Is There Hope in the Unknown of Chronic Illness?

Three months ago, as I drove away victoriously from the IV infusion center for the ninth, and final, time that semester, I almost dared hope I’d left behind the last three years of treatments and relapses… Almost.

It was the end of my college career, and I’d just spent its entirety fighting Lyme disease and an autoimmune condition that doctors still aren’t sure how to treat—or what the long-term prognosis is. I’d not only juggled exams and papers and weird living arrangements for four and-a-half years, but I’d been battling through countless procedures and medications and appointments—always in the naive hope that my illness would soon be over.

Yet my disease always returns when least expected.

Last August, I’d been enjoying a steady time of health, having completed a summer internship and preparing to coast my way through graduation. But then, out of nowhere, my immune system attacked my brain once again, and before I knew it, PANS had kidnapped me from my own body. All of a sudden, my illness held my personality and my intellectual capability as hostages, demanding a new and stronger treatment as a ransom.

And so, my neurologist put me on IV steroids for the rest of the semester, and off I went to the infusion center each week.  Slowly, my cognitive abilities returned, and against all odds, I graduated in December.

But then I was even more amazed when I began getting back parts of me that I had no idea I’d lost to my disease—my sense of humor, my hobbies, my curiosity, and my love for living.

In fact, after the steroids, I was doing so well that, for the first time in nearly two years, I started to let myself dream about my future, because it finally seemed like PANS was in my past once and for all.

But then came last Monday…

Out of nowhere that afternoon, my thoughts began to spin. The tell-tale despair-rage-panic feeling that only PANS can bring pierced through my brain like a dagger, permanently marring that day into a nightmare.

I knew I was having a panic attack—a classic PANS symptom—but I figured if I took some Ativan and Advil, I could keep the worst of my disease at bay. Maybe it was just a fluke. Maybe I’d wake up tomorrow as if nothing had happened.

Yet with each day that went by last week, I fell farther and farther and farther into the nightmare. By Thursday, I was curled up in a fetal position all day, in complete and utter psychiatric torment created by the uncontrolled inflammation in my brain. I existed in a nothingness, in which doing anything at all was exhausting and torturous. The sofa moved as the walls danced side to side, and the pillows dragged themselves across the floor—hallucinations that proved my immune system had set an inferno to my neurons.

And then the doorbell rang…

Just as I was sure I couldn’t take the autoimmune agony anymore, on Friday morning, a nurse showed up at my doorstep, hooked me up to an IV, and dripped another 1000 mg of Solumedrol through my veins—just like at the infusion center last fall.  (That it only took three days of pleading with insurance and arguing with the pharmacy was quite a miracle.)

Less than an hour after the treatment, a dark cloud lifted off my psyche; the bone-crushing obsessions and irrational terror ended.  It was as if the whole episode never happened.  My symptoms completely abated.

Sometimes, when I get better from a flare-up, I’m so relieved that I feel nothing but gratitude. Other times, like this one, I’m overcome with anger.

For unknown reasons, although PANS seemed to be in my past until this week, I’ve been getting physically sicker and sicker in other ways ever since I graduated in December.

These days, if I go out for errands or to meet up with my friends for too many hours at once, I end up in bed for days afterward.  My hands are constantly swollen.  I ran half-marathons last fall but now can barely run at all.  I’ve seen my doctors and spoken with my therapists, and no one knows what’s wrong with me.

I’m so angry that despite doing everything I can to be healthy, I continue to get sicker—and had yet another PANS flare this week.

On the surface, you’d think I’d be the healthiest person alive…  I sleep nine hours each night. I take a walk every day. I eat a whole-foods, paleo diet. I go to therapy. I avoid stress as much as possible. I live in a new-ish house, free from toxic mold and pests. I’ve been treating my Lyme disease under the guidance of another expert for over a year.

So What the @#$% am I doing wrong?

Lately, I’ve lain awake in bed, feeling my heart thump through my chest… “Why?” the word falls from my lips, like a curse under my breath.

Yet despite my illness and my worst intentions, the life force continues to flow through me with every heartbeat and every respiration. On those nights, a lonely tear streams down my face, because I realize that my body isn’t ready to give up yet—and neither can I.

