However, it’s not impossible—I’m still told that no one is stuck with PANS forever, if you get treated. People far worse than I ever was have gotten completely better. It’s just a matter of time and of finding the right treatment.
Still, one of the hardest things about this disease is the uncertainty. I see a PANDAS/PANS expert, but even she has no idea how much longer I have to run this race.
There aren’t tests that can tell you what your best treatment option is, so I’ve just been given the whole kitchen sink over the last year, in the hopes that something we do (or perhaps all of it together) will get me better. Sometimes, I feel like we’re blindfolded and throwing darts at my disease, hoping one of them will hit it and bring it down once and for all.
It may sound strange, but that bad race in May gives me hope that I will still cross the finish line of PANS. I find hope in the sight of mile marker nine, forever burned in my mind as a forbidding sign that I would never make it; it represents how I finished when I never thought I could, because I not only made it to mile ten—I made it to mile 13.1, overcoming the hardest race of my life. I’m determined to do this again with PANS.
Even though no one can tell me the distance of the rest of my recovery, I do at least have support along the arduous course—a team of doctors, a loving family, a few close friends, and now some changes in medication. From this point on, I’ll stay on Azithromycin instead of Cefdinir or Augmentin (prophylactic antibiotics), and I’ll do higher-dose Prednisone bursts at the first sign of a flare. While I hate that I have to keep running when I thought I was finished, I try to believe that maybe, just maybe, I am in the home stretch.
Like my first half-marathon, my recovery journey has been anything but the run I expected. But I’m determined to stay the course and win the race of my life.