PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

Posts tagged ‘Recovery’

Minor Symptoms, Major Anxieties

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.

3 Years Later… The Beginning of the End?

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.

My Narcolepsy Diagnosis Almost Killed Me

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.

The Truth About My PANS Recovery

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.

Why I’m Working through PANS

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.

Why I Look Forward to Tomorrow

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.

Lyme Disease: A Still, Silent Battle

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.

Why I’m Finally Choosing Recovery

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.

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.

IVIG #3: Third Time’s a Charm

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.

Why I’m Throwing Up My Hands

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.

POTS & PANS: A Recipe for Disaster?

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.

“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.

Why Antibiotics Are Necessary for PANS

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!

Treatment Is a Kitchen Sink?

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.

PANS: Certainty of Uncertainty

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!

PANS and Romance: It’s Complicated

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!

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.

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’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.

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…

Why This Year Isn’t Last Year

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.

What I Wish I Knew Before IVIG

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.

I Didn’t Fall Off The Cliff!

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.

Tonsillectomy and… Hope?

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.

Let It Roll: OCD & Mountain Biking

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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…

The Day I Outran My Illness

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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!

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!

My First “Normal” 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…

What’s It Like to Survive a Flare?

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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.

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…

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.

The Run of My Life

Recently, I signed up to run in my first half-marathon.  I was planning to cross the finish line this summer as the ultimate way to overcome PANDAS. I was hoping to be able to say, “Nine months ago, I couldn’t walk, but today, I’m totally healthy and symptom-free!”

But my plans have been ruined, and my dreams have been shattered.

When I underwent high-dose IVIG therapy in August, for the first time since I got sick eight years ago, I was hopeful about making a full recovery. I knew it could take up to a year for me to get completely better, but I didn’t mind. As long as I was getting better, no matter how slowly, I could keep hoping.

But then I stopped getting better.

I started tapering off my daily 20 mg dose of Prednisone in December, and I’ve gone downhill ever since. When I got to 3.5 mg, I was close to psychotic. I had some sense that I wasn’t right, but I wasn’t completely aware of how irrational and out-of-it I was. I stayed in bed all day long and didn’t go to class. I have since been staying at 7.5 mg, and although I’m in my right mind, I know I’m still not “right.”

Two weeks ago, I had the second-worst panic attack of my life during an exam. It had been three months since I had a panic attack at all. Even when I made up the test a week later, I was fighting off another attack the whole time, and as a result, I got a low grade.

On top of that, my OCD is suddenly out-of-control, to the point where I sometimes stay in my room instead of doing what I want because I don’t want to have to go through my decontamination rituals when I get back home. Not too long ago, I would’ve told you I hardly had any sign of OCD.

And now, I get confused at the strangest things. In church yesterday, as the offering plate was passed around (the same way it always is each week), I stared at the folded up checks in the plate and actually wondered for a moment, What am I supposed to do with this? What are those pieces of paper? Do we each take one?

My ticks and chorea are also back, and falling down is a daily occurrence.  My concentration is a joke.  No matter how much I sleep at night, I fall asleep all the time during the day without Provigil. I sometimes impulsively eat when I’m not even hungry (and I’ve still lost two pounds in the last month).

My parents told my neurologist about my ongoing symptoms, and now I’m scheduled for a second IVIG in March.

So here I am, six months post-IVIG about to go through the whole process all over again. I’m going to have to keep fighting for far longer than I expected. I may need plasmapheresis, too. I’m going to get extensive viral and infection testing to be sure there isn’t another underlying cause for my continuing flares—and if something comes back positive… Well, I don’t want to think about having to fight that off, too.

To say I’m devastated doesn’t even begin to express what I feel right now. It isn’t the fact that I’m spending two more days of my life getting treatment—it’s the fact that my “everyday” is still terrible. It’s the fact that the first IVIG wasn’t enough. It’s the fact that I’m still so sick when I hoped I would be almost completely better.

But I’m still running. I’m still training as hard as ever and not giving up on crossing that race’s finish line…

I don’t understand why I can still run when I’m otherwise dysfunctional, but running gives me the courage to keep persevering through the fight of my life when I’m sure I cannot possibly go on. Every time I finish a long run in spite of the last few miles of feeling exhausted and wondering how I would have the strength to finish, it gives me hope that I will someday also cross the finish line of PANS.

Someday, I will look back on this eight-year endurance challenge feeling on top of the world, and I will say, “That was one helluva run, but I did it!”

Struck by Lightening… Twice

Not only is my brain messed up—so is my spine.

Not only is my brain messed up—so is my spine.

Having PANDAS/PANS by itself is a nightmare.  The ongoing concentration problems, falling when I walk, extreme sleepiness, and depression are more than anyone should have to deal with at once. But guess what? I’m living with another awful condition on top of all of that: Thoracic Outlet Syndrome.

What is TOS? Like PANDAS, it’s another condition that is under-diagnosed and often involves multiple misdiagnoses first. Basically, TOS means there isn’t enough room for the nerves and/or blood vessels that pass between the collar bone and first rib. Those of us with TOS experience numbness and poor circulation to our hands in addition to severe pain in the shoulders, neck, and back. It really sucks.

I’m told my PANS didn’t cause my TOS, but I’ve noticed that when the PANS symptoms flare, so does the TOS pain.  I think the anxiety causes all my muscles to subconsciously tighten up, thus increasing the pain (it’s just my guess).

I’ve been in constant pain from TOS for the past six years.  I was told from the beginning that I would have it for the rest of my life.  After being diagnosed, I felt like my life was over, and I sometimes wished I’d never been born.  Thank God my worst PANDAS flare happened before I developed TOS—otherwise, I’m sure I wouldn’t have survived…

Eventually, I simultaneously began to live in denial of how bad the pain was while accepting that I would never get better—just like I did with the intrusive thoughts until I was seventeen.

But no matter how normal numbness in my hands and constant pain have become, every once in a while, something stirs in me to fight back, kicking and screaming with all my might.  A few days ago, I got to that point again. I realized that I’m nearly twenty years old, and my pain only keeps getting worse.  If I don’t do something, I’ll surely live the rest of my life like this—and I don’t want to accept that anymore.

So I decided to confront my TOS head-on and try something new: I called a chiropractor. Considering how bad my social anxiety has been, the fact that I could even make that phone call is amazing—or maybe it shows how desperate I was.  I like to think it’s a sign of progress with PANDAS symptoms…

Whenever I’ve mentioned to doctors that I have Thoracic Outlet Syndrome, they either give me the “wow-that’s-terrible-I’m-so-sorry” look or they tell me TOS is very rare, not well understood, and possibly non-existant—funny, because those are the same responses I get about PANDAS. But not so with this chiropractor:

“When I put your arm to the side like this, your pulse is instantly gone in your arms.”

This alarmed me, of course. “What?!  Are you sure?  How is that possible?”

“You definitely have Thoracic Outlet Syndrome.  But don’t worry… I can fix it.  I’ve never had a case of it I couldn’t fix.”

The evaluation and diagnosis reminded me too much of seeing the PANDAS specialist this summer who said I “definitely” had PANDAS and continues to tell me that I’ll get better. The fact that I have Thoracic Outlet Syndrome isn’t news to me, but somehow being told again that I have it is a shock that forces me to confront it—just like I was 95% sure I had PANS before I got to the specialist this summer but still cried at the diagnosis.

