Tag: College

Am I Better Yet?

Published on by DreamingPanda7 Comments

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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I Run 5 Miles, but I Can’t Walk 50 Feet

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Suddenly losing the ability to walk at nineteen years old is terrifying and heartbreaking. I never thought it would happen to me, but this summer, it did. In a matter of twenty-four hours, I became unable to walk across a room without falling down multiple times.

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3 Months Post-IVIG: A Wild Ride

Published on by DreamingPanda6 Comments

Today is the three month anniversary of my IVIG treatment. It’s hard to believe it’s already been that long, but at the same time, it seems like an eternity ago because the last three months have been such a wild and difficult ride.

So far, the main improvement I’ve seen is with the chorea and tics. I’m starting to have a lot of days where they’re barely noticeable. The chorea is usually just a slight arm or leg jerk here or there—I don’t look like I’m constantly dancing anymore. I can actually sit still!

I've ditched the cane!
I’ve ditched the cane!

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What I Have to Believe…

Published on by DreamingPanda5 Comments

In the last two years, nothing has gone as planned.  I was supposed to go off to college and start my life again. I was supposed to leave behind the pain of the OCD I had seemingly conquered last year just before my freshman year. I was supposed to move away to let my career take off.  But instead, I’m sitting here about to take another nap because no matter what I do, I can’t keep my eyes open.  I never could’ve imagined that this is where I would be right now…

If I have to pick one thing that is the worst part about having PANDAS, I think it’s the fact that it makes me feel like I’m not myself anymore. I feel like I’m only a shadow of who I used to be—even of who I was a year ago. Continue reading “What I Have to Believe…” →

Still Falling… And Getting Back Up

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So I know it’s been awhile since the last post, but it’s been for good and bad reasons.

I had two weeks where I almost forgot I had PANDAS sometimes—days where I could get done almost everything I wanted to get done. I was walking normally and having a lot less chorea. My mind was mostly clear, and my concentration was good. I even had an almost normal amount of energy. So far, I’ve been able to make all A’s and a B+ in my classes. Even so, I haven’t had time for a social life. All I’ve been able to do is do homework and rest. On the outside, it was looking like I was doing pretty well. But then I started having more bad days…

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Another Flare…

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Last week, I had my worst flare since everything really went downhill in June. I’m happy to say that the flare is gone now (thanks to more Prednisone and maybe the IVIG), but now that I’m coherent again, I thought I’d share what my PANDAS flares can look like. Please bear in mind that every person reacts differently to this disease, though.

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PANDAS Goes to College

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This week, I’m heading back to college. Is that crazy? Probably, but I’m going to try.

As it is, my main PANDAS symptoms are choreiform movements/tics, physical and mental fatigue, hand tremors, a bit of OCD, and general anxiety. But I have my mind back. My mood is stable, I feel like myself, and I don’t fall asleep every time I sit down for more than ten minutes. I’m a functional human being again.

But the problem is that I have to be more than “functional” to get through college. I’m studying in one of my school’s most demanding programs. If trying to read a chapter of my textbook right now for an online class makes me have to lie down and rest for two hours afterwards, how can I get through a week of classes?

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