Tag: PANS

The Blame Game

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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” →

Losing My Mind… Halfway

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headinhandsv7Lately, 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.

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Slamming the Door on OCD

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It’s just a doorknob—just a little piece of metal attached to my door. For most people, it’s an overlooked necessity that doesn’t get a second thought. But for me, it’s a peril.

Until a few days ago, I’d gone the entire school year without ever touching my bathroom’s doorknob. I avoided this by either leaving the door cracked enough to let me use my feet to open the door, or I grabbed the doorknob with a designated washcloth that I kept nearby. Unfortunately, I often don’t touch any other doorknobs or handles of any kind in the rest of my apartment, either—not the refrigerator, not the microwave, not the cabinets, and not even the doorknob to my own bedroom.

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The Run of My Life

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Recently, I signed up to run in my first half-marathon.  I was planning to cross the finish line this summer as the ultimate way to overcome PANDAS. I was hoping to be able to say, “Nine months ago, I couldn’t walk, but today, I’m totally healthy and symptom-free!”

But my plans have been ruined, and my dreams have been shattered.

When I underwent high-dose IVIG therapy in August, for the first time since I got sick eight years ago, I was hopeful about making a full recovery. I knew it could take up to a year for me to get completely better, but I didn’t mind. As long as I was getting better, no matter how slowly, I could keep hoping.

But then I stopped getting better.

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Falling Off

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This bulletin board represents my life

Even though I love to decorate my room, when I moved into my apartment in August, I could only muster the willpower to put just a handful of small pictures on my bulletin board. During my Freshman year, I’d made my room look like “an Athenian palace,” as one friend put it—at least when I didn’t leave my trash strewn all over the floor (thanks, hoarding OCD).

My lack of decor last semester was an analog of my life. When I finally turned a corner in November, I covered most of my bulletin board with posters, postcards, pictures, and swag from my first 5k race. The better I’m doing, the more things are on the bulletin board.

A few weeks ago, pictures and papers started falling off, one-by-one. I didn’t put them back.

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Why Kids with PANDAS Are Brave

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Recently, I had the chance to meet with a family who had two kids with PANS. We had some great conversations, and I’ll probably write a whole other post about our meeting another time. But there was one exchange between me and the seven-year-old that I can’t stop thinking about:

Me: “You’re very brave.”
Little PANDA: “Why?”

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Am I Better Yet?

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Ever since I started treatment this summer, I’ve found myself constantly asking, “Am I better yet?”

When I got IVIG, I’d hoped maybe I would start getting better within a few weeks. Whenever I had a good day, I started to think I was getting better. But then the symptoms would come back, and I’d be disappointed. I’d been told it could take me up to a year to get back to 100%, but I hoped it would be sooner. Wouldn’t you?

Six months later, I’m still playing the am-I-better-yet game, and the answer is still no. Certainly, I’m “better” than I was in a lot of ways, but I’m nowhere near where I want to be. I was doing really well, but now that I’m finding out where I am with less of the anti-inflammatory and immunosuppresent qualities of the steroids, I really don’t like what I’m seeing.

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What I Learned from Losing My Wallet

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Recently, I had the misfortune of losing my wallet. Anyone would be upset and worried about losing something that contained your credit and ATM cards, driver’s license, school ID, cash, car keys, and apartment keys. But I had another concern: as soon as you open my wallet, you can see a medical information card that gives away all kinds of personal health information.

If I were ever in an accident or had another emergency, it’s a good thing that this information is so easily accessible. But in this case, I couldn’t help but wonder who was going to read it. There’s no way whoever found my wallet wouldn’t see it. I had managed to keep my illness a complete secret from everyone but my close friends and professors, because I didn’t want to be treated differently. Would this be the day that everyone found out?

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My 6-Mile Run… To the Pharmacy

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Managing my medications is a big production. If I didn’t have a pill case, there’s no way I could possibly remember to take all eleven things each day.  Every week, I sit down and fill the case for the week. It takes half-an-hour. It used to take longer when my OCD was worse and I had to check and re-check everything a ridiculous number of times. I only check it once now.

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How Do I Stay Positive?

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When I look back at the last few months and think about everything I’ve been through, I’m often surprised by my own resilience. What keeps me going? Why do I not give up? And I think to myself, “How in the world do I stay so positive?”

The answer? I don’t.

In our society, there’s a faulty idea that being strong and tough means holding in all emotions except the pleasant ones. We salute the people who go through terrible things and still smile and look on the bright side at the end of it all. We are forever being told that as long as we can be optimistic about life and stay positive, we’ll get through whatever comes our way. Although no one ever says so, to me it often seems like crying and grieving and expressing pain is frowned upon. Everything will be okay. Just be positive!

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