I’ll be spending the next couple months going to the chiropractor three times a week and doing rehab—while still trying to get over PANDAS and worrying about and expecting another IVIG or plasmapheresis. (My sleep issues, depression, and ataxic walking are completely out-of-hand.)  Why is it that I have to fight two devastating conditions at once?  How much suffering can one person take?  I feel like I’ve been struck by lightening twice.

With both my TOS and PANDAS, I’m afraid to believe that I’ll actually get better, because I’ve been disappointed so many times. But I’m sure going to try…

Am I Better Yet?

Ever since I started treatment this summer, I’ve found myself constantly asking, “Am I better yet?”

When I got IVIG, I’d hoped maybe I would start getting better within a few weeks. Whenever I had a good day, I started to think I was getting better. But then the symptoms would come back, and I’d be disappointed. I’d been told it could take me up to a year to get back to 100%, but I hoped it would be sooner. Wouldn’t you?

Six months later, I’m still playing the am-I-better-yet game, and the answer is still no. Certainly, I’m “better” than I was in a lot of ways, but I’m nowhere near where I want to be. I was doing really well, but now that I’m finding out where I am with less of the anti-inflammatory and immunosuppresent qualities of the steroids, I really don’t like what I’m seeing.

At 10 mg, I went back to not being able to walk normally. I ticked a lot. I couldn’t remember simple words and often had to pantomime things to get my point across. I kept seeing everyday things that had a “bad” texture, and looking at them made me sick to my stomach. If I took Nuvigil to keep me awake, the symptoms I was left with were close to the level of impairment I lived with for the three or four good years I had since getting sick—better than I was this summer.

At 5 mg now, things aren’t looking so good. I’m having bouts of depression where I hate doing the things I usually love. I sometimes start shivering all over when I’m not cold—a symptom I hadn’t had since September. Some days, I’ve had as many as ten or twenty falls because I can’t walk normally now. As I’m riding my kick scooter across campus, my fingers involuntarily lift off the handle bars for a couple seconds (my thumb doesn’t, so I’m not going to fall off), and it looks like I’m giving passersby some weird sort of wave—but this is just a new choreiform movement.  Having this one new choreiform movement is better than that constant full-body dance I did a few months ago.

Worst of all, my cognitive symptoms are becoming more severe and obvious. Instead of forgetting words, now I just say the wrong word and don’t even realize it until after I’ve done it—if I realize it at all. I’ve had a lot of people ask me to repeat things I say lately, which makes me think I’m messing up my words even more often than I realize. Sometimes, I say something and watch people think about what I’ve said and then ask me, “Oh, do you mean…?”

Sometimes, it can be as simple as me calling a bagel a doughnut, but other times, it’s much more disruptive. Someone asked me for directions recently, and I meant to tell them to make a left turn, but I ended up saying “right turn.” I tried to set up a time to hang out with someone else and tell them Thursday didn’t work but Friday was good, and instead I said, “We should get together on Thursday.” I don’t speak up in class anymore because I’m sure I’ll say something stupid.

My concentration is possibly at its all-time worst. I was trying to pay attention to a lecture the other day, but instead, I completely checked out without realizing it. Ten minutes later, I came out of it and had absolutely no idea what was being discussed. I tried to get back into focus, but it was impossible, so I just sat there in another world for the rest of the class. And then during my choir’s rehearsal this week, I lost my place in the music every few measures and had to rely on the girl next to me to repeatedly show me where we were. I had to call my mom and have her read aloud an assigned reading and help me parse the meaning of the text. And while writing this post, I’ve been noticing an unusual amount of typos and grammar errors.

As bad as some of my symptoms are, I’m happy to say that I barely have OCD anymore—if I have it at all. I’m also having more days when I hardly tic. I haven’t had a full-blown panic attack since October. I’m running more and more and have even joined a local running club (you don’t really have to talk when you’re running). I was so ill and exhausted from being malnourished this summer that I could barely run a 12-minute mile, but now I can run eight miles non-stop at a 9:40/mile pace.

As I continue to ask myself if I’m better and over-analyze each symptom, I’m going to try to remember how much I have improved—and I’ll keep hoping that someday, I’ll ask myself, “Am I better yet?” and the answer will be an indisputable yes.

What I Learned from Losing My Wallet

Recently, I had the misfortune of losing my wallet. Anyone would be upset and worried about losing something that contained your credit and ATM cards, driver’s license, school ID, cash, car keys, and apartment keys. But I had another concern: as soon as you open my wallet, you can see a medical information card that gives away all kinds of personal health information.

If I were ever in an accident or had another emergency, it’s a good thing that this information is so easily accessible. But in this case, I couldn’t help but wonder who was going to read it. There’s no way whoever found my wallet wouldn’t see it. I had managed to keep my illness a complete secret from everyone but my close friends and professors, because I didn’t want to be treated differently. Would this be the day that everyone found out?

As soon as I got back to my apartment, reached for my keys, and realized my wallet wasn’t in its usual place, I set out on a trek across campus to retrace everywhere I had been that morning. I went to campus security and told them my plight. Nothing had been turned in. I went back to the classrooms I’d been in earlier in case it had fallen out when I sat at my seat. No luck.

Finally, I went to the front desk of one of the buildings where I’d had class. Without a word, the secretary handed me my wallet with a little smile. Nothing was even missing. Some kind, honest human being had turned it in.

What you need to understand is that, a few weeks prior, this secretary had given me a really hard time about being late to order some course materials. The school was trying to make only one order, but whenever stragglers like me missed the deadline, they had to place another one which cost more money. In all fairness, I shouldn’t have waited until the last minute, but when it was all I could do to just get out of bed in the morning and fight through crippling depression and extreme sleepiness all day long, ordering textbooks wasn’t really a top priority.

“You should have done this five weeks ago,” she said angrily that day. “Oh, you don’t have a checkbook with you? Go to the bank right now and get some cash.”

I wanted to cry. Do you have any idea what I’m going through right now? I thought to myself. If only you realized that I truly am doing the best I can. I never wanted to cause anyone any trouble. I wasn’t just being lazy and inconsiderate by waiting this long.

But ever since I lost my wallet, this woman seems to be treating me a bit more gently. I’m sure that she looked in my wallet and read my card. Now she does know what I’m going through.

I’ve often wondered what would happen if I carried that card on the outside for everyone to read. What if we all were more open about what we’re up against? I have frequently longed to just come out and tell everyone, “Hey, I have this awful disease. It sucks. Please give me some extra love.” But I haven’t. Maybe it’s time to rethink that…

When you live with an illness with such a profound impact on your life, there’s always a struggle between telling people what you’re dealing with so that they can understand you better and not telling people so that you can maintain a sense of privacy and maybe even forget that there’s anything wrong with you on the good days. I still haven’t figured it out.

While I certainly wish I had never gotten PANS, the one good thing it has done is make me a more compassionate person. I’ve come to realize that everyone has a card—struggles, difficulties, and bad circumstances that, if we knew about them, would explain some of the seemingly annoying or inconveniencing things people do. You rarely get to read someone else’s card, but I’ve learned to try to give people some grace, because I have so often wished for others to do the same for me.

How Do I Stay Positive?

When I look back at the last few months and think about everything I’ve been through, I’m often surprised by my own resilience. What keeps me going? Why do I not give up? And I think to myself, “How in the world do I stay so positive?”

The answer? I don’t.

