This week, legislators in Wisconsin have the opportunity to save hundreds of lives and millions of taxpayer dollars: a bill to establish an advisory educational council on PANS/PANDAS is under review. New York is also considering similar policies, and several others including Virginia have successfully implemented them.
Continue reading “Why PANS/PANDAS Awareness Matters: An Open Letter to Legislators”
Anorexia nervosa: two words that hold an unspeakable amount of pain and torment; an illness that takes over your mind and ravages your body; a disease that kills 5% of its victims; a nightmare that ruins your life; a condition that might happen to other people, but not to me… Until it did.
I haven’t had time to write a longer post for a few weeks, but I just wanted to assure you that I haven’t disappeared.
I’ve been away, not because I’m ill, but because I’m well. In fact, I’d say I’m the best I’ve been in the last nine years.
I’ll never forget when I ran my first half-marathon in May.
While some people might remember the elation of achieving such a momentous feat, what I remember most was the pit in my stomach whenever I saw a mile marker—all I could think about was how many more I had left and how impossible it seemed that I would finish.
But I made it to the end.
A few months ago during one of my trips home, I came across an old lock-box where I used to hide things as a child, but I couldn’t remember what I would’ve put in it. Tiny toys? Candy? Secret notes?
What I found there instead shocked me.
This week, I woke up and cried.
99% of the time, I focus on how wonderful it is to be in remission, and I don’t allow myself to think about how awful my life used to be. I don’t let myself feel sorry for myself. I try to not dwell on the past. But several nights per week, I have nightmares—most of which revolve around everything that happened to me. And these are what break me.
“You’re better.”
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.
This week marks the one-year anniversary of my blog. To say it’s been an incredible year doesn’t even begin to describe it. I’ve come such a long way since I first started writing about this difficult journey—and so has this blog…
Last June, I’d hit rockbottom. I was in such bad shape and declining so much that I thought I’d die. Although I was otherwise dysfunctional to the point of not being able to walk, not eating, and not being able to speak coherently, I was able to write. In the countless hours my family spent researching PANDAS/PANS on the internet, they’d never found a blog written by a PANS patient. I thought maybe I could change that. I hoped that maybe by sharing my experiences, I could help someone else going through the same thing. So I started a blog.
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.
There are some moments in life that you can never forget—moments when your whole world is turned upside, for better or worse. Living with PANS, a disease that sets in overnight and flares up in the same way, I’ve had more than my fair share of those life-changing moments.
However, another such moment (albeit a more positive one) happened on Saturday when I finished my first half-marathon: 13.1 slow, arduous miles.
