As I opened my eyes to the morning sunlight peeking through my blinds, for a feel blissful seconds, I forgot the many reasons I shouldn’t feel as calm as I did in that moment. But not a minute later, it all came rushing back, and my stomach did a somersault.
I rolled over and saw a missed call from my infusion pharmacy, and all at once I remembered the horrible quandary I’m in. I remembered the unfortunate events that led to it. And worst of all, I remembered that losing access to monthly IVIG treatments could mean I was on the verge of a relapse that would make me lose my mind.
Sometimes, waking up means waking into a nightmare.
This spring, after months of relapse and recovery cycles, I set out on an aggressive year-long course of monthly IVIG and high-dose IV steroids in the hope that maybe we could shut down my disease once and for all. My insurance was going to cover each monthly $7000 infusion at 100%.
Thanks to this treatment protocol, before long, all of my symptoms began to fade away. The cognitive skills which had been compromised from brain inflammation improved, my involuntary movements ceased, my depression and anxiety became manageable, and my leg weakness and the resulting falls completely stopped.
In short, I got to a place with my condition that seemed unimaginable before starting treatment. I did so well that I finished a whole semester of grad school with straight-A’s while holding down an assistantship position.
But fast-forward to several weeks ago, when I ran into an insurance issue which put a hold on IVIG. In an effort to finish out the last five months of treatment that my doctor prescribed, I’ve since spent at least fifty hours calling and emailing doctors, insurance, and infusion companies to no avail.
So here I am, wondering how long until I relapse.
Until recently, I’d been amazed how well I was doing despite going so long without IVIG or steroids. I was thinking they had done their intended job of curing me. I went home for winter break and began working on all of the projects I wasn’t well enough to do when I had to move back for the first eight months of 2018.
In the absence of the brain fog and severe depression which almost always begin a relapse, I figured I was in the clear and not going to flare anytime soon. After all, with proper treatment, PANS isn’t supposed to be a lifelong condition. When I was diagnosed in 2014, it was never a question of if I would get better, but when. So maybe I was finally better.
But lately, although my cognitive abilities are still intact the majority of the time, I’ve started having the most vocal tics of my life, as well as glimpses of derealization. Then I had a frightening couple of days when I was confused and unable to reason. Occasionally, I’ve had a brief wave of the characteristic despair-rage-panic feeling that comes with every bad episode.
And worst of all, I just realized that I’ve been compelled to restrict my food intake again, and my weight is dropping—and no, I don’t need or want to shed pounds as some misguided “New Year’s Resolution.” It’s OCD again.
Luckily, I’m still doing very well on the whole; what symptoms I do have are not the most tormenting ones. But I wonder if it’s only a matter of time…
Faced with progressively serious symptoms, when I get out of bed to face the day now, there’s a question burned into my mind:
How much longer do I have?
Although PANS isn’t a terminal illness, in a bad enough attack, it does feel like dying. It’s not just about having a lot of symptoms—it’s about losing who I am and everything that defines me, which no symptom scale can ever capture. And if I’m to that point, it can take a year or more to get everything back.
Right now, I feel as if I’m being dangled over the edge of the “Relapse Cliff,” but there’s still a rope anchoring me to solid ground, keeping me from going over the ledge… But how much longer until it gives way?
So I each morning, I ask myself: will this be the day yet another old symptom appears? Will this be the day my mind begins to fade? How long until the depression consumes me? How long until I can’t solve a simple math problem? How long until reality slips away?
No one knows how long I have before it will be like the disastrous flare of 2017, and that’s the most frightening aspect of my predicament. It could be days, it could be months, or it could be never again that I get all the way back to the dark places that I’ve seen too many times over the years. (Hopefully, at the very least, I could still just pay the $100 out of pocket for a dose of IV steroids if I really start to tank, to prevent the worst from happening.)
My most recent symptom flare may as yet blow over with no lasting effects—or it may be only the beginning of something far worse.
All of this leaves me with a choice to make: do I sink into despair, imagining where this downward trend may end, or do I fight back, remaining optimistic and arming myself with tools to avoid repeating history?
I choose to fight back.
I’m getting help again at the eating disorder treatment center that helped me conquer my issues earlier this year. I’m also using the unexpected disruption to IVIG therapy to pursue additional testing, including the full autoimmune encephalitis workup that no one has done for me so far. (You have to be off IVIG for at least two months in order for antibody testing to be valid.)
The fact of the matter is that I’ve met few others with such a persistent case of PANS that’s needed this many rounds of IVIG (eighteen so far) and also didn’t even get better after treating Lyme. And I’ve tried all sorts of integrative and complementary approaches that others have claimed as their silver bullet. Although some have helped, and probably continue to help, it’s increasingly clear that they’re not going to be enough on their own.
At this point, it seems that farther testing is worth a try, because maybe I’ll get some answers that lead me to a better, longer-lasting treatment protocol—and maybe my insurance company would be willing to treat a disease that’s not labeled “controversial,” like PANS wrongly is.
Every day, as my reality sinks in when I awake, I make the choice to stand up to it and get out of bed. I choose to fight back. I choose to not be controlled by anger towards those who’ve allowed my condition to deteriorate. I choose to not let my distress about my symptoms take any more from me than my illness itself already has. I choose to live as fully as I can right now, and not dwell on how much longer I may or may not be okay.
The one good part about facing serious illnesses like PANS and Lyme is that it’s given me a heightened appreciation for all of the good days I get. Because I don’t know how long I have being as functional as I am right now, every day when I can wake up and still work on projects or spend time with friends/family is a gift. So I try to make the most of whatever I have each moment.
I don’t know what 2019 holds, and I don’t know when, how, or if I’ll get back on my old treatment. What I do know is that if I go down, it won’t be without a fight.
For 2019, I will hold out hope that I’ll finally get answers and find a better way forward… I wish the same for all of you!
P.S. Mark your calendars: January’s teleconference support group for teens/adults with Lyme/PANS/AE and similar neuropsychiatric or chronic conditions is Saturday, January 12th at 2 PM Eastern Time (7 PM GMT). Call (605) 472-5395, and enter the meeting ID: 339705.
[Bed photo: Magda Wojtyra, Flickr]