In our society, there’s a faulty idea that being strong and tough means holding in all emotions except the pleasant ones. We salute the people who go through terrible things and still smile and look on the bright side at the end of it all. We are forever being told that as long as we can be optimistic about life and stay positive, we’ll get through whatever comes our way. Although no one ever says so, to me it often seems like crying and grieving and expressing pain is frowned upon. Everything will be okay. Just be positive!

But sometimes, there really is nothing to be positive about. Do you want to tell me that it was a good thing I became suicidal and anorexic this summer? Would you dare say that there was any benefit to suddenly not being able to walk? Can you explain to me why there was anything nice about being trapped by OCD for six years?

For a long time, I bought into the lie of optimism. I tried to tell myself things were never “that bad.” If I started to get upset, I would quickly squash down any negative feelings I had.

Certainly, there where times when I had to do this to survive. Some circumstances are too traumatic to let yourself feel the pain all at once. But in my case, I often just denied how bad my situation was because I thought doing so was what it meant to be strong. But then, I learned something…

The bravest thing is not pretending the bad things didn’t happen—it’s diving into them headfirst by admitting that something terrible has happened. It’s letting yourself feel the pain. It’s mourning what you’ve lost. It’s coming to terms with the fact that things are not okay anymore. How can you move on unless you acknowledge the tragedy that’s holding you back?

This summer, although I was mostly numb about all the bad things that had happened to me, intellectually, I recognized how traumatic everything was. I made the conscious decision to let myself feel whatever I needed to feel going forward.

Since then, there have been days when I’ve cursed out my circumstances with a tirade of f-bombs (and I’m the kind of person who never swears). There have been days when I’ve wept aloud for several hours. There have been days when I feel nothing at all. I think that letting myself feel these things is what gives me the ability to be positive the rest of the time and to keep going when things aren’t good.

This week, I’ve had a major relapse of depression because I’m tapering off Prednisone and have been fighting a couple viruses.  Every time I try to do my work, as soon as I see my assignment, I get overwhelmed with sadness and start crying for no reason.  I love what I do, but my brain won’t let me do it.  I fear for the next few weeks if this flare doesn’t stop.

There are some positive things right now, though. My OCD is almost non-existent. I haven’t fallen down in close to a week. I’m not ticking much. I’m able to stay awake on only 125mg of Nuvigil again…. But thinking about these good things does nothing to make the debilitating depression go away. Even with all the positive things, living with PANDAS is still awful right now.  Why should I pretend the improvements make this setback less miserable?

I can’t fight against the sadness right now, but feeling it doesn’t mean I’m weak.  No, it means I’m strong enough to admit my pain.  And I’ll keep moving forward as best I can.

IVIG: Four-Month Update!

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

The movement problems have gotten slightly worse again, although they’re still nothing like the crazy chorea dance I was constantly doing this summer. The hypersomnia is by far the worst symptom now. I’m completely dysfunctional if I don’t take the wakefulness med Nuvigil. I fall asleep after sitting down anywhere for more than ten minutes. When I do happen to be “awake,” I’m loopy and can’t concentrate. At least I have Nuvigil… My doctor just started me on another anti-inflammatory called Plaquenil, so I’m hoping maybe it will help some of this.

When you’re sleep is messed up, everything is messed up.  I still have trouble with concentration and processing written information. The less steroids I take, the more I often I have trouble coming up with words for everyday objects, which only makes my social anxiety worse.  But I’m not depressed anymore. I still have quite a bit of general and social anxiety, but I was able to have a small party at my apartment at the end of the semester—even though the idea of having five friends over at once had me shaking all over earlier that day. A couple months ago, I know I wouldn’t have even considered inviting friends over.

Perhaps the most mind-blowing improvement is with my OCD. I’m slowly not carrying out compulsions anymore without having to go through months of CBT/ERP like I did in the past. There are times when I find myself touching something I wouldn’t have dared handle a couple months ago, and I only realize what I’ve done afterwards. I’m not sweating through anxiety when I don’t do my compulsions—I’m just not doing them without thinking about it. It’s amazing. As someone who has been through CBT before (and had success at the time), it’s very strange to see your brain rewiring itself without you having to consciously work so hard at it.

At my latest follow-up, my doctor told me I looked “less tormented.”  And that’s how it feels.   However, she was quite concerned about the sleep issues—especially that they had come back after being completely gone and that they didn’t go away on a Prednisone burst this time.

“At this point, we can talk about doing another IVIG,” She said. “But we need to wait at least six months to be sure you need it.”

I wasn’t surprised. But now I just have to keep waiting… again.

Nevertheless, on the whole, I’m doing so much better, and I’m very happy with the progress I’ve made. But do you want to know a secret? Getting better is frightening because the better I get, the more I realize how far gone I was this summer.  In June, I was hardly upset that I had stopped eating and couldn’t walk and suddenly had uncontrollable movements everywhere. I was apparently in a bit of a daze, and I had no idea how much I’d really lost my personality. Now that I’m back, I get it, and I’m even more grateful for my continuing recovery.

 

I’ve had this blog for over six months, and the responses and support I’ve received so far have been incredible. Thank you. I would love to get some feedback from all you amazing readers about what you want to read about next. I’m planning to continue posting regularly at least until I get 100% better and then for a few months afterwards.  That’s probably another year or two of writing.  (And then I want to turn it all into a book, but that’s another story…)

What topics would you most like to read about? Do you have any questions for me, as an eight-year survivor of OCD and PANS? Please comment with your ideas and thoughts!

Getting Over the Trauma of OCD

I usually say I’m mostly free from my OCD. Indeed, I no longer have to cancel out every intrusive thought that enters my mind, and I don’t have to double-check everything I say or write for a blasphemous double-meaning. Without hesitation, I can read passages of Scripture that once sent me into a full-blown panic attack. I’ve truly come a long way, but lately, I’ve been realizing that my fight isn’t over.

What I’ve been through as a result of Scrupulosity OCD was extremely traumatic. Do you know what it was like, as a devout Christian, to believe that you would be forever separated from the God you loved with your whole heart? To me, this was the worst thing that could have happened, and as far as I knew, it had happened.

The pain was real, even though the reality was totally different. The truth is, I just had a disease that manifested itself as extreme OCD that happened to take the form of religious obsessions and compulsions. No matter the content, all OCD is essentially the same. It wasn’t a “spiritual” issue any more than it was when I caught mono last year (and subsequently descended into the worst flare of my life).

I wish Scrupulosity got more attention both in the OCD community and in churches and other religious organizations. How many people are secretly tormented by unwanted thoughts and believe that God is mad at them because of their struggle? How many people are worried that they need an exorcism, when really, they have a misfiring brain that can be treated? Even one person going through what I have is too many.

Words are completely inadequate to describe the despair of feeling as though the next intrusive thought that came into my mind could ruin me forever—and living with the awful suspicion that I’d already doomed myself to an eternity apart from God. Scrupulosity is surely the closest thing to Hell that exists on this side of the grave.

If I told you it was once like the constant dripping of a Chinese water torture in your own mind, it wouldn’t begin to describe the torment.

If I said it was like being blind and deaf and unable to run while knowing you were being followed around by a hungry tiger, it couldn’t describe the incessant anxiety.

If I told you it was like having someone dangle you out the window of an airplane to drop you at any moment, it couldn’t communicate the sense of impending doom.

