Those are two words I never thought I’d hear from my doctor. But this week, I finally did.
As my mom and I made the trip to my doctor’s office this week, I couldn’t help but feel that things were different this time—and most of all, that I was different. I was more present. I was more aware. I was bright-eyed again. I was finally myself.
This time, unlike my last visit in May, I opened the office doors myself, grabbing the handles without flinching. I pushed the elevator buttons. I sat in the waiting room chairs without thinking about Lysoling myself when I got home. I realized that contamination OCD was finally letting me go.
As I waited and heard the beeps from the IVIG pumps of other patients in the rooms down the hall, I figured out that it was a year ago to the day that I was sitting in those same infusion chairs for the first time.
My transformation over the last year has been nothing short of miraculous. Last summer, I could hardly walk, I couldn’t eat much, I couldn’t stay awake, and I could never be still because I constantly had involuntary movements. In those days, I would look in the mirror and be frightened, because the person staring back at me wasn’t me—it was a burdened soul whose face showed the deepest torment and despair. It was someone who only looked like me, who carried the weight of the world in a malnourished body.
But when it was my turn to see the doctor this week, after I reported on my lack of symptoms and the strange tonsil infection that was no more, and after she saw that the dark cloud that once enveloped me was gone, I received the pronouncement I’ve dreamed of for the last year:
I’ve known I was 95% symptom-free for a few weeks, but to have a doctor say so made the elation and amazement finally hit me. Better… In remission… Done with this terrible disease… How can it be for real?
As for the other 5%, I still look forward to getting it back. I’ve been having trouble with speech and word retrieval lately. Sometimes, sentences come out of my mouth as nonsense syllables with the rhythm and tone of normal speech, and the English words I do say aren’t always the right ones. Sometimes, I have a hard time comprehending what I read or what people say to me. Sometimes, I still get tics, and once in a blue moon, I fall down when I walk from my legs giving out.
“Executive function problems and movement issues are often the last things to leave,” my neurologist said. But the fact that I have so few other symptoms and have improved so dramatically after tonsillectomy suggests that it’s only a matter of time before I get to 100%.
If all goes as planned, I won’t be going back for any more follow-ups for another year, and I’ll be continuing on antibiotics, Plaquenil (an anti-inflammatory), Wellbutrin, and the same vitamins/supplements at least through this next year. But I’m tapering off Prednisone for good now!
It’s hard to believe that I’m 95% symptom-free, in remission, and not expected to relapse. I’m shocked to think that my nine-year nightmare is finally coming to an end. Most of all, I’m so relieved and grateful.
To anyone out there who thinks they’ll never recover from PANS… Keep fighting, and you’ll get there, no matter how hopeless it seems right now. Don’t give up. Someday, you, too, will hear those powerful words: You’re better.