Tag: Autoimmune Encephalitis

How Do I Stay Positive?

Published on by DreamingPanda2 Comments

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!

Continue reading “How Do I Stay Positive?” →

IVIG: Four-Month Update!

Published on by DreamingPanda6 Comments

It’s been over four months since I had IVIG—and six months since the abrupt onset of my tics and other movement problems. On the whole, I’d say I’m much better.  I’ve even started tapering off the steroids.  The way I put it with my family is that I finally feel like a person again.  I’m almost back to where I was before I started flaring two years ago—with the addition of tics, some walking issues, and hypersomnia.  It’s not all forward progress, though.  It’s really more of a two-steps-forward-one-step back process.

Continue reading “IVIG: Four-Month Update!” →

Steroids Turned Me into a 12-Year-Old Boy

Published on by DreamingPanda4 Comments

It’s been more than three months since I’ve been on Prednisone. I hate the steroid, but I love it, too, because I know it’s the reason I’m able to live a somewhat normal life right now. I would never want to take Prednisone unless I absolutely had to, though, because the side effects are pretty awful: weight gain, increased appetite, insomnia, moon face, acne, decreased bone density, increased susceptibility to infections, etc… But I have to take it to keep the inflammation down and help stop the autoantibodies from attacking my brain’s basal ganglia.

Every time I’ve tried to taper off the steroid since starting it in July, the depression, anxiety, OCD, tics, movement problems, and inability to eat have come back. Continue reading “Steroids Turned Me into a 12-Year-Old Boy” →

PANDAS Goes to College

Published on by DreamingPanda4 Comments

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?

Continue reading “PANDAS Goes to College” →

IVIG and the Waiting Game…

Published on by DreamingPanda15 Comments
Some of the antibodies that should give me back my life
IVIG: Intravenous Immunoglobulin from 1000+ donors

So I just got back from IVIG, and it really wasn’t that bad. I did it over two days, with the first day lasting about four hours and the second for six. I still have headaches from it, a bit of nausea, and some fatigue, but I don’t really care, because I feel hopeful that the therapy will give me my life back.  These temporary side effects are such a small price to pay for my freedom.

Now, I just have to wait for the positive effects to kick in—and hope and pray that they actually do kick in at all. Apparently, for most people, it takes three to six months to see a big improvement, but sometimes you start feeling better in a couple weeks. It can take up to a year for all the PANS/PANDAS symptoms to disappear completely. Occasionally, IVIG doesn’t work at all. But my nurse said to me, “Don’t worry. If you responded really well to steroids, IVIG is going to work.”

I don’t usually show my emotions much, but I broke down and cried as soon as she said that. Could one IVIG really heal me? Yes, it should. The thought that this eight-year ordeal is going to end and the idea that I will know what it’s like to feel good again—well… It’s overwhelming. But I’m ready for it.

A Day in the Life of Recovery

Published on by DreamingPandaLeave a comment

The strange thing about my condition is how suddenly it changed everything about me and my daily experience. Four months ago, though I was sick, you wouldn’t have known it—unless you happened to notice me nodding off in class, day after day, after consistent eight or nine-hour nights of sleep—or if you noticed the ever-increasing amount of dents in my car from suddenly not being able to tell where the edges of my car were. But now, with one look at me trying to walk across a room, it’s extremely obvious that something is going in my brain that I have no control over. Welcome to my new world of PANDAS.

One of the hardest things about recovery is learning to be honest with yourself by being willing to admit how hard everything still is. It’s often difficult for me to explain to my friends and family just how challenging each day can be, so I decided that instead of explaining, I would tell you about what it takes to get through a typical day…

Continue reading “A Day in the Life of Recovery” →