Even if my OCD were completely gone (which it is not), I still couldn’t just get over the sheer trauma of what it once did to me.   Sometimes, I still blame myself for not being “brave” enough to try to get help sooner–and for concealing my OCD so well.  But I was petrified and did the best I could.

While I may no longer have the compulsions surrounding my obsession of being unforgivable, the anxiety is still here; I am terrified of ever having to go through that pain again. Every time I go to church, every time I read the Bible, every time I just try to worship, that sense of imminent doom follows me there, because I can never forget how OCD once used my faith to torment me. I’m always waiting for the next obsession to come that will leave me paralyzed with anxiety all over again.

Sometimes, I think that OCD is going to make the very thing I feared the most come true for real—me walking away from God. How can I possibly keep believing when it hurts so much? How can I possibly trust in a God that I am, on some level, still afraid of? How can I ever get over what happened to me?

I’m mad at God—partially for letting these horrible things happen, but mostly because He has seemed so silent through much of my ordeal. Where was God during all those nights I spent alone in my room, sweating through panic attacks over Bible verses my brain abused? Why didn’t He just plainly tell me, “Hey, I’m not like that. Don’t listen to those lies…”

But don’t you see? Even if Christ Himself had appeared to me and assured me that none of my obsessions were anything to worry about, my OCD would’ve still moved on to find another thing to torment me. And I’m convinced if I had never had Scrupulosity, I would’ve had another kind of OCD—just like how now, it has become mostly contamination fears.

I know that God isn’t like my OCD—He’s not just waiting for the next opportunity to torment me and make me as miserable as possible. No, I’ve experienced His love for myself and on some level, I do know that He is the Perfect, Good Father that He says He is.

But I can’t fully believe it—not yet, anyway.

Yes, it’s true that I have a long way to go in the healing process. But I can’t help but be grateful that I am even at a place where I can recognize that I have OCD and am not a reprobate or a spiritual failure. Had I not figured out I had OCD, I certainly wouldn’t know I have PANDAS. Considering the severity of my symptoms, I might not still be here had I not gotten a proper diagnosis and treatment in time.

As traumatic as my life with Scrupulosity was, remembering it and then seeing how far I’ve come gives me hope that someday, I’ll get to a place where the pain no longer haunts me.

I Run 5 Miles, but I Can’t Walk 50 Feet

Suddenly losing the ability to walk at nineteen years old is terrifying and heartbreaking. I never thought it would happen to me, but this summer, it did. In a matter of twenty-four hours, I became unable to walk across a room without falling down multiple times.

How do you get around a college campus when you can't always walk?  You ride a kick scooter, of course!

How do you get around a college campus when you can’t always walk? You ride a kick scooter, of course!

While this symptom has greatly improved to the point that I’m only falling maybe two or three times a day (as opposed to fifty or more), it’s still unnerving. Every time I have to get up and walk somewhere, I’m constantly wondering if I’m going to go down. I’m waiting for that feeling I get in my head that tells me it’s coming. I’m watching for my legs to start getting weak and unresponsive before I collapse.

What would you do if you were me? Confine yourself to a wheelchair, or at least decide to use a cane? That wouldn’t be unreasonable. I have done both when it was worse. Would you lock yourself in your room and cry, wondering why this had to happen to you? This, too, would be understandable.

Sometimes, I do get really mad about all of this. But I’ve decided that instead of feeling sorry for myself, I’m going to get up and do something.

My brain still won’t let me walk more than 100 yards without at least a little knee dip—or sometimes, a full-blown fall. But somehow, I’ve managed to get back into running again with no trouble. Can someone please explain to me why I can run five miles, but I can hardly walk from my bedroom to my kitchen? This is truly a bizarre disease.

A few weeks ago, my depression got really bad—almost as bad as it was in June when I was nearly institutionalized. The SSRI’s weren’t working. I hated doing everything. I felt like I was “gone.” But somewhere inside of me, I wanted to get better. I was desperate to find something that would pull me out of the pit. So I decided to start running and working out, because I had heard this could help depression.

Now, I run once a week and do weights and cardio intervals two more times a week. At first, there were a lot of days when I really didn’t want to go to the gym. I hated it just like I hated everything else. But whenever I finished a workout, my mood was better for at least a few hours. After two or three weeks, my mood was better all the time. Today, I have no sign of depression at all, and I’m not taking any antidepressants, either. I really feel great.

I don’t think it would be fair to attribute my progress only to exercise.  I’m sure I wasn’t well enough to be working out this much just a few months ago.  I have just now reached the four-month post-IVIG milestone—the time when a lot of people start to see big improvement. I also know that working out doesn’t stop PANDAS or PANS. If it did, I never would have gotten sick in the first place. I was on my way to becoming an elite athlete at eleven years old—and PANS stopped me.

As good as I feel now, I’m all-too-aware that my fight is far from over. My sleepiness has gotten worse again, to the point that I need 3/4 of a 250mg Nuvigil tablet to stay awake. I had gone three months without the drug, and 125mg was enough until this week. A few days ago, I apparently got a cold or something, and my tics and chorea went crazy again. This seems to suggest that my body still hasn’t unlearned its old habit of attacking my basal ganglia instead of viruses.

But I try not to think about the bad things that are still going on. I try to think about the awesome new job I just got—in spite of ticking during the interview. I try to think about the fact that I’m going to finish this semester with straight-A’s (well, there might be one B). I try to focus on the fact that I didn’t let PANDAS stop me from running a 5k race in 27 minutes—the fastest I’ve run in eight years. Or I think about the fact that I can now run five miles—farther than I ever ran even before I got sick.

Even if I’m often sitting on the stationary bike at the gym, repeatedly tilting my head and sticking my tongue out involuntarily from the tics and losing my grip on the handlebars with “piano-playing” fingers from the chorea, at least I am well enough to be sitting on that bike.  Even if I have to lock my legs and walk on my toes in order to not fall as I go from the bike to the weights at the gym, my gosh, at least I’m walking at all.  And hey, I’m just going to take a moment to admire my newly toned running legs in that mirror while I lift those weights, and I’ll appreciate that I don’t look sick anymore.  And I’ll tell myself that someday, my brain will learn to work with those legs again so I can walk…

3 Months Post-IVIG: A Wild Ride

Today is the three month anniversary of my IVIG treatment. It’s hard to believe it’s already been that long, but at the same time, it seems like an eternity ago because the last three months have been such a wild and difficult ride.

So far, the main improvement I’ve seen is with the chorea and tics. I’m starting to have a lot of days where they’re barely noticeable. The chorea is usually just a slight arm or leg jerk here or there—I don’t look like I’m constantly dancing anymore. I can actually sit still!

I've ditched the cane!

I’ve ditched the cane!

As for the walking issues/muscle weakness, that has improved significantly. In June, I could barely walk across the room without my legs giving out on me. I would be trying to walk normally, and suddenly my legs would become momentarily paralyzed so that my knees gave out and I fell to the floor.

Now, I often only have a couple minor knee-buckling episodes each day, and I’m usually able to catch myself before I go all the way down. These days, it just looks like a slight “hiccup” in my step when it happens.  I’m so glad I no longer have to walk around wearing knee pads while trying to stop the falls with a cane…

So has it been steady progress since my infusion? Absolutely not—especially when it comes to the mental symptoms. I have yet to see much improvement in my OCD or social anxiety. They’re both almost to the point of being out-of-hand.

