Last week, I had my worst flare since everything really went downhill in June. I’m happy to say that the flare is gone now (thanks to more Prednisone and maybe the IVIG), but now that I’m coherent again, I thought I’d share what my PANDAS flares can look like. Please bear in mind that every person reacts differently to this disease, though.
Category: Life with PANS/PANDAS
PANDAS Goes to College
This week, I’m heading back to college. Is that crazy? Probably, but I’m going to try.
As it is, my main PANDAS symptoms are choreiform movements/tics, physical and mental fatigue, hand tremors, a bit of OCD, and general anxiety. But I have my mind back. My mood is stable, I feel like myself, and I don’t fall asleep every time I sit down for more than ten minutes. I’m a functional human being again.
But the problem is that I have to be more than “functional” to get through college. I’m studying in one of my school’s most demanding programs. If trying to read a chapter of my textbook right now for an online class makes me have to lie down and rest for two hours afterwards, how can I get through a week of classes?
Battle Scars
For much of the summer, my illness was completely invisible, but lately, with one look at me, you know something is going on. If I try to walk around normally, my chorea often makes me look like I’m being electrocuted or like I’m doing some weird dance—but it’s completely involuntary. I have horrible acne from one of my medications. I’ve started to develop a puffy “Prednisone face.” My arm is covered in strange bruises from IVIG and all the blood work I’ve had to get.