PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

I don’t know where I am or where I’m going in life anymore.

With my final semester of college on the horizon and an amazing summer internship behind me, it’s finally sinking in that it’s time to figure out what I’m doing with my life next. I’m pretty sure that anyone about to graduate from college is feeling anxious about transitioning into the “real world,” but for me, as someone recovering from PANS/Lyme, there’s a whole other layer of messiness.

Although a lot of my symptoms are minimal at this point, my depression is getting more and more out of control. It’s to the point where my psychiatrist is treating me as if I have Bipolar Disorder, though he won’t diagnose it since he thinks it might be caused by Lyme Disease. I have days where I feel like everything is wonderful, life is great, and I could do anything; I work very intensely for hours at a time and set impossible goals for myself, and when I tell people about it, they look at me like I’m nuts. Then, on other days, I sleep as long as possible, sit alone in my room all day, and can’t stop crying for no reason.

Most of the time, however, I don’t really feel anything. I’m not exactly unhappy, but nothing interests or excites me anymore. I somehow managed to do really well at my job this summer, but even though it was something I’ve dreamed about for half my life, and I was grateful to be there and did enjoy many aspects of it, so many days, all I wanted was to go home and do nothing.

Fundamentally, I’m a very driven, goal-oriented person, so this isn’t a matter of laziness. There’s still a part of me (the real me) that desperately wants to do what I thought I’ve wanted for years, but when it comes time to actually do anything, I’m miserable. To add insult to injury, I have everything in line to start a good career—the skills, the connections, the determination, and even a job interview—but some days, simply getting through the next hour feels impossible. So how will I ever do much of anything with my life? Sometimes I feel like it’s such a waste that I’m good at what I do, since I’m afraid I’ll never be able to have a career at all.

I’ve been asking myself if maybe I need to change careers and do something completely different, but when I really think into the matter, I realize that there’s nothing else that seems better. Even more confusing, when I have my manic/hypo-manic days, I find that my career dreams haven’t changed. But I also wonder if perhaps I’m just burned out—perhaps I need some time away from school and work, and then I’ll rekindle my passions.

However, there is still one thing that somewhat remotely interests me on almost any day, and that’s the idea of finally writing the PANS memoir I’ve contemplated for years—though it was difficult to even make myself write this post (hence my lack of updates for the past month). Some people have told me that it would be one of the most meaningful things I could do, so maybe they’re right. Maybe I’ll take a year off from everything and finally get the story out, and then I’ll know what to do after that.

But for now, as the start of the semester and the end of my time in college draws nearer, I have no idea what I’m doing in life anymore. Yet I do know this: I need to hurry up and get better, because eleven years of PANS, Lyme, and depression is long enough.

I still can’t believe I went so far from home for this internship…

A few weeks ago, I took a huge leap of faith, packed up my bags, and got on a plane to the big city. As the skyline came into view, the realization of what I was doing for the next two months hit me a hundred times harder than the impact of touching down on the runway. I was about to start a prestigious internship, living in a part of the country where I’d never been and working with people whom I’d never met. What had I gotten myself into?

I’ve been doing so much better over the last couple of months or so, but I’ve noticed that there have been some small things that continue to creep in and make me feel “different” from everyone else. These minor symptoms become major anxieties because I’m still holding my breath and not seeing my health for what it is—that I’m 95% better and no one would ever know the hell I’ve been through without me telling them.

For example, I have small involuntary movements which, even in my best times of remission, have never completely gone away for more than a few days at a time. I always wonder, does everyone notice the twitches? Do people think there’s something wrong with me?

And of course, there are the food issues. There haven’t always been many “safe” foods available here, so I’m pretty sure some colleagues have noted that I seem to eat very little yet run a whole lot. (No one knows how I binge in secret, which means no weight loss.) Have people figured out I have an eating disorder? Do they think I’m vain for obsessing about food and exercise so much?

Perhaps most telling of all is that I have a mild form of “face blindness,” or prosopagnosia. Some people are born with the condition, but for everyone else, it’s caused by a brain injury—or in my case, PANS. Prosopagnosia means I have a terrible time recognizing faces, so I often get people mixed up and sometimes don’t know who people are. I rely on hairstyles, voices, and body shapes, instead of faces themselves, to tell strangers apart. Still, I’ve managed to embarrass myself a couple of times by mixing up similar-looking coworkers. Do people think I’m really inattentive—or worse, that I’m some kind of freak?

Although face blindness, involuntary movements, and food rituals certainly have a negative impact on life still, I feel like the main way that PANS affects me now is what it’s done to my confidence. I used to not care what people thought of me, but for the last three years, I’ve worried that people can sense that I’m “different” and cannot see past my symptoms to find who I really am.

When PANS was at its worst, the plethora of symptoms affected every part of my life and made me feel like nothing more than a heap of crippling psychiatric and neurological problems. With the way PANS literally steals yourself from you and takes over your mind and body, each moment can be your worst nightmare. So after living this awful dream day after day after day, for multiple years, it’s hard to open my eyes and realize that I’ve finally awoken—and even harder to not worry that the nightmare will recur.

Even though I’m more or less well now, I’m still afraid of seeming crazy, of saying nonsense, of spacing out in the middle of giving a presentation, of having uncontrollable tics, of not being able to understand what I read, and of being underestimated because of my illness; I worry about concealing imperceptible symptoms and symptoms that are no longer here, because my anxiety doesn’t know that I’m okay now.

Nevertheless, when I asked one of my new friends if she’d noticed any of my symptoms, she told me I seemed like the healthiest person in the group—that I’m “glowing” with health. Truth be told, I’m actually performing extremely well at my job, and I have a large group of friends who apparently like me a lot. Even if anyone does think I’m “different,” it hasn’t stopped them from befriending me and respecting my work.

I may still have some symptoms, but they’re not preventing me from doing anything that I want to be doing, so how can I complain? Maybe someday soon, if I stay well long enough, I’ll be able to exhale and see for myself that I’m really as well as I am.

Celebrating 3 years of blogging and the beginning of the end of my battle?

Three years ago today, I published my first post on this blog.

At the time, I was in a downwards spiral, falling apart and losing my mind. My doctors were baffled and running out of treatment options, and I was threatening to take my life. But then, my family figured out I had PANDAS/PANS. Thus began a three-year fight to regain everything my illness had so suddenly stolen from me.

Back then, it seemed I was the only 19-year-old on the planet who was fighting for their life against this allegedly pediatric condition, PANDAS/PANS. There were no blogs written by patients—only parents. I wanted to read from someone writing about going through what I was going through; I wanted someone to show and tell me that I would be okay. Since I could find no such blogs at the time, I figured I might as well be the person to change that so that something good might come from my ordeal one day.

Today, in 2017, I can say it’s been quite a journey, but I almost dare believe I’m now 95-99% recovered. I’ve been through three high-dose IVIG treatments as well as eight low-dose IVIG infusions. I’ve endured tonsil/adenoidectomy, over a year of steroids, month after month of antibiotics, and countless therapy sessions. Although I still take medications and follow a Lyme disease antibiotic protocol, today, I’m able to live my life, and I’ve managed to accomplish things I never would’ve dared to dream when I started this blog.

So I wanted to take a moment to thank all of you for reading The Dreaming PANDA and for offering your encouragement and prayers over the last three years. I’ve probably never met any of you, but your support has meant the world to me. Thank you for taking the time to read what I write, and sometimes, to reach out to me. It can be lonely to deal with a life-altering disease, but this community has kept me going—and I sincerely hope my writing has helped you in some way, too.

I’m not quite ready to stop this blog just yet—in fact, I’m not sure if or when I ever will, since I have more readers than I ever thought I would when I first started. I don’t ever want to stop raising awareness, and I have every intention of continuing to bring hope to those of us who’ve been affected by PANS and Lyme.

For this reason, I’m planning to write a memoir in the near future, and I intend to post excerpts along the way. With any luck, however, I’m now living in the final chapter of my recovery journey.

I know a lot of you are probably out there wondering if you or your kid will ever get better and live a productive life—just as I wondered when I began writing three years ago. You might feel hopeless and think that no one can get past this. It’s often been an impossibly hard journey, but you know what? Yes, I’m okay now. And you can get there, too.

What happens when you’re diagnosed with narcolepsy, and every treatment fails?

Three years ago, I wanted nothing more than to be awake.

After a sore throat on my first day of college, I’d become increasingly incapacitated with sleepiness that nothing could relieve. I spent the majority of freshman year asleep, existing in a dream-like state where I never seemed to attain full consciousness. I hoped for a solution to my problem that worked as quickly as it had begun, but nothing prepared me for what my sleep neurologist said instead, on that fateful May afternoon:

“You have narcolepsy.”

My whole world shattered.

Narcolepsy is a serious autoimmune disorder in which the body destroys the brain chemical hypocretin—the neuropeptide responsible for regulating wakefulness. There is no cure.

Normally, there’s a clear line between the sleep and wakefulness cycles, but in narcolepsy, it’s as if they’re blurred together.  People can experience sleep paralysis with strong emotions while awake, known as cataplexy, and carry out routine activities while asleep (automatic behaviors). They may see terrifying hallucinations while waking up or falling asleep, and they might wake up and not be able to move. Worst of all, you can’t stay awake during the day (though you might not be able to sleep at night). Untreated, it’s utterly debilitating.

I would have narcolepsy for the rest of my life, my doctor explained, but with medication, it shouldn’t stop me from living.

On the surface, I fit the bill for narcolepsy perfectly. I had daytime sleepiness so severe that I could fall asleep standing up, in the middle of a conversation, or after sitting down for five minutes, regardless of how much I slept at night. I had the cataplexy; whenever I laughed hard, my knees buckled in a paralysis attack. I had the hallucinations and the automatic behavior. And I had Periodic Limb Movement Disorder—my legs would move hundreds of times while I slept, resulting in awakening over two-hundred times during my overnight sleep study; people with narcolepsy often have PLMD.

But there was one problem with the diagnosis: my sleep studies didn’t look like narcolepsy.  In my daytime sleep study called the Multiple Sleep Latency Test, where I took five twenty-minute naps over the course of the day, I never once entered REM sleep—and entering REM in at least two naps characterizes a narcolepsy diagnosis. So I was a “narcoleptic…” Who didn’t really have narcolepsy.

My neurologist wasn’t confident in my diagnosis, so he sent me away from the appointment with medicines to treat the PLMD, just in case it was the sole cause for my extreme sleepiness. If the medicines worked, I didn’t have narcolepsy. But the medications I tried—Neurontin, Neupro, and Requip—didn’t make me any less sleepy, and instead, I deteriorated further. Requip even landed me in the ER, with violent involuntary movements, and I lost the ability to walk.

So apparently I did have narcolepsy—and now a movement disorder and increasingly severe psychiatric problems that five other neurologists couldn’t explain or relieve.

After the Requip nightmare, I started a $5000 narcolepsy medication called Xyrem, but it too failed miserably at controlling my symptoms; before long, I reached the brink of insanity as I fell into delirium, became terrified of vomiting, and stopped eating.

“We’re so sorry, but we don’t know how to help you.”

My doctors were running out of treatment options… Or so they thought.

In a last-ditch effort to save me, my parents begged for a five-day steroid burst. If it worked, then perhaps I had that “controversial” autoimmune disorder called PANDAS/PANS.

And then I woke up.

After three days of Prednisone, I was in my right mind and awake without stimulants for the first time in months. Even after the burst ended, my “narcolepsy” was still gone. The transformation was so shocking and dramatic that my formerly PANS-skeptic doctors became PANS advocates.

A couple weeks later, a specialist confirmed my PANS diagnosis, and I received IVIG to more permanently stop my symptoms. A case of mono and a Strep infection had tricked my immune system into attacking my brain, which manifested as sleep issues and psychiatric/cognitive problems.  Although the sleepiness returned to a more mild extent two months post-IVIG, it never reached the severity of before, and after a second IVIG, it disappeared for good.

Today, three years after my narcolepsy diagnosis, though I’m still fighting PANS to a far milder extent (and now Lyme), I live a fulfilling life.  So I can’t help but think, what if I’d never found out I had PANS? If PANS hadn’t killed me through starvation or suicide, then it would’ve been a living death sentence to survive with treatment-resistant “narcolepsy” and PANS’ other torturous, disabling symptoms.

10% of those diagnosed with narcolepsy have normal levels of the brain chemical hypocretin, meaning the cause of their symptoms isn’t understood. And doctors still don’t know the cause of narcolepsy’s cousin, idiopathic hypersomnia. How many other people are out there diagnosed with hypersomnia, narcolepsy, or PLMD who, like me, actually have PANDAS/PANS?

Until more patients and doctors are aware of PANS, we’ll never know. Although I’m no longer the “Dreaming” Panda in the same sense as when I came up with the blog name in 2014, now I dream of the day when no one has to endure what I did to awaken from their nightmare. I hope people will share my story, and their stories, with the world, to turn this dream into reality.

PANS can mean losing your very self… And then trying to get it back in recovery.

The other day, while filling out forms for an appointment, I froze, as I came upon the medical history section. How could I even begin to explain it all? Moreover, how could I fit everything on two little lines?

I somehow managed to list all three of my psychiatric medications, along with the five antibiotics I rotate in my Lyme protocol. Hesitantly, I also listed Lyme disease as a current medical condition, mostly to explain the many antibiotics. But then I paused… Do I really need to list PANS, too?

You see, in all three of the major PANS exacerbations I’ve had in the last ten years, I’ve not only dealt with crippling OCD, anxiety, depression, cognitive problems, and movement disorders, but I’ve lost my very self; I’ve felt and acted like a different person that no one recognized. Contrarily, I’ve recently started to feel like my “normal” self. Does that mean I’m better now?

During my worst times, it was like an invisible wall had shut me inside my own tormented mind. I was trapped within my own thoughts, yet completely outside myself. I saw the world, but I wasn’t part of it. Life had lost its colors, and my days ran together in a blurry mass of the black and white of OCD, and the gray of depression. My body was alive, but the person I had been was gone.

While each episode could start overnight and suddenly take me away, coming back to life post-IVIG has always been such a long and slow process that I’ve never been able to pinpoint an exact time when I’ve returned; I slowly regain myself and watch symptoms die away at a glacial pace, and it eventually occurs to me that I’m fully present again.

By now, it’s been over a year since I caught Lyme disease and suffered my third major PANS episode, ten months since the high-dose IVIG that was meant to bring me back, and five months since I began Lyme treatment. And recently, I realized that I was finally myself again. So can I legitimately say I have PANS anymore? For that matter, do I really have Lyme?

I know too many people with PANS who are home-bound, yet here I am, driving around town and trying to meet new people just for fun. I know some with Lyme who can’t get out of bed, but I just ran my second half-marathon (albeit five days after an 103º fever herx). I know kids who would love to be able to go to school but cannot because they are too cognitively impaired from their illness—and then there’s me, with eight semesters of college completed and a 3.94 GPA. I know PANS and Lyme kids who literally want to die and can’t even bear to think about tomorrow, but I’m sitting here looking forward to a summer internship. How can I be sick?

Unfortunately, just because I’m “back” and appearing to function quite well doesn’t mean I’m better—far from it. My anxiety has gotten so bad that I’m now taking the anti-psychotic Seroquel each night to help make it manageable. Plus, I remain on Lamictal and Wellbutrin for other psychiatric symptoms. Most days, I continue to have a hard time walking, and I have so many (small) involuntary movements that I physically cannot be still. Oh, and quite often, my speech comes out nonsensical.

There was a time when I was that kid who wanted to die and couldn’t even manage to go outside—indeed, my severe anorexia meant I was slowly dying last summer. Now, I’m the walking wounded; I still get around and can put up a good fight, but I’m not completely okay, either. I have myself again, but I also have plenty of symptoms.

And so, I added “PANS/Autoimmune Encephalitis” right along with “Lyme Disease” on that form the other day. I’m so grateful to have returned to myself, but I’m seeing that healing a brain and an immune system is a long and arduous process (and there’s always the possibility of a flare or relapse). I await the day when my symptoms are finally gone.  So despite my apparently high level of functioning, yes, I really do still have PANS and Lyme—even though I also have myself again.

I pretty much take an entire pharmacy every day

 

On Thursday morning, I woke up and immediately knew something was very wrong. My whole body ached. I had an awful headache. I was dizzy. I was too nauseous to even think about food or water. It was that familiar set of symptoms that meant one thing: I was in for a terrible Lyme herx.

The last two weeks of symptoms flashed in my mind… The severe anxiety that gave me a panic attack over leaving the house. The lack of concentration and mental energy that meant falling behind in school. The incessant partial seizures that made me nervous every time I stood up to walk. I hadn’t even been in such bad shape when I started being treated for Lyme in December.

What are these doctors doing to me? Why am I putting up with this? I realized that morning that my treatments were only making me sicker.

As I eventually got to the kitchen, I sat there and stared down my antibiotics—the perpetrators of these all-too-frequent Herxheimer reactions that seem to be slowly ruining my life.

I can’t do this anymore…

I stopped my Lyme protocol for several days, because the thought of getting any worse than I already was seemed unbearable. Last semester, my quality of life, even if I still had PANS flares, had been much better. I’ve missed so many days of class this semester, thanks to herxes that leave me too weak and sick to get out of bed. I thought if I took a break from my protocol, maybe life could go back to how it was before.

But unfortunately, my strong reactions to the treatments show that they’re killing off a lot of bacteria—in other words, my misery is proof that I need to keep going.  And last summer, Lyme disease attacked my heart and nervous system, and there are still spirochetes in my brain—who knows what they could do to me over time?

I can’t quit. Whether I like it or not, this disease is trying to take my life, and if I want to live, I have to fight back.

After a couple of days of lying around the house and feeling terrible from the herx, plus a lot of kicking and screaming, I finally accepted this battle I’ve been given. I shed more than a few tears, finally realizing that I may have another year or more of Lyme treatment before I’m cured. I felt anger and rage that I’m spending my twenties in a health crisis—after already having PANS for a decade. But I’m channeling that anger into a will to fight to get better.

I almost quit treatment because I was tired of feeling worse. I kept going because I wanted to live.

Can someone with PANS/Lyme keep up in a competitive environment?

A couple weeks ago, I was elated to find out that I’d been accepted for a summer internship!  This wasn’t just any job offer, but a highly competitive internship that I’ve worked towards and dreamed about for years. It seemed so surreal that this door had finally opened!

Unfortunately, I quickly came crashing back into reality when I remembered how ill I’ve been lately. At the moment, my anxiety is so out-of-hand that it’s not clear how I’ll finish the semester, because I can hardly even start my assignments.  On top of this, I can barely walk without a mini-seizure causing my legs to collapse, and I’m having a difficult time speaking coherently.  If I’m this dysfunctional right now, how can I possibly hold down a job in a few more weeks?

I have had some really good days lately, too, but even then, I still live with a sense that my illness is following me like the bogie man, ready to jump out and attack at any moment. To me, one of the cruelest aspects of PANS is its unpredictability. Just as I think I’m healthy and in the clear, suddenly, it can overtake me again. I live on egg shells because I never know when PANS will strike next. I fear that I’m always one cold or infection or exposure to Strep away from the brink of insanity.

Even if I improve in the next few weeks, how can I do an internship this summer if I might lose myself any day, without warning?

Nevertheless, after ten years of PANS, I’m a race horse kicking at the gates; for too long, this illness has kept me locked up as I’ve watched everyone else take off without me. Now, this internship is my chance to tear through the doors and speed down the track. I have a life to live, and I’m not about to let PANS stop me.

So I accepted the offer.

At this point, I’m more terrified than excited, but you know what? I refuse to not try just because of the bad things that might happen. I know I may have to pace myself and guard my health more than the other interns. Even so, because I’ve become accustomed to the uncertainty of never knowing how long my symptoms will be in remission, I work very hard on every day that I’m able—apparently with higher-quality results than many other healthy people. If I’m well this summer, then I believe I will not only get through the job, but I will pass everything with flying colors.

I’ve long come to terms with the inevitable uncertainty of my condition, and day-by-day, I’ve been working through the difficulties and moving towards recovery—albeit much slower than I’d like at times. But now, I’m determined to keep working through PANS this summer, as this internship leads me toward my dreams.

I Am Not an Illness

Sometimes, I don’t know who I am anymore

It was 5:00 in the morning, the day’s homework wasn’t finished, and a test that I would surely fail loomed over me. My kitchen counter-top was covered in crumbs and empty wrappers, and I’d been spinning on my stationary bike for the last three hours. My laptop was opened to my class notes, but I had a major food hangover from the 4000 calories I’d consumed just hours before. Studying was near impossible.

As I realized I’d spent the whole night exercising and making calorie calculations rather than actually doing anything productive, I asked myself… What has become of my life?

At one point, I stopped biking and took my computer to the living room for a break for my exhausted body and mind. When I opened my Instagram, there, staring back at me, was a picture from a couple days before, in which I was beaming and glowing in a crisp dress following a successful presentation I’d given at school.

Seeing this happy person cut straight to my heart. How could I possibly have transformed into a binging monster less than 48 hours later? Why couldn’t I stop eating and just hold myself together? If only people knew who I really was—the girl that has Lyme disease as well as an eating disorder that’s spiraling farther and farther out of control—the younger students would no longer look up to me, and my professors would lose their respect for all I’d done.

But then, it hit me: that pretty, intelligent woman plastered to my profile page… That was the real me—not the girl who stuffs her face with junkiest binge food she can find into the wee hours of the morning, despite already feeling like her stomach might explode. Nor am I the girl that screams about wanting to die because of the psychological torment that an inflamed brain brings about.

Over the last ten years of PANS, I’ve so often felt like a person I don’t recognize. Sometimes, I’ve forgotten who I am, because it seems like I’m nothing more than an illness that’s taken over my mind and life. But I am not Lyme disease or PANS or an eating disorder… I am me.

In my worst times, I do my best to not think about who the real me might be, and I try to forget what life is like when I’m well—it seems too painful to realize everything that my illness can rob when it takes control. Yet this week, I’ve started to think that maybe, just maybe, it’s important to hold onto the memories of the better times, because they’re reminders that I am more than an illness or a set of debilitating psychiatric problems.

I don’t believe that PANS can ruin who we are—it can only obscure it. Beneath the brain inflammation and the torturous symptoms, there is still a soul and a personality that is waiting to resurface once healing comes. I may have PANS, but PANS doesn’t have me.

As I closed my computer, gathered up my notes, and packed up my backpack later that morning, for the first time in a long time, I felt hope that there will be a time when I can feel like the person in my Instagram photo every day—the woman that everyone else sees from the outside. Someday, PANS will hide me no more.

Why I Quit Therapy

Dissecting and discussing every meal isn’t helping

This week, I quit therapy.

Wait a minute… I was nearing hospitalization for anorexia just seven months ago, and my psychiatrist recently suggested intensive outpatient was reasonable, and now I’m not even addressing it at all?

Yes, that’s right… Sort of.

So am I giving up on recovery? Did I suddenly get better? Well, no. I’ve just had enough of therapy.

I’m sick of writing down every bite I put into my mouth. I’m sick of dissecting and talking about every meal. I’m sick of being told to eat more or to eat less. I’m sick of being told that my normal weight isn’t “healthy.” I’m sick of feeling brainwashed into accepting a body that I didn’t have before my disorder. I’m sick of everything being put under a microscope. I’m sick of wasting my time.

Dealing with Lyme and the other PANS symptoms is taxing enough, and recovering from an eating disorder takes total dedication. I’m simply trying to survive at this point, so something as demanding as intensive outpatient therapy is out of the question. As it is, getting myself to class for nine hours per week and doing the required work is hard enough. For that matter, I have days when I can barely get dressed. Do you really think I’m in any shape to drag myself to therapy for fifteen hours a week?

Now before you start telling me that recovery is the most important thing and that I need to put my health first, I want to say that I agree with that. In fact, I spent several months talking to a nutritionist and a therapist each week with regular check-ins with my psychiatrist, but truth be told, my eating is almost as disordered now as it was when I started (though in different ways). All those hours of therapy yielded few results.

I still count calories and restrict or binge, depending on the day (though I’m managing to maintain a consistent and healthy weight range). I still have rules about when and how I should eat. I still basically only eat soft foods/fruits (I think this is more of a sensory issue than an eating disorder fear, though). I still try to avoid restaurants like the plague, because I don’t know what they might be sneaking into my food. I don’t deny that I still need help, but the help I was getting wasn’t working.

I quit therapy because talking about food so much was only magnifying my obsessions. I quit because I’m healthy (or as healthy as someone can be with late-stage Lyme) and not in physical danger.  I quit because I simply don’t have the mental energy to try to break free from my rituals at the moment.

I’m not here to recommend others quit therapy—I know it helps a lot of people, and there were times when it seemed to help me. But for me right now, it was the right choice. I continue to hold out hope that, eventually, when my Lyme and PANS are under control, the thoughts and rituals will quiet down.  I’ve noticed that sometimes, when I’m not having PANS symptoms, the food obsessions are gone, too.  But if someday, I’m otherwise better and still have an eating disorder, I just might go back to therapy.

tired-panda-small

When people ask how I’m doing these days, I never know how to answer, so I just say to everyone:

“I’m tired.”

But this isn’t a tired that can be relieved with a good night’s sleep, a break from school, or a hot cup of coffee—this is a tired that penetrates my very soul. It’s a tired that makes simple tasks take untold mental effort. It’s a tired that makes me uninterested in anything more than surviving each hour ahead. It’s a tired that makes me wish people would stop asking about my post-college plans, because I don’t even know how I’ll get through today.  This is a tired that’s sucking the very life out of me.

It’s now been about two months since I began Lyme treatment, and I’ve been herxing every two weeks; just as I recover from one reaction, I start having another a few days later. Each herx not only makes me physically tired, but the roller-coaster of symptoms leaves me mentally exhausted as well. With the last two herxes, I’ve ended up worse than before once they’re over.

Now, after three herx reactions, I feel like my life is slipping away between my fingers, and there’s nothing I can do to stop it. I neither recognize myself nor the nightmare unfolding before my eyes.

Lately, I’ve felt totally out-of-control; one moment, I’m almost okay, and the next, I’m repeatedly telling my mom that I want to die. One moment, I’m able to struggle through homework (albeit slowly and with great difficulty), and the next, it’s as if someone has “wiped my brain;” I suddenly become confused, disoriented, and unable to say little more than choppy words and gibberish.

To make matters worse, my eating disorder is so severe now that my psychiatrist thinks I should start intensive outpatient therapy. My mom has moved in with me, because I can no longer take care of myself. I usually can’t go to work, and I’ve had to drop some classes that I was really enjoying. But truly the worst of all of this is that I’m so depressed that I’m sometimes mad at God in the mornings simply because He let me wake up again.

I’m tired of watching myself fade away. I’m tired of getting better only to get worse later. I’m tired of PANS. I’m tired of Lyme. I’m tired of endless treatments and trips to the doctor. I’m tired of watching life go by while I stand still. Sometimes, I’m simply tired of living at all. How much longer can I keep doing this?

But you know what? The runner in me still knows that being tired doesn’t mean you have to give up. No, “tired” is a challenge and a dare to keep moving forward despite your body screaming at you to quit. Some of my best runs have been those when I was sure I couldn’t take another stride, and yet I went on for several more miles, running faster than I thought was possible.

I may be tired, but with God, I’m stronger than I’d ever dare to believe. I don’t know how many more miles I have to run like this, but one thing’s for sure: I will keep pushing forward, even if it means crawling across the finish line of this disease, tired, exhausted and gasping for breath.

Being symptom-free was like waking up from a ten-year slumber

Being symptom-free was like waking up from a ten-year slumber

Last week, as I climbed into bed and turned out the lights, I experienced something very strange: I realized I was looking forward to my tomorrow. In that moment, it struck me that after ten years of PANS, I couldn’t recall the last time I was truly excited about waking up for another day.

It’s not that I haven’t looked forward to anything in life for all these years—there have been plenty of better times when I’ve been excited about a particular event or a single aspect of a day. But rarely, if ever, have I looked forward to simply living.

Much of the time, I don’t live, so much as I merely survive. I’ve achieved great things in spite of my illness, but my victories are always shrouded in a cloud of depression and anxieties—I may do “normal” things, but no one knows how many obstacles I face in the process. In good times, PANS trails behind me like a shadow, reminding me that any day, it could come back and envelop me—which causes an unconscious sense of dread for each day to come.

But for a few days last week, that shadow was gone. While I still had a few tics here and there (and ongoing food challenges), I otherwise didn’t notice my symptoms at all. I had a mental clarity that I hadn’t experienced in at least a decade—no more depression, no more anxiety, no more ADHD, no more cognitive problems, no more brain fog—just clear thinking and happiness. It felt like waking up from a ten-year slumber.

Amazingly, it just so happens that this week marks the six-month anniversary of my third high-dose IVIG. I’ve always been told that it’s usually 4-6 months (and sometimes up to a year) before the full effects of IVIG kick in, so it seems that I’m right on target.

Unfortunately, the “awakening” I experienced a few days ago didn’t last: I’ve since had another herx reaction from my Lyme treatments, which has brought back the brain fog and depression, along with feeling like I have a bad case of the flu. It’s terribly painful to have had a taste of normalcy and good health, only to be dragged back into the mud of PANS and Lyme.

Nevertheless, I’m trying to look on the bright side and realize that herxing, by definition, means the Lyme bacteria are dying, and I’m getting better. Moreover, having experienced this latest bout of remission—the first time I’ve looked forward to life in a decade—gives me great hope for the future.  If I can have five days of remission like that, then why should I not believe I can someday be that healthy all the time?

Now I look forward to tomorrow because I have reason to believe and hope that I’m on my way towards forever beating PANS and Lyme.

