I Don’t Know Anymore

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

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…

Continue reading “My Last Piece of Freedom” →

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.

Continue reading “My First “Normal” Summer?” →

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.

Continue reading “What’s It Like to Survive a Flare?” →