The truth is that there are far more questions than answers in our existence. There are many more mysteries than certainties—both in relationship to our health and in our relationship to the universe. There’s no simple solution to anything, and especially not to healing the two all-consuming diseases that I have.

As I feel my pulse right now, I’m taking a breath, because I know my body is saying I still have a life to live—even if my illness makes it nothing like the one I want right now. Flare-ups like this week’s may remind me of the fragility of my own body, but they’re also a testament to the strength possessed deep within.

I will never find all the answers, and I fear every day that I’ll never be cured. Even so, as long as I have a heartbeat, I will keep searching, and I will keep fighting. Now is not the time to give up—it’s the time to keep living and trying, one tremulous breath at a time.

Why PANS/PANDAS Awareness Matters: An Open Letter to Legislators

This week, legislators in Wisconsin have the opportunity to save hundreds of lives and millions of taxpayer dollars: a bill to establish an advisory educational council on PANS/PANDAS is under review.  New York is also considering similar policies, and several others including Virginia have successfully implemented them.

Continue reading “Why PANS/PANDAS Awareness Matters: An Open Letter to Legislators”

Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS

This week, I made the mistake of reading the PANDAS Wikipedia page, and now I’m boiling over:

“Treatment for children suspected of PANDAS is generally the same as standard treatments for [Tourette Syndrome] and OCD. These include therapy and medications…”
Continue reading “Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS”

My Disease Could Make Me Lose My Mind. Here’s How I’m Coping…

After eleven years of brain-related chronic illness, I’ve come to live in a constant state of uncertainty not only regarding my conditions, but regarding my entire life.

I never imagined I would ever get sick in the first place, let alone to then be sick for over a decade. The fact that my illness happened at all has taught me that no matter how certain you feel about your life, you can’t really know what the future holds. Continue reading “My Disease Could Make Me Lose My Mind. Here’s How I’m Coping…”

Is This the Hardest Job in the World?

As graduation approached last semester, people constantly asked what was next. What did I want to do with my life? Did I have a job? Would I stay in the city? Was I going to grad school?

Before my PANS relapse in August, I thought I knew all the answers. However, this disease returned not only to attack my brain, but to destroy all my plans.

Continue reading “Is This the Hardest Job in the World?”

Not About Symptoms: The Truth on PANS/Lyme Recovery

When people talk about PANS and Lyme recovery, I’m frustrated that it’s always in terms of symptoms. For me, it’s never about the symptoms—it’s about coming back from the dead and regaining the parts of me that were lost.

When PANS makes my immune system attack my brain, the physical effects (similar to a brain injury) give me a mental sense of losing who I am and even of being disconnected from reality.

To be honest, I’m vexed that I never seem to adequately describe what it’s like down in the abyss of PANS and Lyme, because it can’t be understood by talking about my symptoms. I want everyone to know that what happens on the inside—not only the visible symptoms—is what ultimately defines recovery for many of us.

What Happens in My Mind During a Flare?

You see, when I have a PANS relapse, as I did starting in August, it’s like someone kidnaps me from my own body. It’s as if they take out everything that makes me myself and leave behind a shell that only looks like me on the outside.

When I’m in a flare, there’s a wall separating me from everyone, as if I walk around in a semi-opaque plastic box that mutes and dims everything I try to perceive.

I’m both a puppet and a spectator of my life, mechanically going through my activities as normally as I can while not being a part of them anymore. My days mean showing up invisible and ignored at my own birthday party while watching everyone celebrate without me.

In those times, my thoughts and reasoning make sense to me, but when I have to interact with the external world, everything is confusing. No one understands what I’m trying to tell them, because I can’t find the right words to crystallize the ideas in my head when I speak. I feel like I’m on a whole other planet from everyone else, and the loneliness and lack of communication is devastating.

Sometimes, I see the ceiling and the floors dancing around, and I know I’m hallucinating, so then I wonder: what else am I seeing and feeling and experiencing that isn’t based in reality? One of the hardest parts of my flares is the sensation that I’m losing my mind while being lucid enough to realize I can’t know how far gone I am—and wondering how much farther I’ll fall.