As far as depression goes, I’m having some very good days when I’m hardly depressed at all, but I’ve also had some horrible days where I hate my life and just want to do nothing but lie in my room by myself and sleep.  Sometimes, everything just makes me cry for no reason. (Well, it is for a reason: brain inflammation.)

But that’s not even the worst of it. I’m having a relapse of my sleep disorder.  I cannot stay awake during the day, no matter how many hours I sleep at night.  If I sit down anywhere for ten minutes, I’ll fall asleep. The other day, I even fell asleep while standing up in a lab and nearly fell onto some expensive equipment on the lab bench. Oops…

So unfortunately, I’m still living up to my name: the Dreaming Panda.

I’m trying to stay positive about everything. I’m trying to think about how great it is to be able to walk again and to be able to sit completely still during class. But it’s hard. It’s really hard sometimes—especially when you’re so sleepy that you’re living in a dream world where everything seems unreal and a bit far away.  And let’s not forget how OCD and anxiety can confuse your world, too… (I have an entire future post dedicated to discussing this).  How do you see through the chaos of a brain that isn’t quite working normally yet?

But still, three months later, even though it’s been frustratingly slow, my progress towards recovery is becoming undeniable.  As hard as these months have been, I’m told that three to four months post-IVIG is usually the beginning of major improvements in PANS/PANDAS symptoms.  So yes, this eight-year nightmare must finally be coming to an end…

What I Have to Believe…

In the last two years, nothing has gone as planned.  I was supposed to go off to college and start my life again. I was supposed to leave behind the pain of the OCD I had seemingly conquered last year just before my freshman year. I was supposed to move away to let my career take off.  But instead, I’m sitting here about to take another nap because no matter what I do, I can’t keep my eyes open.  I never could’ve imagined that this is where I would be right now…

If I have to pick one thing that is the worst part about having PANDAS, I think it’s the fact that it makes me feel like I’m not myself anymore. I feel like I’m only a shadow of who I used to be—even of who I was a year ago. I don’t even enjoy my favorite things. I used to be the kind of person who loved to go out and do things and have adventures, but now I’d rather just sit at home by myself or sleep. I can’t even make music sometimes now, and for me, that is heartbreaking.

Most days, I manage to make myself get through things, and I’ve even managed to keep good grades. But there’s no joy or time for friends. I’m surviving—not thriving like I had planned to be. I’ve been cheated out of a normal college experience so far.  For that matter, haven’t I been cheated out of a normal adolescence, since I’ve had some degree of PANDAS since I was eleven?

But I can’t think like that. No matter how badly I want my life to be different, this is the way it is right now, and being bitter about it won’t do me any good. No, I have to just keep thinking about the fact that I’m one of the fortunate ones who figured out I had PANDAS. I have to remind myself that it isn’t permanent and that I will get better.

Still, sometimes, I get really mad about where I am in life. I had everything going for me until this summer—I was on the fast track in my career. But it seems to all be slipping through my hands now. I feel like this disease is just such a waste of my time, talent, and personality. Why did this have to happen?

I don’t think I’ll ever have an answer. But at least I have a cure; my doctor has repeatedly told me that I’m going to get 100% better—even though it could take a year. At my recent follow-up, I told her about my continued depression and OCD and sleep issues, and she said it meant my brain chemistry is still “messed up.” Also, It hasn’t even been three months since the IVIG, so the fact that my chorea has improved as much as it has is a great sign. I have to hang onto that…

My doctor has treated hundreds of cases of this, many of which were worse than mine, so most of the time, I believe her when she tells me I’m going to get better.

But of course, living with anxiety makes it difficult to believe sometimes. Every time a symptom comes back, so does the what-if monster: What if it doesn’t go away this time? What if it keeps getting worse? What if I don’t actually have PANDAS? What if it really is “all in my mind” like so many doctors have told me? What if I really am crazy?

I’ve been in a wrestling match with that monster this week, but it can’t win—and it won’t, because I’m just going to keep dragging myself through each day until I get better.  I just have to believe that I will…

 
So, readers… What is your what-if monster? How do you fight it?

I Had OCD for 6 Years… And Didn’t Know

This week has been OCD Awareness week. Up to this point, I haven’t discussed my OCD very much, but I think it’s time to change that. An overnight onset of OCD is the hallmark symptom of PANDAS/PANS—which I had almost eight years ago.

For six years, I concealed from my parents and psychologists the torturous obsessions that ran through my mind because I was so afraid of and ashamed of them. Not all OCD is caused by PANDAS/PANS, but no matter what causes OCD, it is a devastating and frightening disorder when left untreated—especially when you don’t know you have OCD, as was my case for six years.

Because I have PANDAS, I can tell you the day that my OCD started. (With non-PANDAS/PANS OCD, the onset isn’t so sudden.)  I was eleven. I went to bed one night, and while reading in bed, a terrible blasphemous thought entered my mind. Most people would have let it go, but I couldn’t.  In an instant, my whole world was turned upside down as my body produced an autoimmune response against my brain that gave me PANDAS, and thus, OCD.  I began having the first panic attack of my life, because I suddenly had an irrational fear that the one intrusive thought had doomed me to Hell.

What could I do? I was eleven years old, but I couldn’t bring myself to tell my parents my terrible fate of eternal damnation. I couldn’t tell them about the thought either, because then they would know how bad of a person I was for having it come into my mind in the first place. There are no words to describe the horror that I felt, and the worst part was the feeling of being alone—that I couldn’t tell anyone and that even God had turned against me. There was no hope.

I was not doomed to Hell of course, but living with PANDAS-triggered Scrupulosity OCD sure felt like it. Before long, my mind was a constant cacophony of intrusive blasphemous thoughts that I hated. Every time I read a book, the words morphed into even worse thoughts. When I walked, the rhythm of my steps became an obscene word. It got to the point where I literally wouldn’t write or say anything because everything turned into an intrusive thought…

Even if I answered a question someone asked me by saying “Yes,” I was afraid I would actually be affirming a “bad thought”—even if the conversation had absolutely nothing to do with my thoughts. If I said “No,” I might cancel out a “good thought,” which would have been just as bad. The worst feeling was wondering whether or not I had “cancelled out” the bad thoughts properly, because sometimes, I would lose track of my mental rituals. One time, I accidentally said one of the intrusive thoughts out-loud, and I worried about whether I cancelled it properly for the next five years.

At eleven years old, I thought I had to be going crazy. I couldn’t understand why it seemed like my mind was full of thoughts that weren’t my own; I wondered if I was possessed. I knew that no one should be afraid of the things I feared. At the same time, I felt like I had to keep following the rules and doing the compulsions just in case they were rational. What if everyone else was crazy and I was sane?

With OCD, there’s always another what-if and another precaution that you have to take in order to neutralize an obsession. For some people, the obsession is getting sick or getting someone else sick, so they wash their hands a particular way and a certain number of times in order to stop that bad thing from happening.  For me, the obsession was Divine judgement, so I become consumed by morality and carried out silent mental compulsions to “cancel out” any kind of immoral thought that entered my mind. It was as if I always had to decontaminate my mind. Of course, it was never really decontaminated, because the intrusive thoughts would come back as soon as I tried to stop them.