Ever since I announced my Lyme diagnosis, I’ve been inundated with questions from readers. While I’m not qualified to give anyone medical advice, I’ll gladly share my own personal experiences.  Given the number of messages I’ve received, I figured I should answer the most common questions in a post for all of you, so here you go:

What tests did you do?
Igenex Labs. Insurance may or may not cover these Lyme tests, but the standard CDC Lyme tests are highly inaccurate and very often give a false negative when a person actually does have Lyme. Even Igenex can give a false negative, but it misses fewer cases.

If you do get a positive Igenex result (like I did), it can make diagnosis easier.  Nevertheless, Lyme Disease is still considered a clinical diagnosis, so Lyme specialists won’t rely on tests alone to diagnose you—they’ll also consider symptoms and history.

Who ordered the tests?
In addition to my PANS specialist, I have a local GP who is easier to get in contact with, so my parents and I asked her to order Igenex. Although she doesn’t know a whole lot about Lyme or PANS, she’s been very open-minded and willing to try anything reasonable that might help me.  Basically, it was our idea, and she agreed to do it.

Why did you think to test for Lyme?
My PANS doctor told me a year and-a-half ago that it would be extremely unlikely for me to relapse ever again or to need more treatment. But guess what happened this spring? Arguably, this latest PANS exacerbation was my worst ever, which was totally unexpected at age 21, given that it’s supposed to be a pediatric condition.

We all knew this meant some major trigger must have been at work, and given how much time I spend outdoors, a tick-borne illness seemed reasonable.  Although I’d improved since my IVIG in the summer, it felt like there was a missing piece in the puzzle.  I’d heard from many readers that Lyme is common in people with PANS, so my team thought it was time to rule it in or out for sure.

Did you have a tick bite or the Lyme bull’s-eye rash? Do you remember getting sick?
Growing up playing in the woods, tick bites were a given, but I don’t remember having any over the last few years, and I never had a rash. But apparently, only about 50% of Lyme patients get the rash.  However, in the spring, I had a flu-like illness, and I was bedridden for days. Mentally and physically, I never fully recovered. Then, I had heart and nervous system issues (including POTS) that I’d never had before, followed by a descent into a horrific flare of PANS symptoms. It wasn’t the flu—it was Lyme.

Should I get tested for Lyme?
I’m not a doctor and don’t know your history, but if you’re not able to get all the way better with only PANS treatments, please talk to your doctor about Lyme.  Better yet, look into Lyme disease before you go way down the rabbit hole of autoimmune treatments.  While not everyone with PANDAS/PANS has Lyme, it’s still very common in people with PANDAS/PANS, along with its co-infections (Babesia, Bartonella, TBRF, Ehrlichea, etc). The sooner you get treatment for these infections, the better.

My Lyme specialist believes I’ve had Lyme for a decade (though I remain skeptical of this). I can’t help but wonder what my life would’ve been if I were properly tested ten years ago. Don’t make my mistake.

What are your treatments?
I take two antibiotics and seven different supplements/vitamins each day. I also follow a gluten/grain-free diet (almost Paleo) and detox with Burbur and Pinella. And of course, I still take a couple psychiatric drugs (Wellbutrin and Lamictal) to manage my symptoms in the meantime. Everyone’s treatment regimen is unique, though, so don’t be surprised if yours is quite different from mine!

What’s the prognosis?
Every person responds to Lyme disease and its treatments differently. Some people take weeks to heal, others take months, and I’ve heard of some people taking years. For me, I’m expected to be in treatment for the next year and-a-half, and then I’ll just be monitored. The doctor says someday, I’ll get completely better, and with any luck, when my Lyme is gone, my PANS will be, too.  But for now, I’m just taking it one day at a time…

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I hope this answered all of your questions!  If not, feel free to ask more in the comment section below.

Please, please, please look into Lyme disease if you have any symptoms that never seem to go away or that come and go in cycles. PANS is treatable, but sometimes, it’s complicated by Lyme. Just keep searching and hoping, and don’t give up.

For more information about Lyme, be sure to check out: http://ilads.org

With PANS and Lyme, homework isn't the only thing making college so difficult.

With PANS/Lyme, homework is far from the only reason college is so difficult…

It was with a truckload of emotions that I pulled up to my apartment last Monday night, before my eighth semester of college. While being at school means seeing my friends again and keeping busy with interesting things, it also usually means grinding myself into pieces as I try to get all the required work done in the midst of PANS and Lyme. College isn’t easy for anyone, but trying to do it with these chronic illnesses can make it a hundred times worse.

I thought I was looking forward to being back, but as I began to unpack, I was overcome with dread and despair, and I had a meltdown. This wasn’t a PANDAS-triggered flare meltdown—this was the meltdown of someone who is simply beyond tired of having to function with a debilitating illness. Yes, it’s important to realize that not every emotional outburst from someone with PANS is caused by brain inflammation—we’re human just like everyone else.

Even though I made straight-A’s last semester and seemed totally together on the outside, honestly, I was a train wreck most of the time. I easily spent (and still spend) two or more hours a day on food-related rituals and obsessions. I restricted until I became too weak to walk to class without losing my breath. And then I binged a lot… And purged. (How I got to that point after not eating because I feared vomiting so much a couple years ago is beyond me.)

As if an eating disorder weren’t bad enough, I had one horrendous PANS flare that almost hospitalized me, and several others that left me unable to get any work done. Sometimes, it took me eight hours to get over my anxiety about starting an assignment, and then another four to complete it. I often slept only two hours and lived off caffeine.

If last semester were the only one that was so difficult, maybe I wouldn’t have been so upset about the idea of getting through another semester. But truth be told, most of my semesters have been almost as bad—and some worse…

Freshman year, I was at least halfway asleep most of the time, which resulted in a narcolepsy misdiagnosis (hence my being the “Dreaming” Panda). Sophomore year, I was often half-crazy, because I had terrible PANS flares every week or two, and in between them, I was barely living. Junior year, I was almost okay… Until I got Lyme disease and anorexia in the spring.

Would you want to be back at college if this was how it’d gone so far?

Yet as hard as college has been, I decided this week to gird my loins and do whatever it takes to finish—even though it means enrolling in 16 credits now so that I can graduate in December. The thought of staying beyond then is simply too much to handle.

Indeed, these first three days of school have been anything but easy so far. I have more homework than ever before, and more pressure to do well now that I’m a senior. And on the second day of class, I had a Herxheimer reaction that put me on the couch and shut me up inside my apartment all weekend—but thankfully, I was actually able to get some work done.

But you know what? Even though college with Lyme and PANS is difficult, I’m just glad that my Lyme treatments have made me well enough to be here trying at all. A month ago, my family and I were looking into residential care, so I consider it a gift to even be able to struggle through school again.

At the start of every semester, my parents have tried to encourage me by saying, “Maybe this semester will be better than the last one.” Much of the time, it hasn’t been, but my Lyme treatment is most definitely relieving my symptoms already. And so, this time, I’ll join in their optimism:

Maybe this semester will be better than all the other tough semesters…

2 antibiotics, 3 medications, and 6 supplements: my weapons of choice against Lyme disease

2 antibiotics, 3 other meds, and 8 supplements: my weapons of choice against Lyme

“It’s Lyme disease.”

They were three words that shattered all of my expectations for recovery from PANS… Three words that I still struggle to accept… Three words that are going to change my life…

The other week, I was officially diagnosed with Lyme and some co-infections (Babesia and Relapsing Fever, in my case) at a Lyme treatment center. Apparently, it’s Lyme and the co-infections that are continuing to provoke my immune system and cause me to flare and not quite get all the way better.

While it’s great to have more answers, I found out other things I didn’t want to know…

In addition to my usual brain inflammation, the Lyme doctor discovered that my nerves are inflamed, and my spleen is enlarged from working so hard to fight off the infections. Also, I’ve almost completely lost my patellar reflex—when they took the rubber hammer to my knees, nothing moved—potentially a sign of a serious problem.  The “shin splints” that I can’t seem to heal may be bone pain from the infections.  Most frightening of all, my knee-buckling attacks (which I’ve had for two years) may be atonic seizures.

After the trip to the Lyme specialist, I was reeling for days, which is why I haven’t been able to post until now. Physically, I haven’t felt like a sick person at all—I have none of the aches and pains that so many people with Lyme experience, so realizing I was indeed quite physically ill came as a shock to me.

Moreover, I’d been hoping to be done with PANS soon, but I’m now told I’ll most likely need Lyme treatment for at least another year. And if it really takes that long to clear the infections, I don’t think I can expect to be free from PANS until they’re gone, either, can I?

So what can I do? I’m beyond tired of fighting for my life, because I’ve had PANS for ten years (untreated for eight of them), and I’ve especially been fighting hard over the last few months because of this Lyme-triggered relapse. Plus, trying to conquer an eating disorder brought on by all of this has taken its toll on me. But now, they’ve told me that I must also fight against Lyme somehow? How many battles can one person fight at once?

But one evening this week, when I was feeling particularly depressed about my situation, I came across a Bible verse that really spoke to my battle fatigue:

“The Lord will fight for you; you need only to be still” (Exodus 14:14).

In reality, for now, “Fighting Lyme,” is nothing more than adding another antibiotic and a few more supplements and continuing to do my best to live a healthy life. To fight Lyme, I only have to be still and wait for these treatments to work. Fighting Lyme changes absolutely nothing about my day-to-day life—except that eventually, it will get better and easier when I beat it into submission.

Although it may seem like Lyme is a whole other terrifying monster to try to subdue, when I was done with my shock and denial, I realized that fighting Lyme isn’t actually much different from fighting PANS. “Being still” and waiting for treatments to work is exactly what I’ve been doing for PANS for the last two years, but now, I’ll be eliminating the infection that triggered this whole relapse in the first place. So really, the diagnosis is a good thing, because I have a more concrete plan for how to recover from both PANS and Lyme.

And so, readers, it looks like you’re going to get at least another year of posts out of me, thanks to this long Lyme treatment process. Two weeks in, I’ve already made leaps and bounds—I’m concentrating better and no longer have suicidal thoughts—so with any luck, 2017 will be the year that you and I all beat PANS and Lyme once and for all.

Thanks for all of your support, particularly through my 2016 relapse. Here’s to a better 2017!

The Puppy Is Alive!

Puppy

With another semester of college done, I can truly say I thrived under exceedingly difficult circumstances. Several months ago, I vowed to stop trying to live up to the expectations people had for me as a top student in my program, but instead, I ended up exceeding them with yet more awards and accolades—I got all A’s, again. Frankly, I’m not sure how I do it…

But unfortunately, instead of coming home and taking a victory lap, I staggered across the finish line of the semester and face-planted with a flare. The drive home was interrupted by my first panic attack in a year, and the moment my mom pulled into a gas station, I got out of the car and started yelling, bawling, threatening to run off, and ticking violently, surely appearing psychotic to everyone around us. Somehow, my mom eventually coaxed me back into the car, but I spent the rest of the trip completely tormented by thoughts that tried to tell me I wanted to die.

In typical PANS fashion, I’ve been falling hard and fast into a very dark place. The day I got home, I could do nothing but lie on the couch doing mindless activities on the computer to distract myself from the tormenting, looping thoughts. But at some point one evening, my concentration on an iPad game lapses, and the thoughts come rushing back.

My mom looks over and notices the tear trickling down my face. She knows what’s coming…

Indeed, I can’t hold it in any longer. I burst out into a rant about how fat I am, my latest 20-cookie binge, the shin splints keeping me from running, the torment in my brain, the dreams I’ll never achieve thanks to PANS, and the hopelessness of what seems like an endless cycle of relapse and recovery.

“I shouldn’t have come home. All I do is make you all unhappy!” I finally blurt out, upon seeing my mom join me in crying.

She tries to remind me of the joy I also bring and says her tears are because she can’t help but hurt for me. She tells me to imagine I had to watch a puppy being tortured, and that I’m that puppy to her. I mutter yet another suicidal remark before my dad interjects:

“It’s not any better if the puppy is dead.”

I know he’s right—I really do.  But sometimes, this makes me feel even more hopeless because I know I’m stuck living in a miserable condition for the time being.  However, some part of me deep down knows that permanent PANS is not my destiny, so that’s why I choose to keep enduring flares like this one and not give up.

“We’re going to see the Lyme doctor this week,” my mom reminds me, trying to give me a ray of hope that we’ll find something to get me better. But you know what? I’m sick of being a human guinea pig while doctors figure out how to treat a disease that, despite increasing research, is still poorly understood. I’m tired of enduring what sometimes feels like two years of medical experiments with no conclusive results.

But alas, this puppy is not dead. It may be tortured, but the torment will not kill it—not physically, not mentally. And historically speaking, whenever the pain comes, it soon ends with the right intervention.

Sometimes, when I’m in a place like this, I try to not think about my “real” self—the person I am when the tendrils of torment and despair are not constricting me. I don’t like to realize how many things I’m missing out on or to understand how much I’m no longer able to do. But truth be told, I somehow accomplished everything I wanted this semester, and I even ended up with more friends than ever before.  Life isn’t always as hard and painful as it is at the moment.

So it’s true: this puppy is still very much alive and fighting. And my successful semester proves that I’m determined to someday win the war with PANS.

I'm choosing recovery... One day and one meal at a time

I’m choosing recovery… One day and one meal at a time

Anorexia nervosa: two words that hold an unspeakable amount of pain and torment; an illness that takes over your mind and ravages your body; a disease that kills 5% of its victims; a nightmare that ruins your life; a condition that might happen to other people, but not to me… Until it did.

After more than ten years of living with PANS, I can still say I never know what it has in store for me next. Just when I was sure I’d beaten it into submission last semester, PANS came back and reared its ugly head primarily as anorexia. It started so suddenly—in a single day—when I developed a flu-like illness, and then I starved myself for four months, losing twenty pounds and everything that defined me as a person along the way. Just as I was about to end up in the hospital in August, IVIG treatment calmed my PANS enough for me to push past my food fears and begin to fight my way back to health.

In the beginning, I’d hoped that after my brain inflammation was more under control, I eventually wouldn’t have to deal with the anorexia thoughts anymore—that they would go away as suddenly as they came on. Perhaps this day will come, but so far, I’ve had to fight hard for every bit of freedom that I’ve since gained.

Although my brain has healed a lot since August, and most of my other PANS symptoms are nearly gone, dealing with the eating disorder has still been a beast. I don’t think I started out with a lot of body image issues, but I managed to pick them up at some point, so each time I’ve gotten my weight near its healthy range, I’ve freaked out and returned to restricting—and then gotten sick. As if that weren’t bad enough, when my treatment team is able to talk some sense into me after I lose weight, I just binge and purge the weight back on. So I’ve now been alternating between anorexic restriction and bulimic behaviors; I’ve been hovering around a healthy weight for months, though never staying anywhere for very long.

You see, even though I’ve earnestly been trying to recover since August, I’ve been afraid of what might happen if I completely let go and fully trusted my body to settle at its healthiest weight. I’ve been afraid of following my meal plan. I’ve been afraid of losing control. I’ve been afraid of feeling like a failure. I’ve been afraid of not being perfect. So I’ve only been partially recovered this whole time: no longer in imminent physical danger, but not yet mentally well.

However, a couple weeks ago, after yet another round of binges, I realized something… There was no way embracing healing could possible be any worse than the way I’d been living in partial recovery. If gaining weight made me miserable, then I might as well be miserable and getting better, as opposed to miserable and still stuck in disordered eating. So I decided that it was time to ignore my fears, start following my meal plan, and go all-in with recovery.

Since then, I can’t say it’s felt good to gain several more pounds, but I’m clinging to the hope that I’m heading for better times. I so often long to be as I was in the days before I became ill in April—when I was healthy, virtually symptom-free, seven pounds lighter, and without an eating disorder. I can’t change the past, but I believe that if I choose recovery, I can welcome a better future, free from PANS and Anorexia.

The PANDAS Games

Does anyone ever win the PANDAS Games?

Does anyone ever win the PANDAS Games?

During one of my many insomniac nights recently, I found myself watching the second Hunger Games movie, Catching Fire. While I knew this wouldn’t exactly soothe me to sleep, there was one quote in particular that’s haunted me continuously:

Haymitch: No one ever wins the Games… There are survivors. There are no winners.

Lately, I’ve been feeling like that about my fight with PANS and about my health in general, because I just got some troubling news: I tested positive for Babesia, exposure to Tickborne Relapsing Fever, and possibly Lyme Disease. Just when I thought I was back on track, I’ve now found out that I could still face a long road to healing.

And of course, all of this is on top of my ongoing challenges with PANS, anorexia, and an immune-deficiency. I’m back at a healthy weight at this point, but some days, I’m still so incredibly tormented by the anorexia thoughts that I’ve considered spending my winter break in residential treatment. And my Common Variable Immune Deficiency (CVID) means monthly low-dose IVIG treatments, which means I spend a day at an infusion center each month and then feel exhausted for almost a week afterward.

Some days, I don’t think it’s ever going to be possible for me to win the “PANDAS Games.” I know I’ll survive, but will there ever really be a time when I’m well without taking antibiotics and antidepressants, getting monthly infusions, and constantly worrying about avoiding Strep?

For those of you who don’t know the story of the The Hunger Games, in the second movie, the people who won the Games in the past were forced to compete in them yet again, after they’d been crowned as victors and promised a lifetime of security and riches. I’m no different from those people. I beat PANS a year ago and went on to live my life and do some pretty amazing things, but then it came back this summer, and I’ve been forced to compete in the PANDAS Games all over again. Can I really win this time around, too?

Fortunately, my doctor, who’s one of the leading experts in PANS, has told me since that first day when I limped into her office two years ago that I’ll get totally better someday and be able to put all of this behind me. She’s repeatedly said that, with proper treatment, no one has to be stuck with PANS forever.

I certainly have my moments of doubt, but it’s true that, even now, I’m well enough to be making straight-A’s in part-time college, holding a (very) part-time job, and socializing more than ever. Oh, and I just ran eight miles this weekend, while in July, my POTS basically made me pass out from just standing up. Even if it seems like it’s impossible to win these games, the fact is that I’m well on my way to being crowned a victor, yet again.

Haymitch might have been right about the Hunger Games, but he’s wrong about The PANDAS Games: someday, somehow, I’m going to be a winner for good.

How PANS Really Feels

PANS is an explosion inside my brain

PANS is an explosion inside my brain

“Mom, I want to die!” I burst into the living room screaming, a look of sheer terror in my eyes.

“Please… Help me!” I plead as I crumple into a heap on the sofa, wailing and yelling at the top of my lungs.

I’m being tortured—a sinus infection is causing my immune system to attack my brain, triggering sudden and severe mental illness. This is just another evening in the life of someone with PANS/PANDAS who’s having a flare…

The only way to describe the torment I feel in these moments of a severe flare is that it’s like someone has jabbed a knife into my brain, but the pain is mental instead of physical. It’s like fingernails scraping against a chalkboard, and the chalkboard is my soul being whittled away. It’s like a bomb going off inside my mind, scattering my thoughts and setting my brain on fire. I’m no longer present, but I’m aware enough to not be spared the grief of losing myself. It’s mental agony so intense that, in those hours, I’d rather die than continue to endure it indefinitely.

Shockingly, just a few days before, I wasn’t unlike any other college senior—I was happy, full of life, a bit stressed from midterms, yet looking forward to all that was in store for me. Killing myself was not something on my agenda. But then, I caught a cold, and I soon noticed myself becoming forgetful and struggling to think clearly. A few days later, I started refusing food out of fear (not from a lack of appetite). Then, I suddenly began hearing looping thoughts telling me that I wanted—and needed—to die. The most basic tasks were impossible—simply putting my shoes on was mentally overwhelming. I didn’t care about anything and was completely disengaged with life.  Every few hours, I’d suddenly become gripped with a wave of terror for no reason, and I’d start crying uncontrollably because of the severity of the mental pain.

Within a week’s time, I’d lost my mind.

My parents had come to stay with me for fall break, believing they would bring me home for the rest of the semester. The usual high-dose steroid regimen I take for flares had failed miserably—even a high-dose Solumedrol IV drip did nothing. However, one night, in a last-ditch effort to rescue me from the brink of insanity, we pulled out what was left of an old Azithromycin prescription, and I started taking it (with my doctors’ approval). Sometimes, if steroids don’t help PANS symptoms, it’s a good indication there’s an unresolved infection. I was already on penicillin, but plenty of bacteria can’t be killed by it.

With three days of Azithromycin, I felt no change—though my parents claimed I was starting to look a little less tormented. And then, one day, I started doing homework. Then I ate real meals. Before long, I felt engaged with the world again. By the fifth day, it was as if the whole incident had never happened; I was 100% back to where I was before.

People often ask me what it’s like to have PANS—to survive the mental anguish of flares and then in the good times, to live with the knowledge that it could all recur any day. But the truth is that, to me, there’s nothing like losing, and subsequently, finding your mind again to make you appreciate the goodness of all the little things in life that so many of us take for granted. When I have a bad flare like this one, PANS makes me want to die, because it turns my brain against me. On all the other days, PANS makes me want to live as fully as possible, because I know tomorrow is so uncertain, and I want to enjoy all the good things in my life while I can.

Living with PANS has never been easy—in fact, it often feels impossible, but now that this flare is over, I’m grateful to be alive and well and back in class, and I’m grateful for Azithromycin.  And of course, I’m grateful for parents and doctors who don’t give up on helping me live even when my brain tricks me into wishing that they would.

Recovery Is Possible!

Sometimes just when you think it's hopeless, you get better!

Sometimes just when you think it’s hopeless, you get better!

Okay, I’m keeping it shorter this week, because I’m doing so well that I’ve been extremely busy! As I’ve said in the past, the better I’m doing, the less I tend to post and tweet, because I’m away from the blog living my life.

Anyway, I just wanted to give some hope to those of you out there waiting for your PANS treatments to work, wondering when or if they’ll ever kick in. Everyone’s path is different, but yes, recovery from PANS is possible.

Six weeks after my third high-dose IVIG, there’s no comparing where I am now to where I was in July. I mean, I was a ghost in my own life at that point—I went through my days incapable of doing much of anything. Nothing interested me, and everything was too overwhelming. I’d lost so much weight from restricting my food that I was about to end up in the hospital. My POTS was to the point that I could almost pass out simply from standing up. Sometimes, I started hyperventilating for no apparent reason. I often said nonsense because I couldn’t remember words when I spoke.

Suffice it to say that life was beyond crappy at that point—so much so that I’d lost the ability to understand how ill I was.

But where am I today? Well, I’m living on my own, doing college part-time, working part-time, and getting back my life. I’ve regained all the weight I lost, and now I’m strong enough to exercise again—I even ran five miles last weekend! If I have POTS now, I can’t tell. I’m doing so well in every way that I’ve been socializing more than ever before, and I’m sort of seeing someone… Sort of.

Yet as great as all of this is, I’m definitely not out of the woods yet. I still struggle with some executive functions like concentration and planning, and it’s still very much a fight to not let the anorexia thoughts control me. Plus, my handwriting may be the worst ever; unless I write extremely slowly and focus intently, I often can’t write a single word without omitting or reversing letters—and then I don’t know how to fix the spelling. As for my POTS, I continue to drink four liters of water every day and take in at least 5000 mg of sodium, so for all I know, I’d get symptoms again if I reverted to “normal” hydration and salt intake.

Nevertheless, although this IVIG hasn’t fixed everything yet and may or may not have cured my POTS, I remain optimistic that I’m continuing to heal. And I’m so grateful and amazed to have come as far as I have in a few weeks. However, I’m not ready to think a whole lot about the future or make plans, because there’s always that fear that this IVIG will stop working, just as my first one did.  But you know what?  Even after that first relapse, I eventually recovered, despite the setback.

I can’t afford to dwell on my fears. If there’s anything I’ve learned from having PANS, it’s that you have to live in each moment, appreciating all of the good things as they come. Although it’s in one way a curse to know I could wake up tomorrow and lose my very self, knowing this has helped me make the most out of every day and every hour of good health. So even if I still have some challenges, I’m just going to keep enjoying all of these latest victories, keep living, and keep remembering that the hard times don’t last forever—recovery from PANS is possible.

Sometimes, you have to clear your own path

Sometimes, you have to clear your own path

Last semester, when I received special recognition for some of my work at school, my college experience transformed. I quickly went from being the quiet kid with few friends, to the student that everyone in my department knew about. People who’d barely spoken to me before were now congratulating me and asking for advice. And I finally got invited to social events.

While I enjoyed my upgraded status, with my success came a side effect: unreasonably high expectations.

No one ever said to me outright that they expected me to be the best, but I could feel certain expectations when I walked into a room sometimes: peers assuming I knew far more than I did, professors scrutinizing my work more carefully, and outsiders urging me to do whatever it took to get into the “top” grad schools. While I’d thrived on this pressure at the time, after being so ill this summer, I found myself dreading showing up at school this semester while still struggling so much. I hated the possible humiliation that could come from having everyone find out I couldn’t even handle a full course load anymore—that I went from being “at the top” to barely being enrolled at all. I hated the idea of not living up to what my professors and peers had once expected of me.

For the first few days back at school this semester, I treated my part-time status and my now-delayed graduation as shameful secrets that I had to conceal. I walked through the halls pretending to be just as fine and happy and productive as ever so that I could fool myself and everyone else into thinking nothing had changed since last semester. I wished more than anything that I still had my old life where I could meet everyone’s high expectations.

But one night this week, after countless hours of struggling to even start any work, I went home and bawled my eyes out in frustration over the difficulty of writing a one-paragraph assignment. Before I had the flu in March, I could’ve done this homework in under an hour with little anxiety, but now, my brain is a mess, and the simplest things are exhausting. That night, reality came crashing down: I can’t possibly live up to anyone’s expectations anymore. And more importantly, I don’t have to.

I decided that night that I had to forge a new path for myself to get to my dreams in my own way, rather than the way others expected me to go.  I found so much freedom in releasing old expectations. Just because my path will be different from what everyone expected, why does that mean it’ll be worse than what “should’ve” been?

And really, who cares what anyone else thinks and how they choose to go through college themselves? It doesn’t matter, because we’re all on our own journeys with our own obstacles, so there’s no point trying to live up to the expectations of people who don’t understand my life. Yet truth be told, when I finally started talking about what happened this summer and my ongoing difficulties, I was showered with nothing but love and support—even from the professors who had been the hardest on me in the past. It turns out that most people are far less critical than I thought, so I might as well do what’s best for me instead of what I imagine people expect.

This road of relapse, slow recovery, a lighter course load, and new expectations is not the one I would’ve chosen, but it’s the one I’ve been given. So I’ve stopped asking why such difficult things have happened to me, and I’ve learned to accept and bear up to whatever lies in front of me. I’ve figured out that life with a chronic illness requires resilience, and resilience requires accepting life for what it is instead of dwelling on what I wish it were. Resilience is letting go of old expectations and moving forward as best I can—even if I must crawl towards my dreams instead of running.

Stuck in the In-Between

I'm stuck in-between being ill and being well

I’m stuck in-between being ill and being well. http://www.madadventurers.com/wp-content/uploads/2014/01/stuck-dog.jpg

The other day, when my high school best friend and I met for one last goodbye before returning to college, at one point, she asked what I was looking forward to most about going back to school. And then, it hit me: I wasn’t looking forward to much of anything about my senior year.

If I were going to have a heavy load of classes I knew I wouldn’t enjoy, if I had no friends, if I didn’t like my college, or if I hated being away from home, then I’d have a reason to not look forward to the coming year. But trust me, as the popular, poster child for my major who always gets amazing opportunities, I should have everything to look forward to. Yet none of it interests me anymore.

At the moment, I don’t know what I’m doing, but it’s not exactly living. I’m not depressed, but I’m unable to do much of anything because it all seems so overwhelming—it’s because my executive function and other cognitive processes are so poor. I’m not unhappy, but at the same time, there’s not a whole lot that makes me happy, either. I’m living halfway, in the in-between of a brain that’s not quite healthy, yet not nearly as dysfunctional as it once was.

Do you know that feeling when you’re really hungry, but you can’t find anything that appeals to you? That’s my attitude about life. I so badly want to do the things I usually enjoy, but I can’t quite will myself to do them. For a fleeting moment, I sometimes begin an activity, but then I realize how much brainpower it will take, and I can’t follow through. Part of me wonders if this is my brain’s way of forcing me to rest so that it can heal. Who knows?

If you saw me on the street right now, you’d probably have no idea my brain was inflamed. I’m well enough that I’m still able to go out and have coffee with a friend—though I often forget what I’m saying in the middle of a conversation and sometimes start saying nonsense. Even if I look “normal” on the surface, however, internally, I know I can’t completely think straight. (At least I know I’m not completely “here” still—it’s when I’m unaware of this that I’m truly in a bad state.)

To be honest, I’m afraid I’m making a huge mistake by trying to do college in this life of in-between. Is my brain truly well enough for homework? Why do I imagine I’ll magically be able to function better when I’m away from home—without my support system? I can barely stay on task long enough to cook a recipe. What business do I have getting through a day of college?

I feel like I don’t recognize my life anymore, because I’m in-between wanting to live and not having the mental energy to try. I feel like I’m wandering aimlessly through my days, with no clear direction. Yet maybe, just maybe, the structure of going to three classes each week will give me back a sense of purpose. No matter how difficult this semester may be because of my cognitive issues, I will at least have a feeling that I’m being productive by trying to do school.

While I may not be looking forward to any particular aspect of senior year just yet, I’m looking forward to a time when I feel like I’m living again—when I enjoy things and have my mental faculties back. I’m looking forward to a time when I can once again live without PANS or its ramifications interfering with what I want to do. So I’m hoping and telling myself that being back at school will get me unstuck and pull me from the in-between to the life I used to love.

Some college kids stockpile liquors, I stockpile nutrition supplements!

Some college kids stockpile liquors, but I stockpile nutrition supplements!

At 93 pounds, I was so miserable and malnourished that I didn’t even know how ill I was. At the time, when I found myself sitting in an infusion chair receiving my third IVIG, I silently wondered to myself what I was doing there. How could I have PANDAS if I wasn’t “that sick”? Why was I getting such a heavy-handed treatment? But with my weight nearing the so-called “starvation” range, many of my organs weren’t working properly anymore. My psychiatrist warned that I’d be in the hospital soon.

