Tap, tap, tap.
It’s 2 AM, and someone is at my bedroom door. I bolt awake and hold still so they don’t know I’m in the room. I slowly reach for my phone and think about texting my parents to come help me.
But I’m all alone. No one is at the door.
I’m hallucinating again.
With one day left until my surgery now, it’s been an interesting week. For the first time in eleven months, I’ve stopped antibiotics completely, so as not to influence the tonsil and adenoid cultures that will be performed. The doctors also told me to stop all supplements, so my pill cases have been extraordinarily empty these last few days (a much-welcomed sight!). Although I’ve had a slight increase in tics, trouble concentrating, and more trouble falling asleep, I haven’t noticed nearly as much of a difference as I expected.
With PANDAS, it’s astonishing how much can change in one day. Last June, I developed a tic disorder and became unable to walk in just a few hours. I’ve spent the year that followed fighting to get my life back. One day this week, I flared again, and it’s already had astonishing repercussions…
After a week on Wellbutrin, I was starting to feel the closest to normal that I’ve felt in two years. It was like the summer before I went off to college—I had some OCD and anxiety but was mostly functional and otherwise healthy. Unfortunately, after five days of feeling great last week, I slowly fell back into depression. Then, I got a sore throat, a headache, and a cough.
A few days later, I lost it.
Recently, I’ve taken up trail biking, and strangely, there are a lot of parallels between becoming a trail biker and overcoming OCD…
Ever since last summer, I’ve been apprehensive about getting on a bike, considering that my legs used to give out on me frequently when I walked. If one of these attacks happened as I rode a bike at 20 mph down a road, I could get seriously hurt.
But this week, I got back on my bike anyway and rolled into the woods, following a friend of mine who’s an avid trail biker.
As my two-month IVIG follow-up approached, I was sure I would have bad news no matter what. It would be bad news if my doctor decided I needed an invasive plasmapheresis treatment. It would be just as bad if she told me we had to “wait and see” if this second IVIG worked, because certain symptoms were still making me miserable.
Well, I didn’t exactly get either piece of news. We made a plan that involved neither option…
While studying in my room one night, I heard laughter and music outside my window and smelled gas and burgers. I looked outside, and half a dozen people were having a wonderful time sitting around a grill, sharing food and stories about upcoming final projects.
And that’s when it hit me—I’m so lonely that I don’t even know I’m lonely. I’m so lonely that I forget how much I miss spending time with people—until I see others doing it.
Well, after dreading it and hoping and praying it wouldn’t happen again, I’ve just had another bad flare.
On my way to class last week, I overheard someone say she had Strep throat.
No. I can’t flare again, I thought to myself. It’s not going to happen. I’m still on antibiotics. I’ve had two IVIGs. I should have plenty of good antibodies if I’m exposed. I’ll be fine…
But then, when I got to class and saw one of my lab mates who hadn’t been around in a few days, I asked where he’d been—and immediately wished I hadn’t:
“Oh, I had strep throat. It was a really bad one!” Continue reading “I Don’t Know Anymore”
This week, I have wonderful news… Instead of moving home for the summer like I’d planned, I’ve decided to remain at school to take classes and work.
While this may sound like a “normal” summer for an almost-20-year-old, for me, it’s a huge victory. Not too long ago, I hated everything and wanted nothing more than to go home and spend my summer lying on the couch or in bed (just like last summer). But now, I want to keep pursuing my dreams in this city—dreams that I’d pushed to the back burner for far too long because of my illness.
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.