So how in the world did I escape from that prison?  When I was seventeen, in the second worst OCD flare of my life, for the first time, I began to ask a different what-if… What if these thoughts were not my fault? A lightbulb went off. I remembered reading an article in Readers Digest that said OCD involved repetitive unwanted thoughts.  I googled OCD, and a chill ran down my spine as I read a description of the Scrupulosity type and realized it was everything I had been experiencing since I was eleven. It took a couple weeks, but I eventually worked up the courage to tell my parents I needed help.

Today, I can say that, thanks to therapy, I am 90% free from Scrupulosity.  Because I have PANDAS, my OCD gets dramatically better and worse over time, and I still have contamination OCD.  Even so, thanks to Exposure therapy, my OCD has never gotten as bad as it once was.

Somewhere, in the middle of my OCD mess, I met a loving God that wasn’t just waiting to smite me the moment I didn’t cancel a thought properly. When I realized who God was, over a few months I was eventually able to stop my mental rituals on the leap of faith that they weren’t necessary. It was terrifying, but the moment I stopped believing the intrusive thoughts had any power was the moment I was set free.

If I had known sooner that OCD could take the form of intrusive thoughts and mental rituals, I could have had a better adolescence. And I certainly would have figured out I had PANDAS much faster. For my parents, it was horrifying for them to realize I had been mentally tortured by OCD for six years without them knowing.  As my mom put it, “You were too strong for your own good. Most kids would have eventually cracked under that kind of pain.”  I know there are a lot of other strong people out there. How many others are silently locked inside a prison that exists in their mind?

Whether one’s OCD is caused by PANDAS/PANS or not, I want everyone to know that there is hope. No, you’re not crazy. And no, you probably aren’t the only person who has that obsession.

If I ever have children, we will talk about OCD and talk about thoughts that come into their minds that upset them. I will tell my children that any thought that enters their minds that they hate isn’t their own. I will tell them that they aren’t responsible for thoughts that happen against their will. I will tell them that even if the bad thoughts were their own, God wouldn’t love them any less. And I will tell them that God understands how the brain works and isn’t intimidated by intrusive OCD thoughts—or anything else that can be thought.

My parents did everything right—they sought out the expertise of psychologists and counselors, but I was so afraid that I hid my OCD skillfully. The only thing that could have gotten me help sooner would have been if someone asked if I ever had repetitive, unwanted thoughts.  Why did none of the professionals ask? People need to know that OCD can be completely hidden in the mind—it’s so much more than a personality quirk or germaphobia. People need to know that they’re not alone in fighting thoughts that they’re too ashamed to mention. People need to know that OCD is treatable.

Signs of Hope

For the first time in four months, one night, suddenly, I realized my choreiform movements were gone. When I woke up the next morning, my body felt completely different. That night, I felt a tingling session in my head and legs, as if my brain were healing itself. The next morning, I had a sense of the disease departing from me, and people were even telling me that my “energy” was different. For the first time in several months, I was enjoying my life again.

Since those wonderful two days last week, I have had some mentally rough days, although the chorea and tics continue to be quite mild. Could the IVIG actually be starting to work? I think I’m daring to hope that it is.

So far, this whole healing process has been a lot of ups and downs—perhaps mostly downs for the first month. But every once in a while, I get a really good day or two, and it seems like the good days keep getting better. I’m just hoping that the bad days keep getting less bad until, eventually, a bad day is only what a normal person would think of as a bad day—maybe just feeling a bit tired because I didn’t sleep enough, or something like that.

I just passed the two-month mark since my IVIG treatment in August. I was told it could take as much as 3-6 months before major improvement, so this is a good sign. I still haven’t been able to come off the steroids, but I’m still better off now than I was two months ago on a higher dose. Even though it doesn’t seem like it sometimes, I think I’m finally starting to get better. I have hope now that I really am going to beat PANDAS.

Still Falling… And Getting Back Up

So I know it’s been awhile since the last post, but it’s been for good and bad reasons.

I had two weeks where I almost forgot I had PANDAS sometimes—days where I could get done almost everything I wanted to get done. I was walking normally and having a lot less chorea. My mind was mostly clear, and my concentration was good. I even had an almost normal amount of energy. So far, I’ve been able to make all A’s and a B+ in my classes. Even so, I haven’t had time for a social life. All I’ve been able to do is do homework and rest. On the outside, it was looking like I was doing pretty well. But then I started having more bad days.

My roommate got sick. I didn’t—or at least I didn’t have any symptoms of that cold. Instead, I started flaring again when my immune system kicked up to fight whatever virus I was exposed to. I started getting bad panic attacks. My mind went fuzzy. I started having excessive daytime sleepiness like before. To make matters worse, it was time for me to lower my steroid dose, and things got so out-of-hand that my mom had to come stay with me in my apartment one night. I guess I don’t yet get to forget that I’m really sick.

The truth is that I am far from recovered. I still have quite a bit of contamination OCD. I still have choreiform movements. I still get panic attacks and anxiety. I forget simple words throughout the day and struggle to articulate myself when I speak—but in my mind, I know exactly what I’m trying to say, even though I don’t know the words. And now that I’m on only 10mg of Prednisone, I’m not able to walk normally for more than a couple minutes (but usually only a few steps) without my legs giving out underneath me. I don’t usually get upset about my illness, but not being able to walk very well is really getting to me this time.

I hate this disease. I know I’m supposed to get better, but having to live with it every day until then just sucks, and there’s no way around that. And sometimes, I think the depression just might be the worst part. I don’t know if my depression is from brain inflammation or if it’s because I’m wary from fighting this illness for so long. I think it wouldn’t be fair to attribute it solely to either one—I think it’s both. I’ve had to be too strong for too long, and I can’t keep pretending any more. I’m sick of being sick.

With any kind of illness, there’s always the physical disease itself and the emotional component of learning to deal with it and the shock that you have it at all. But what makes PANDAS particularly traumatic is how suddenly it tears apart your life. One day this summer I was sort of okay, and the next day, I had the worst panic attack of my life, was falling down whenever I walked, and began thrashing around uncontrollably to the point that my terrified parents took me to the ER. Nothing has been the same since that day in June.  I am still upset about what happened, especially since I still have quite a bit of involuntary movements.

You never see PANDAS coming—it just steals yourself from you while you’re busy living your life.  It affects the whole family.  My mom has admitted to me that she has some PTSD over what I’ve been through. My dad will hardly talk about my overnight decline in June.  As for me, I’m really depressed because I know that every day, I have to wake up and deal with the disease all over again. The other day, I realized that I barely enjoy anything anymore.  I’m just trying to get through things without looking forward to any of it, because everything is exhausting.  I just want to be normal again, but I’m afraid to believe that the IVIG is going to make me better because I’ve been let down so many times over the years with other “treatments” for my various misdiagnoses.

But I can’t give up. Even though it doesn’t feel like it, I have made some progress, because the fact that I am even able to attempt college is miraculous. Everything is really hard right now, but it’s not impossible. I just have to take it all one step at a time. Yes, a lot of my steps end in a fall right now, but I’ll just keep getting back up and trying again.

PANDAS Goes to College

This week, I’m heading back to college. Is that crazy? Probably, but I’m going to try.

As it is, my main PANDAS symptoms are choreiform movements/tics, physical and mental fatigue, hand tremors, a bit of OCD, and general anxiety. But I have my mind back. My mood is stable, I feel like myself, and I don’t fall asleep every time I sit down for more than ten minutes. I’m a functional human being again.