Three weeks later, I now realize IVIG probably saved my life. Thanks to the IVIG and accompanying steroids, my food-related fears were 75% gone within the first few days after treatment, and they’ve continued to die down. Unfortunately, the damage to my body was already done. Even though I was having less mental torment related to food, I still had to repair my malnourished body and regain at least seventeen pounds. But how?

While there are standards and scientific studies on recovering from Anorexia Nervosa, there’s little in the literature on recovering from PANDAS-related anorexia, so my doctors, my family, and I have found ourselves in uncharted territory, trying to figure out how best to treat me. How much of the anorexia treatment protocol applies to someone who never had body-image issues? Should I be forbidden to know my weight while recovering? Should I, too, be prevented from exercise for six months, even though I never exercised compulsively?

At the moment, the consensus is that I not only have to do all of my usual immune-system treatments for PANS, but I have to follow many of the standard treatments for Anorexia Nervosa. For example, I see a nutritionist every week and send her lists of everything I eat. I have weekly weigh-ins without being told the number. I do therapy with the psychiatrist, who also oversees the medical aspects of recovery. And I’ll soon participate in an eating disorder support group. The hope is that if I have a PANS flare that compels me to restrict again, therapy will give me more tools to fight back while I wait for medical treatments to kick in. Plus, regardless of my mental state, my body is damaged, and I need the professional help of a nutritionist to be sure my eating is conducive to healing.

However, now that I’m feeling so much better both mentally and physically, all of this therapy seems excessive… Actually, to be honest, I hate all of my anorexia treatments, and I’ve been doing my best to convince my parents and my team that I don’t need so much help.

In many ways, this feels like a repeat of my sentiments towards my weekly Cognitive-Behavioral Therapy sessions for OCD when I was seventeen. I knew I needed to go to them, but I abhorred every minute because I felt so embarrassed discussing the obsessions I’d always kept to myself.  At home, I often got into heated arguments with my parents about why I shouldn’t have the next appointment, I kept saying I was “just fine,” and I threatened to stop attending when I turned eighteen. But I stuck with it because the one thing I hated more than therapy was how my illness had ruined my life.

Similarly, now, I despise every trip to the nutritionist, every measurement on the scale, every mention of target BMI’s, every entry in my food diary. I want to block out that whole torturous, food-obsessed chapter of my life and forget it ever happened, but therapy brings to light the havoc anorexia wreaked upon my body and my life.  I hate that my doctors apparently think I can’t even be trusted to feed myself.  I hate the regimented meal-planning that therapy brings.  I hate how much of my day I spend working on recovery.  I hate that I feel like I’m in puberty all over again, because my body is starting to look different and feel strange (and I’m waiting for my period to come, just like a preteen).

But you know what? As much as I hate being treated for anorexia, I hate how life was at 93 pounds even more—I was so tormented and hemmed in by my obsessions and compulsions about food that I couldn’t see I was no longer living. If doing therapy on top of my medical treatments for PANS means giving me the best chance at never going back to that dark place, then so be it.

When I was discharged from weekly OCD therapy three years ago, I was indescribably grateful for the support my family and therapists had given me towards regaining my life. I discovered a freedom that I never dreamed was possible, because my family had pushed me to go to therapy. In the same way, as much as I don’t like to admit it now, I think I’ll look back someday and be grateful that my parents and doctors made me get treated for anorexia.

Could IVIG #3 be the end of PANS for me?

Could IVIG #3 be the end of PANS for me?

Today, just two weeks after my third IVIG, I’m happy to say I’ve made tremendous progress. I’m no longer afraid of food and calories, so I’ve probably gained back about half of the weight I lost. I’ve gotten strong enough to run (slowly). My POTS symptoms are basically gone, and my parents have told me that there’s life in my eyes again. Oh, and I’ve even finished all of the summer coursework for the classes I had to take incompletes in—including a twelve-page research paper!

So am I better now? Is life perfectly peachy now that I’ve had IVIG?

Not even close.

As I’ve said in the past, IVIG is really only the beginning of recovery—not the end. I spent much of the summer trying to hold myself together long enough to make it to IVIG, but now that it’s over and I continue to struggle, I’m realizing I still have to keep holding myself together. It’s not like you get IVIG and then you’re better. No, it can be up to a year before IVIG has its full effect.

I’m no stranger to this long healing process, though—this is my third time going through it. But of course, I don’t like to think about how long it can take to get better and what it entails. I’m not going to lie to those of you out there doing this for the first time… It’s hard—but so worth it in the end.

Some days and weeks, you might do extremely well and maybe even forget PANDAS is part of your life. Others, you might be worse than you were before IVIG. But a lot of the time, you won’t be sure if IVIG has done much good at all. Yet the truth is, if it’s working (and it does fail 10-15% of the time), it’s probably working so slowly that you can’t even tell. Blogging and keeping track of symptoms has helped me in the past, because it’s given me reference points for comparison that showed me I was getting better, even if I didn’t feel like it.

Every IVIG is different, however, because it’s always a unique set of people’s antibodies, and you never know how your body will respond to them. (This is one reason it sometimes fails.)  You and I will have unique experiences with our different IVIGs.

Each time I’ve had this treatment, it’s taken a different amount of time to work. The first time, it was two months, and then it stopped working another two months later. The second time, I improved some right away, but it was nine months and a tonsillectomy later when I felt like my symptoms no longer interfered with my life. This time, I’ve also improved right away, but now I have to wait to see what happens next.

I know this might be a long and difficult journey, but I’m not afraid of it, and I’m optimistic that I’m going to beat PANS for good this time around. I’ve already made huge progress. Plus, my doctor says she’s finding IVIG to be more effective when you don’t have tonsils/adenoids like I don’t.

I can’t know what the future holds, but I’m choosing to believe that, when it comes to me and IVIG, the third time’s a charm.

Goodbye, Anorexia?

Did I really eat a restaurant without having a panic attack?

Did I really eat a restaurant without having a panic attack?

This week, I reached a turning point in recovering from my eating disorder.

Up until now, although I’ve known how destructive my restricting has been to my body and though part of me wanted to stop, anorexia had so much control over me that I wasn’t completely willing to give it up. I said a few weeks ago that I was going to start treatment for it, but honestly, I was so depressed the day of the appointment that I couldn’t get out of bed and just cancelled it.

But one day this week, I looked in the mirror and saw my ribcage awkwardly jutting out in front of what was left of my stomach. I’d now lost seventeen pounds and weighed less than I did in sixth grade. I noticed bones in places that I’d never seen before. I realized how terrible I felt all the time: I was always cold, I had headaches every day, I couldn’t fall asleep, my brain was foggy, and I was constantly forgetting things. All of my POTS symptoms were suddenly getting worse, too. Recent blood work showed anemia, and my doctor told me I’d be in the hospital soon if I didn’t start eating more. Most frightening of all, I was having constant chest pain, which could’ve be a sign that my body was starting to break down the heart muscles as it was running out of other fuel.

Indeed, I was slowly dying. Then again, anorexia had so taken me over that I wasn’t really living anymore anyway. I was terrified to think of being in the hospital with a feeding tube—but I was even more afraid to eat. How could anything change?

I wish it were as simple as just “snapping out of it” and deciding to eat more, but it’s not. The idea of eating an extra one hundred calories is enough to send me into a panic attack. My brain screams at me to restrict so loudly that I can no longer hear the voice of reason. Even when I know it could kill me eventually, anorexia has so much control over me that I will fight with everything I am to continue to restrict. I am a slave to my own torment.

Nevertheless, I found freedom this week with my third round of IVIG. I don’t understand it, but yesterday, I ate all three meals without even trying to count the calories—usually, I have to plan everything out ahead of time and be sure I’m not going to eat “too much.” I’m normally extremely anxious about going to restaurants because it’s so much harder to count the calories, but yesterday, it was fine; I enjoyed my meals like a normal person. It’s like that terrible demon called Anorexia has left me.

You see, with every IVIG infusion, I get a dose of a steroid called Solumedrol. In the past, I’ve noticed immediate relief from symptoms because of it, so if there was any doubt that my anorexia was related to brain inflammation, it’s gone now—you’re not supposed to get better from anorexia just because you had some steroids and immunoglobulins. But the real question is: will I stay better?

As I finish up this third round of IVIG today, I’m bracing myself for the post-IVIG flare that I always have two weeks later. I’ve decided to continue to see the psychiatrist every week for therapy, because I don’t want the restriction to creep back in. I’ve told my parents how they can hold me accountable, so that they can help be sure I don’t lose any more. I’m calling a nutritionist, because even if I were somehow totally “cured” of the mental aspects of anorexia, I still have to recover from the physical consequences of malnourishment.

I don’t know if or when this eating disorder will come back to enslave me again, but I do know that this time, I’m not going to listen. I reached my physical and mental breaking point this week, and I never want to go there again. Life has more to offer than starving myself and being tormented by food. I don’t like to think of what would happen if I continued with that, so I’m running as fast as I can toward recovery.

Goodbye, anorexia. Hello, life.

How much can I let PANS steal this time?

How much can I let PANS steal this time?

Until a few days ago, I was certain I wouldn’t return to college this semester. Between my crippling depression, incapacitating executive function and concentration issues, and my physical weakness from POTS, living independently in less than two months while taking senior-level classes seemed like an impossibility.

Indeed, I’ve been so depressed lately that I’ve not wanted to do anything at all—my days have consisted of unnecessary amounts of sleep, wasted time playing mindless iPhone games to use up the hours, obsessing over calories, and too much exercise. I’ve barely been able to will myself to get dressed and showered each day, so how could I possibly keep up with college, too?

But one day this week, I woke up and realized there was also no way I could keep living like that at home, away from school, for five more months. I love my family, but I want some independence. The more I thought about my friends and the opportunities I had at college last semester, the more it hurt to think of being gone for so long. It’s too painful to imagine POTS and PANS continuing to take that life from me this fall. Perhaps staying home would be easier on my physical health, but not being at school would surely crush my spirit.

Nevertheless, sometimes, you’re simply too sick to do what you want, no matter how much you want it. It doesn’t matter how unfair this is—bad things just happen sometimes. Why should I think I’m an exception? Perhaps this time, the only way to deal with the grief of losing so much to PANS is to let myself feel it, then pick up the pieces and try to move forward on a new path.

But what if this chapter has been no more than a detour?

The other day, when my parents discovered I was still restricting and losing weight, they contacted my neurologist, and she put me on a one-month steroid taper. I really didn’t think it would work. In fact, I didn’t even want it to work—I just wanted to give up.

But lo and behold, my improvement has been dramatic. The steroids have helped me regain my will to live and to fight. For the last few days, although concentrating on anything for too long has still been like paddling a canoe upstream with a spatula, my depression has gone. For the first time in weeks, I’ve been able to open my textbooks, do the readings, and write short assignments on the material. It may take five hours, whereas a similar assignment in April took one hour, but hey—I’m doing them!

So I’ve decided that, if before the fall semester, I can finish these summer courses for which I had to take Incomplete grades, then I can handle a part-time load in the fall. And I’ve decided to make it happen somehow, because I’m tired of not living, and I’m tired of watching myself slip away. Even if I can’t do everything I want, perhaps I can do some. I must regain all that PANS has stolen from me.

I’ve decided to go back to school.

There may be a time to rest and let your debilitating illness temporarily steer you away from your dreams, but then there’s a time to throw up your hands and say, “#&@% this! I’m living my life now!”

For almost ten years, I’ve suffered under PANS. I’ve lost more time, opportunities, and friendships than I’d care to remember. In the two years following my diagnosis, I fought bravely and was sure I’d finally won the war, but PANS has recently been trying to take me away again.  I’ve had enough of this disease. I’m throwing up my hands, getting back in the fight, and returning to school to live my life.

My body is cooking up trouble with POTS and PANS

My body is cooking up trouble with POTS and PANS

“You’re going to hate me when I tell you this,” my cardiologist said this week.

I braced myself to be told my heart was damaged from Rheumatic Fever—or to be told my symptoms were all in my head, as so many doctors had said over the years…

“Your heart is fine—in fact, we haven’t seen one this perfect in years.”

Relief washed over me for a moment—until I remembered how my pulse had shot up when I stood for a test a few minutes earlier. The look on my doctor’s face told me I wasn’t imagining my symptoms.  What I’d feared most was true:

“You have… Dysautonomia.”

Dysautonomia is a fancy word for when a person’s autonomic nervous system (ANS) malfunctions. It can be caused by infection, autoimmune disease, or environmental triggers. The kind I have is called POTS (Postural Orthostatic Tachycardia Syndrome).

My doctor explained that whatever illness I had in April triggered a malfunction in the part of my ANS that regulates blood pressure and heart rate. So now, whenever I stand up, my heart starts beating very fast because not enough blood is returning to it; blood pools in my legs instead, so I get lightheaded and dizzy. Not surprisingly, this leaves me exhausted all the time.

“You can recover from this,” he explained. “But it’s going to take a lot of courage and time—possibly two or three years.”

I left the appointment that day with my head spinning—not from a lack of blood flow, but from the realization that my world had, once again, been turned upside down. For weeks, I’d hoped to find a simple cause to my fatigue with a simple fix. Instead, I got yet another diagnosis that doctors are only beginning to understand—another condition like PANS that could take a long time to defeat.

Although there are medications such as beta-blockers that can help POTS, for now, my treatment plan is to take in more salt (about 5000 mg of sodium each day), drink more water (2-3 liters), and slowly ease my way back into exercise. I also need to be sure I sleep enough and eat well (easier said than done while fighting an eating disorder).

To be honest, I’m still a bit in shock over this latest diagnosis and what it means for the months to follow. But at the same time, I’m really not surprised that my body once again had a strange reaction to a virus—albeit in a new way.

Frankly, I see POTS and PANS as related, because my POTS came on at the same time that my PANS symptoms started getting bad again. Indeed, my PANS doctor told me many of her patients have both POTS and PANS—a true recipe for misery and disaster.

Because of this, I wanted to make you all aware of POTS.  Symptoms include:

  • Rapid heart rate when standing or sitting up
  • Dizziness (especially when standing)
  • Lightheadedness
  • Fainting or almost fainting
  • Fatigue
  • Shortness of breath
  • Chest pain
  • Feeling heaviness in your legs
  • Headaches

For most people, proper treatment can lead to significant improvement, so it’s important to get a diagnosis. You can read more about POTS and other kinds of dysautonomia here: http://www.dysautonomiainternational.org/page.php?ID=30

I’m still trying to process what happened this week, but I refuse to accept POTS as a permanent part of my life. However, the cardiologist told me if I don’t fight POTS now, it will get worse, so I’m going to keep pushing forward one day at a time—I’m determined to find a recipe to overcome both POTS and PANS.

Ghost

With this latest relapse, I’ve been living as a ghost in my own life.

In a single day, I went from eagerly and excitedly whittling away at homework for my summer classes, to crying at the thought of writing a single paragraph of a paper. I went from enjoying meals and coffees with my friends, to being terrified of any group of people and not eating lunch at all. I went from being praised at school for contributions I made in my department, to wanting absolutely nothing to do with my chosen field.

And over a couple months, I went from a healthy 110 pounds to a dangerous 96 pounds because of my eating disorder.

To put one more rotten cherry on top of the melting sundae that was my sad state, I’ve been too sick to run. Running used to be the one thing that could make me feel better no matter how depressed I was, but now, I haven’t even had that.

Because of all this, this week, my family and I once again found ourselves in the waiting room of my PANDAS neurologist. I’d hoped that my one-year follow-up would be a happy visit when we would celebrate everything I accomplished this year, but now, we were almost as desperate as our first appointment two years ago. And I was even four pounds lighter than I was in 2014.

I knew my doctor would be concerned about my fourteen-pound weight loss, but I wasn’t prepared for her reaction to other symptoms. After I shared details about the last couple months, she looked at me and said, “I’m going to have a heart attack because you haven’t seen a cardiologist,” and immediately called the cardiology department at my local hospital to get an appointment.

Why such concern? My neurologist suspects that the flu-like illness I had three months ago was the Strep-triggered Rheumatic Fever, which often damages the heart. Indeed, I was diagnosed with post-viral pericarditis in May—an inflammation of the sack around my heart, so her suspicions are somewhat warranted. Although a recent EKG came back normal, I have yet to regain my strength. Furthermore, Rheumatic Fever can cause extreme fatigue and weight loss, which I’m experiencing.

“What about the anorexia?” my dad asked.
“She’s going to need more treatment. Some kids need three IVIG’s… Actually, this is bad enough for plasmapheresis,” my doctor told us.

I could’ve cried when I heard this. I didn’t realize how serious my eating disorder had become and that being malnourished could also possibly damage my heart. I knew I was miserable, but I didn’t know I was in bad enough shape to warrant IVIG or plasmapheresis. In that moment, I felt like surely none of this was happening to me—perhaps it was all just a nightmare. Perhaps I was only a ghost observing someone else’s life. But I was wide awake and in my own body.

So I have my third IVIG scheduled in a few weeks, and I’ll be seeing a cardiologist today (Tuesday). My doctor thinks it’s unlikely that my heart has been permanently damaged, but the possibility of Rheumatic Heart Disease is nothing to mess around with. Maybe I will at least have an answer as to why I’ve been so dizzy and exhausted and unable to run…

There is another ray of hope, too: I was switched from Azithromycin to penicillin, and so far, my mood seems to be brightening every day. I’ve even started eating an appropriate amount of food (though I still obsess and count calories in an unhealthy way), I’ve resumed my hobbies, and I’ve been able to do some homework. If the improvements continue, I won’t be getting IVIG.

It’s been an unbelievably awful few weeks, but I’m so determined to beat PANS into total submission one more time. I’m holding out hope that the penicillin will continue to work its mysterious healing and that I won’t ever need more IVIG. I’m choosing to believe that slowly, but surely, I will keep coming back to life in the flesh, never again to haunt myself like a ghost.

Why I Won’t Eat

You know it's a problem when you feel guilty about eating an apple.

You know it’s a problem when you feel guilty about eating an apple.

With this latest flare, I’ve been struggling with an eating disorder again.  Restricted food intake is one of the two major diagnostic criteria for PANS, so my new obsession is nothing unusual.  In fact, this is the third time in my life that I’ve faced an eating disorder: the first was when I was nine or ten and the second was in 2014.

This time, my eating problems began suddenly, a few days before a bad virus three months ago.  There have since been periods when I ate without guilt and felt no need to restrict, but at other times I’ve suddenly become completely tormented by food—classic PANS.  My eating disorder is, in essence, mental and physical torture.

PANS-related anorexia isn’t necessarily like typical Anorexia Nervosa, however. In my case, I’m fully aware that I’m too skinny, but I’m compelled to continue my restricting anyway. In the past, I’ve also restricted because I was convinced that virtually all food would make me throw up, so the only thing I would eat was one particular kind of fruit smoothie.  Now, I’m afraid eating will make me gain weight and lose control of myself, so I’m obsessed with consuming a certain number of calories each day.

Living with my PANDAS-triggered eating disorder is like watching myself drive towards a cliff and not being able to stop, even though I’m the one behind the wheel. I know my behavior is dangerous, but I feel compelled to continue anyway.  I know I’m losing an unsafe amount of weight, and I know it’s bad to not eat. But the anxiety caused by eating any more is so intense that I would rather continue to restrict. Even worse, there’s some part of me that derives a twisted form of pleasure from not eating.

Sometimes, I also still enjoy the taste of food, but I often feel bad about it afterwards. In my mind, no matter how little I’ve eaten, I’ve always eaten too much, so I’m always guaranteed to gain weight. I know what my doctors will say about me weighing only 96 pounds, and I know it’s dangerous to have lost 13% of my initial, healthy weight. But for some reason, I just feel like I need to keep going, and the torment surrounding this urge is too strong to resist.

All day long, I’m doing calorie math in my head, planning my meals for days. I feel guilty about what I ate, and unsatisfied with what I didn’t—PANDAS tells me I’ve never eaten too little.  I’m beyond exhausted all the time, and I fear it’s because I’m malnourished.

I never imagined I’d become so ill again. I never thought I’d take things this far. Sometimes, I don’t feel like I have a problem, because I believe so strongly that I’m still in control of my eating disorder. But part of me knows that while I thought restricting would give me control over my body, it’s instead made me lose all control I had left.

On some level, I find comfort in the “control” I think I have through restricting, but deep down, I know I can’t continue like this. Deep down, all I really want is to be able to enjoy food again without any guilt and to be strong enough to run.

I’m tired of food controlling my life, and I’m tired of feeling so bad, so I’ve decided to start outpatient treatment for my eating disorder. And of course, I’m going back to see my PANDAS doctor to address the brain inflammation that triggered it in the first place.  Finally, I’m going to have the Igenex labs run to test for Lyme and co-infections (in addition to a couple dozen other blood tests).

Although I’m scared to stop restricting, I’m so ready to be free and strong.  I’ve decided that, somehow, I’m going to eat with pleasure again. 

The Terrible 2’s?

Cake

Happy 2nd birthday to me!

This week, I celebrate my two-year blogiversary.

I started The Dreaming Panda when I was at my absolute worst—I couldn’t walk, I’d lost thirteen pounds, I could barely stay awake, and I was morbidly depressed. This means it’s been two years since that first trip to the ER when everything got so bad and precipitated a resolution to eight years of misdiagnoses.  So I’m now two years into my recovery journey.

For weeks, I’d been planning a post where I thank all of you for two years of support and tell you about how great life is now and how miraculous my recovery has been in those two years. I was going to talk about how I made all A’s and B’s last semester, which was the first time I’d been able to handle a full load of coursework since Freshman year. I was going to tell you about how I recently did my first solo road trip, while two years ago, I was unable to drive at all because of how sleepy and out-of-it I was. I was going to tell you that I’d been taking another twelve hours of classes this summer and enjoying it because it was finally possible to concentrate and think clearly. But then something happened….

I flared and started heading for a relapse.

Despite taking the antidepressant Wellbutrin, I am once again depressed and have been forced to take an “Incomplete” in two of my classes. I’ve lost all motivation and spend my days lying on the sofa now. And I’ve also lost at least eleven pounds, because my eating disorder is back. It looks like I’ve hit the terrible-two’s in my recovery journey.

Though this might all come as a shock when I’d recently been posting about how great everything is in terms of PANS symptoms, over the last few weeks, it’s become increasingly apparent that I’m physically unwell. I’ve gone from easily running seven-minute miles and half-marathons, to getting out of breath after waddling a quarter mile at a twelve-minute pace. Sometimes, I can barely climb the stairs. I have awful headaches at night, I’m often dizzy, and there are huge dark circles under my eyes despite eight or nine hours of sleep.

I have no idea what’s going on with me—we’re considering everything from Lyme and co-infections to POTS to anemia. All I know is that I’ll keep fighting until I get better again. My brain may make me feel panicked and terrified of everything right now, but I’m not afraid of what PANDAS is trying to do to me this time. I’ve beat it once, and I’m convinced I’ll do it again.

While this isn’t the celebratory two-year anniversary post I’d hoped to publish, I still wanted to thank all of you for your ongoing support. When I made the daring decision in 2014 to anonymously share my entire journey with the world, I never could’ve imagined all of the wonderful people I would meet as a result. I never imagined the love I would feel from strangers. I never imagined how much some of my writing would resonate with people, as was shown with the hundreds of shares my post for PANS Awareness Day received this year.

Your comments and emails have kept me going over the last couple of years, and for that, I’m forever grateful. Knowing that what I’m sharing through my writing has helped some of you has made me feel like my suffering might have a purpose.  Thank you for that.

Though this year feels like the terrible-two’s so far, here’s to a year that brings complete healing to me and to all of you!

“Just” My Parents?

Is it really good to go home for the summer?

Heading home for the summer!

With another year of college behind me, I recently packed up my apartment and headed home. Although I was unbelievably busy this semester and definitely overworked at times, I had a great junior year. I’ve truly put down roots in the college town where I spend the school year now, so it was with mixed emotions that I pulled into my parents’ driveway for the summer.

I love being at home, I love not having to cook or do my laundry or go to the store, and I love seeing my family. But the problem with being home is that it brings back bad memories and makes me feel like less of an adult sometimes.

Since I’m twenty-one now, I’m anxious to establish myself as an independent adult. I couldn’t ask for better parents, but my relationship with them has regressed over the last couple of years as a result of my illness. I’ve still not been able to have a steady job, so I’m financially dependent on my parents for almost everything. While I’m grateful that they’re able to support me, as a matter of pride, I wish I could balance school and a job and PANS well enough to establish some independence.

However, the main regression has not been financial, but the roles my parents have taken on as a result of PANS. When I was nineteen years old, they basically watched me all the time and didn’t let me go anywhere without them knowing, because I was suicidal. At twenty, during flares, I would scream at the top of my lungs in terror and throw myself into my mom’s lap like a five-year-old. Even in the better times, I deferred to my parents’ judgement on most matters, because I didn’t trust my inflamed brain to make rational decisions. I loved my parents and they obviously loved me, but this was nowhere near a typical relationship to have with one’s parents at my age—though it was exactly what I needed at the time.

Now that I’m well again, I think we’re all trying to create new boundaries, and sometimes, it feels a bit awkward to me. I’ve had to reestablish my ability to make my own decisions. I’ve had to learn to think of my parents as just my parents instead of as my caretakers.  We’re discovering how to have conversations where symptoms and appointments are never discussed. We’re figuring out what I should and shouldn’t be allowed to do on my own now—like the adolescence that I never had.

Every relationship, like recovery, is a process.  No one is perfect, so there will always be flaws and disagreements in a relationship.  But if you love someone, you make it work.  My parents and I are very close, even though our relationship is changing.  But I believe this change is a good thing, because I’m growing up and getting better.

And despite some awkwardness, I’m glad to be home and to be together with my family for a few months. This is the first summer that I’m actually well and not pursuing additional treatment, so I’m going to be thankful for that and try to just enjoy spending time with my loved ones.

Sometimes, you have to try a few antibiotics for PANS before you find the right one.

Sometimes, you have to try a few antibiotics for PANS before you find the right one.

Since being diagnosed with PANS, I’ve been on antibiotics for twenty months straight, save for one two-week break. I’ll continue until six months after my last symptom, or at the very least, through my senior year of college.

Over these months, I’ve tried a variety of antibiotics, including Augmentin XR and Cefdinir, but it was switching to Azithromycin in October that I believe was the final blow to my illness. The few mild symptoms that remain have little effect on my life.

Yet some critics might say that my taking antibiotics for twenty months is reckless—that I’m contributing to antibiotic resistance and an inevitable super-bug apocalypse. But these are the same doctors who will give a six-year-old anti-psychotics without investigating infectious triggers. So who’s the reckless one: the doctor who loads up a kindergartener on Abilify without running diagnostic tests, or the doctor who’s prescribing a year of Azithromycin, knowing it will keep me sane and healthy? Is it reckless to properly treat the underlying cause of a debilitating and potentially life-threatening illness?

Nevertheless, some skeptics argue that antibiotics merely have a placebo effect—that people are seeing a relationship between symptoms and antibiotics that doesn’t exist. But anyone who has PANDAS or who’s lived with a PANDAS child for any length of time may have observed the pattern of improvement with antibiotics over and over again—and knows it would be unscientific to claim these observations as mere coincidence.

But what about antibiotic resistance? What about the fact that antibiotics kill off beneficial gut bacteria? What about yeast infections? If PANDAS is just “sudden-onset pediatric OCD,” why not give kids an SSRI and send them to therapy? Why not treat the tics with some anti-psychotics? Surely long-term antibiotics are unhealthy, right?

If PANS could be effectively treated with therapy and anti-psychotics and SSRI’s alone, the PANS community would settle down and crowd into the offices of mainstream doctors, the kids would get better, and the families would go on thriving. But this isn’t the case. Treating infections is the most crucial part of recovering from PANS, because the infections are what trigger the symptoms in the first place. Any ongoing infections will continually provoke the immune system to create the antibodies that attack the brain and lead to symptoms. Thus, the infections need to be dealt with for healing to occur, and they need to be prevented for it to continue.

As for antibiotic resistance, more than half the antibiotics used in America are for agriculture. We should be worried about all the livestock being given antibiotics for non-therapeutic purposes—not kids with PANDAS who take amoxicillan to stop bad antibodies from attacking their brains. Some people with PANDAS are literally dying. I would argue that they need antibiotics as much as someone with life-threatening bacterial pneumonia, for which no one ever questions the use of antibiotics.

But surely after twenty months of antibiotics, my gut flora is a wreck, isn’t it? Seeing as I’ve never had a yeast infection or diarrhea or nausea during this whole time, I’d say I’m just fine. In fact, I had stomach issues before I started antibiotics that have since resolved. I’m not alone in this—I’ve heard similar reports from many other families. (All this being said, yes, I do take a probiotic everyday—with 30 billion live cultures.)

Antibiotics are a critical part in the healing process of PANS. For some, they may be the only treatment needed. For others, they’re one of many therapies that work together.

If you’re just starting on the road of antibiotic treatment, my best advice would be to realize that it can take time for PANDAS symptoms to die down. In some cases, you get worse before you get better.

Antibiotics are still drugs with risks, and using them shouldn’t be taken lightly. However, with PANDAS, the bigger risk is often to leave the trigger of the disease untreated.

One Wrong Step and…

With PANS, you never know what step might pull you into the ground...

With PANS, you never know what step might pull you into the ground…

I know I said I’d start a series on the different treatments I’ve tried, but I’m pausing to tell you why I haven’t been able to post in several weeks…

I caught some terrible virus and have been having symptoms again.  As a result, I got behind in school, so I’ve had to use all my time to get on top of things again.

