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…
While my movement disorders have improved significantly, I’d say the main difference between last week and my August IVIG has been that, before my first IVIG, I don’t think I fully understood how serious this disease could be.
In August, I didn’t realize that, if it weren’t for the Prednisone burst that had brought me back a few weeks beforehand, I could’ve starved myself. It didn’t occur to me that if we hadn’t figured out I had PANS, I would’ve been locked up in a psych ward with constant monitoring so I wouldn’t hurt myself. I didn’t grasp that I needed IVIG to avoid a lifetime of mental illness, disability, and unimaginable suffering.
But now I get it. Sometimes, it’s too much to process. I simply cannot bear to think about what would’ve happened to me without treatment. I nearly lost everything…
During the IVIG treatment this week, I was also well enough to understand how bad things still are—although it’s a good sign that I’m able to recognize this. I know that my general and social anxiety and OCD have been incapacitating, all of my executive functioning abilities are very poor, and everyday tasks are sometimes impossible.
But even if some of these symptoms aren’t much better than they were in August, my perception is much improved. It’s like someone has finally given me a pair of glasses for my mind, and I can finally see what I’ve been missing for so long. While it’s painful to know there’s so much I couldn’t see, it’s comforting to know I’m coming back in some ways.
Unfortunately, being more aware means I’m also able to worry more. I worry because, if this IVIG doesn’t bring me back to 100%, I’ll be spending a month of my summer in isolation following a five-day plasmapheresis treatment in the hospital. If that fails, I’ll be going through Rituximab infusions—a form of chemotherapy.
I had big plans to take summer classes and get a job, but how can I plan anything when I have no idea whether I’ll be able to leave my house or not this summer? All I want is to not suffer so much—especially since I’m so conscious of my suffering now. I just want to be allowed to be myself.
Sometimes, I cannot sleep at night because I’m afraid I’ll never get back to who I am. Or even worse, I worry that I won’t know that I’m not completely better, and then I won’t get the treatment I need, and then I’ll slip into a relapse just as I’ve finally returned to a good life—and then I’ll go through this whole thing all over again.
But I don’t want to worry—I want to enjoy the improvements I’ve already seen after this second IVIG: my OCD almost completely disappeared overnight, my memory is much better, I’ve been able to contribute to discussions in my classes this week, and I’m even enjoying things again. This is wonderful, almost miraculous, news. Oh, that this trend would continue…