But the problem is that I have to be more than “functional” to get through college. I’m studying in one of my school’s most demanding programs. If trying to read a chapter of my textbook right now for an online class makes me have to lie down and rest for two hours afterwards, how can I get through a week of classes?

And then there’s the fact that I just had another panic attack last week.  My doctor said it was because I’m tapering off the Prednisone.  But I had gone two months without a major attack, and the other night, when I was thinking about going back to college, it happened again.  I thought I was done with those.  What if I get one in the middle of a class?  Now I’m anxious about being anxious.

What I’m most concerned about is my chorea, because it’s so obvious, and walking is still difficult sometimes. There’s a reason why Sydenham’s Chorea (which I may or may not have) is also called St. Vitus’ Dance—you really look like you’re dancing, though it’s completely involuntary. I try to walk normally, and instead, you’d think I were jamming out to some dance music. My hips sway. My head nods forward. I kick around my feet and swing my arms. I make weird faces.  My legs randomly decided to stop working, and I fall to the ground.

Sometimes, I find my chorea hilarious.  Sometimes, I don’t think much about it.  Other times, it’s extremely frustrating, and it can be very disturbing to watch your body move when you didn’t tell it to.  Socially, how am I supposed to handle that? Maybe I should just stick some earbuds in, and no one would think anything of it—I’d just be rocking out. Maybe I shouldn’t care what people think. And how am I going to walk across campus to class?

I’m going to tell my professors what’s going on for sure so they don’t think I’m grimacing at their lectures. And I need to figure out a quick way to explain my chorea to friends. I think the key is to not make a big deal about it. Everyone doesn’t need to know everything about what I’ve been through. I’ll just say I’m recovering from autoimmune encephalitis (it’s my official diagnosis) and that I’m still left with the movements for now—and then I’ll make a joke about how good of a dancer it’s made me…

I think the key to going back to college is to be able to not take myself too seriously, to know my limits, and to realize how far I’ve come. It’s a miracle that I’m even trying to go back to school after the summer I’ve had, and I have to remember that I was in much worse shape in the spring semester—yet I still was recognized as a top student. Now that I have my mind back and the ability to stay awake, I can’t imagine it will be harder than it was before.

And you know what? I’m not alone. My family is there for me, even if they physically aren’t anywhere near me. I have awesome friends and a great church. I met another college-aged PANS patient during IVIG that I can talk to.  Best of all, I have Jesus. Sometimes, I’ve felt like God just wasn’t there through this ordeal, but looking back, I know He was looking out for me in ways I couldn’t possibly have known. And one thing I’ve learned is that, no matter how awful and unpredictable PANDAS is, God is always good and never changes—He’ll be there no matter what happens this semester…

Battle Scars

One day of meds/supplements...

One day of meds/supplements…

For much of the summer, my illness was completely invisible, but lately, with one look at me, you know something is going on. If I try to walk around normally, my chorea often makes me look like I’m being electrocuted or like I’m doing some weird dance—but it’s completely involuntary. I have horrible acne from one of my medications. I’ve started to develop a puffy “Prednisone face.” My arm is covered in strange bruises from IVIG and all the blood work I’ve had to get.

When I look in the mirror, I could easily let it get to me, and I could sink into despair. There have been times when I’ve been afraid to go out, because I thought everyone would just stare at me. Indeed, it is rather alarming to look different—though I know that my appearance is not the only thing that has changed as a result of PANS.

But you know what? I don’t care anymore. I know I’m beautiful because of who I am in Christ.  I know the unpleasant things I bear on the outside are just battle scars—scars that will soon fade away.  And I’m not ashamed of the scars anymore. I know how fortunate I am to be alive and well enough to even be thinking about how I look. I don’t regret for one moment the fact that my treatments have given me these temporary side effects, because they have also given me my life back.  And I’m hoping and praying that they’ll make the chorea go away soon, too…

I’ve decided that I can’t worry about what other people think of me. They don’t know my story or who I really am. Sometimes, people are just plain mean (and that’s their problem), but sometimes, other people might decide what they think about you based on how you see yourself and how you treat them. So I’ll choose to be beautiful and treat everyone with kindness. You never know what might be hiding behind others’ battle scars.

IVIG and the Waiting Game…

IVIG: Intravenous Immunoglobulin from 1000 donor antibodies...

IVIG: Intravenous Immunoglobulin from 1000+ donors

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

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

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

A Day in the Life of Recovery

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

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

Every morning when I wake up, I have a few seconds of blissful forgetfulness before I remember that anything is wrong with me. But then there’s always that “Oh crap” moment when I suddenly realize all over again how sick I am. And I remember how many pills I have to take that day and the fact that things are bad enough that I need an IVIG in a week. For the rest of the day, I think of little besides my illness because it effects all that I do.

Everything is exhausting. I want to get out of bed, but first I must lie there for a few minutes to gather up my willpower. The first few minutes out of bed are nerve-wracking, because I’m anxious to see if my ability to control my body has improved at all. Will I fall down? Can I actually stand still while I brush my teeth? I have a few tics and arm jerks and decide that my symptoms are only slightly improved from the day before. Baby steps, I tell myself…

By the time I’ve gotten dressed and ready, I’m already worn out. But I have to go downstairs and find some kind of food I can force myself to eat so that I can take my antibiotic and steroid. My appetite is completely off, but if I don’t eat something, the meds will be too hard on my stomach, and I’ll lose even more weight (I’ve already lost a dangerous amount this summer).

As I stand at the counter preparing breakfast, it’s becoming more obvious to me that my brain is sill out-of-control. I keep involuntarily leaning forward and bending down, nearly smacking my head on the countertop multiple times. While walking across the room to grab a spoon, my knees buckle underneath me, and I fall to the floor. The frustration never seems to end…

I wish I could forget about it all. I wish it would go away, but it won’t—at least not for a few months. My recovery is going to take time, patience, and lots of courage. The trick is learning to be okay with that—and learning that the bravest thing of all is giving yourself permission to do whatever it takes to get better. No, this does not mean slowing down. To me, doing less means I’m fighting even harder.

I Officially Have PANDAS!

So I went to see a PANDAS specialist this week, and I’ve finally been diagnosed with PANDAS.  My doctor was wonderful and finally took my symptoms seriously.  She even said my mysterious illness from 2006-2007 may have been Rheumatic Fever. And unfortunately, she told me I’m not just having tics, but also chorea, which could explain my strange falls when I walk.  The best words my doctor said were, “You’re going to get better.”

She has put me back on Prednisone for six weeks along with a different antibiotic called Cefdinir.  I am in such a bad flare right now that she wants me to do IVIG as soon as possible. She was very troubled by everything I had been through and decided that eight years was long enough and we should just knock out the disease with the stronger method of IVIG treatment.  Plus, my movements have not improved at all with antibiotics.

I don’t even know what I feel right now.  I’ve waited so long for someone to tell me for sure what my illness was, and now someone did.  I still can’t believe it.  I’m ecstatic and terrified all at the same time…

I’m grateful, because most people with this condition never get a proper diagnosis. They estimate 160,000 people in America have my disorder, but it was only discovered in the late ’90’s, and only several thousand people have received a diagnosis. Many people suffer through years of treating the symptoms, only to have treatments fail. Now, I don’t have to do that for another single day.