As you know, when someone with PANDAS gets sick, it never just means sitting in bed and sipping on chicken soup for a few days. In the past, getting sick could literally make me lose my mind. For example, what should have been a mild case of mono during my freshman year of college turned my immune system against my brain, leaving me suicidal, anorexic, and unable to walk.

So you can imagine my fear when I woke up a couple weeks ago with my whole body in pain and a pounding headache. I was so weak that I could barely sit up. Was this the beginning of the end, all over again?

While I didn’t go crazy, I’ve certainly had a rough time as a result of this most recent illness. For a week, I had a ten-second attention span, making it take four times as long to get any of my homework done. I suddenly got it into my head that I needed to start restricting again, and I’ve lost a few pounds. When I was well enough to go back to class, I continually wrote letters out of order when taking notes and struggled to figure out how to fix my spelling errors. Things were making me cry for no reason. One night, I couldn’t sleep because I was afraid that if I did, my heart might stop and then I’d die.

In the midst of this, I had a dream that I was walking on a road with a friend when out of nowhere, I dropped into a mud sinkhole and became submerged up to my shoulders. My friend had stepped in the same place and not fallen in, but what should have been a puddle nearly drowned me.

“This is what happens when I get sick,” I explained. “I need you to pull me out.”

Just as she reached out her arm, I woke up, my heart racing.

I haven’t been able to stop thinking about the dream, because it’s true for pretty much everyone with PANS. During times of remission, we walk around the world just like everyone else, minding our own business, but then, when the wrong virus or infection comes along, we’re swallowed up by the ground beneath our feet. Most people can emerge from a cold with nothing but a runny nose that lasts a few days, while the same virus could literally drive someone with PANS into insanity. And the worst part is that when you’re busy living your life, you know that any of your steps could be the one that sucks you into the ground.

But thankfully, this time, my friend Prednisone once again pulled me out, and now I’m not having symptoms anymore. I believe there’s a reason why, in my dream, the mud only went up to my shoulders instead of totally burying me—nowadays, my flares never completely take away who I am in the way they used to. As bad as this latest one sounds, it’s nothing compared to how my flares used to be. So while it’s been discouraging to have had a recurrence of symptoms, I’m reminding myself that the mud was unable to swallow me up to my head like it once did.

So readers, I’m fine now, and I’ve finally gotten caught up with school. Next week, I’ll actually be starting my series on treatments, beginning with a post on antibiotics, so stay tuned!

Treating PANS can mean trying the whole kitchen sink.

Treating PANS can mean trying the whole kitchen sink.

When I was first diagnosed with PANDAS in 2014, my doctor said the treatment plan was to give me “the whole kitchen sink.” In other words, I would receive the full range of therapies, many of them all at once. It was unscientific, since this made it hard to tell which treatments turned out to be the most effective, but for a girl who could hardly walk and had lost over 10% of her body weight, this approach was necessary.

Today, I can say with confidence that the kitchen sink worked for me, because I’m back in school and thriving, with only mild difficulties.

So many of you have asked me what exactly I did that got me better—the majority of the emails I receive from readers are questions about my treatments. Because of this, I’ve decided to do a series of posts on the various treatments I’ve used, what they were like, and how I responded (or not). I probably won’t do all the posts consecutively—if something else inspires me on a given week, I’ll interrupt the series.

You see, the problem with treating PANS is that the lack of diagnostic tests makes it impossible to know which treatment will provide the most relief. What worked for me won’t work for someone else. What worked for others didn’t always work for me.

Even worse, nearly all of the treatments available take weeks, if not months, to produce results, so by the time you know something didn’t work, you have to start all over again and hope the next thing you try will do the job. Meanwhile, you’re miserable and hardly yourself because of your plethora of debilitating symptoms. I can’t even begin to express how agonizing the process can be when you’re not making progress, and you’re wondering how much longer until your treatments help you get better—or if you’ll ever get better at all.

Moreover, because of the lack of awareness and the lack of doctors with PANDAS experience, there’s no one to hold your hand through the recovery journey. The PANDAS specialists are overrun with cases and can’t speak to you often enough, and you’re fortunate if you can find a local doctor to simply refill your antibiotics—let alone to provide treatment guidance.

The fact that dozens of parents ask advice from a twenty-year-old with no formal medical training who writes a blog from her dorm room—this tells you everything you need to know about how hungry people are for information, hope, and support when dealing with PANS. On the other hand, there are many things one can learn from a patient that can never be gleaned from cold facts presented in medical journals.

All of this is to say that I’m going to be doing this series to hopefully make the treatment journey less scary for those in the middle of it. I’m not here to suggest any particular methods for others, but I hope by going into more detail about what I did, people might better understand what to expect after having made their own decisions with their doctors.

When my doctor first told me about the “kitchen sink,” I never could’ve imagined how many kinds of treatments I would try before getting completely better.  Recovering from PANS is the hardest thing I’ve ever done, but all that matters is that something worked for me—or more likely, several things worked together.

So readers, I hope you’ll come gather round my kitchen sink in these next few posts, and we’ll talk about this treatment and recovery journey that we’re all on together.

Life Beyond 100%

What does it really mean to be and to feel 100% oneself?

What does it really mean to be and to feel 100% oneself?

During my first few months of treatment, whenever anyone asked me what percent of myself I felt I was, I usually said 80 or 90%. Although I believed this was accurate, I was grossly overestimating my level of wellness, because I’d forgotten what life was like at 100%. As I’ve said before, I’ve never realized how ill I’ve been until I’ve gotten better.

The nature of my illness, since it affected my brain, altered my ability to perceive if I was really myself or not. People think I must have been terrified on the day I essentially lost my mind in 2014, but by definition, I couldn’t fully understand how far gone I was. I grasped that being suicidal, raging, and in a state of confusion wasn’t like me, but intellectually knowing I wasn’t myself is entirely different from experiencing and remembering who I really was. It was only as I began to get better that I started to comprehend how far from 100% I had been.

Today, I don’t say I’m 80%, I don’t say I’m 90%, and I certainly don’t say I’m 100%. I simply say that I’m well.

I’ve realized that when you don’t remember who you were as “100% yourself,” it’s impossible to give an accurate percentage. The sense of self is impalpable and can’t be constrained to measures or percentages.

As my brain heals more and more, I’ve discovered that attempting to define my “self” in numbers, as it relates to my symptoms, is like picking up sand with a sieve. Just as I think I’ve remembered what 100% of myself means, I recover from symptoms I didn’t completely know I had. Then, all my numbers and estimations become meaningless, my perception of how much like my “self” I’ve been shifts, and I have to pick up the sand all over again.

How will I ever know if I’ve truly returned to my “self”? On the other hand, who’s to say that who I am now isn’t who I was always supposed to be? People are constantly learning and growing and changing, so perhaps one’s self is not only outer, observable behaviors and traits, but an inner, subjective sense. Who’s to say that I’m not more like myself now than ever before?

I believe that in the case of an illness that so fundamentally alters your experience of the world and your perception of who you are, recovery means being able to live the life you want without your illness stopping you or negatively affecting the way you live. By this metric, though I still have mild symptoms, I’m 100% because I’m doing everything I wish to be doing, with little interference from my disease.

However, I’ve come to accept that I can never be 100% of my old self again, because surviving PANS changed who I am. I’ve gotten stronger. I’ve matured. I’ve learned to not take my health or my life for granted. I’ve become more compassionate. I’ve even discovered a love for writing as a result of it.

Sometimes, I still mourn for who I used to be, and I grieve the time I lost. But slowly, I’m learning to embrace this new person born from many tears, treatments, and trials, and I’ve grown to see her not as a victim, but as a survivor. A warrior is who I’ve become. In this sense, I’m not just 100%—I’m beyond 100%, because I’ve emerged stronger than ever before.

100% isn’t always about a lack of symptoms—it’s about being able to live again and being completely comfortable with the inner self that you perceive you are.

To me, one of the most difficult parts of recovering from PANS is how, just when you think you’re done having symptoms, your life can change again in a day. Sometimes, I feel like with PANS, the only certainty you have is the uncertainty of the course of the illness.

Last week, I’d been doing great in every way imaginable, but on Monday, I started having tics again. At first, I didn’t think much of it because, sometimes, I have a few here or there, and then they go away. Unfortunately, this time they were the most pronounced they’d been since the summer, and I was even having vocalizations again.

By the next day, I was constantly sniffing and grunting and making all sorts of strange noises and doing repetitive movements with my head and arms. At times, I could barely finish a sentence without being interrupted by a vocal tic.

But PANS had even worse things coming to me…

The day after that, while walking home to my apartment (and sniffing all the way there), I felt my legs starting to get heavy. I tried to keep walking normally, but they would stop responding to my brain. All of a sudden, my knees were buckling every few steps, just like they used to do all the time when I was at my worst.

Over two days, I’d gone from being 100% functional to being physically disabled and having severe tics. Why was all of this happening to me? Was this the beginning of a relapse? Would I be spending this spring break getting another IVIG, just like last year?

Most of the time now, I don’t dwell on my illness or feel sorry for myself. But this week, it hit me all over again just how unfair it is to have a disease that can leave you handicapped without warning. No one deserves to live with this possibility hanging over their head all the time.

Over the last two years of recovery, I’ve often been in denial of my illness. I used to blame myself for every flare and every tic and every obsession and every treatment I needed to have. I never told anyone, but I always wondered if maybe, there was somehow a part of me that didn’t want to get better, and that this part of me was making me continue to need treatment. I felt bad for putting my family through what they went through because, somehow, it was my fault.

Deep down, I always knew that I didn’t want to be stuck with my illness, but by blaming myself anyway, I could claim some control over the disease. If I’d been responsible for preventing my recovery, then, at any point, I could’ve decided to stop having symptoms. I didn’t have to deal with the uncertainty of having no control—or with the truth that I was doing everything in my power to get better, yet I was still sick.

But there’s nothing like involuntary movements and partial paralysis attacks to prove to you that you have no control over PANS—and that even if you felt certain you were well, you can’t be certain you won’t have symptoms again.  This week, I was faced with the reality that my wishes to get better (or my false suspicions of wishing not to) had no bearing on my recovery.

After a few days of being disabled and utterly discouraged, my tics started dying away, and I was able to walk normally. I do consider this a good sign, since I improved without any treatment. However, I’ve since developed new vocal tics (though they only happen occasionally), and I’ve had a couple nights when I could barely walk again. But interestingly and fortunately, I’ve had no cognitive or psychiatric issues, so I’m counting my blessings. For now, I’m just waiting all of this out to see if it goes away.

Still, I’d be lying if I said I wasn’t worried about what these reemerging symptoms may or may not mean.

Nevertheless, I’m slowly learning to accept the uncertainty of PANS—and my lack of control over it. I’m okay with not knowing what might happen next, because, through everything, I’ve always had an inexplicable conviction that everything will turn out right in the end. I struggle with my faith sometimes and am not always certain of what I believe, but this one conviction may be among the closest things I feel to certainty… Besides uncertainty.

Who Put Sludge in My Brain?

In a flare, I feel like my mind is full of sludge.

In a flare, I feel like my mind is full of sludge.

When I think about what a PANS flare looks like, rage episodes, wild involuntary movements, crippling OCD, short-term memory loss, and panic attacks are what normally come to my mind.

In the past, this was my experience. It used to be that, whenever I was fighting off any virus or infection, I basically lost my mind because my body started attacking my brain instead of just the infection. Flaring, to me, hasn’t meant having symptoms—it’s meant no longer having myself.

The week before last, as I was studying for my first physics exam, it became apparent that something wasn’t quite right in my brain. I’d been perfectly happy one day, but then out of nowhere, I had no motivation to do anything, I stopped socializing, and nothing interested me. Worse, I felt like someone was running my thoughts through a blender, because things stopped making sense.  The suddenness with which my symptoms came on made the reality unmistakeable: I was having a flare.

Whenever my physics tutor spoke to me, I had no idea what he was saying—not because of the difficulty of the material but because I couldn’t piece together the meaning of his words in the context of a sentence. I had to sit and think for a moment before I could decipher the message. It was like there was a bunch of sludge in my brain, messing up an otherwise functional engine, and my thoughts were all muddied. How was I going to pass the test in a couple of days?

Nevertheless, even though I was apparently flaring, I never got that old feeling of suddenly being possessed or out-of-control or otherwise outside myself—or the terror that I used to feel. I only felt that my mind wasn’t working right. Though unbelievably frustrating, it wasn’t nearly as upsetting as feeling like I was going crazy, as I felt in the past.

Although I hate the fact that I can still have flares that make me somewhat depressed and mess up my ability to think, I do find it encouraging that I had so few other symptoms this time. I never had any more OCD or tics or problems with walking. It’s a far cry from a flare I had a year ago, when I compulsively ran out of my apartment into the rain at 1:30 in the morning and started hallucinating. It’s even an improvement from my Strep-exposure flare in November, when I was so depressed that I spent an afternoon in a fetal position on my bed.

Indeed, recovery has been a lot of ups and downs. I used to hope that symptoms would vanish in a linear way over time, but this hasn’t been the case. While my day-to-day existence has slowly improved, I’ve continued to have flares even after two IVIG’s and a tonsillectomy. Yet as I was experiencing a couple weeks ago, my flares have gotten milder and milder, and I’ve fallen less far with each one.

Two days before the exam, when the sludge in my brain was making school utterly impossible, I began a high-dose Prednisone burst. At first, part of me questioned if I could really be having a PANDAS flare without more OCD or tics or anxiety, but when I had my mind clear after a day or two of steroids, it was unmistakeable that my symptoms had been from inflammation.

When it came time to take the physics exam, though my mind was sharper, I still wasn’t sure if I’d improved enough to execute such difficult problems. Although it took me longer than anyone else in the class to finish because of slow processing speed, I answered every problem and almost dared to hope I’d made a B.

And then on Friday, I got a surprise bigger than the realization that I’d flared without more OCD or tics: I’d made a 96%!

As frustrating as this latest flare was, I’m encouraged that each flare has continued to get less and less severe. I’m encouraged that a few days of Prednisone could bring me back to my usual. I’m encouraged that my flares no longer mean losing my mind. And I’m encouraged that I’m much better at physics than I would’ve dared to believe!

Guess who didn't get any roses for Valentine's Day...

Guess who didn’t get any roses for Valentine’s Day…

This Valentine’s Day was my twentieth in a row of being single.

Some of you have noticed my lack of discussion regarding my romance life, and a few have asked whether or not I’ve been able to date while dealing with PANS.

The answer is… It’s complicated.

I’ll soon be twenty-one, but I’ve never had any kind of relationship—unless you count a week in seventh grade.

For years, I was completely okay with my singleness. In fact, I actively didn’t want a boyfriend. There were a few boys in high school who wanted me to be their girlfriend, but I turned them all down.  In college (before I went into remission), I casually dated one guy off and on for a while, but then I stopped before it could become a relationship.

I felt bad for rejecting everyone, but I was always sure I’d done the right thing, because I never had feelings for any of them. I always told myself I was too busy for a boyfriend anyway, but ever since I was twelve, part of me knew there was also something “different” about me…

Whenever I would get together with my girlfriends in high school and they pointed out an attractive male walking by, I had no idea what they were talking about. I didn’t understand their butterflies or flirtation or talk of wanting to kiss. It was like I was missing something in my brain—as if puberty had never happened (though I experienced all the physical changes of puberty).

To make matters worse, I started having sexual intrusive OCD thoughts when I was eleven. They involved men and women and things that are far too explicit to mention, and though I viewed the thoughts as disgusting, I felt responsible for them. So I was sure they meant something about my sexuality, and I felt like the vilest person on the planet.

For a long time, I was confused about my sexuality—or rather, my lack thereof. If I couldn’t tell whether a guy was attractive or not, did that mean I was gay? Yet I knew I didn’t feel anything for women, either. Or was I actually attracted to both because of the intrusive thoughts?

To this day, I don’t experience attraction in the sense that most people think of it.  Sure, sometimes I “notice” a guy, but what I feel is little more than a strong desire to get to know him. I want guys to notice me, too, but there’s never a desire for anything physical.

Until recently, however, I didn’t even notice guys. The first time I ever found myself staring at someone because I thought he was good-looking was a week after my second IVIG—when I was enjoying a short period of near-remission. Since then, I think that a switch is slowly starting to come on in my brain, because this has happened a few more times—but it never once happened in all of the years that my PANS was untreated.

Perhaps I’m a very late bloomer in this area. Perhaps I never felt anything for so many years because it wasn’t the right guy. But personally, I think that PANS has both directly and indirectly affected my ability to experience attraction and to have relationships.

With PANS, the dopamine receptors—known to play an important role in romance—are attacked. Given that I’ve started feeling hints of attraction as the inflammation in my brain has decreased, I don’t find it hard to believe that some of my lack of feelings could’ve been because of the bad antibodies in my brain.

At the same time, I’ve never met another PANDA who also feels how I do (or rather, who doesn’t feel). But I can’t be the only person like this, right?

Of course, was I really going to be thinking about boys last year anyway, when the thought of putting away my laundry once overwhelmed me to the point of running out of my apartment screaming? How can you date when you’re dealing with crippling depression and anxiety? Plus, I’m sure I may once have tried to crush any tiny amount of romantic feelings I had towards anyone for fear of them triggering another intrusive sexual thought.

Nevertheless, this Valentine’s Day, for the first time ever, I felt some pangs of loneliness. While I still don’t experience attraction in the same way as most people, I’m slowly starting to want somebody to share life with—something I was once convinced would never happen. I’m finding that, in all areas of my life, recovery reveals many surprising things about the person I really am.

So who knows? Maybe next Valentine’s day, I’ll post a picture of some roses from my boyfriend…

Flare or Fluke?

How do I know whether or not my struggles are from brain inflammation?

How do I know whether or not my struggles are from brain inflammation?

Yesterday, I humiliated myself in front of the whole class.

Most days now, I feel that I have my mind back—that I can actually think without anxiety and malfunctioning cognitive processes clouding my every thought. But every once in a while, I do something really strange or stupid, and I find myself truly questioning my recovery all over again.

Everyone makes mistakes sometimes, and anyone may occasionally forget words, get distracted, or misunderstand instructions. However, when I do any of those things, I’m immediately taken back to a time when I did them all the time and every day—a time when I had no business even living independently, let alone attempting college. I get more upset than your average person would whenever I slip up, because I never know if my cognitive blip is what a typical person might experience or if it’s a lingering symptom. Every potential symptom sends me into bad memories and fear of history repeating itself.

My embarrassment yesterday happened when I was called up in front of the whole class to demonstrate a new concept on the board (one that I knew very well from studying). I went into auto-pilot, and I made an extremely elementary mistake. Even worse, I didn’t notice until my professor said something and asked me to try again.

“Oh, wow! That was pretty silly,” I said, as the whole class snickered. “What was I thinking?”

To make matters worse, over the last week, I’ve been wondering about and bracing myself for another mild flare. My cognition hasn’t been quite right for a few days. I’ve been really anxious and borderline depressed, and I’m having trouble starting assignments due to anxiety. I’ve had problems taking handwritten notes in class, because even though I know how to spell, my hands frequently write words and letters in the wrong order, or I write the wrong letters all together. And then there’s the fact that my physics textbook was christened with my own tears over the weekend, because I was having such a hard time understanding the material.

But if this is a flare, then why am I not ticking any more than usual? Why is my OCD not getting out-of-control?

Because I’m not flaring. And I’m certainly not stupid. I’m just sleep-deprived and under a tremendous amount of stress, and I’m realizing that college is hard for everybody. Yes, I do have some added PANS difficulties still—the handwriting issues and my legs not listening to my brain after I climb stairs or walk up a hill (more on this later). But who doesn’t get frustrated by physics homework? Who doesn’t have compromised cognition after not sleeping enough? Who doesn’t get anxious when trying to get school work done while awaiting a pending internship offer?

I suppose it’s still possible that I could be about to flare, but I’m choosing to reject that idea. This time, the solution to my struggles is not a Prednisone burst or a switch in antibiotics, but simply going to bed earlier and trying not to beat myself up over what happened in class yesterday.

Over the years, I’ve had to learn how to be sick—how to appear to function, how to live as much as I could, and how to mentally get through the heartbreak of PANS when I couldn’t keep myself together at all. But now, I have to learn how to be healthy—how to deal with embarrassment and challenging classes and stress and all the ups-and-downs of a healthy person’s life.

New Year News

2016: The year I'm finally well?

2016: The year I’m finally well?

I haven’t had time to write a longer post for a few weeks, but I just wanted to assure you that I haven’t disappeared.

I’ve been away, not because I’m ill, but because I’m well. In fact, I’d say I’m the best I’ve been in the last nine years.

Contrary to what you might expect, the more often I post or tweet, the worse I’m doing. When I’m well, I get out of the house and keep very busy. When I’m ill, PANDAS takes over my life, and I can’t do much. The only thing I can do when I’m sick is write about being sick and talk to other people dealing with this disease.

I’m not sure what happened recently, but I believe I’m finally well.

Yes, that’s right.  I really did just say that: I’m well.

So what did it?  I don’t think there was any one magical treatment or supplement or diet.  It was a combination of everything I’ve done up to this point—and everything I’m still doing.

My first IVIG got me 50% back.  The second got me to 70%.  The tonsillectomy brough me to 95%, and when I switched to Azithromycin, I finally came back to myself all the way.  Prednisone and Wellbutrin made my life almost liveable while I was still less than a shadow of my former self.  Switching to paleo eating meant getting out of my body’s way while it worked with the other treatments to heal.  (I’ll elaborate on these things in a future post…)

At the moment, I don’t even think of myself as a person with PANDAS anymore—I’m a person who beat it. Sure, I still have very small involuntary movements and some tics sometimes.  And I still take medications and supplements, but I don’t feel like PANDAS has any significant effect on my quality of life.

Whether this present health and remission is permanent, remains to be seen.  I could flare again when I’m exposed to Strep.  Who knows?

I’ll be heading back to college soon, and I’ll finally be taking a full load—including one of the most difficult classes in my major.  But to me, being able to work hard is a privilege.

So, readers, that’s all I have for now.  I just wanted to share with you that I’m doing very well for a change—and I wish the same for you.

But don’t worry… I promise this blog isn’t going anywhere—I actually have quite a few posts that are almost ready (but I haven’t had time to finish them). I’ll write more when I can.

I wish all of you a Happy New Year full of health and healing!

Surviving Holidays with PANS

The holidays can be a difficult time for PANS patients and families.

The holidays can be a difficult time for PANS patients and families.

Call me the Grinch, but for people with PANS, the holidays aren’t necessarily “the most wonderful time of the year.” For me, the season brings back painful memories of when I was sicker. Plus, symptoms can be more pronounced when contrasted with holiday activities, family gatherings, and Christmas parties.

I love my family and friends, but there are times when I feel like the PANDAS bear is the elephant in the room during visits. Invariably, I end up explaining my illness at every get-together, because my symptoms are forever changing. One time, it’s chorea. Another, it’s inappropriately saying “butt” in the middle of conversations (a vocal tic). On a different occasion, it’s difficulty walking. Understandably, I think it’s hard for some to comprehend how unpredictable and all-consuming PANS can be—especially when I don’t always look very “sick.”

My problem is that I get annoyed when no one bothers to ask how I’m doing, because PANS has been such an enormous part of my life. At the same time, I get annoyed when someone does ask, because despite what this blog may lead you to believe, I’d usually rather talk about college or writing projects or running rather than my challenges. I’m so much more than my illness, and I don’t want to just be the person with “the disease.” Of course, the people who ask almost always genuinely care, so I do appreciate the gesture.

Another difficulty with holidays and PANS is the sensory overload that can so easily happen. Last Christmas, I got so overwhelmed that I had to remove myself from the festivities and take a nap to recharge. My family isn’t that loud, but when you have the sensory sensitivities that are so common with PANS, all of the lights and bright colors and conversation and laughter and activity can be overwhelming and too much to process—no matter how much you’re enjoying yourself.

Worst of all, the first time I experienced depression was just days after Christmas in 2006. I’d been having a lovely time with family that holiday, and then depression came on suddenly. (Although I didn’t have the classic onset of OCD to go with it, I wonder if this was the beginning of PANS.) So to this day, I can’t help but feel a piece of that sadness and darkness every holiday season.

Of course, there are times when PANS and Christmas can be a funny combination—as with my notorious Shower Gel Incident in 2007…

I was twelve and in the middle of a horrible flare, and my mom gave me some nice shower gel. I loved the scent. In fact, I loved it so much that I unscrewed the cap and started to drink it right then and there, beneath the tree. Everyone, including me, was shocked. Though amusing, the story is also unnerving, because it shows how impulsive and irrational PANS had turned me. But I’d rather laugh than cry about it!

Nevertheless, this year, I think I’m in the best health since all of this started so long ago. This year, maybe there will be no elephant in the room at family gatherings, because the bear is leaving me alone—and frankly, I’m no longer embarrassed about what happened to me. I wouldn’t quite say I’m 100% symptom-free, but my present symptoms are so mild that I really don’t feel like I’m sick anymore. I don’t know about you, but I think that’s cause for celebration!

I hope that maybe, next year, I won’t be thinking of bad memories or the difficulties of having PANS around the holidays—I’ll be thinking of Christmastime as an anniversary of when I finally got better—as long as this progress lasts… And as long as I don’t drink more shower gel.


So readers, I’d like to hear from you. How do you deal with the difficult combination of PANS and the holidays? How do you handle awkward family encounters related to PANS? Do you have an “amusing” PANS story related to this season? I’d love to hear, so please feel free to leave a comment.

The Day Recovery Began…

I never imagined what could result from an iPod and a Google search...

I never imagined what could result from an iPod and a Google search…

As I approach final exams this week, I’ve been thinking back to three years ago, when my life changed forever, on December 17th, 2012.

At the time, I was seventeen and in my senior year of high school. I was excelling academically, and people told me I’d have a promising career. I was popular with lots of friends. I felt such a sense of freedom in being an “adult” by learning to drive. I thought the possibilities for my future were endless.

But in an afternoon, my whole world collapsed.

One Saturday at the end of November, out of nowhere, I became convinced I’d committed an unforgivable sin. Suddenly, blasphemous intrusive thoughts constantly filled my mind, and I was consumed with trying to “cancel them out” with silent mental rituals. If I didn’t, I might go to Hell. Overnight, my OCD transformed from mild to an extreme case—though I was still undiagnosed. Little did I know, it was the beginning of a three-year PANS exacerbation.

After that day, my life went from being wonderful to being a living Hell.

Sometimes, I realized how irrational my obsessions were. I would know I was a Christian, and I found it unbelievable to think that a loving God would throw me into Hell over some upsetting thoughts. Other times, I spent every waking moment trying to stop the intrusive thoughts, in constant terror that I was damned and beyond hope.

Sadly, it wasn’t the first time I’d endured this torment. Six years earlier, my OCD had abruptly started in the same way, and since then, it had come and gone. From the time I was eleven, blasphemous intrusive thoughts happened throughout each day, but I eventually learned to pay them no attention. I never told anyone. But suddenly, in 2012, the thoughts took over my life again and couldn’t be ignored, and I felt like they would throw me off the face of the earth at any moment.

Everything came to a head the weekend before my final exams. I couldn’t study, because the thoughts were constant, as were my futile attempts to stop or cancel them. I couldn’t write anything without checking and rechecking to be sure something didn’t have a blasphemous double-meaning. I couldn’t say certain words at all (like “bad” or “evil”), because I feared they would cause another blasphemous thought. It felt like there was a knife lodged into my conscience, tearing down to the core of who I was, and with every thought, it only cut deeper.

On December 17th, after three weeks of mental and spiritual agony, I’d reached the end of my rope. I saw I had to do something besides keep trying to cancel the thoughts, because the torture was only worsening. I stepped back and began to wonder if maybe, just maybe, I had a mental disorder causing it all. Maybe I wasn’t eternally doomed. Maybe none of it was my fault. And then I remembered a Reader’s Digest article from that March which mentioned OCD involved repetitive, unwanted thoughts.

After a Google search and two minutes on the OCD Wikipedia page, I knew.

It’s impossible to describe the hodgepodge of emotions in that moment on December 17th… I was so relieved to discover that my misery had a name—and a hope of ending. I was comforted to realize I wasn’t alone. I was shocked to find out I’d had a serious mental disorder for all those years. I was terrified, because I knew without a doubt that I finally had to speak up and get help. But most of all, I was hopeful, because I knew life could get better.

I wish I could say that everything got easier after that day, but because my family couldn’t convince local doctors to treat me for PANS (which we began to suspect as the underlying cause), December 17th was only the beginning of my fight against various debilitating neurological symptoms that would soon come.

Three years later, it’s been an incredibly long road to get to the freedom I have now (and I’m still fighting in some ways).  I’ve endured months of Exposure-Response Prevention therapy, two IVIG’s, tonsillectomy, lots of antibiotics and other medicines, and drastic lifestyle changes, but PANS no longer runs my life—nor does OCD.

As December 17th comes and goes this week, I can’t help but be grateful for the day, because my discovery and my parent’s research on OCD that followed is what ultimately led to my PANS diagnosis—and eventual recovery.

But more so, December 17th now makes me question… What about all the other people who have OCD but are too scared and confused to get help? How many more cases of PANS will go undiagnosed for eight years because people conceal their OCD so well? My situation was not unique, so I believe more awareness for OCD and PANS among parents, psychologists, doctors, and even children, will bring December 17th faster for more people.

Staying the Course

I didn't think I could finish that half-marathon, but I did!

I didn’t think I could finish that half-marathon, but I did!

I’ll never forget when I ran my first half-marathon in May.

While some people might remember the elation of achieving such a momentous feat, what I remember most was the pit in my stomach whenever I saw a mile marker—all I could think about was how many more I had left and how impossible it seemed that I would finish.

But I made it to the end.

These days, I feel like my recovery is another bad race, but I don’t even know where the mile markers are—nor does anyone else. Worse, no one can tell me how much longer I have to keep running.

