Goodbye, Tonsils

Dairy-free ice cream
I don’t even wanna know how many pints of this I’m about to eat…

With one day left until my surgery now, it’s been an interesting week. For the first time in eleven months, I’ve stopped antibiotics completely, so as not to influence the tonsil and adenoid cultures that will be performed. The doctors also told me to stop all supplements, so my pill cases have been extraordinarily empty these last few days (a much-welcomed sight!). Although I’ve had a slight increase in tics, trouble concentrating, and more trouble falling asleep, I haven’t noticed nearly as much of a difference as I expected.

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Happy Birthday, Dreaming Panda

Cake

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.

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Am I Nuts?

 

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Recently, a new obsession has been poking my brain:

Am I nuts?

Given what my illness has put me through in the last year, it’s not an unreasonable concern. When I’ve had bad flares—which can consist of screaming out whatever disturbing thoughts are in my brain, running out of the house or throwing myself into walls, having all manner of bizarre involuntary movements, and being unable to focus my eyes—I would certainly appear “nuts” to an outside observer.

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Another Flare, Another Decision

Getting sick never just means being under-the-weather for a few days...
Getting sick never just means being under-the-weather for a few days…

With PANDAS, it’s astonishing how much can change in one day. Last June, I developed a tic disorder and became unable to walk in just a few hours. I’ve spent the year that followed fighting to get my life back. One day this week, I flared again, and it’s already had astonishing repercussions…

After a week on Wellbutrin, I was starting to feel the closest to normal that I’ve felt in two years. It was like the summer before I went off to college—I had some OCD and anxiety but was mostly functional and otherwise healthy. Unfortunately, after five days of feeling great last week, I slowly fell back into depression. Then, I got a sore throat, a headache, and a cough.

A few days later, I lost it.

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Let It Roll: OCD & Trail Biking

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

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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Alone

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

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 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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