Tag: PANS

Let It Roll: OCD & Trail Biking

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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.

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IVIG#2, Two Months Later

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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…

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The Day I Outran My Illness

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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.

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Alone

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Alone

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.

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I Don’t Know Anymore

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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” →

My Last Piece of Freedom

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Last summer, over the course of a few hours, I suddenly became unable to walk due to an autoimmune attack in my brain. If I tried to go from my living room to the kitchen, I fell multiple times because my legs would suddenly give out.

In one moment of insight during that horrendous time when I had not only lost the ability to walk but had essentially lost my mind, I said to myself, I’m going to run a marathon someday and overcome this. And I’m going to beat my best 5k time from eight years ago within the next year.

It was truly a crazy idea. Maybe I still wasn’t in my right mind when I came up with that…

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My First “Normal” Summer?

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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.

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What’s It Like to Survive a Flare?

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This week, I finally hit the post-IVIG flare that we were all dreading.  Thanks to a six-day burst of high-dose Prednisone, I’ve come out of it now, but I hope I don’t have to go through that ever again.  Unfortunately, I probably will.

Until my most recent IVIG, my flares were getting worse and worse.  One night a few weeks ago, I found myself spacing out at the kitchen table for about two hours, unable to make myself get up, because I had too many OCD compulsions. When I realized I’d been doing nothing for two hours and thought about how hard it would be to do anything with the burden of OCD, I just lost it—I spent twenty minutes walking around my apartment screaming and hitting the walls.

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IVIG #2: I’m Finally Aware

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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” →

Bring Me Back

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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.

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