With two bad flares in less than a month, I knew it was time to talk to my specialist again—even though we’d hoped to not need a follow-up for another year. So this week, the consensus was that I don’t need any more IVIG or other invasive treatments. I’m not suffering a relapse—my immune system was simply never done healing in the first place.

It’s as if I thought I’d finished the half-marathon, but I now have to keep running for who-knows-how-much farther. I’m tired, worn-down, exhausted, and unsure how long I can keep on.

Apparently, when you’re an adult with a developed immune system, it takes more time to heal from PANS. It’s more difficult for the body to learn to “forget” to make antibodies against the brain. However, it’s not impossible—I’m still told that no one is stuck with PANS forever, if you get treated. People far worse than I ever was have gotten completely better. It’s just a matter of time and of finding the right treatment.

Still, one of the hardest things about this disease is the uncertainty. I see a PANDAS/PANS expert, but even she has no idea how much longer I have to run this race.

There aren’t tests that can tell you what your best treatment option is, so I’ve just been given the whole kitchen sink over the last year, in the hopes that something we do (or perhaps all of it together) will get me better. Sometimes, I feel like we’re blindfolded and throwing darts at my disease, hoping one of them will hit it and bring it down once and for all.

It may sound strange, but that bad race in May gives me hope that I will still cross the finish line of PANS. I find hope in the sight of mile marker nine, forever burned in my mind as a forbidding sign that I would never make it; it represents how I finished when I never thought I could, because I not only made it to mile ten—I made it to mile 13.1, overcoming the hardest race of my life. I’m determined to do this again with PANS.

Even though no one can tell me the distance of the rest of my recovery, I do at least have support along the arduous course—a team of doctors, a loving family, a few close friends, and now some changes in medication. From this point on, I’ll stay on Azithromycin instead of Cefdinir or Augmentin (prophylactic antibiotics), and I’ll do higher-dose Prednisone bursts at the first sign of a flare. While I hate that I have to keep running when I thought I was finished, I try to believe that maybe, just maybe, I am in the home stretch.

Like my first half-marathon, my recovery journey has been anything but the run I expected. But I’m determined to stay the course and win the race of my life.

Why I’m Thankful

It was a paleo Thanksgiving at my house this year...

It was a paleo Thanksgiving at my house this year…

With Thanksgiving this week, as I returned home and sat around the table with my family, despite flaring recently, I couldn’t help but be thankful for the progress I’ve made over the last year-and-a-half that allowed me to be at that table—and for the family surrounding me, who helped me get there.

As awful as the latest flare was, now that I’ve switched my antibiotic to Azithromycin and am doing better, I’m all the more grateful for everything I have. It may sound like a cliché, but it’s true that there’s nothing like losing something to make you understand its value…

A year-and-a-half ago, I lost myself to this terrible disease. Though I wasn’t dead, emotionally and mentally, I was gone. I couldn’t walk. I couldn’t eat. I often couldn’t speak cohesively. I was constantly having involuntary movements. Most of all, I lost everything about my personality that made me myself—my joy and the spark of life in my eyes; I turned suicidal.

Because I once lost everything, I try not to take things for granted anymore. These days, when I decide to walk to class, there’s a smile on my face because I appreciate that my legs and brain now work together. When I touch a doorknob without hesitating, I’m thrilled to no longer be tormented by OCD about what germs I may be picking up.

When I can carry out a conversation without forgetting words or saying the wrong ones, I consider it a privilege. When I sit still in class without thinking about holding in tics or disguising my chorea movements, I’m grateful. When I packed my suitcase all by myself this week, I felt accomplished, because my executive function problems once made this impossible.

Living with the awareness that I lost, but have now regained, everything I now have adds a new layer of joy to my life that I never could’ve experienced otherwise. While there’s still plenty of emotional baggage as a result of my ordeal, I try to see the ability to be more thankful for life as more than a silver lining.

Although I continue to struggle in a lot of ways and have flares, I strive to be thankful for everything I do have. Embracing gratitude, no matter what time of year it is, is important because it helps you focus on the good things, even if there are a lot of bad things in your life. I see it as a way to overcome, because when you remember what you have and all that you can do rather than thinking of what you don’t have and can’t do, you can make better use of the abilities and opportunities you’re given.

So this coming week, as I head back to school into the home stretch of the semester, I’m going to do my best to be thankful that I’m well enough to be in college, struggling to get enough sleep, finish my projects, pass my exams, and make it until the end.

When Strep Attacks…

Once again, I've been taken over by a flare.

Once again, I’ve been taken over by a flare.

Last Friday, I would’ve said I was 100% symptom-free. I went the whole day with no tics or OCD symptoms or depression, and most astonishing of all, I could pay attention in class. My mind was the clearest it’d been in years.

But just as I’d put my life back together after the last flare, it suddenly fell apart.

On Sunday, I began to notice myself having mild short-term memory problems. And then I had a few tics. Monday night, my roommate got sick with an 101º fever, swollen tonsils, and white patches in her throat. Meanwhile, I was becoming more depressed by the minute. A culture of my roommate’s throat on Wednesday confirmed the unthinkable… Strep.

I couldn’t believe my luck (or hers, for that matter). She’d never had a known Strep infection, but she happened to get her first one in college while living with a PANDA who’s been known to lose her mind around the bacteria. Why did this have to happen?

I was sliding ever closer to the cliff from Monday onward, even before I found out my roommate was sick. I began crying for no reason and couldn’t concentrate. My memory was so bad that I forgot how to make a salad I’ve made every day for the last two months, and I couldn’t even remember the topic of a paper I’d been writing all semester. There was no denying that my brain was inflamed again.

I hate how PANDAS is a seemingly endless cycle of grieving the loss of who you are, then rejoicing when treatment resurrects you. When I’m alive, I never know how long I have to live. Will I be in remission for three months, or will it be three days? When I wake up tomorrow, will the infection-of-the-day take me away? I never know.

The worst of all is the sensation of losing myself when I flare; I don’t have symptoms—I no longer have myself. And it’s all the more painful because I’m always completely aware of the fact that I’m mentally dying. I’m wide awake as my heart is torn from my body.

Even so, this flare, though debilitating, has not been nearly as bad as the flares I had before my tonsillectomy. Yes, I lost myself, but I didn’t fall quite as far. I can’t explain it, but this time, the wall that shuts me into myself during a flare wasn’t as thick as it used to be.

Although I was so anxious one day that I ran out of one of my classes and couldn’t come back, I never got to a panic attack like I used to. Although I was extremely depressed to the point that I shut myself into my room for hours, curled up in a fetal position on my bed, and stopped doing my school work (despite normally being a top student), I didn’t become suicidal like I used to. And although I had some trouble walking due to loss of coordination, my legs didn’t go completely limp and paralyzed like they used to.

Objectively, I’m still better than I used to be, even if Strep made me flare. But I’m devastated to have had yet another flare just as I’d recovered from the last one. I’m devastated that my body still makes autoantibodies when exposed to Strep. I’m devastated that I still have PANS at all. How much longer can I keep living with it?

For better or worse, PANS is a part of my life, and though I’m doing everything in my power to push it out, I guess I’ll just have to keep doing Prednisone bursts and antibiotics and all my other treatments and live with it as best I can for now. What choice do I have? I’m beyond exhausted, but I somehow have to believe that life won’t always be this hard. I have to believe that somehow, something good will come out of this illness that still won’t leave me alone.

I wish no one ever got PANS, but I can only hope that what I’m going through and my ability to write about it might positively affect someone else someday—and that it does so even now.

And I have to hope I’ll never again be in such close quarters with Strep in my apartmentfor the sake of my roommate’s throat and for the sake of my own sanity.

Can Hamburgers Stop Flares?

Even in a flare, this silly hamburger label made me laugh!

Even in a flare, this silly hamburger label made me laugh!

I’ll be the first one to admit that there’s pretty much nothing good about having flares or having to take all of the antibiotics and other medications that I take. But, sometimes, in the craziness of it all, I just have to laugh at my circumstances—especially when there’s a hamburger on my bottle of Cefdinir, which I only acquired because of a flare…

After five days of an increased Prednisone dose the other week, I was starting to come out of the mud of depression and brain fog. I almost thought I was okay. My psychiatrist had me double my Wellbutrin to help what was left of the depression, and I was almost hoping that would be enough.

But then the PANDA bear grabbed me again.

When my tics start up, I feel like someone is taking control of my body. I feel like there’s some outside force enveloping me, forcing me to do the movements or make the noises. Sometimes, I can almost feel it on my skin, and that’s rather frightening.

It had been months since I’d had that sensation and since I’d ticked like I did one night this week. Clearly, I’d been exposed to something that my body was reacting to.

A couple of my doctors were highly suspicious that I’d caught Mycoplasma (walking Pneumonia), since it doesn’t respond to the Augmentin I take daily, so I got an Azithromycin Z-pack to treat it. I’d been holding off on starting it for a bit, hoping I could do without it, but when the tics came back and I wasn’t focusing again, I knew I had to do something.

I’m one of those kids who’s usually been classified as a “non-responder” to antibiotics, but given how bad my tics were and the lingering depression and anxiety, I figured it was worth a shot. Plus, I’d been having this weird shortness of breath and a cough, so it wasn’t totally crazy to suspect pneumonia.

To my astonishment, the day after my first dose of Azithromycin, something strange happened: I realized that I wasn’t ticking at all! By the second day, the cloud of despair that I get during flares was also gone. And I was even being productive!

Now that I’ve finished the Z-Pack, I’m doing umbelieveably well taking the hamburger Cefdinir instead of Augmentin XR, and Cefdinir kills Serratia marcescens. (For those of you who are new to my blog, that bacteria once infected my tonsils and probably caused a number of flares.) But since I’d been so depressed for several weeks recently, I hadn’t been cleaning my shower, and of course, there was a huge colony of Serratia growing in one of the corners. Yuck! I’m sure that didn’t help…

I'm 99% sure this was Serratia in my shower...

I’m 99% sure this pink blob in my shower was Serratia

But now, I’ve had someone else clean out the shower with Lysol (to limit my exposure), and I’ve been taking Cefdinir, and I’m doing wonderfully. In fact, I’ve had a few days of feeling 100% and completely symptom-free this week. I don’t know if it was the Azithromycin or the Cefdinir or the Serratia-free shower or all of the above, but no matter what it is, I’m glad for the relief.

Yet I never know how many good days I’m going to have before I flare, so I’m trying to savor and make the most of these good days while I can. I have a bad feeling I’m going to flare again, but I’d like to think it’s just an unfounded fear… Whatever the case, I’ll just keep living as much as I can in the middle of fighting off this crazy disease.

PANDAS is so difficult to go through, but I’ll just keep trying to laugh about the little things—like that silly hamburger—to make the journey more tolerable as I work to find the best treatments.

PANDAS, Described in 1 Word

"Sometimes I just get terrified." 17-year-old me unknowingly describing PANDAS.

“Sometimes I just get terrified,” said 17-year-old me at the beginning of this exacerbation.

To be faced with PANDAS is to have a lot of debilitating symptoms and feelings all at once that, in essence, make you lose who you are. There is much to say about what it feels like to have PANDAS, but if I had to sum up my experience in one word, I would say…

Terror.

Fear has been a reality of my existence ever since my onset at age eleven.  Sometimes, I’ve had specific fears, and other times it was general anxiety. There were times when I felt like I was afraid of everything, as I described so poignantly in a journal from 2009 when I was fourteen:

Worry Is Taking Over My Life-small

I feel like worry is taking over my life… I worry a lot about if I’ll die young. I worry about environmental toxins (like lead). I worry about hearing damage… I worry about getting sick. I worry about what other people think about me. I worry about house fires.

Over time, my fears would slowly fade away (presumably after I fought off whatever infection had caused each flare). But whenever I least expected it, the terror would come back out of nowhere.

When I was seventeen, I suddenly became convinced all over again that I’d committed an unforgivable sin. From then on, everything revolved around making sure I didn’t do something unforgivable that would send me to hell—but instead my OCD become a hell on earth.

I was a caged tiger after that night. I would pace around the house each evening, hoping that somehow it would help me escape the all-consuming terror that trapped me inside myself. The OCD told me I was about to think or say or do something unforgivable, and my mind was constantly full of intrusive blasphemous thoughts that I was sure could damn me.

In order to divert my mind from the horrible terror and despair surrounding the thoughts, I began to write for as many as twelve hours a-day, skipping meals and not leaving the room, to the point where my psychologist became concerned I was in my first manic episode.

The worst thing about PANDAS terror is that it is all in your brain, so there’s no way to make it stop, other than to get treatment or distract yourself. This disease can make you afraid of everything outside of you and afraid of the mind inside of you. It made me do anything—even things I knew made no sense—just to find some relief. Sometimes, those things were OCD compulsions. Other times, it was slamming myself into a wall or trying to jump out a window, just because I felt like I had to.

Sometimes, I used to impulsively run out of the house, because I hoped that maybe, somehow, getting out the door would get me out of the anguishing terror. It’s like having an allergic reaction and itching all over, and all you want to do is get out of your skin to make the feeling stop…  But you can’t.

The need to get out of your mind in a PANDAS flare of terror is one reason this disease can be life-threatening. This is why I used to scream things like, “I want to die!” and why I couldn’t see how life could ever get better, since I was stuck with a mind that terrified me and was no longer my own.

But trust me, it does get better. I haven’t truly experienced the fullness of terror since getting my tonsils out this summer, and I’ve heard so many other recovery stories.

These days, what I live with isn’t terror so much as a constant, mild anxiety. While the most recent Prednisone burst for my last flare quieted most of my symptoms and got me back to being functional, it didn’t get rid of that all-too-familiar feeling of worry.  Nowadays, I walk around feeling like something must be terribly wrong, but I have no idea what it is.

My anxiety is like the feeling you get when you’re lying in bed at night almost ready to sleep, and you suddenly realize that you didn’t do something important that you needed to do that day. It’s the feeling when you first realize you’ve lost your phone or your wallet, but you have no idea where it could be. It’s the feeling of dread when you’re about to go meet with the principal at school because you acted out. But unlike those situations, the only thing wrong is my PANDAS—not something external.

I’m used to the anxiety by now, and it’s no longer bad enough to make me want to run away from myself. While it’s certainly still disruptive, I’m able to go to class and get my work done anyway. I’m so accustomed to it that I almost don’t notice it, since I don’t know what life is like without being a little afraid. Besides, my non-PANDAS self knows the anxiety is brain inflammation—not based in reality.

Even so, my team of doctors and I are not satisfied with me feeling that something must be terribly wrong—not to mention the tics that have returned. We’ll be checking titers and Ig levels and possibly changing antibiotics, so I’m doing my best to look at the coming weeks with hope—not dread.

Why I Run in the Rain

My PANDAS is a rain storm that seems it will never stop...

My PANDAS is a rain storm that sometimes seems it will never stop…

It’s 8 AM on a Saturday, and rather than sleeping in as you might expect for a college student, I’m lacing up my running shoes and getting ready to bolt across town.

However, this weekend, when I opened my blinds, I almost pulled the covers back over me; I saw it was raining with no sign of stopping.

I’d never run in the rain before, and the mere idea of it caused the shivers. I had so much homework, and the only time I had to spare was in the morning.  But I love running so much.  How could I let a little bad weather keep me from it?

I realized that if I waited for perfect conditions, I would never run. If I waited until I truly felt like going, I would never run. If I waited until I was completely prepared, I would never run.

So I decided to run in the rain…

Many people have asked me why I’ve continued to go to college in spite of a mentally and physically crippling neurological illness. They wonder why I continue to chase dreams that seem outlandish even for a healthy person. Why not at least take a year off and wait until I’m totally better? Why not wait until I stop having flares? Why not wait until I can get the most out of my educational experience?

I don’t know when it will ever stop raining, so if I’m going to run, it might as well be now.

My life over the last three years has been pouring. Nothing has been the same since the day my OCD hit me like a train during my senior year of high school. It would have been perfectly reasonable to defer college. Even now, I could almost justify being at home, considering my ongoing lack of concentration and other executive functions.

Yet no matter how badly I wish it would stop raining, I have no power to clear the skies. For better or worse, my life is one of rain for now—but I can still choose to run on in spite of it.

I only have one life, and I have to make the most of the cards I’ve been dealt. If I stay indoors and wait until I’m well enough to start living and going after my dreams, I may never do anything at all. How could I know what “healthy enough” is if I’ve forgotten what that fair weather even feels like? This disease has taken so much from me already, and I don’t want it to take anything more. So I have to keep dreaming and keep pushing forward and keep living as much as I can, even if I get soaked out in the rain.

I may work three times as hard as everyone else to produce the same results. I may have to live at a much slower pace than I would like. And there may be some things my illness prevents me from doing, but I do my best to focus on what I still can do. As long as my heart keeps beating, I have to keep running, in the hopes of finding joy and purpose in the middle of the downpour.

No, it’s never been easy to try to live my life while fighting PANDAS. There are plenty of days when I find myself wanting to go home and stay inside where it’s comfortable and warm, rather than working so hard and getting drenched by the rain. And certainly, I would never run if my symptoms were a hurricane or a thunderstorm, because when the weather is bad enough, it simply becomes unsafe to run.  But this is not my situation anymore, so I have to keep going as far as possible.

I run in the rain because I know that every stride, no matter how slow or difficult, means I’m overcoming something beyond my control and that I’m doing what I can to take back everything I’ve lost.

Until the Victory Is Mine

I was hoping to never again need my 10 mg Prednisone tablets...

I was hoping to never again need my 10 mg Prednisone tablets…

One of the hardest things about PANDAS is that you never know what it’s going to do next. Just as you’ve finally gotten your life back, it can strike again. Or just as you’re sure the fight is hopeless, things might turn a corner. Sometimes, it seems like there’s no rhyme or reason to its course.

Indeed, it wasn’t too long ago that my doctor said I was in remission. My family and I were stunned at the improvements I was making after my tonsillectomy. But this week, the unthinkable has happened: I am, once again, having a flare.

Over the last month, I’ve been going through more and more days with significant symptoms. I tried to attribute them to the stress of college or to psychological trauma from living with a horrible illness for so long. I didn’t even consider the possibility that my illness was coming back. But this week, I finally fell off the cliff again, and it was impossible to deny.

Not too long ago, I was feeling on top of the world, loving every moment of college. But one day, I woke up with a sore throat and despair, and nothing has been right since.

My depression has been so bad that I cannot make myself get off the floor of my room to even get a cup of water. I cannot do any homework, because as soon as I try (when I can make myself try at all), I burst into tears for no reason. I cannot concentrate on anything I would normally want to work on, either, which makes me feel like a total failure in life. I’ve been experiencing that all-too-familiar feeling of being detached from the world around me, as if I’m separated by an invisible wall. Most telling of all, my legs have begun to seize up on me when I walk, and I’ve lost the fine-motor skills that let me type accurately. And, of course, I’m being tormented with new obsessions and compulsions.

I’m devastated. I was hoping that I could just be done with this blasted disease and get on with my life. Is being able to use my brain too much to ask for? I want nothing more than to live a quiet, productive life and to contribute positive things to society.  And yes, it would be really nice if I could actually be happy. But instead, here I am, crippled by the despair and terror that this disease creates in my brain.

However, as awful and disappointing as it is to be having such debilitating symptoms again, people have pointed out that flaring doesn’t mean I’m heading for a full-blown relapse. It’s just as likely that I’m still healing, and this is only a bump in the road. If I’ve learned anything from my long recovery journey, it’s that healing a brain and an immune system is never a linear process. Sometimes, you make giant leaps forward. Other times, you stumble down a few stairs. But the most important thing is to keep getting back up and fighting with everything you have.

I’ve been on a 5-day burst of a higher dose of Prednisone, and it’s helped tremendously so far. While I’m glad for the relief, it’s been difficult to realize that many of my symptoms can be attributed to inflammation—which means I still have bad antibodies affecting my brain. It’s hard to know that I’m still fighting that familiar foe.

Honestly, I’d be lying if I said I wasn’t worried about what the future holds or wondering if I’ll ever really get 100% better. I’m so sick of battling this disease, but if I’ve made it this far, I can’t possibly give up now.

So here’s to staying in this war a little while longer, until the victory is mine.

Quietly Out of Control

You can binge eat on a paleo diet? Heaven help me…

When most people who’ve dealt with PANDAS or PANS think about being out of control, what probably comes to mind are episodes of rage, debilitating OCD, constant tics, and panic attacks. While these things are the most characteristic of the disorder, during the last few weeks, I’ve been finding that sometimes, you can be out-of-control and look totally fine on the outside.

Right now, it feels as though all of my thoughts are swarming around me, and I try to catch them, but they manage to slip out of my hands before I can put them back into the cage of my head. Just as I’ve grabbed one thought, as soon as I try to reach for another, the first one slips out. I forget things quickly. I don’t pay attention. I get nothing done. I end up feeling frantic and restless, yet I can’t actually do anything productive with all of this unfocused energy.

But what makes me feel the most out-of-control is that there’s a puppeteer in my head that makes me do things I don’t really want to do. It makes me read pointless articles on the Internet when I want to be reading my textbooks. It makes me sit on the floor and stare at nothing instead of getting into bed when I’m ready to sleep. It makes me bike all the way across town to areas I don’t know when I only need to bike to the college library. And it’s impossible to extricate myself from the puppeteer’s control.

Lately, it has me doing something even more disturbing: binge eating.

I think about food a lot, and often, I start eating when I’m not even hungry. And then I can’t stop. I just stand in the kitchen eating and eating, knowing exactly what’s going on, but feeling powerless to do anything else. When I’m finally done, I feel bad about it, and I’m tormented with the idea that I’m going to get fat. I think about fasting to make up for it (but I never actually do it). I think about how long I will have to work out to burn it off. I “check myself” in the mirror every time I walk by, which I know is ridiculous, but it sometimes makes me feel better for a moment.

So far, I’m still below the weight I was before I had an intense period of restricted eating in the summer of 2014. I tell myself that as long as I keep running and working out, it will be fine. But I know I’m not fine…

I’m not heading in a good direction.  I’m beyond frustrated with my out-of-control mind, and I’m frightened by my out-of-control actions.

In desperation during midterms the other week, I restarted taking Provigil (with my doctor’s approval) to maybe have something that remotely resembled an ability to focus and get some work done. For a week, it worked beautifully, but now, I’m feeling unfocused and out-of-control all over again. Even worse, my depression has come back despite temporarily stopping my Prednisone taper—which my doctor suspected was causing it a couple weeks ago.

I’m beginning to question everything all over again… Am I really in remission? Am I getting worse? Am I feeling this way because my classmate just had Strep? Could this be related to the Prednisone taper? Is any of it part of the PTSD?

For now, I have no answers. I’m going back to the psychiatrist this week, though, so maybe he can help get me through this rough patch…

I’m better than I was last semester or a year ago. I do have good days where I have concentration and control. I’ve even had quite a few days where I’m not depressed, either. But one thing is certain: I’m still fighting PANS. And whatever it takes, I have to find a way to put my thoughts back into my head and free myself from the puppeteer.

OCD Week: Unlocking The Box

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I couldn’t believe what I found in this box.

A few months ago during one of my trips home, I came across an old lock-box where I used to hide things as a child, but I couldn’t remember what I would’ve put in it. Tiny toys? Candy? Secret notes?

What I found there instead shocked me.

The box was filled to the brim, and on top was an unrecognizable brownish-green rectangle in a plastic bag. I pulled it out and discovered it was a seven-year-old piece of hardened bread. Beneath it were dozens of pieces of random trash.

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This was no ordinary treasure box…

Had I used this box as a trashcan? No, the bread was something that had to do with an OCD compulsion I had when my OCD was at its absolute worst in 2007. I’d hidden it in the box, where I knew no one would ever look, because I was embarrassed and afraid of anyone ever knowing about my rituals. The trash consisted of things that had no meaning or value that I’d felt like I needed to keep for no reason—a characteristic symptom of hoarding OCD.

Unlocking the box re-opened the darkest chapter of my life when I was consumed by Obsessive-Compulsive Disorder. As disturbing as this was, perhaps the worst part was realizing its poignant symbolism…

For six years, I kept my OCD and the suffering it caused locked up within me, despite the efforts of multiple therapists and psychologists. I thought if anyone knew about the thoughts I had, I would be labeled a crazy and terrible person. I never let anyone look inside the box, and I hid my OCD so well that even I could almost pretend it wasn’t there. But that box was in plain sight, sitting on my bedroom shelf for all those years. Had anyone had the key, it would’ve been so easy to look inside at my pain—and get me help.

I believe that the key is more awareness about different types of OCD and an open dialogue with children about mental health. If I’d known OCD could take the form of repetitive unwanted thoughts along with mental rituals to “cancel them out,” I would’ve been more inclined to open my internal OCD box sooner. If my psychologists and therapists had simply mentioned that repetitive, upsetting thoughts were characteristic of OCD—and that OCD was more than hand-washing and making everything even and tidy—that piece of moldy bread would not have still been in my box seven years later.

Ultimately, it was only when I read a description of OCD in a psychology textbook in high school, and yet another article on it in Reader’s Digest, that something stirred in me to question whether I needed to keep my unwanted thoughts and all-consuming compulsions “locked up.” What if I wasn’t a terrible person after all? What if there was a brain disorder responsible for the bad thoughts instead?

When I eventually worked up the courage to tell my parents what was happening to me, they were shocked (as was I) to learn that OCD had been completely hidden inside my mind for six years.  (Sadly, it is quite common for a person with OCD to go undiagnosed for several years.)  Although I had the classic sudden-onset of OCD that characterizes PANS, my OCD revolved almost exclusively around religious obsessions and invisible mental compulsions, which made it impossible to diagnose since I refused to bring them into the light.

As someone with PANDAS/PANS, I believe that OCD awareness is all-the-more important. It helps others better understand some of what people with PANS go through, and it helps more people figure out they have PANS.  And obviously, OCD awareness helps those who have OCD without PANS.

Personally, it was my OCD diagnosis when I was seventeen that caused my parents to stumble upon the term “PANDAS.” For years, they had researched all manner of diseases and disorders to try to figure out what happened when I was eleven that led to an onslaught of mental and physical problems, but they had never come across PANS. But reading in OCD books and websites about this little-known autoimmune disorder that could cause every health issue I’d experienced ultimately saved my life.

Today, thanks to both medical treatments for the PANS that caused the worst of my OCD and cognitive behavioral therapy for what was left of it, I have only mild OCD symptoms. Now, I want to do what I can to help others unlock their OCD boxes and learn about PANS so they don’t have to go through six years of secret torment like I did.

Let’s face it—the result of leaving OCD in a box for so long is not-so-pretty.  Like that moldy bread, the longer it goes untreated, the worse it gets…

This week is OCD Week. I hope you’ll join me in taking some time to spread awareness and possibly save someone else’s life.

P.S. Thank you to all of you who have shared last week’s post, “Why PANDAS Awareness Matters.” I have been overwhelmed (in a good way) by the responses I’ve had, and best of all, it’s been wonderful to see so many people spreading the word about PANS.  Thanks again!

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As I made my way through the halls to my neurologist’s office last May, I stopped in my tracks as I saw a face I recognized. She was receiving IVIG and roaming the halls hooked up to an IV bag pole, accompanied by her mother and a nurse. She was exhausted. There was no light in her eyes. She had a sense of burden and deep sadness about her that penetrated to the depths of her soul.

Once you’ve seen the face of a child with PANDAS, you can never forget it.

Over the last year, I’ve heard so many heartbreaking stories about what this illness can do. I’ve seen the look of terror in children’s faces and the grief and weariness in the parents’ eyes. I’ve watched as my own life fell apart, flare by flare, and I’ve spent what should’ve been my best years wanting nothing more than to find my lost mind.

Although PANDAS and PANS are curable, getting a diagnosis, let alone proper treatment, is far too difficult. It took me eight years to find an answer. It took me declining so much that I could longer walk, lost twelve pounds in two weeks (that I absolutely didn’t have to lose), and was psych-ward-worthy depressed and suicidal before doctors finally admitted that there could be a single cause to an alleged list of seven different syndromes and illnesses.

And I am one of the lucky ones.

My story has a happy ending. After two IVIG’s, a tonsillectomy, and a year of antibiotics and steroids, today, though I still have symptoms and take medications, I have my life back. I’m living independently, attending a prestigious university, earning straight-A’s, and making my mark in my chosen field. But without treatment, I would still be spending my days homebound, sleeping for up to twenty hours each day, unable to walk, and constantly watched by my parents so I wouldn’t hurt myself.

Sadly, my story may still be the exception—not because PANDAS is rare, but because it is common and many people may never receive a diagnosis. PANDAS/PANS is likely responsible for as much as 25% of cases of childhood OCD and Tourette’s. As many as 1 in 200 children may have this devastating condition. While some may outgrow it, for others like me, left untreated, it could lead to a lifetime of mental illness and disability.

To make matters worse, there are only a handful of doctors in the US who are considered to be experts in treating PANDAS and PANS. Their practices are overrun with cases. Waiting lists can be long. And when you finally do get an appointment and a diagnosis, treatments such as IVIG and plasmapheresis are outrageously expensive and are often not completely covered by insurance. If you’re fortunate, antibiotics might be enough to put you into remission, but sometimes, insurance won’t cover these, either.

While thousands of children and families are suffering, too many doctors are debating whether this condition even exists. Many doctors have the nerve to send families on their way, blaming debilitating symptoms on “bad parenting” or “school stress.” If we had a dime for every time we were told PANDAS is “controversial” or “not well understood,” perhaps we could pay for our IVIG treatments!

387,000 children in America (1 in 200) need treatment and shouldn’t have to travel hundreds of miles just to find a doctor who won’t dismiss their symptoms. Tens of thousands still just need answers.

October 9th is PANDAS/PANS Awareness Day. Help us raise awareness. Help us tell more doctors and psychologists so that it doesn’t take so many years of suffering to get a diagnosis. Help us get more insurance companies to recognize PANS and cover more treatments so that more patients can get the care they need.

