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”
As spring break approached, I did everything I could to avoid answering that dreaded question: “What are you doing over break?”
“Oh, I’m just taking a short trip and then going home and resting,” I told most people.
But the whole truth is that I’ll be sitting in my doctor’s office for two days hooked up to an IV to get a bunch of people’s antibodies poured into my body. The truth is that I desperately need this treatment so that my own bad antibodies will stop attacking my brain. The truth is that I’m going for my second round of IVIG to hopefully wipe out this disease once and for all.
Continue reading “Bring Me Back”
After eight years of searching for a diagnosis and then finally discovering I had PANDAS, it wasn’t enough for my family and I to simply know what my illness was. We wanted to know what caused it and who or what could be responsible:
Why did I get sick? What could’ve been done so that this never would’ve happened?
We blamed the doctors for brushing me off for eight years. We blamed them for not being willing to consider thinking outside the box. We blamed them for giving me more and more diagnoses while never stepping back to consider a single cause for all of them—while we insisted there had to be one. Continue reading “The Blame Game”
Lately, I’ve been having a harder and harder time with cognitive problems. I make stupid mistakes in school now that I’d never make in the past. I say the wrong words without knowing it. I mix up left and right as if I were six years old. I’m very forgetful. I do a lot of small but silly things everyday—little things that anyone might do once in a while but the fact that I do them so frequently makes me feel as if I’m losing my mind.
Continue reading “Losing My Mind… Halfway”