What I Really Mean When I Say I’m Fine

My life with PANS and a brain on fire! (cred: KC Green)

As I hurried off to class the other week, suddenly, I knew things were awry: it was that strange and all-too-familiar feeling in my head that foretells an atonic seizure.

Defiantly, I ignored it, kept running upstairs to the lecture hall, and made it all the way to the door without any issues. But after a few steps in the classroom, sure enough, my legs went completely limp, and I collapsed on the floor in front of everyone.

“Are you okay?” my professor asked, clearly alarmed.

“Yeah.” I stood up, totally unperturbed, as I brushed off my now-bruised knees. “I’m fine.”

And then there I was, nonchalantly taking a seat and going to class as if nothing had happened—as if it’s not a big deal that I had a seizure.  I told myself…

I’m fine.

Because I was in the middle of a PANS relapse, as usual, I didn’t retain anything my professor talked about that day.  People would spew words from their mouths, but I struggled to put them together into anything I could interpret.  In times like that, it’s as if someone has replaced my sharp intellect with a bowl of jello.  I was there in class physically, but mentally, I was lost inside an inflamed brain.  But hey, at least I’d shown up. This is fine, I said.

After eleven years of PANS, I don’t even remember what’s typical anymore. I don’t bat an eye if I suddenly have involuntary movements all over my body, if I can’t speak, and if I hallucinate. Most of the time, I don’t think much about the twenty pills I take each day and my after-school trips to infusion centers to get steroids or IVIG. This is all just part of my life.

I strongly believe that the way I’ve made it through over a decade of this disease is that I constantly tell myself I’m fine. It’s not that I’m in denial of my illness—it’s an assurance that PANS doesn’t define me.

When I say I’m fine, I mean that I’m still fighting, still hoping, and still trying to live as much as I can despite my condition.

When PANS gets really bad, as it has been lately, I have a sense that I’m alive, yet no longer part of my own life. PANS steals everything that makes me myself––my personality, my sense of humor, my love of living.  It transforms me into a terrified creature that runs home from school screaming in psychiatric anguish.  Nevertheless, I take my medicine, dry the tears, and go back to class the next day, over and over and over again.

When I pull myself together and carry on as best I can while my brain is on fire, I’m declaring that PANS won’t ruin my life.  When I’m flaring, and I feel like someone else on the inside, the life I live on the outside is a reminder that the real me is still in there somewhere––and will one day resurface. When I say I’m fine, I mean that I’m not giving up on someday getting well.

Indeed, I’ve started weekly high-dose IV steroids, and after two treatments, I’m back to functioning at 90-95%. It’s as if I’ve returned from the dead.  I feel like I can think again, and my mood is stable for the first time in months.

Unfortunately, my dramatic improvement from the inflammation-reducing steroids proves that my symptoms were caused by my immune system attacking my brain. I know that’s not okay. I know it’s bad that my body can turn against me in the worst ways imaginable.

Nevertheless, If I think about how disturbing this all is, I’ll be too unsettled to enjoy being well. So I assure myself that I’m fine, and I focus on the fact that I’m better… At least for now.

Once again, I survived a disease that took away my very self and tried to kill my spirit. PANS didn’t defeat me. So I’ll tell myself once more:

I’m fine.

6 thoughts on “What I Really Mean When I Say I’m Fine

  1. We are always praying for you. You are an inspiration.
    I saw in a previous blog that you said your parents were reimbursed for ivig. Could you please share how that happened?

    Like

    1. Thanks so much, Tiffany!

      It took over two years of fighting to get my 2015 treatment reimbursed. We brought in a third-party patient advocate who compiled evidence, wrote letters, and made a bunch of phone calls. I don’t know the details exactly, but I think they only wanted to pay for half of it at first (because I had an immune deficiency), and it’s only very recently that they said they’ll pay back the other half. I think my parents are still waiting to get the second check in the mail, but we do expect it to come.

      There was another issue with my doctor ordering the Gammunex from an out-of-network pharmacy, too. If she’d used an in-network pharmacy, it would have been much easier to get it covered, so watch out for that if you’re doing IVIG again. Insurance only wanted to cover the nursing fees for my 2016 treatment because of this, but after a lot of fighting, it looks like they’ll pay for the medicine itself, too… Does this help?

      Like

  2. Wow, it sounds like you’re dealing with a lot! Hope you continue to be functioning at 90-95%. I can relate to feeling like you “no longer know what normal feels like”, though I’ve never had symptoms as bad as you do. My symptoms are more emotional, and interfere with social learning as well as probably–I’m thinking more and more–pushing faculty away at my university. As long as it’s just making it in classes I’m fine, but getting hired as a researcher is really difficult.

    Like

Share your thoughts. What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s