PANDAS/PANS needs awareness because that sad girl in the hallway is in every elementary school across America—yet many of her may never know why she suddenly lost her joy and personality.

I believe that if those of us who have been diagnosed keep making noise, there will be a day when it is unheard of for a doctor to deny the existence of such a devastating syndrome. I believe there will be a day when the only thing parents have to worry about when their child gets PANS is helping him get better—not finding a believing doctor, not wondering how they can bring a terrified and uncontrollable child across the country for a consultation, and not paying for treatment.

But until then, I will keep writing and raising awareness, because for so many, that day can’t come soon enough.

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PANS/PANDAS is an autoimmune reaction triggered by Strep, Pneumonia, Lyme, Mono, Stress, etc. resulting in an acute onset of neuropsychiatric symptoms that can include: separation anxiety, OCD, tics, age regression, ADHD, sleep difficulties, personality changes, urinary feequency, irritability, rage, sensory sensitivities, deterioration in learning abilities, and anorexia.

Why I’m Better, Not Over It

I'm always cautious, waiting for the next symptom to come back...

I’m always cautious, waiting for the next symptom to come back…

This week, I woke up and cried.

99% of the time, I focus on how wonderful it is to be in remission, and I don’t allow myself to think about how awful my life used to be.  I don’t let myself feel sorry for myself.  I try to not dwell on the past.  But several nights per week, I have nightmares—most of which revolve around everything that happened to me.  And these are what break me.

I want more than anything to just get on with my life, and in many ways, I have.  These days, I feel the most like myself that I’ve felt in two or three years. My good days are up to 98% symptom-free, and my bad ones are rarely below 90%.  Although my life is still affected by PANS, it isn’t controlled by it…

Yet the nightmares still come.

This week, I realized that although I’m mostly recovered physically, I’m not recovered emotionallyI’m still not over what this disease once did to me. And I’m not over the (very small) possibility that it could return someday.

Sometimes, I feel like I live my life waiting for the other shoe to drop. I’m always waiting for the next virus to send me back into a flare. I’m forever watching every little movement and thought, ready to fight against my next PANS assault…

My arm jerks a little bit, but I didn’t tell it to move. Was that a chorea movement? Or was that just a normal twitch? Am I going to flare?

I completely forget about a homework assignment until the last minute. Was that brain fog? Am I getting forgetful again?

I have no appetite one night and decide not to eat. Is this the return of an eating disorder?

I feel sad one day. Is this the start of depression?

When I keep myself busy during the day as I’ve been doing at college lately, I’m able to mostly stop thinking about potential symptoms.  But when the day is done, the nightmares often rush in: I have dreams of the future where I am doing worse and need more treatment; I have dreams where I see myself falling down whenever I try to walk; I see myself surrounded by confused doctors; I see myself getting IVIG. I wake up relieved for a moment that it’s just a dream, but then I realize that it isn’t—it really happened.

I wish I could only be grateful for my recovery and move on, but when my mind is stilled and the lights go out, I’m haunted by my past. I can’t undo the six-year torment of facing OCD all alone, too scared to ask for help. I can’t forget the daily despair of knowing I was losing more and more of myself with every day that went by last spring. I can’t erase the terrifying hours of descending into flares, knowing I was losing control over my body and mind.

The reality is that PANS was a traumatic experience. PANS essentially killed me, but I was incredibly fortunate to find a doctor who brought me back to life. Still, no IVIG or tonsillectomy or Prednisone burst can help me come to terms with the last nine years.  I need time and maybe some help in order to heal emotionally.

Indeed, I’ve been in and out of counseling for the last year, and I believe it’s helped me have the courage to keep moving forward as much as I have. I may need another year of it to fully heal. At some point, I will heal, but I will never get over it, because “dying” has changed the way I look at life, for better or for worse.

Someday, I will realize that I haven’t had a bad flare in years. I will realize that I’ve been living my life, and PANS hasn’t hindered it. Then, I will exhale, and PANS will only be a scar—but always an indelible mark on who I am.  I can’t “get over it,” but I can choose to keep living and fighting for all that I once lost.

ADHD: The Struggle Is Real

With ADHD, I'm forever fighting the passage of time.

With ADHD, I’m forever fighting the passage of time.

It’s 3 AM on a Saturday night, and I’m not even close to being ready to sleep. Am I out late partying like some other college students? No, I’m unwillingly sitting on the couch doing nothing and putting off going to bed for no good reason, after trying and failing to get any homework done all day long.

I am full of energy all the time. But the problem is, I can’t focus any of it, so it’s completely useless. I go from one thing to the next without finishing anything. I try to complete a task, but there’s always something that catches my attention before I even realize I’ve become distracted. My mind is always buzzing with new ideas, forming connections and taking in the world around me.

I have a big problem with all the jokes about ADHD and people saying they’re “so ADHD” or “just a little ADD today,” because for me, the condition is a daily struggle that can get in the way of everything I do. My inability to concentrate has, in the past, been completely disabling to the point that my mom used to stand outside my bathroom door to prompt me through the three-step process of getting ready for bed. If she didn’t, I could take as long as three hours.

Although I certainly had the classic, sudden-onset OCD characteristic of PANS when I was eleven, the sudden appearance of ADD was the most obvious and alarming for me and my family. I went from being a straight-A student who always got my work done easily to taking half-an-hour to read a single page of a textbook.

Overnight, it became as if I were in slow-motion. I would get “stuck” sitting on the floor of my room for hours because I lacked the willpower or mental energy to get up—even though I wanted more than anything to do so. I was so embarrassed and angry at myself for being that way, yet I felt utterly powerless to do any differently.

Over the years, after being diagnosed with ADHD Inattentive Type, I tried Concerta, Vyvanse, and even Nuvigil, and none of them ever helped my concentration—except perhaps Nuvigil, to a mild extent. I was sent to therapists to learn organizational skills and coping strategies, and none of them ever worked. How could severe ADHD suddenly develop in an eleven-year-old, and why didn’t the treatments help?

But when I was seventeen and finally figured out I’d had OCD for years, I thought maybe I’d found the missing piece in the puzzle. My psychologist told me that OCD can often be misdiagnosed as ADD or ADHD, so maybe with OCD treatment, my “ADD” symptoms would disappear. Indeed, a lot of my problems with reading had stemmed from a mental compulsion of constantly cancelling out all of the intrusive thoughts that the words on the pages triggered.

But today, even though my OCD is minimal, I still have trouble finishing a task, I still get overwhelmed when starting any assignment, and I still have too much energy to focus on one thing. By any metric, I have signs of classic adult ADHD—as does my dad, who definitely doesn’t have PANS. If ADHD is genetic, is this just how my life is always going to be?

Yet I believe there is one last piece of hope… There is no such thing as late-onset ADHD, unless it’s been caused by a brain injury or another disorder (ahem, PANS!).  People don’t just suddenly develop ADHD symptoms when they’re eleven, and I had no signs of ADD or ADHD all throughout my childhood until the other PANS symptoms showed up. So maybe, just maybe, my brain is still healing, and this ADHD struggle will someday end.

But even if I’ll always have some ADHD, it somehow hasn’t prevented me from making it through two years of college (albeit with a lot of determination) and from going after my dreams.  I may struggle, but I’m not going to let it stop me…

Why I’m Glad I Got Sick

With PANS, getting sick has always been so much worse than just a runny nose...

With PANS, getting sick has always been so much worse than just a runny nose…

It was the first full week of class, and just like Freshman year, I had gotten sick. My body ached. My head pounded. I felt exhausted.

When you have PANS, getting sick is often far worse than just feeling tired and congested—in the past, a simple virus could send me into a full-blown flare of severe OCD, panic attacks, involuntary movements, and even hallucinations. So naturally, when my nose started running last week, all I could think about was how much I didn’t want to flare. I couldn’t have cared less about the cold symptoms themselves.

And so for the next few days, as I gorged myself on oranges and took copious amounts of Vitamin C and tried to rest as much as possible, I braced myself for the coming disaster. I thought about how it used to feel when I flared—that sensation that someone was taking my mind out of my head. I remembered those times when I felt like a monster was swallowing me up, and I dreaded this impending doom.

Last week, I waited for the flare to come… And waited… But it never really came.

True, I did have a slight increase in symptoms: some barely noticeable tics, a little bit of memory problems, and some OCD. The worst was one night when I was afraid that everything in my apartment was contaminated with MRSA, but I was able to mostly ignore it, go to bed, and wake up the next day with the obsession gone. So I wouldn’t consider the symptom increase a flare, because it was mild and didn’t last long, and I never felt like I was completely losing myself.

In a strange way, it was a privilege to just get sick and feel bad for a few days. This time, I didn’t have to do a Prednisone burst and have my mom stay with me while I was almost out-of-my-mind—I just needed to rest to get over the cold like anyone would have to.

You see, I haven’t gotten sick without flaring in at least two years. During Freshman year, that seemingly harmless sore throat set my whole life on fire, triggered sleep issues that led to a misdiagnosis of narcolepsy, and marked the beginning of a year-long decline. But this time, so far, whatever I caught has had no serious consequences.

For months, I’ve been saying that I’d know I was better when I could get sick without flaring, and now, it’s happened. I’m not glad to have been under the weather this week, but I’m glad that getting sick confirmed I’m no longer sick with PANS as I once was. Although in certain areas of my life I still struggle, I’d like to think that now, I’ve not just recovered from this virus—I’ve recovered from the worst of PANS.

The New Me… Maskless

Getting better is like taking off a mask...

Recovering from PANS is like taking off a mask…

A few days ago, as I strapped on my backpack and headed out the door for the first day of the school year, I couldn’t help but be excited to start my first semester as a healthy person. How wonderful it would be to do college without debilitating neurological symptoms!

As I’ve said in previous posts, I never know how ill and out-of-it I’ve been until I get better. While I’ve always known when there was something “off” about me, I’ve not always been aware of the severity of it at the time—by definition, this is partly what made me “out-of-it.” The more I’ve recovered, the more of myself I’ve realized I’d lost to PANS.

Few circumstances have revealed my losses and subsequent recovery more than going back to school this week because of the stark contrast between this year and last year. It’s been made clear to me by how much easier everything is (even though I’m swamped with homework) and by others’ reactions to the new me—or more accurately, to the real me that many of my friends have never known.

Last fall, it was terrible going back to class, sitting at my desk with obvious and constant muscle jerks that I’d developed overnight during the summer. And I knew everyone could still see a large bruise on my arm from a failed IV stick, along with a puffy moon face and the worst acne imaginable from high-dose Prednisone. I was sure that my classmates who’d seen me before must’ve been wondering what happened to me over the summer, but I was too ashamed and traumatized to explain.

Perhaps the worst part about going back to school last year was that anyone I’d known well from Freshman year could tell that I was hardly even a shadow of myself, not because I was pale, moon-faced, and too thin, but because my personality had evaporated.  The brightness in my eyes was gone. I didn’t look at people—I looked “through” them. Conversations washed over me, because I couldn’t understand or concentrate on what was being said. My friends later admitted that I seemed distressed and not completely there.

During that time, I once had a nightmare in which someone forced me to wear a terrible mask everyday, but that’s exactly how my life felt—I had been forced to wear terrible symptoms all the time that obscured who I truly was.

But now, that mask has fallen off, and I’m not ashamed of who I appear to be.

So this year, as I walked (yes, I walk just fine now) through the halls between classes and later met with my professors, I got all sorts of wonderful and interesting reactions to the face everyone can now see without the mask:

“You seem a lot calmer than last semester.”

“You seem to to be concentrating well.”

“You look so healthy!”

“You look great!”

“Have you been running a lot? I can tell you have!” (This person doesn’t know about my struggles, so running was how she accounted for the change.)

While it’s disturbing to realize how far gone I once was and to know that my illness may have been more obvious than I thought, I’m glad that everyone sees the real me now and not that wretched mask. I’m so ready to dare hope I’ve taken it off for good…

Time to Pull Out the Textbooks Again...

Time to pull out the textbooks again…

This week, I’ll be starting my third year of college. While this may not seem like a big deal, to me, it feels like a miracle, considering how sick I was just a couple months ago.

I’ve been doing very well ever since my tonsillectomy. However, it’s one thing to be well while resting at home and taking it easy; it’s another to stay well while keeping up with academics and everything else that goes along with college. My remaining symptoms could interfere tremendously with school work: difficulty concentrating, reading comprehension issues, task inflexibility, and some other executive function problems. How can anyone do college with these symptoms?

Sometimes, I still feel bad about myself for having such a hard time doing the simplest things—just getting ready for bed and planning the next day can be an ordeal because of my cognitive symptoms. Sometimes, I think they’ll never go away, because they’ve been with me for the past nine years with no break. Is this always how I’m going to have to live? How long can I keep pushing past these obstacles?

As I’ve been packing and unpacking my things this week and making the journey back to school, I’ve been remembering how terribly difficult the last school year was with all of the cognitive symptoms, frequent flares, depression, panic attacks, and bad OCD.

I’ve also been remembering how exhausting my first year of college was, when I tried to function and go to class but instead spent the majority of each day trying (and failing) to stay awake…  After as much as twenty hours of sleep.

This week, I’ve been remembering all of the lonely nights during these last two years of college when I’ve crumpled into a bawling heap on my dorm room floor, wishing I hadn’t decided to stay in school while so ill.

College, so far, has been anything but what I dreamed it would be. But now, I’m beginning to hope that this year will be different.

Today, I’m much better than I was even a few months ago, so I’m choosing to believe that this year is not last year—everything won’t be miserable this time. This year, instead of putting all of my limited effort into earning straight A’s, I can start learning to thrive in all areas of my life. This year, I can finally enjoy my college experience.  This year, I can pursue the dreams my illness tried to take away.

I don’t know how I’ve made it through two years of college with PANS and a 3.96 GPA, and I don’t know how much longer I’ll have to continue working around my cognitive issues, but I do know that this is a new year and a new chance. I just have to let go of the pain of the past and the anxiety of the future and hold onto the opportunities I have now as the (mostly) healthy person I am.

Am I Twenty or Twelve?

P1030195-small

A flower is mature, yet fragile and innocent… Like me

After battling PANS for the past nine years of my life, I’ve been forced to grow up too quickly while being stuck as a child. I’ve had to mature to face up to my circumstances, but I’ve had to count on my parents to take care of me more than most others my age have.

At twenty years old, I’ve never held down a consistent, weekly job. I’ve never had a boyfriend. I’ve never gone on anything beyond a day trip with my friends without an “adult” present. Over the last year, I’ve let my parents make many decisions for me, because I’ve known I couldn’t trust my own judgement. In many ways, I feel like a young teenager.

On the other hand, I aged twenty years the night that my OCD first came on. I realized that your whole world could be turned upside down in one moment. I shouldered the burden of upsetting intrusive thoughts for six years without telling anyone. I learned what it was to live in constant pain—physical and emotional—and to go on in spite of it. I figured out how to overcome tremendous obstacles in order to graduate high school and eventually get accepted to my dream college.

As a result of PANS, I’ve gained a perspective on life that some people twice my age don’t have. After fighting this utterly debilitating disease, I’ve learned to not take life and health for granted. I’ve learned that our brains and minds are fragile—but that human beings can be unbelievably resilient. Not a day goes by without me thinking about how fortunate I am to be alive and (mostly) well.

The trouble is that being both young and old at the same time makes it hard to relate to others of the same chronological age. I can’t party and go places like my peers do, because I don’t have the mental energy, and I’d prefer to get a good night’s sleep. This is preposterous to so many people. Why should a twenty-year-old have a bedtime? No matter how hard I try, even when I feel great, I can’t just be carefree anymore. I feel old, because my experiences have stirred up the waters of worry and cautiousness about every situation.

At the same time, I feel childish and somewhat inferior for my lack of stamina and independence. I sent in an application for my first real job this semester, and it got accepted, but I decided that I couldn’t count on having fifteen hours a week to spare—and this while taking a reduced course load to accommodate my lingering cognitive challenges. So will I ever become independent? Am I always going to feel like a woman-child, reliant on my parents for everything?

I wish I could just be twenty. I wish I could grow up and be an adult. I wish I could get younger and not worry about my health.

There are some things doctors don't tell you about recovery...

There are some things doctors don’t tell you about recovery…

Last week, I celebrated the one-year mark since my first IVIG. It’s hard to believe it’s already been a year, yet my recovery has seemed to go so much slower than I thought it would.

There are many things that no one ever told me before my first IVIG. I was warned about the fatigue and nausea and headaches afterward and the post-IVIG flare that would come in a few weeks. I was even warned it could take a year before all my symptoms went away, but I was never told what that year might be like.

So I decided to write a letter to my pre-IVIG self. Everyone has a different recovery road. Some people heal in less time than I’ve taken, and others take longer. This is what I would’ve found helpful, but I’d love to know what my fellow PANS warriors wish they’d known before treatment, too…

Dear Me,

You’re in for a crazy ride. You’re sick right now (and don’t even realize how bad it is), but you’re going to get better. You’re going to return to yourself. There will come a day when you are tormented no more. There will come a day when you enjoy your life again. There will come a day when you can spend time with your friends. There will come a day when you are able to eat without getting nauseous and anxious. There will come a day when you don’t have involuntary movements during every waking moment.

But it’s going to be a hard journey that will require you to fight harder than you think you can fight. Along the way, you will have awful flares. You will have times when you are terrified of yourself again. You will have times when you want to give up. You will have times when you will be mad at your parents for wanting to save you. But you’re stronger than you’d ever dare to believe, and you’re going to come out of this more alive than you were before you got ill.

During those times when you seem to be getting worse or going in circles, remember that there isn’t a straight path to recovery. Sometimes, you will take two steps forward and one step back. Other times, you will take two steps back and one step forward. IVIG is the beginning of recovery—not the end. Unfortunately, recovery doesn’t happen overnight like the onset of PANS—it often happens so slowly that you won’t notice you’re getting much better.

Still, even if you know you’re moving forward and that PANS isn’t a permanent illness, there will be moments when you’ll be sure you can’t go on another day. When you feel like that, take some ibuprofen and remember how far you’ve already come. If you’ve made it this far, you can make it the rest of the way to healing.

It will be a long road, and you’re going to feel sad and angry and confused sometimes. Lean on the people who care about you, and don’t look down on yourself for fighting this disease. It isn’t your fault. Give yourself permission to take it easy, and don’t feel bad about it. You are battling a serious illness, and your body needs rest in order to heal.

There will be a lot of days when you don’t feel like yourself, but you are still in there. You are ill, but you are not broken or any less of a person for having this disease. Don’t give up. Better days ahead.

“You’re Better.”

It's a new day!

Everything is different now, like a new day

 “You’re better.”

Those are two words I never thought I’d hear from my doctor. But this week, I finally did.

As my mom and I made the trip to my doctor’s office this week, I couldn’t help but feel that things were different this time—and most of all, that I was different. I was more present. I was more aware. I was bright-eyed again. I was finally myself.

This time, unlike my last visit in May, I opened the office doors myself, grabbing the handles without flinching. I pushed the elevator buttons. I sat in the waiting room chairs without thinking about Lysoling myself when I got home. I realized that contamination OCD was finally letting me go.

As I waited and heard the beeps from the IVIG pumps of other patients in the rooms down the hall, I figured out that it was a year ago to the day that I was sitting in those same infusion chairs for the first time.

But one year, a tonsillectomy, and an additional IVIG later, I’d returned—literally and mentally.

My transformation over the last year has been nothing short of miraculous. Last summer, I could hardly walk, I couldn’t eat much, I couldn’t stay awake, and I could never be still because I constantly had involuntary movements. In those days, I would look in the mirror and be frightened, because the person staring back at me wasn’t me—it was a burdened soul whose face showed the deepest torment and despair. It was someone who only looked like me, who carried the weight of the world in a malnourished body.

But when it was my turn to see the doctor this week, after I reported on my lack of symptoms and the strange tonsil infection that was no more, and after she saw that the dark cloud that once enveloped me was gone, I received the pronouncement I’ve dreamed of for the last year:

“You’re better.”

I’ve known I was 95% symptom-free for a few weeks, but to have a doctor say so made the elation and amazement finally hit me. Better… In remission… Done with this terrible disease… How can it be for real?

As for the other 5%, I still look forward to getting it back. I’ve been having trouble with speech and word retrieval lately. Sometimes, sentences come out of my mouth as nonsense syllables with the rhythm and tone of normal speech, and the English words I do say aren’t always the right ones. Sometimes, I have a hard time comprehending what I read or what people say to me.  Sometimes, I still get tics, and once in a blue moon, I fall down when I walk from my legs giving out.

“Executive function problems and movement issues are often the last things to leave,” my neurologist said. But the fact that I have so few other symptoms and have improved so dramatically after tonsillectomy suggests that it’s only a matter of time before I get to 100%.

If all goes as planned, I won’t be going back for any more follow-ups for another year, and I’ll be continuing on antibiotics, Plaquenil (an anti-inflammatory), Wellbutrin, and the same vitamins/supplements at least through this next year. But I’m tapering off Prednisone for good now!

It’s hard to believe that I’m 95% symptom-free, in remission, and not expected to relapse. I’m shocked to think that my nine-year nightmare is finally coming to an end.  Most of all, I’m so relieved and grateful.

To anyone out there who thinks they’ll never recover from PANS… Keep fighting, and you’ll get there, no matter how hopeless it seems right now. Don’t give up. Someday, you, too, will hear those powerful words: You’re better.

Flaring feels like falling off a cliff.

I thought for sure that I would end up here…

“Let’s climb up over here,” I told my hiking partner, my feet digging into the mud of the riverbank. “This looks like the easiest—aah!” I fell through a heap of brush and sticks that I’d mistakenly trusted for my next step. I caught myself between a log and the dirt, banging up my knee and back on the way down and scraping my arm on the twigs.

“Are you okay?” my friend yelled from the bottom.

“Yeah. I’ll just be a little sore tomorrow,” I reassured my friend as I pulled myself up and continued the ascent.

That day, I’d decided to take a friend on a hiking trip. I’d been through the area many times and had always admired the sandy river beach below the trail, but I’d never ventured down to it. I figured that bringing a friend along would make the feat a little safer.

In hindsight, it may not have been the best idea—we had to trudge through a creek straddled by spider webs to get down to the river and then hack our way through brush so thick that we wouldn’t have noticed a mountain lion if it had been a couple feet in front of us. It was only a ten-foot drop down to the river, but the bank I attempted to climb was nearly vertical.

I eventually gave up on the climb, and my friend and I found a better way back to the trail farther downstream, but the next day I was in for a surprise: my knee was hugely swollen. I must have hit it harder than I’d realized.

As I stared down at the inflammation around my knee afterwards, suddenly, it occurred to me: why wasn’t I flaring?

Just two months ago, almost anything that taxed my immune system at all would make me flare. I once fell on the sidewalk on the way to class one morning, scraping my leg, and that night, I started ticking like crazy, having highly disturbing intrusive thoughts, and falling into depression so badly I couldn’t leave my room to get dinner in my kitchen.

Another time, I got a small second-degree burn and flared so much that my mom had to come stay with me. On yet another occasion, I strained my groin on a run and later spent half an hour screaming, not from the physical pain, but because my OCD was suddenly horrendous. And of course, I always flared when I had the slightest hint of a cold.

Logically, with my knee as swollen as it was, I should’ve flared. But I didn’t. In fact, I haven’t flared since the beginning of June. This time, the only thing I noticed was the injury itself.

While I’m not exactly happy about banging up my knee, I’m relieved that it showed I’m heading for a time when I won’t have to be afraid of flaring at the slightest scrape or sniffle. In a strange way, I consider being able to get slightly hurt and only worry about packing on ice for a couple of days a privilege; there was a time when it would’ve meant losing myself for a few days until a Prednisone burst kicked in.

Aside from the fact that I didn’t flare, it’s amazing in itself that I’ve gotten to a point where I can call up a friend and invite him on a hiking trip.  Not too long ago, I had days where my social anxiety kept me from even speaking to my roommate.  On top of this, being able to walk a few miles on a hike without my legs collapsing underneath me, as they once did dozens of times per day, is remarkable.

My knee is fine now, but I don’t think I’ll be climbing down to the river again any time soon. And you know what? I also dare to believe I might not be falling off my mental cliff into a flare for a while, either…

OCD No More?

Leaving a switch on can be bad news for my OCD...

Leaving a switch on can be bad news for my OCD…

Ever since my tonsillectomy, I’ve noticed my OCD dying down significantly. I’ve found myself touching cabinet knobs in the kitchen that I haven’t been able to touch in over a year. I’m not checking my room for people trying to hurt me. I’m not washing my hands all the time.

I’ve been in CBT all summer, but the improvement I’ve seen seemed to happen much more suddenly and with much less effort than what I normally get from using therapy techniques alone. It was as if maybe, I had less brain inflammation, because I no longer had an infection in my tonsils.

But one evening, I was in the car with my parents heading to church, and out of nowhere, the OCD thoughts came roaring back:

You didn’t turn off the stereo, so now the whole house is going to burn down while you’re gone. You didn’t bring your computer with you in the car, you haven’t backed it up, and now, you’re going to lose five years of work when it burns up.

My heart began to race as I wrung my sweaty hands together in the back seat.

“Hey… I left the stereo on. Do you think that’s okay?” I asked my parents.

“Yes, that’s fine. Nothing will happen,” my mom assured me.

But that wasn’t enough. My brain wanted me to ask again and again, or better yet, go back home and turn everything off.  I wanted some reassurance that my thoughts were lying to me (even though part of me knew it was all ridiculous). But after the months of therapy I’ve been through, I knew that no matter how long I kept asking, I’d never get the certainty I craved.  So I stopped and sat there with the anxiety instead.

It wasn’t easy, though. The anxiety felt like someone was scraping their fingernails against a chalkboard inside my head. It was as if I had to crawl out of my skin, but I couldn’t. OCD is like a little brother that keeps poking you all day long, no matter how many times you ask him to stop.

But like a naughty little brother, if you can learn to ignore him and not react, eventually, he will go away.

To calm my anxiety, I tried some “box breathing:” inhale for five seconds, hold your breath for five seconds, exhale for five seconds, hold your breath for five seconds again, and repeat. I’ve never been a fan of breathing exercises, but this technique actually works for me.

By the time we got to church, I was feeling much better. But of course, I was still waiting for the rest of the flare to come. If my OCD had suddenly spiked, wasn’t I going to lose myself at any moment? Wasn’t I about to start doing the chorea dance again? Wasn’t I about to fall into a deep depression? Not necessarily.

My psychiatrist told me that he expects I’ll always have a tendency toward OCD to a more mild extent, even when I’m cured from PANS. He believes that people with PANS are pre-disposed to OCD, so I shouldn’t expect it to completely go away from IVIG or tonsillectomy or any other medical treatment.

He wasn’t trying to negate that those things help OCD in people with PANS. He was just saying that, like everyone else with OCD, I have to treat it with therapy so that I know how to manage whatever tendencies and learned behaviors may be left when I’m otherwise symptom-free.

I must admit that I was a little discouraged when I heard this, but there’s a bright side if he’s right: just because I have one hour where my OCD acts up a little doesn’t mean I’m “flaring” in the PANDAS sense of the word. Just because my OCD is worse one night doesn’t mean I have to load up on Prednisone and prepare for battle. If I do have some degree of “normal” OCD, then it will simply act up occasionally, especially under stressful circumstances—but OCD can be managed.

Sure enough, the rest of the PANDAS symptoms never came that night. Maybe it was just a “flare” of regular OCD. Maybe it was a very mild PANDAS flare. No one knows. But what I do know is that, aside from that night, my OCD is dramatically better than it was a couple weeks ago.

To me, I think the most important thing for PANDA’s is to treat both the immune response causing the worst of the OCD and to do CBT to deal with the OCD in the meantime—whether it’s purely caused by inflammation or if it’s also something we’ll always be prone to.

Could a dirty sink trigger an autoimmune attack in my brain?

Could a dirty sink trigger an autoimmune attack in my brain?

Serratia marcescens… What in the world is that? An Italian dish? An exotic island town? Neither. It’s the name of a bacteria that you’ve probably never heard of—a bacteria that had taken up residence in my tonsils.

Serratia can be found anywhere, but it thrives in hospitals and in damp spaces like bathrooms. If you see a pink or orangish ring around a drain (such as mine, pictured above), it might be Serratia. Most people never have trouble living near the organism, but for some, it can cause serious problems. It can attack the heart. It can cause urinary tract infections. It can live in the gut. It can even cause bacterial meningitis. For me, having it in my tonsils was likely an ongoing trigger making my immune system attack my brain.

But I never would’ve imagined I had this bacteria in my tonsils, especially since they looked small and healthy before they were removed. Although I’ve been having fewer PANS symptoms since my tonsillectomy, I was incredibly skeptical that there would be any infection found, let alone something as strange as Serratia. For years, I’ve been accustomed to undergoing all manner of blood work and tests only to have negative results.

But the other day, as I logged into the online portal to read the pathology report on my tonsils and adenoids, I was shocked to see the words, “Serratia marcescens tonsillitis.” The bacteria were not only in both of my tonsils, but in my adenoids as well, along with white blood cells. Interestingly, there wasn’t a trace of Strep or Mycoplasma pneumoniae or MRSA or any of the other more common findings in PANDA tonsils.

After months of not knowing why I was flaring every two to three weeks, I finally had a possible explanation.

I called my GP and shared the news, and she wanted to rule out an infection in any other part of my body. This meant sticking what looked like a long Q-tip up my nose, another around my butt, having me pee in a cup, and another needle-stick in my arm for a blood culture. All of these cultures came back negative, so it turns out that I’m infection-free now!

It’s unnerving to think that I had no idea there was a terrible bacteria living in part of my body this whole time. It’s even more unsettling to realize that an occult infection was essentially making me lose my mind. This is the kind of thing that could be the premise of a Sci-fi horror movie… But it’s just real life for me.