Yet as awful as the detachment from life and reality is, the worst part is by far the psychiatric torture that results when the brain is inflamed. To have a PANS/PANDAS flare is to be forced to drink the most bitter elixir of despair, rage, and panic stirred together into a brain-crushing poison…

It makes you scream and run and pull at your hair because you’re trapped inside a mind that terrifies you—and there’s no way out. You’re afraid because you feel like a menacing outside force is in control of your body. Your thoughts are turned against you, taunting with hopeless lies and instilling irrational fears and obsessions that consume every moment. It’s so unbearable that you’re not sure how you’ll survive another minute, and you hope the PANS potion will kill you.

So much of what I experience and feel during a flare cannot be quantified objectively or understood by what everyone sees on the outside. People do tell me I look less tormented or more like myself when I get better, but they have no way of knowing the magnitude of the transformation—or the profoundness of suffering from which I’m emerging.

You can’t measure one’s sense of “self” with any blood work or symptom scale—especially if you’re asking a person whose brain and ability to process information has been compromised. By definition, I can’t accurately evaluate how ill I am while still ill. But when I’m better and back to myself, then I know.

And right now, I know.

In October, I began to come back to life after high-dose IV steroids. As I got better, I came to realize more and more how much of my personality had been stolen by this disease. My depression and anxiety were the first to subside, only hours after my first treatment, but some part of me knew I still wasn’t “right”—though I couldn’t quite identify what was wrong with me.

There was more to recovery than not having symptoms…

I hadn’t been able to socialize or do school or enjoy my hobbies, so when those things became not only possible, but natural after two more treatments, that’s when I felt I was truly healing—not just when my depression, anxiety, tics, and cognitive problems began to disappear.

Recovery wasn’t only about having fewer symptoms—it was about having more of my personality and the ability to enjoy and live my life.

Today, three months later, I feel great, but most people would say I’m nowhere near recovered: I’ve recently developed a “neurological limp” where my left foot drags behind me, and both legs give out every few steps when I walk. And I’ve started having complex vocal tics where I involuntarily utter strange (though usually hilarious) phrases against my will.

Obviously, I’m still hoping my Lyme/Bartonella treatment will knock out these remaining problems, but trust me: I’m doing far better than my symptoms might suggest.

These days, I’m enjoying being alive, I’m seeing friends, doing grad school applications, and writing my book (plus intensive outpatient therapy for my eating disorder, but that’s a whole other story).

I might seem bad on the outside, but I feel connected to reality and like I’m part of the world around me—things that were unattainable just a few months ago.  I know better than anyone else how frustrating my lack of motor control is, but I also know it pails in comparison to what I experienced in the depths of PANS.

I’ve said it many times before, and I’ll say it again: recovery is never linear. There are all sorts of ups and downs and twists and turns. I could get discouraged that I continue having serious symptoms, or I can realize that having my personality back is the biggest and best leap forward that I could’ve asked for in my recovery.

It’s not about the symptoms for me.  It’s about coming alive again.

Attacked, Trapped, Tormented: My War with PANS & Anorexia

“Do I have to take my shoes off?”

I asked my psychiatrist in a trembling voice as I stared at the floor, too ashamed to make eye contact.

My hands were shaking as I reached for my shoestrings, because I already knew the answer, and I knew what would happen the moment my doctor saw the double-digit number on the scale… Continue reading “Attacked, Trapped, Tormented: My War with PANS & Anorexia”

I Wasn’t “Sick Enough” to Have Lyme. Then 2017 Exposed a Shocking Truth…

I’ll never forget the day I first set foot in a Lyme clinic, as I watched other patients with pale, exhausted faces roll into the waiting room in wheelchairs. I’d just finished another semester of college and a ten-mile run that weekend.  I remember thinking, I can’t possibly be sick enough to have Lyme Disease.  What am I doing here?

Continue reading “I Wasn’t “Sick Enough” to Have Lyme. Then 2017 Exposed a Shocking Truth…”