Although having this bacteria in my tonsils could explain my very frequent flares, I will always wonder: how did I get Serratia in the first place? Maybe it was the dirty sink or my orange-stained shower curtain. Maybe it wasn’t. I’ll never know. All I know is that I’m 90-95% symptom free with my tonsils and the infection gone. Whatever provoked my immune system to attack my brain and ruin my mind is gone now.

So what’s next? I’ve gone seven weeks without a flare—the longest flare-free period in the last year. If I do have another major flare again, my doctor wants me to do a three-week course of Bactrim instead of a Prednisone burst, because maybe, I’ve been flaring whenever I’m fighting off Serratia. Unfortunately, S. marcescens is resistant to many antibiotics, including penicillan-based antibiotics, so the Augmentin XR I’ve taken since October has offered no protection against it.

As for the sink… My mom has since scrubbed it out with bleach—same with the shower curtain. In order to kill this bacteria, you need to use bleach or hydrogen peroxide; it’s resistant to many other household disinfectants. I know this because, strangely, I did a long Biology report in high school about preventing S. marcescens infections.  For all I know, the whole time, the bacteria was living in my own tonsils. Oh, the irony!

Now, I’m Serratia-free, and my bathroom appears to be, too. I may not know for sure how I became infected, but one thing is certain: I’ll never again look at another pink ring in a sink in the same way!

How can you sleep when the PANDAS bear follows you to bed?

How can you sleep when the PANDAS bear follows you to bed?

Tap, tap, tap.

It’s 2 AM, and someone is at my bedroom door. I bolt awake and hold still so they don’t know I’m in the room. I slowly reach for my phone and think about texting my parents to come help me.

But I’m all alone. No one is at the door.

I’m hallucinating again.

I try to tell myself that what I heard wasn’t real. I try to tell myself that my brain is playing tricks on me again. But no matter what I do, I’m afraid. I may be twenty years old, but sometimes, I still ask my mom to sleep in my room because falling asleep can be so frightening.

When I’ve been at my worst, my hallucinations have also happened while I was wide awake. Usually, these hallucinations were just colored blobs floating around me, but the first time it happened, I was twelve and too scared to tell anyone, so I wrote about in my journal:

Journal Entry

“I was lying in my bed… When I looked at the lower left hand corner of the bed, I saw a clearish thing with two black dots, about two inches from top to bottom. I think I saw a spirit of some kind. Be it an angel or a fallen angel or something else that I’m unaware of, I don’t know. I’m a bit freaked out right now.”

If you think seeing “spirits” around my bed or having an auditory hallucination of someone knocking on my door is terrifying, last fall, I woke up at five o’clock in the morning with a giant black bear snarling at me next to my bed. In the moment, it was completely real to me, and I screamed. But I quickly realized the only bear in my apartment that night was the PANDAS bear in my brain…

More recently, if I’ve hallucinated, they’ve been mild auditory hallucinations such as the tapping noise at my door, and they only happen while falling asleep or waking up (hypnagogic or hypnopompic hallucinations). Now, I’ve managed to go several weeks without a nighttime hallucination, but I still worry about it happening sometimes.

Right now, what makes bedtime so difficult is that, for the first hour I’m in bed, I often go through periods of being half-asleep and then suddenly startling awake. My thoughts begin to turn into half-asleep dreams, and out-of-nowhere, a troubling (and often irrational) idea comes and disturbs me so much that I wake up:

Oh no! I say to myself. I must not believe in God anymore.

My eyes spring open, and I try to talk myself down from the troubling thought: It’s just my OCD. It’s not true. I can’t decide anything about my faith in a state like this. I need to just go back to sleep.

A few minutes later, I fall asleep, and it happens again:

Oh my gosh! What would’ve happened if I’d fallen off that cruise ship I was on five years ago?! I could’ve died.

Just as I’ve calmed my mind and gone back to sleep, I’m bothered again:

Wait a minute… Did I really pass all my classes this semester? Wasn’t there something else I needed to do?

The first week after my tonsillectomy, after a couple days when the swelling went down, I had no trouble falling asleep because of the narcotics. Now that I’m healed and off the pain killers, I’ve had less nights of startling awake with fear, but I still wake up more often than I should. Bedtime still isn’t easy, because I’m still anxious about getting in bed in the first place.

The way I see it, bad things happen in bed… My OCD onset happened when I was eleven while I was in bed. My worst panic attack ever and the start of my chorea movements happened last summer while I was in bed. I’ve seen growling bears and floating “demons” while in bed. I’ve woken up with my arms completely numb and paralyzed in bed. I’ve woken up screaming for no apparent reason while in bed.

Sometimes, I think a lot of the anxiety I experience now isn’t a symptom of my disease anymore so much as a consequence of having lived with it for so long. How could I not be anxious about a part of my day that has been so unpleasant for me for so many years? How could I not worry about frightening hallucinations happening again?

Earlier in the summer, my nighttime symptoms were so bad that my psychiatrist wanted me to take anti-psychotics before bed. But now, I think the best thing for me is to work through the anxiety and relearn to think of sleep as, not a time of torment, but a time of rest.

So Many Popsicles

My breakfast, lunch, and dinner!

When I first found out that I needed a tonsillectomy, I made three appointments with three different doctors at two hospitals. While this may sound excessive, based on past experiences, I knew the first doctor or two might refuse to do the surgery as soon as I mentioned PANDAS, especially since my tonsils looked healthy on the outside.

Indeed, when my records were sent to the first doctor, my appointment was cancelled within two hours and my case passed to a different doctor in the practice.

Sadly, more often than not, telling a doctor you have PANDAS is just asking to be laughed at and dismissed. Many doctors don’t believe in PANDAS (let alone the newer term PANS) because they’re unaware of the growing research and evidence, and others don’t know enough to take it seriously.

Most doctors, if they believe PANDAS/PANS exists at all, assume it is extremely rare and only presents in a young child as an obvious, overnight onset of OCD. This is certainly the most common presentation, but according to Dr. Swedo, the idea that PANDAS only exists in prepubescent children was an arbitrary distinction for the original study. Still, in the minds of most doctors, to have me, a twenty-year-old, say I have this obscure pediatric disorder is preposterous (never mind that it started before I hit puberty).

While my case being dropped by the first doctor seemed like a bad sign, when I met with the new doctor at my appointment, he knew more about PANDAS than most and actually agreed to do the surgery after I told my story and explained the severity of my symptoms.

So that’s how I found myself last week trustingly lying in an operating room at the same hospital that had failed me so many other times over the years.

This was the hospital that discharged me from the ER last summer without a single test when I suddenly had severe chorea movements. This was the hospital whose neurologists had said PANDAS was “too poorly understood” to be considered as an explanation for my rapid decline. This was the hospital whose psychologists completely missed my severe OCD when I was twelve. Disturbingly, this was also the hospital consistently ranked as one of the best in the nation.

But last week, the hospital redeemed itself to me.

As I waited in the pre-op room, sniffing, grunting, and twitching involuntarily from my latest tics, I actually felt as though everyone not only believed me, but actually wanted to help me. I usually feel like I have to fight for every little bit of care I get, but this time, they were fighting for me. This time, I didn’t have to partially cover up my diagnosis by only saying I have Autoimmune Encephalitis (but not PANS). Everyone knew my full diagnosis, but they were all-the-more eager to help.

My operating room was crowded with residents, interns, and medical school students trying to get a look at this unusual creature—this real, live PANDA bear—because they saw that we exist outside of a “theoretical disease” briefly mentioned in their textbooks. There were whispers of my case in the halls—not because they were mocking my diagnosis as usual, but because they were fascinated. These young doctors genuinely wanted to learn about PANDAS/PANS so that someday, they could perhaps know how to treat their own patients with the disorder.

For the first time, doctors at a regular hospital were giving my illness the attention it deserves—and giving me the treatment I needed.

If there’s one word I felt to describe the day, it would be “hope.” I felt hope because more doctors finally believed in my disease. I felt hope that someday, other PANDA’s from my hometown wouldn’t have to travel to out-of-town specialists for treatment—someday our own “world-class” hospital might treat more of us. Most of all, I felt hope that I had finally found the treatment that would bring me back the rest of the way…

Ever since I came out of surgery, I haven’t had a single tic.  The day before, I’d developed two new vocal tics that got more and more disruptive as the day went on.  I know—tics usually increase with anxiety.  But why have I also found myself suddenly carrying out fewer and fewer compulsions this week—and not getting extremely anxious over not doing them?

As always, there are a lot of variables at work.  Still, I can’t deny that, aside from a sore, gnarly-looking throat and fatigue from leftover anesthesia, I’m feeling great in every other way.  (And I’m not in nearly as much pain as people tried to scare me into thinking I’d be in.)  To me, what happened this week is a good enough reason to keep hoping for continuing progress.

Goodbye, Tonsils

Dairy-free ice cream

I don’t even wanna know how many pints of this I’m about to eat…

With one day left until my surgery now, it’s been an interesting week. For the first time in eleven months, I’ve stopped antibiotics completely, so as not to influence the tonsil and adenoid cultures that will be performed. The doctors also told me to stop all supplements, so my pill cases have been extraordinarily empty these last few days (a much-welcomed sight!). Although I’ve had a slight increase in tics, trouble concentrating, and more trouble falling asleep, I haven’t noticed nearly as much of a difference as I expected.

Strangely, after the flare a couple weeks ago, I’ve been doing quite well. I still have a decent amount of OCD and significant problems with falling asleep, but I barely have any choreiform movements. I’ve been walking around the house expecting that weird, limp feeling in my legs that makes me fall down, but it just doesn’t happen anymore. I’m not even depressed, either.

Naturally, this has me wondering why I’m about to go through all this pain and hassle to get my tonsils out when I seem to be doing okay now. What if I’m actually heading for healing now? What if they culture my tonsils and find there was nothing in them? I’m twenty. I legally don’t have to do what anyone tells me. I can decide to back out of the surgery.

But what if I am about to flare again? What if my tonsils are riddled with strep or another infection?

So I’ve resigned myself to the fact that I don’t really have a choice in getting my tonsils and adenoids out. I have to comply. All of my doctors—including my neurologist and my psychiatrist and obviously the otolaryngologist who is doing the surgery—agree that it needs to be done.

I’m trying to not let myself be nervous, but it’s almost impossible for someone who has existing anxiety issues. My tactic is to not think about it. I comfort myself with the knowledge that I won’t remember the surgery since I’ll be asleep. I try not to let myself think about the idea that the doctors could make a mistake. I try not to worry about having bleeding problems afterwards that send me to the ER (it apparently happens more frequently in adults).

So what about the inevitable pain afterwards?  (I’m warned that it will hurt a lot more since I’m an adult.) Well, that’s why I have narcotics. I didn’t even touch my Percocet when I had my wisdom teeth out a few years ago, though, so I like to think my pain threshold is pretty high. Besides, I’m sure that there is absolutely nothing more painful than my OCD once was. If I got through that, then no sore throat—no matter how miserable—will get me down.

My surgery won’t be until the early afternoon, which unfortunately means I have a whole morning to worry about the procedure. But because I have the whole morning, I decided that I’m going to go for a run. For me, running makes everything better. It also has the added benefit of making me not hungry for at least an hour afterwards (and I have to fast for the surgery), so if I time it right, I’ll have just enough time tomorrow morning to go for a run, get rehydrated, take a shower, gather my things, and then head to the hospital. I’m getting rid of all the extra time I could spend worrying.

Still, it might not be an easy couple of weeks. Even if I do like ice cream, it’s not going to be a fun time. But I’m going to get through it. Who knows? Maybe it will be apparent that I needed the surgery after all. Perhaps saying goodbye to my tonsils will be saying hello to complete healing.

Cake

This week marks the one-year anniversary of my blog. To say it’s been an incredible year doesn’t even begin to describe it. I’ve come such a long way since I first started writing about this difficult journey—and so has this blog…

Last June, I’d hit rockbottom. I was in such bad shape and declining so much that I thought I’d die. Although I was otherwise dysfunctional to the point of not being able to walk, not eating, and not being able to speak coherently, I was able to write. In the countless hours my family spent researching PANDAS/PANS on the internet, they’d never found a blog written by a PANS patient. I thought maybe I could change that. I hoped that maybe by sharing my experiences, I could help someone else going through the same thing. So I started a blog.

I’ve been through so much in the last year of blogging… I finally got an official diagnosis of PANS. I had two IVIGs. I spent almost a year on Prednisone (and am still tapering off). I’ve had more horrific flares. I’ve re-started CBT/ERP therapy for my OCD. And next week, I will have a tonsillectomy and andenoidectomy. But I also ran a half-marathon and completed another year of college. Slowly, I’ve been getting my life back and shedding symptoms so gradually that I often barely notice. But yes, I’m getting better.

As I’ve shared every step of my recovery, I’ve had many amazing responses from you all. Some parents have said that what I’ve written has helped them understand what their child must be going through. Some have shared stories that make me cry—sometimes because of how much the person is struggling, other times because of an astounding recovery. Some parents have said my writing makes them cry because their family is going through the same thing. Some people have said things that helped give me the courage to keep fighting. Plus, I’ve had the opportunity to meet other teens with PANS.

The act of publishing my experiences (albeit anonymously) for the world to see has been of tremendous therapeutic value for myself, too.  Sometimes, writing has been the only thing I could make myself do, but being able to look back and see how far I’ve come has given me hope through the bad times.

The Dreaming Panda has been a humbling and unforgettable experience, especially as I’ve watched it turn into something that means something to people. Needless to say, every comment and private message has meant so much to me, because when I find out that my writing has touched someone or helped even in a small way, it helps me feel like something good can come out of this mess. While I’m never glad to hear that someone else is going through the same terrible things, I’m glad to know that maybe I’ve made just a small difference in someone’s life. So thank you for all of your responses!

As I head into this next year, I intend to keep going with The Dreaming Panda for a long time. Eventually, I plan to expand on this blog and make a book. I may be well on my way to recovery now, but sharing my journey has made me realize that there are thousands of other kids, teens, and even adults with a similar story—and some of them are far sicker than I ever was. Tragically, our illness has yet to be recognized by most doctors, hospitals, and even insurance companies. Our story needs to be told so that someday, it won’t take so many years for many of us to find the proper treatment.

So readers, I just wanted to thank all of you for the support, encouragement, and friendship you have shared with me along the way. I’m hoping that this next year brings complete healing and recovery for all of you and for me. 🙂

P.S. I’m looking for new topics to write about. I’d love to hear some ideas from you. Please share in the comments section!

Am I Nuts?

 

Nuts2-small

Recently, a new obsession has been poking my brain:

Am I nuts?

Given what my illness has put me through in the last year, it’s not an unreasonable concern. When I’ve had bad flares—which can consist of screaming out whatever disturbing thoughts are in my brain, running out of the house or throwing myself into walls, having all manner of bizarre involuntary movements, and being unable to focus my eyes—I would certainly appear “nuts” to an outside observer.

When I flare, I feel totally nuts myself, because so far, I’ve always maintained some sense that my behaviors are unreasonable (yet I cannot fully control them). I know that my unusual behaviors and obsessions are due to brain inflammation, but I’m concerned that others misunderstand me and secretly think I’m crazy. Even in flares, deep down, I still know who I am, but I worry that others can’t see me through the symptoms. I somehow also worry that everyone will think I’m nuts when I’m not in a flare.

If you were me, wouldn’t you sometimes wonder if you were, in fact, crazy—that it couldn’t possibly just be an autoimmune disease? If you daily lived with the knowledge that you could descend into frightening and bizarre symptoms at any moment, wouldn’t you feel you were some form of madwoman? I sometimes worry that my PANS isn’t real after all—that it really is “all in my mind” like I was told for eight years before my diagnosis.

One of the main symptoms of my illness is severe OCD and anxiety, so I naturally have a tendency to get stuck worrying about things that don’t even make sense to worry about. The fact that I worry so much only farther feeds my growing concerns for my sanity, since some of my anxieties and obsessions are quite irrational.

So I’m forever asking my parents, and sometimes my close friends, if they think I’m crazy. The answer is always no, but no matter what anyone tells me, I still worry. Being afraid of being crazy and constantly asking for reassurance on the subject can be a relatively common symptom of OCD, whether or not one has PANDAS/PANS. OCD is never satisfied and is never fully convinced. I want to be completely sure, with irrefutable proof, that I’m not nuts; such evidence doesn’t exist.

Like most of my obsessions, there’s always some small amount of truth in them—just enough to make me pay attention and worry about them. It is true that I act pretty strange during flares. However, I’m quite normal on most days. Besides, the fact that I’m concerned about my sanity proves that I’m not crazy at all.

Given that it’s my brain that was attacked by my antibodies, it’s understandable that I might question even my most basic assumptions about how I perceive the world. I don’t expect my anxiety about my sanity to relent any time soon, considering how frequently I still flare. But for now, I’ll do my best to ignore my OCD thoughts and believe that I’m not nuts—I’m a rational and intelligent person whose brain is irritated by bad antibodies. Most days, my illness isn’t obvious on the outside, so no one would have any reason to think I’m nuts.

PANS is a crazy disease; it’s a crazy reality that an infection or virus can trigger mental illness and behaviors that make one appear “nuts.” But people with PANS are not crazy—we are survivors, doing our best to get through each day and behaving rationally given the inflammation in our brains.

With PANDAS, it’s astonishing how much can change in one day. Last June, I developed a tic disorder and became unable to walk in just a few hours. I’ve spent the year that followed fighting to get my life back. One day this week, I flared again, and it’s already had astonishing repercussions…

After a week on Wellbutrin, I was starting to feel the closest to normal that I’ve felt in two years. It was like the summer before I went off to college—I had some OCD and anxiety but was mostly functional and otherwise healthy. Unfortunately, after five days of feeling great last week, I slowly fell back into depression. Then, I got a sore throat, a headache, and a cough.

Getting sick never just means being under-the-weather for a few days...

Getting sick never just means being under-the-weather for a few days…

A few days later, I lost it.

That night, I sat down in a recliner and cried for no apparent reason. I don’t remember what happened after that, but I ended up in the kitchen. I looked at the door to the street and thought to myself, I need to run.

I was too exhausted to actually leave, so instead, I slammed myself into a wall on purpose.

I didn’t actually want to hurt myself—I just felt like I needed to do it but didn’t know why. I think when a lot of PANDAs have flares, we’re not in control of anything we think or do anymore. It’s like an outside force comes and takes over. It’s my theory that our fight-or-flight instinct (controlled by the basal ganglia that’s irritated by our bad antibodies) goes totally haywire, telling us that we have to “fight” by doing strange actions.

During flares, I feel I either have to slam myself into a wall or run out of the house; this is my messed up version of “fight-or-flight,” but the only real danger is the malfunctioning instinct itself.

Thankfully, I realized what was happening, and I made myself go to the basement to tell my parents. At this point, I was sobbing and feeling utterly hopeless. A few minutes later, I began jerking violently. My movements were suddenly the worst they’d been in months.

The next morning, we spoke to my neurologist, and that’s when I got the news:

You need to get your tonsils and adenoids removed. There might be strep or another infection hiding in there.”

It’s not typical for someone whose had two IVIGs to continue to flare every two or three weeks like I do. I’ve been tested for all kinds of viruses and infections, and they’ve all been negative. Apparently, you can have something hiding in your tonsils and not have it show up in blood work. If I do have strep or another infection or virus in my tonsils, it makes sense that I’m having flares so regularly. Unfortunately, the only way to find out if the tonsils are the problem is to remove them.

At this point, I don’t much care what it takes to stop this disease. If surgery will do it, then fine. I’ve been warned that it could be very painful to have a tonsillectomy as a twenty-year-old, but you know what? I’ve been through so much worse. I’m not afraid of the pain.

But sadly, having surgery this summer means I might not graduate college on-time. I was counting on taking online classes from home to make up for the reduced load I took last year. How could I do research and write twenty-page papers on narcotics?

I thought about forgoing the surgery and continuing to force myself through my four-year plan, but I don’t want to anymore. Although I’ve made straight-A’s and won scholarships for outstanding work in the midst of everything, I’ve been miserable in the process. I want to thrive, not just academically, but as a whole person. I decided that it’s better to give myself a shot at getting better by having surgery and taking an extra semester to finish college.

Yet again, so much has changed in just one day, because taking an extra semester means delaying graduate school by an entire year—that’s a whole year I’ll have to figure out what to do with myself at home (maybe that’s when I’ll write my book!). It’s a lot to process, and I’d be lying if I said I was completely okay with it right now. But still, if taking my time with school and getting my tonsils out is what it takes to get me better, it’s a fair trade…

Woods

Recently, I’ve taken up mountain biking, and strangely, there are a lot of parallels between becoming a mountain biker and overcoming OCD…

Ever since last summer, I’ve been apprehensive about getting on a bike, considering that my legs used to give out on me frequently when I walked. If one of these attacks happened as I rode a bike at 20 mph down a road, I could get seriously hurt.

But this week, I got back on my bike anyway and rolled into the woods, following a friend of mine who’s an avid mountain biker.

At first, the trail was smooth and wide, and I felt great. But then, to my horror, a patch of roots and rocks showed up right in front of me.  I braked hard and skidded to a stop.

“How can anyone ride over that?” I said.

“Just let it roll. Don’t think about it too much.”

Being a beginner, every little rock in the trail seemed like something to worry about. Surely my little bike tires couldn’t handle all that, right? But soon, I began to discover that things that seemed like a big deal really didn’t matter.

This is how the intrusive thoughts of OCD are. I have all kinds of crazy and upsetting thoughts popping into my head like the little bumps in the trail. My instinct is to put on the brakes and try to “go around” the thoughts by carrying out compulsions. But if I just let myself roll through them without being afraid they’ll send me over the handlebars, I end up having far less trouble. No matter how scary the thoughts seem, they’re only thoughts—they can’t hurt you if you just keep rolling.

As the day went on, I got more and more confident in my abilities. Before long, I was barreling down the trail over much larger roots and rocks. True, I was sometimes afraid of what I saw approaching, but I chose to ride over those things anyway. It wasn’t so much that I’d become a more skilled biker in a couple hours—it was that I’d simply begun to believe I could make it through the obstacles.

Similarly, the first time I went through CBT, learning to not carry out my compulsions initially seemed impossible. How could I possibly roll through the intrusive thoughts without canceling them? How could I get through my exposures? Over time, I began to learn that I could survive the anxiety that came with not doing my compulsions or following my rules. Before long, I was rolling through all kinds of terrible thoughts without doing any compulsions—and nothing bad ever happened. Once I’d tackled the smaller rocky thoughts, I could later learn to ignore the bigger, more challenging ones.

After several miles of biking through wooded, rocky, twisty trails, we rode back to the car, exhausted but high on endorphins. I was muddy and had a few scrapes from occasionally riding too close to thorn bushes, but guess what? I’d made it, even though I wasn’t sure I could. I never crashed once and had somehow had a blast.

“You know, I think you’re a natural at this,” my friend told me.

“Thanks! It must be my running legs,” I said.

But I know that it wasn’t just my fitness. It was because I’d had plenty of practice learning to push past fear and anxiety thanks to eight months of OCD therapy. Who knows? Maybe it can work the other way around, too. Maybe mountain biking will make me more confident about facing my fears in this summer’s CBT sessions…

Wellbutrin XL: The Latest Addition to My Daily Pile of Meds

Wellbutrin XL: The Latest Addition to the Daily Pile of Meds & Supplements

As my two-month IVIG follow-up approached, I was sure I would have bad news no matter what. It would be bad news if my doctor decided I needed an invasive plasmapheresis treatment. It would be just as bad if she told me we had to “wait and see” if this second IVIG worked, because certain symptoms were still making me miserable.

Well, I didn’t exactly get either piece of news. We made a plan that involved neither option…

In the last few weeks, I’ve realized that my OCD is about to get completely out-of-hand, and I’ve also been slipping back into depression.  And this wasn’t a mild depressive episode—my depression turned me into an unrecognizable lump of a human being, exhausted by even the simplest tasks and unable to enjoy anything at all.

Yet as awful as I’ve been feeling mentally and emotionally, all my other symptoms are disappearing, so the IVIG is starting to work.  Given a few more months, maybe I’ll be completely cured…

Today, I have no sign of a sleep disorder of any kind.  I no longer need Nuvigil to stay awake during the day or any kind of sleep aid to fall asleep at night.  This, on its own, is a miracle, considering that a year ago, my sleepiness was so constant and severe that I was misdiagnosed with Narcolepsy and told I would never get better…

I can go for hours at a time without having any tics or choreiform movements, and when I do have them, they’re hardly noticeable.  It’s quite a transformation from someone who was involuntarily thrashing around violently in the ER eleven months ago.  I do still occasionally have my legs lock up on me when I walk, but I haven’t fallen down in weeks—and I used to fall at least 100+ times per day…

I should also mention that my memory and concentration are coming back, and I’m no longer having that feeling of being completely “out-of-it” or “not there.”  Even though I’m depressed, I have a mental clarity that I didn’t have a few months ago.

If it weren’t for my OCD and depression, I could almost just live with this disease without much complaint now.  But let’s face it—OCD and depression, even if you didn’t have all the other PANS symptoms, can be far more than anyone should have to deal with.

“Have you tried CBT for your OCD?” my neurologist asked.

“I mean, I did eight months of it a couple years ago…”

“I think you need to do it again. Your brain is ready for it now.”

Strangely, I found myself almost feeling happy about the idea of going back to therapy—not because I enjoy it (I actually hate it), but because I’m ready to get rid of my OCD and social anxiety. I was considering going back to therapy before my doctor recommended it, but now that she told me I should do it, I really didn’t have any excuse not to go. I remember how hard ERP therapy was two years ago, but the freedom I gained was so worth it. I know it’s still not going to be easy this time around, but it’s time to send my OCD packing, once and for all.

But what about my depression?

We have a solution—I’m now taking Wellbutrin XL, and after a few days on it, I’ve begun to feel significantly better. I have more energy and don’t feel like I’m dragging myself through each day. I’m actually happy. I’m slowly getting back into the things I used to enjoy.

From what I understood at my appointment, my doctor said that since I no longer have as many antibodies interfering with my brain’s dopamine receptors, my body hasn’t yet re-calibrated to make the right amount of dopamine.  I think she said I don’t have enough dopamine yet, so that’s why I’m depressed.  Our hope is that the Wellbutrin will help re-balance my brain chemistry.

I’m certainly not glad that I need an anti-depressant and have to go back to therapy for my OCD, but I’m glad that things are going to get better. For that matter, I’m glad that so many of my other symptoms are far better than they once were. I’m relieved that, for now, I’m not doing any more IVIG or plasmapheresis.

Who knows? Maybe this really is the beginning of the end…

Medal-small

There are some moments in life that you can never forget—moments when your whole world is turned upside, for better or worse. Living with PANS, a disease that sets in overnight and flares up in the same way, I’ve had more than my fair share of those life-changing moments.

However, another such moment (albeit a more positive one) happened on Saturday when I finished my first half-marathon: 13.1 slow, arduous miles.

That morning, as I squeezed my way through the crowd of 20,000 people and into my assigned corral at the start line, it was hard to believe that the time had finally come—the time to show that, in spite of my illness, I had earned my way into the throngs of runners who had also trained for this race relentlessly for months upon months.

I’ll never forget the feeling at the ten-second countdown as I stood at the front of my corral, staring down what seemed to be an endless stretch of asphalt. I’ll never forget the sinking realization that I had to depend only on my own body—one whose immune system once betrayed me in the worst way—to carry me through 13.1 miles of road.

Usually, before racing a half-marathon, one would’ve probably tried to run thirteen or more miles in training. I only got up to twelve because of an injury. Before the race, I hadn’t run more than eight miles at a time in over two months, so I felt extremely unprepared to run 13.1…

But the problem is that, once you’re there at the starting line, there’s no turning back. It’s a done deal. You have to at least try.

And the gun went off.

For the first two miles, I held my own at an easy pace. But although I was running steadily with a pace team, suddenly, it didn’t feel so easy anymore. I began to wheeze. My throat tightened up. I started to black out.

I watched helplessly as everyone left me crawling behind. There goes my two-hour goal, I thought to myself (before it occurred to me that I should probably find a medic or at least walk for a bit).

Only once in my life have I ever had an asthma attack, and it happened years ago—never during all of my difficult training runs for this race. To have something so unexpected happen precisely when I needed it not to happen was infuriating.

Being the stubborn and persistent person that I was, though, I kept running (well, more like waddling) for another mile, hoping it would pass. And of course it didn’t.

“I’m done. I can’t do this anymore!” I sobbed out-loud at mile three. “There’s no way I can possibly run ten more miles like this. Look at me! I can’t even breathe.”

But then, I began to think about how difficult the last nine years of my life have been. I thought about all the days I’d been sure I couldn’t possibly go on—yet I’d made it this far.  I thought about all the other kids out there with PANS and PANDAS and how I wanted to show that our disease doesn’t get to win.

I couldn’t quit. With tears streaming down my face and onto the road, I slowed down, hydrated, caught my breath, then kept going for ten miles more.

The race began to get smoother after that, but it was never easy.

I wanted to stop when I hit a large hill at mile six and was already exhausted before beginning the climb.

I wanted to quit when I had a second asthma attack at mile nine.

I wanted to give up when my legs burned with lactic acid at mile eleven.

I wanted to go home when I reached mile twelve and my entire back was screaming at me for being subjected to the impact for so many miles.

Nevertheless, after two hours and thirty-two minutes, I crossed the finish line—and won.  I may have run slowly, and I may have missed my time goal by more than half-an-hour, but that day, I outran PANS.

I won because I didn’t let my illness stop me.

I won because I overcame the paralysis attacks that plagued me last summer—and became a runner.

I won because I didn’t give up.

I won because I crossed a finish line that no one believed I’d cross.

My finish time no longer mattered—I won my own race.

I am still shocked that I pulled off a half-marathon, but I also know that I didn’t do it on my own. I surely never would’ve done it without the doctors and the treatments I’ve received. I wouldn’t have finished without the thousands of people who donated the plasma used in my IVIG infusions. I wouldn’t have finished without the physical therapists who fixed my knee when I injured it in training. I wouldn’t have finished without my family, friends, supporters, blog readers, and the thousands of people cheering on all the runners that morning.

So to all of you out there… Thank you!

Alone

Alone

While studying in my room one night, I heard laughter and music outside my window and smelled gas and burgers. I looked outside, and half a dozen people were having a wonderful time sitting around a grill, sharing food and stories about upcoming final projects.

And that’s when it hit me—I’m so lonely that I don’t even know I’m lonely.  I’m so lonely that I forget how much I miss spending time with people—until I see others doing it.

I know a lot of people at my college, but I maybe only have one or two close friends. Maybe…

Why is that? Despite the lies my social anxiety tells me, I don’t actually think I’m that unlikeable. Even factoring in the minor tics I now live with on a day-to-day basis and my OCD rituals, I’m not so weird that people should avoid me. I’m not unkind—on the contrary, I bend over backwards for the people I love.  So where are my friends?

The problem is that I never go to anything I don’t have to go to, and I never do anything I’m not required to do. How can I make plans with anyone when I never know how I’ll be feeling in the next few hours, let alone in a few days?  I try to explain to people that I’m ill, but if you don’t spend time with someone, how can you get to know anyone?

In my entire college career, I’ve only once gone to a party—and I left after a few minutes. People invite me to parties and concerts and other outings, but more often than not, I decline. And yet I still wonder why I’m always alone on a Friday night. And some part of me always wishes things weren’t the way they are.

You see, it takes too much mental energy for me to go anywhere. I can hardly get to class sometimes because of my lingering cognitive deficits in planning, organization, and memory. I’ve had nights where I cried for an hour just thinking about how hard it would be to get ready and make myself get out the door to class the next morning. Do you really think I would willingly put myself through that unless I had to? No wonder I don’t go anywhere. No wonder I’m always alone.

Another reason I choose to be alone is that I don’t want to get exposed to any illnesses. It’s gotten to the point where, if I see a crowd or hear about an event, all I can think about is how many germs will be there. I know how bad my flares are when I get sick, and I don’t want to increase my chances of flaring. I’m sure that my contamination OCD only makes the fears worse—and when I do get sick, all of my symptoms (including the OCD) get worse, sending me into a vicious cycle. So I stay alone.

Even if I did make it to a party, I’m sure I would have a sensory overload. Sometimes, I can’t stand the sound of people talking, especially if it’s loud talking. Sometimes, even when I’m just spending time with my immediate family (whom I love), it gets to a point where all the words and back-and-forth conversation and noise become too much for me to handle, and I have to go be alone in my room for a while. How could I possibly go to a wild college party (even if I wanted to)?

If I didn’t have a sensory overload, then I’d surely have to deal with my social anxiety/OCD. After almost every interaction I have with someone, I get this feeling that I’ve probably offended them somehow, so I go over the conversation over and over again. I think about it a lot and imagine what that person must think about me. When I see that person again, I always think, “She might not like me anymore because I said x and did y,” and I sometimes don’t talk to her as much because of this. In reality, I know it’s irrational, but my brain always replays my conversations anyway. Should I willingly put myself through a whole night of obsessing? No, I think I’ll just be alone…

On a great day, I can spend time with my roommate cracking ridiculous jokes in the living room or maybe even taking a bike ride around campus. It’s much easier for me to interact with one or two people at once.

But when I can’t do that, most of the time, I’m actually quite content to sit in my apartment alone with a cup of hot tea and my ideas. Or if I have enough energy to get out the door (but not to talk to anyone), I’m quite happy to go for a run by myself in a quiet park. After all, I’ve always been an introvert, even before I got sick.

But sometimes, every once in a while, I wish I felt like I could choose to be on the other side of my window, hanging around a grill with my friends without a symptom on my mind…

I Don’t Know Anymore

Well, after dreading it and hoping and praying it wouldn’t happen again, I’ve just had another bad flare.

On my way to class last week, I overheard someone say she had Strep throat.

No. I can’t flare again, I thought to myself. It’s not going to happen. I’m still on antibiotics. I’ve had two IVIGs. I should have plenty of good antibodies if I’m exposed. I’ll be fine…

But then, when I got to class and saw one of my lab mates who hadn’t been around in a few days, I asked where he’d been—and immediately wished I hadn’t:

“Oh, I had strep throat. It was a really bad one!”

There was no way I hadn’t been exposed. My school seems to have a problem with Strep outbreaks, and even though I’m on antibiotics, I can still flare. My doctor explained to me that it’s like being “allergic” to Strep—just being around it, even if I don’t get a full-blown infection—could send my immune system into a tailspin.

I tried to convince myself that maybe this time would be different, but deep down, I knew it wasn’t right that it had taken me five hours to write a one-page paper the night before. I knew I suddenly had no concentration again. I knew I’d been ticking a little bit more. It all made perfect sense now.

Just as I was beginning to hope this was the extent of the flare, I finally fell off the cliff. The world began to slip away—it was that feeling of being stuck in a fog that separated me from everything else. I heard someone make a “bad” noise, and I became so anxious that I had to run into the gym to do a 9 mph sprint on the treadmill (in spite of the pain from my knee injury). The next day, I just started crying uncontrollably for no apparent reason. The depression came back.

“You know what this all means, don’t you?” I sobbed to my mom when I could finally call her.

“That you’re likely to need plasmapheresis. Yes, I know… Have you taken more Prednisone yet?”

“No! I’m sick of %$&^%$ Prednisone! I’m done with this ^%$&^% disease!”

I could hear my mom on the other end beginning to cry, too. Most days, my family and I can all hold it together and think about everything I’ve accomplished in spite of this illness. We can pretend that I’m mostly fine most of the time, but it’s moments like these that tear our hearts apart—moments when we are confronted with the worst of it and the realization of how helpless we are to fix it.

On top of not feeling like myself at all, I now had the added burden of worrying that my IVIG hadn’t worked. I knew I’d have to come home for the summer after all. I knew my neurologist might be suggesting plasmapheresis or Rituximab or another IVIG at my upcoming follow-up. I knew I couldn’t continue my Prednisone taper for the rest of the semester. I knew I really wasn’t okay yet, and I was devastated.

I ended up complying with my parents’ wishes and doing a 5-day burst of higher-dose Prednisone. As much as I hate the stuff, I hate the way I feel when I flare even more. I’m doing a lot better, but I’m still having tics and having trouble finding words and speaking in coherent sentences. But I’m more okay than I was.

I don’t know what my future holds anymore. Maybe I won’t have a flare this bad again—or maybe I really have stopped getting better. Maybe this IVIG will start to work soon—or maybe I’ll get off Prednisone this summer and discover that I’m still bordering on insanity without it. I don’t know. Only time will tell…

My Last Piece of Freedom

Last summer, over the course of a few hours, I suddenly became unable to walk due to an autoimmune attack in my brain. If I tried to go from my living room to the kitchen, I fell multiple times because my legs would suddenly give out.

In one moment of insight during that horrendous time when I had not only lost the ability to walk but had essentially lost my mind, I said to myself, I’m going to run a marathon someday and overcome this. And I’m going to beat my best 5k time from eight years ago within the next year.

It was truly a crazy idea. Maybe I still wasn’t in my right mind when I came up with that…

For some strange reason, although I often fall down if I walk long enough, I have never once fallen while running. As far as I’m convinced, when I run, I don’t have PANDAS—I have freedom. I am in charge of a body that turned against me in the worst way imaginable. My love of running has made my ongoing walking problems far less painful to bear.

When I tried a couple runs after my first IVIG treatment in the summer, I was still so weak and malnourished that I struggled to finish a single mile at a very slow pace. But I didn’t give up…

As I started to get better, I got stronger and faster to the point that it didn’t seem unreasonable for me to sign up for a half-marathon a couple months ago. I was running up to twelve miles at once. Then, last month, I finally crushed my pre-PANDAS 5K record by a whopping 2 minutes.

Although my PANDAS had been getting worse and worse at the same time, to the point that I needed a second IVIG last month, my running successes always made me feel on-top-of-the-world in some ways.

But one night, something went horribly wrong…

I set out on a group run, and the farther we went, the more I noticed my quad hurting. I’ve had the feeling before, and usually, when I kept running, it went away. Unfortunately, this time, it didn’t.

I finished the run at what felt like a good pace, but suddenly, I was in even more pain. My knee was extremely swollen and painful. I couldn’t walk—not because of my brain, but because I was injured.

Knee

I’ve since been diagnosed with Runner’s Knee. Basically, my knee cap is not tracking in the right place, so it’s rubbing against the cartilage. My poor quad was simply trying to compensate for my bad knee on the run that night.

I’m devastated. Not only have I lost the ability to walk normally—I’ve lost the ability to run. I have no escape from my illness anymore. I’ve lost the one thing that almost always had a way of bringing me joy, no matter how bad my depression was.

Yet again, another thing meant to keep me healthy has turned against me—just like the antibodies that attack my brain. Is PANDAS going to defeat me?

I really didn’t need another thing to deal with right now. Ever since I’ve had to rest my knee by not running, I’ve been having nightmares about not being able to run. Running was my last piece of freedom, and some days, it was my only window into normalcy. Running was the one thing that gave me hope that my body wasn’t completely broken. Running was a way for me to pretend to be healthy. Running was what inspired me to keep persevering through my terrible flares.

There’s only a month until my first half-marathon. I was supposed to finish it as the ultimate slap-in-the-face to the disease that left me unable to walk. But can my knee heal up in time?

I’m starting physical therapy this week, and you can be sure I’m going to try as hard as I can to do everything in my power to heal from this injury. Dang it—I didn’t let attacks of paralysis keep me from starting to run in the first place. I’m not going to let a simple knee injury keep me off the starting line this summer!

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This week, I have wonderful news… Instead of moving home for the summer like I’d planned, I’ve decided to remain at school to take classes and work.

While this may sound like a “normal” summer for an almost-20-year-old, for me, it’s a huge victory. Not too long ago, I hated everything and wanted nothing more than to go home and spend my summer lying on the couch or in bed (just like last summer). But now, I want to keep pursuing my dreams in this city—dreams that I’d pushed to the back burner for far too long because of my illness.

When I called my parents yesterday to inform them of my decision, I didn’t know how they’d react. I thought they might try to make me change my mind, but instead, they said my plans were, “the best news ever.”

“I feel great,” I said on the phone. “Really great.”

“How’s your OCD?” my mom asked.

And there was a long pause…

Recently, I’ve been having a hard time with sensory sensitivities.  If I feel certain sensations or see certain textures or hear certain sounds, I’m thrown into a flurry of compulsions and tics to try to get rid of the physical discomfort.

For example, I can’t stand it when my feet rub across the floor or the ground in a certain way. If it happens, I have to go “undo” it by stepping on the same spot again or rubbing something else in a “good” way.  Just thinking about the noise and the sensation makes me very anxious. When it gets really severe, sometimes I won’t move until I can convince myself that it wouldn’t be “that bad” if I accidentally made the sound happen.

“Well, mom,” I said, “It’s gotten to the point where I’ve considered putting rubber mats on top of all the carpet in the apartment…” (For some reason, sliding on rubber or plastic doesn’t bother me nearly as much.)

“That’s not good.”

“Yeah, I know. And then I had a couple of days when I could hardly eat… And I’m sleeping terribly and can’t stay awake without Provigil… And then there’s the ADD…”

“Well, what’s so great about how you’re feeling now?”

It’s very hard for me to identify what it is, much more to explain it, but I feel a night-and-day improvement compared to where I was before my most recent IVIG. I’ve previously written about how my perception of the world and my awareness has improved, but to put it another way:

I may still have symptoms, but my symptoms don’t have me.

I’m not completely consumed by this disease anymore. I have a life that isn’t just about fighting PANDAS. I’m doing everything I want to be doing—even if it takes me longer than most people, and even if it takes more effort. Yes, having PANS causes significant difficulties, but I’ve learned how to work around them somewhat, and I’ve come to accept my life for what it is right now.

Certainly, I’d prefer to not have any of the challenges that I have. I want this IVIG to take care of everything that’s left. I don’t want to be tossed into the throws of partial insanity when I finish my Prednisone taper next month (I’m down to 8mg now!). I want to stay at school over the summer like I’ve planned—and not in isolation at home after a plasmapheresis hospital stay.

But I suppose if push comes to shove, I still want to be cured more than anything else, so I’d go home for treatment this summer if I needed it…

For now, though, I’m going to keep living as if I’ll get to have a “normal” summer, because I like looking forward to something normal—even though I know there’s a possibility that I’ll have no choice but to go home…

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This week, I finally hit the post-IVIG flare that we were all dreading.  Thanks to a six-day burst of high-dose Prednisone, I’ve come out of it now, but I hope I don’t have to go through that ever again.  Unfortunately, I probably will.

Until my most recent IVIG, my flares were getting worse and worse.  One night a few weeks ago, I found myself spacing out at the kitchen table for about two hours, unable to make myself get up, because I had too many OCD compulsions. When I realized I’d been doing nothing for two hours and thought about how hard it would be to do anything with the burden of OCD, I just lost it—I spent twenty minutes walking around my apartment screaming and hitting the walls.

On another night, I similarly started screaming, but then ran outside and sprinted for half a mile in the rain at 1:30 in the morning. Shapes were rising out of the bushes during the run—shadows were everywhere… I realized I was hallucinating.

This week’s flare wasn’t nearly as bad—my latest IVIG seems to be damping things down.  This time around, my flare consisted of depression, feeling detached from everything and being “out-of-it,” some of the worst tics and choreiform movements since the summer, bad memory problems, and crying about everything for no reason.  The flare wasn’t pleasant, but at least I wasn’t hallucinating.

At this point, I’ve become a master of knowing when I’m about to flare. It’s true that all my flares happen very suddenly, but there are a few warning signs…

The first clue for me is that I start to have a hard time making myself do anything in the hours leading up to the flare. I lose interest in things. If I’ve made plans, I cancel them if at all possible. It’s almost like my body knows it needs to conserve energy to brace for the coming battle—before I consciously know it’s coming.

The second clue is that my physical pain suddenly gets worse. As a result of another condition called Thoracic Outlet Syndrome, I’m almost always in some amount of pain, but this is different. I start to get this strange, dull ache all across the backs of my arms and sometimes in my legs, too.  Before this week’s flare, I went to bed and had that pain in my arms and thought a flare would be coming. The next morning, I had no other signs of flaring, but sure enough, that afternoon, I fell off the cliff.

Another sign of a coming flare is that my cognitive issues suddenly get worse—especially the word-finding problems.  I don’t know the names of everyday objects.  I try to articulate myself, but I say things in the wrong order and get the tenses of my verbs wrong. Sometimes I know how I want to say something, but it doesn’t come out of my mouth that way.  I find that increased word-finding difficulties might happen only a few minutes before the worst of the flare.

But what’s it like to experience a flare?  The tics and other movements are obvious. You can see the “look of terror” I get with my widened eyes. You can watch me having a panic attack. You can hear me yelling at my parents. You can notice me doing more compulsions than usual. If you could read my mind, you’d know that the looping, intrusive thoughts start happening much more often. But it’s more than all of that—flaring feels like losing yourself.  It’s like something outside of yourself takes control and snatches who you are away.

When I flare, it feels like someone is taking things out of my mind and hiding them—and refusing to tell me how to get anything back.  I look for the words to speak, but this monster has set them up in a high place I cannot reach. I try to remember what happened the week before, who that familiar face is that I’ve seen hundreds of times, or even what I was in the middle of doing, but it has all been stolen out of my mind, and I don’t know where the monster has put any of it—I just know it’s all gone.

When I flare, it feels like I’m living in another world, unable to traverse the chasm that is my mind in order to be with everyone else.  I know I can’t think clearly about anything, but I cannot specifically tell you what about me is “off.”  I may try to go about my day as usual, but the world doesn’t quite make sense, and I feel like I’m somewhere else. The scary thing is that I never know how far away I’ve been until I come back out of the flare—and then it’s like I have been away for a long time am rediscovering all the wonderful things about the world and the people around me.

Coming out of a flare is like getting the proper prescription at the eye doctor—you didn’t know what you had been missing until you saw clearly again. You knew things weren’t quite in focus, but you never could’ve imagined all the details you once missed—but now, everything seems even more beautiful since you can fully see it.

I often wonder how many more times I’ll have to go through these flares. I’m not myself at all when I flare, so I feel as though I’m living between the flares, hoping to have as full of a life as possible.  I go to college like everyone else. I have friends. I even make straight-A’s.  But I live with the constant reality that I could flare at any moment.

I try to live the life I want to live between the flares because when you never know when you’ll lose yourself next, you have to make the most of every moment and cherish each day that you get. I lose my perspective on everything when I flare, but if I can look at all I accomplish in the better times, I can maybe know on some level that I am still me—no matter how much each flare makes me feel otherwise.

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I just finished my second, and hopefully last, IVIG treatment!

Recently, I’d been feeling like I’d made no progress with any of my symptoms after my first IVIG.  But strangely, it was the process of going back for another IVIG that showed me this was simply untrue.

When I had the first IVIG in August, if I got out of the chair to stand up and stretch my legs, I started doing a wild choreiform movement dance. I couldn’t even look at my doctor to talk to her because I was moving so much. I had to hold onto the IV bag pole to keep from falling down when I tried to walk down the hall to the bathroom.

This time, I hardly had any movements, and the ones I did have were barely noticeable to anyone besides me—except for when I took one spill in the hallway…

While my movement disorders have improved significantly, I’d say the main difference between last week and my August IVIG has been that, before my first IVIG, I don’t think I fully understood how serious this disease could be.

In August, I didn’t realize that, if it weren’t for the Prednisone burst that had brought me back a few weeks beforehand, I could’ve starved myself. It didn’t occur to me that if we hadn’t figured out I had PANS, I would’ve been locked up in a psych ward with constant monitoring so I wouldn’t hurt myself. I didn’t grasp that I needed IVIG to avoid a lifetime of mental illness, disability, and unimaginable suffering.

But now I get it.  Sometimes, it’s too much to process.  I simply cannot bear to think about what would’ve happened to me without treatment.  I nearly lost everything…

During the IVIG treatment this week, I was also well enough to understand how bad things still are—although it’s a good sign that I’m able to recognize this. I know that my general and social anxiety and OCD have been incapacitating, all of my executive functioning abilities are very poor, and everyday tasks are sometimes impossible.

But even if some of these symptoms aren’t much better than they were in August, my perception is much improved. It’s like someone has finally given me a pair of glasses for my mind, and I can finally see what I’ve been missing for so long. While it’s painful to know there’s so much I couldn’t see, it’s comforting to know I’m coming back in some ways.

Unfortunately, being more aware means I’m also able to worry more.  I worry because, if this IVIG doesn’t bring me back to 100%, I’ll be spending a month of my summer in isolation following a five-day plasmapheresis treatment in the hospital. If that fails, I’ll be going through Rituximab infusions—a form of chemotherapy.

I had big plans to take summer classes and get a job, but how can I plan anything when I have no idea whether I’ll be able to leave my house or not this summer? All I want is to not suffer so much—especially since I’m so conscious of my suffering now. I just want to be allowed to be myself.

Sometimes, I cannot sleep at night because I’m afraid I’ll never get back to who I am. Or even worse, I worry that I won’t know that I’m not completely better, and then I won’t get the treatment I need, and then I’ll slip into a relapse just as I’ve finally returned to a good life—and then I’ll go through this whole thing all over again.

But I don’t want to worry—I want to enjoy the improvements I’ve already seen after this second IVIG: my OCD almost completely disappeared overnight, my memory is much better, I’ve been able to contribute to discussions in my classes this week, and I’m even enjoying things again. This is wonderful, almost miraculous, news. Oh, that this trend would continue…

Bring Me Back

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As spring break approached, I did everything I could to avoid answering that dreaded question: “What are you doing over break?”

“Oh, I’m just taking a short trip to the city and then going home and resting,” I told most people.

But the whole truth is that I’ll be sitting in my doctor’s office for two days hooked up to an IV to get a bunch of people’s antibodies poured into my body. The truth is that I desperately need this treatment so that my own bad antibodies will stop attacking my brain. The truth is that I’m going for my second round of IVIG to hopefully wipe out this disease once and for all.

As I’ve listened to classmates discussing their cruises, beach outings, road trips, or even their plans to remain at school, I’ve found myself feeling resentful.  It isn’t the fact that I don’t get to spend the week on a beach with my friends—it’s the fact that I don’t have the freedom to choose not to do so.  My symptoms are severe enough that the only reasonable spring break for me is to get more treatment. What can I do? I have to go back for IVIG.

IVIG round 2––I'm partying so hard over spring break!

This is how I’m partying over spring break…

With so many emotions—hope, fear, anxiety, and more—I stepped into a cab after my last Friday class and headed to the airport to go home.  But it wasn’t that easy: my mom had to call the cab for me, because my social anxiety has been so bad lately.

Getting through the airport to go home was even more difficult because of my brain fog. These days, I walk around with a constant sense that I’ve forgotten to do something or that I’ve lost something. And sometimes, I get very confused by everyday things. Getting through an airport in that state was truly an accomplishment.

As I finally sat at my gate, amazed at how “off” and not completely present I was, I knew in my heart of hearts that, in spite of how much I wished to have a “normal” college spring break, it was time to go home.

Yes, I’m ready to be brought back. 

Oh, IVIG, please bring me home. Bring me back to who I am. Bring me back to the days when OCD didn’t force me to make everything “just right.” Bring me back to the days when I wasn’t afraid of everyone. Bring me back to the days when I wasn’t in constant pain. Bring back my memory. Bring back my concentration. Bring back my mental clarity. Bring back my mind. Bring back my health. Most of all, bring back my hope.

One way or another, I’m going home. It may not be this flight, this trip, and this treatment that gets me there, but somehow, I will find my way. I’m going to go home. Something, someday, will bring me back.

The Blame Game

After eight years of searching for a diagnosis and then finally discovering I had PANDAS, it wasn’t enough for my family and I to simply know what my illness was. We wanted to know what caused it and who or what could be responsible:

Why did I get sick? What could’ve been done so that this never would’ve happened?

We blamed the doctors for brushing me off for eight years. We blamed them for not being willing to consider thinking outside the box. We blamed them for giving me more and more diagnoses while never stepping back to consider a single cause for all of them—while we insisted there had to be one.

We blamed the psychologists for completely missing my severe OCD at my evaluation in 2008. We blamed them for telling my parents I simply had “social problems,” when in reality, my OCD symptoms were preventing me from expressing myself to the evaluators. We blamed them for not considering OCD avoidance behavior as an explanation when they knew my brother and much of my dad’s family had OCD.

I blamed myself for not talking to anyone about my obsessions for six years.  I blamed myself for unknowingly concealing the one condition (OCD) that eventually led to a PANDAS diagnosis.  I blamed myself for not trying harder to get better after I first got sick. I blamed myself for catching the mono that led to this terrible flare last year. I blamed myself for not believing I would get better after my first IVIG, and somehow, causing it to fail.

My parents blamed themselves for not knowing I had OCD for six years. They blamed themselves for not trying harder to find an answer. They blamed themselves for “letting” this happen. They blamed themselves for passing on the autoimmune disease genes/rheumatic fever history that may have contributed to my illness.

Yes, it’s true that some of the doctors and therapists I saw over the years made mistakes and didn’t try hard to find an answer. It’s true that we would’ve found out I’d had PANDAS sooner if I’d been able to talk about my OCD. And yes, it’s true that I’ve probably inherited my parents’ bad genes.

But in the end, no one can truly be blamed for my illness.

Why do people try to find something or someone to blame for the bad things that happen?  Why does there have to be an answer?

The moment I admit that my disease is no one’s fault is the moment I admit that I have no control over it.  It means admitting that bad things can and do happen for no apparent reason.  This idea—this realization—is terrifying.

At the same time, I find freedom and hope in it.  I’m not mad at the doctors anymore, and I’ve come to understand that my family and I have done nothing but the best that we could for all these years, given the information we had at the time.

The hardest thing has been to realize that none of this was ever my own fault. It’s taken two years for me to be able to forgive myself for concealing my OCD for over a third of my life, but I’m slowly learning to extend the same compassion I have for others to myself.  I call it the Reverse Golden Rule:

“Give yourself the same grace you give to others. Don’t be so hard on yourself.”

Yes, even after my brain has healed completely, it will take a long time for my family and I to truly release ourselves of feeling responsible, in some illogical way, for what happened.  But I’m ready to stop playing the blame game. As hard as it is, it’s time to let go and focus on the hope I have of complete recovery…

Lately, I’ve been having a harder and harder time with cognitive problems. I make stupid mistakes in school now that I’d never make in the past. I say the wrong words without knowing it. I mix up left and right as if I were six years old. I’m very forgetful. I do a lot of small but silly things everyday—little things that anyone might do once in a while but the fact that I do them so frequently makes me feel as if I’m losing my mind.

I can manage as long as I make a plan or if everything goes exactly the way I expect, but the moment something comes up that doesn’t fit into my notions, I’m thrown for a loop and don’t know how to proceed.

The other day, I was filling up my car at the gas station, and after scanning my credit card, the pump told me to go pay inside. I didn’t understand. I had no idea what to do, but I did go inside to the cashier.

“Hey, my pump isn’t accepting my credit card and told me to come inside.”

“What pump are you on?”

“Umm… I have no idea… Let’s see… Well—hey, can’t you just fix it in here maybe? And then I can go pay outside?”

I was stuck on the idea that I always pay outside at the pump and couldn’t wrap my mind around paying inside—even though I used to always pre-pay at the cashier when I lived in another town.

“I don’t know what pump you’re on.”

“Okay…” I looked out the window. “I think I’m at number three. Could you please reset it from here so I can go pay for it?  How is this supposed to work?”

At this point, the cashier was slightly amused that I was so confused by the idea of paying inside. She tried to explain that I could do the same thing inside, but in the end, I still don’t understand what happened. I gave up on understanding and just handed her my school ID to pay for the gas–and then everyone in line really started looking at me like I was crazy.

I quickly pulled out my credit card instead and apparently paid, because I eventually got some gas in my tank. But the whole incident made me feel like a total idiot and like someone could’ve taken advantage of me.

The worst part of my cognitive issues is the fact that, by definition, I’m not always aware of when I’m struggling. I always have this sense that something is “off” about me, but I can rarely point out to you what’s wrong.   How can I trust myself at all like this?

At the same time, I’m functioning at a very high level and have no problems doing certain complicated tasks. Still, I know my mind isn’t what it used to be, and it’s frustrating and heartbreaking to be aware of this and to not know what I’m doing wrong.

Knowing that I’m not 100% mentally means I’m only losing my mind halfway…  Sometimes, I wish I’d go ahead and lose my mind completely so I wouldn’t feel the grief of knowing I was losing it.

But don’t you see? I’m not crazy. I’m not stupid. I’m just living with brain inflammation that’s temporarily masking who I am and what I’m capable of. Someday, when I’ve been cured, I know that I’ll get everything back, and people around me will finally see what I still see in myself somewhere—the same intelligent and rational person I’ve always been.

Slamming the Door on OCD

It’s just a doorknob—just a little piece of metal attached to my door. For most people, it’s an overlooked necessity that doesn’t get a second thought. But for me, it’s a peril.

Until a few days ago, I’d gone the entire school year without ever touching my bathroom’s doorknob. I avoided this by either leaving the door cracked enough to let me use my feet to open the door, or I grabbed the doorknob with a designated washcloth that I kept nearby. Unfortunately, I often don’t touch any other doorknobs or handles of any kind in the rest of my apartment, either—not the refrigerator, not the microwave, not the cabinets, and not even the doorknob to my own bedroom.

I had been bothered by this set of compulsions for a long time, but the idea of going through Exposure-Response Prevention therapy to get rid of them seemed like much more work and trouble than just continuing to follow my rules—until I kept getting texts from my roommate kindly asking me to stop slamming doors.

I was rather confused at first. I had no idea I was slamming doors, but after a lot of thinking, I realized that some of my compulsive behaviors had become completely unconscious. I realized that a lot of the time, the only way I was closing a door hands-free involved slamming it.

To make matters worse, my roommate told me she has phonophobia: fear of loud sounds. Every time I closed the doors my way, she got debilitating anxiety. (We’re quite a pair aren’t we? The OCD girl’s compulsions set off the phobic girl’s anxiety.)

One part of me was mad that anyone would dare ask me to stop my compulsions, and I was embarrassed that they’d gotten so bad that I couldn’t. Another part of me, knowing how disruptive anxiety can be, felt horrible for causing my friend distress.

So this turned out to be my final straw—I now had the perfect excuse to make myself do some ERP to get over the door-closing compulsion.

That night, I decided to do the unthinkable: grabbing the bathroom doorknob without a washcloth and without washing my hands afterwards. As I trudged over to the door, my heart began to pound. My legs started shaking. My hands trembled as I reached for the knob. Before I could talk myself out of it, I quickly grabbed on and then stood there for at least two minutes.

My brain soon realized that touching the doorknob wasn’t dangerous after all, and my physical anxiety symptoms died down after a few more minutes. After a while, the exercise wasn’t unpleasant at all.  I did so well with this exposure that I proceeded to go touch many things in my apartment that I’m not allowed to touch.

Although I’ve since reverted back to using the washcloth on the doorknob, I’ve shown myself that it is possible to break free and not nearly as unpleasant as I’ve imagined it to be.  However, I’m still rather shocked that my OCD has once again gotten to the point where not doing a compulsion put me on the verge of a panic attack.

But you know what? Even though doorknobs have shut me into OCD again, I’ve realized that if I keep touching them, some day, they will allow me to reopen the door to my freedom.