I’m shocked, because having a diagnosis means there’s no way for me to deny to myself that things aren’t as bad as they really are. For months, I’ve coped by trying to tell myself that I don’t feel “that bad,” and I still haven’t fully processed what has happened to me. I’m still surprised every time I wake up in the morning, fall down, and realize again that I can’t fully control my movements. When a neurologist gives you a name for your condition, it’s like a Mack truck running you over with shock, because you realize that this is your reality right now.

I’m so, so happy, because I’ve been told I’m going to get better. For eight years, I thought I was stuck with all these crazy symptoms. I believed it was all just going to always be part of my existence. But now, I’ve been told it doesn’t have to be, and it’s an incredible feeling.

I’m worried, because I have to have IVIG in another week, and for 10-15%, it doesn’t work.

I’m scared, because they still know so little about this disorder. How do we really know I won’t relapse in a decade or so? Or even in another few months?

I’m sad, because now that someone has told me what has been wrong with me, I know that I’ve lost eight years of my life to a disease that could have been treated if it had been diagnosed sooner. Even after I’m better, I think I’m going to have to go to counseling to avoid PTSD…

I’m angry, because I can’t understand why any of it had to happen to me. Seriously, why me? And why does this happen to anyone? I am filled with grief when I consider how much pain it has caused me and when I realize there are thousands of others like me. It’s just too much. This has been a major struggle in my Christian faith lately. I’ve read the book of Job a lot, and I’ve just decided that there is no answer for now—there’s only trust in spite of my lack of understanding. That’s why it’s faith—because you don’t see signs or answers—not because you do perceive it with your eyes.

Most of all, I’m relieved, because I finally have an answer and a productive way forward. I’m in good hands with this new doctor, and even though it could take up to a year for me to recover completely, I truly believe that I will get better. Oh, and my doctor said that, given my response to steroids and antibiotics, there’s no way I have narcolepsy.  Phew.  Yes, my PANDAS diagnosis is wonderful news!

Is Looking at My Medical Records Really Too Much to Ask?

This week, I’m going to be seeing three neurologists including one PANDAS specialist. As you can imagine, I’m very nervous but also excited about the possibility of figuring out what has gone on with me for the past eight years. In order to prepare for the appointments, I’ve been trying to get my hands on my own medical records for awhile—with little success.  Forgive me, because I need to vent…

I don’t understand why it has to be so hard for me to look at some pieces of paper—pieces of paper with my personal information on them. The laws say that I have a right to do so. And as far as I’m concerned, they belong to me. Unfortunately, the administrators I’ve had to get in contact with have disagreed. One even had the nerve to tell me after I had explained my situation: “The records belong to us.”

These people were horrible. They hardly wanted to lift a finger to help me. All they cared about was how long they could get away with taking—as if what they’re dealing with was just another office job—nevermind that a person’s health is at stake.

I was eventually able to get the records from two of the three practices. Unfortunately, the third one has fourteen years of my records that include the time of my symptom onset, and they have been the worst to deal with by far. I’m considering taking an attorney with me when I go back, because some of what they told me sounds illegal. To give you an idea of how little they care, this is how the conversation went:

“I’ve been trying for awhile to get my medical records which were transferred to another practice a few years ago. They were very unhelpful and didn’t tell me they couldn’t release the ones from your practice along with theirs. I’m in a predicament because I have a specialist appointment out-of-town next week, and I need my records by Wednesday…”

“Legally, we have two weeks to get them to you.”

Are you kidding me? This is your response to someone who has just explained the nightmare they’ve been through at another practice? This is what you say to someone who’s just told you that they’re sick enough to need to go out-of-town for a specialist?

That’s wrong and unacceptable,” I said, trying to stay calm. “I’m sick, and I need them next week. Look, you have them sitting right there. Can I not copy them for you and take the copy?”

“No, we can’t do that.”

“I’m very ill, and I need my charts to get a proper diagnosis. Is there any way to expedite the process? I’ll pay extra.”

“No, by law we have up to two weeks to get you your records.”

“I don’t have two weeks. You have two weeks by law, but morally, why won’t you even try to help me get them sooner? Is there nothing you can do?”

“We have up to two weeks to get them to you.”

In a perfect world, I know there wouldn’t be such a rush to get my records, but that’s not how life worked out.  It would be one thing if that administrator had shown even a little bit of concern for my situation and told me she couldn’t do anything, but instead, she was a total jerk.  And I’m sure I’m not the only one who has been dealt with in this way. I pity every soul that’s stuck dealing with that woman on a regular basis because they see one of the doctors at that practice.  Who knows?  Maybe she’s crazy enough to surprise me by getting me my records before my appointment on Friday…

Takin’ Roids

I’m no doctor, but recent developments have shown I almost certainly have PANDAS or PANS.

A standard way to see if symptoms are autoimmune-related is to do a steroid burst for five days. The theory is that if inflammation is the culprit, the symptoms will improve with the steroids. It doesn’t work for some true PANDAS/PANS patients if there is still an active infection like Lyme or mycoplasma causing an exacerbation.

But it worked for me. I just finished a five-day burst of Prednisone with incredible results. By the third day, I did not need any Nuvigil to stay awake, and my concentration was so good that I was able to sit down and write a paper and take a test in a timely fashion with no brain fog. My tics and walking problems also significantly lessened, though didn’t completely go away. My depression vanished. It was amazing to feel normal again!

Dare I hope that I’m not actually narcoleptic? I don’t think people with narcolepsy can suddenly stop feeling sleepy during the day. Narcolepsy is an autoimmune condition caused by the destruction of a brain chemical called hypocretin. Once the chemical is destroyed, it can’t be regenerated. Hypocretin regulates wakefulness, so if the loss of it (narcolepsy) was what was causing my sleepiness, I should not suddenly feel this awake with no stimulants. I’ll see my sleep doctor next week, and he’s going to be shocked. I wonder what he’ll say about this…

The next step is treatment with an antibiotic called Augmentin. My doctor prescribed a high dose of it for thirty days, but I’m curious to see what the PANDAS specialists will say. In the next couple weeks, I’ll be seeing an immunologist and a neurologist that specialize in treating it. I should have seen them eight years ago, but how could we have known? I’m hoping and praying that I do not have permanent brain damage from unknowingly delaying treatment for so long. But these last five days of steroids give me hope that I will soon feel normal again….

“You’re Just Tired”

So I tried Xyrem for a week, and I did sleep like a baby. It was actually wonderful—I would wake up in the morning feeling completely rested and not feeling like I needed twenty more hours of sleep. I hadn’t felt that way for eight years. But it upset my stomach so badly that I lost even more weight because I was unable to eat anything. I’m down to a hundred pounds. I was around 111 before this summer…

My doctor is just plain flummoxed by my strange reactions to meds, so he made me stop everything over the weekend—even my anti-depressant. As would be expected, I felt horrible in every way. But one of the worst parts was what someone said to me about how I would be off my meds:

“You’re just going to feel tired…”

I know that she meant no harm by what she said, and for most people, those words may have sounded like a nice sentiment. But for someone who is sick, it was a slap in the face.  I wish I knew what it felt like to get tired. Shoot, I wish I could feel tired in the sense that you think of being tired, because your definition of tired is probably my idea of a good day.  When I say I’m tired, it’s worse than if a normal person went three days without sleep.  My tired is not your tired. Your tired is as similar to mine as being able to swim one lap is to being Michael Phelps.

I’ve been sick for awhile, and often, when I’ve told people I’m tired and sleepy and how hard it is, I get a cold, “Yeah, I’m tired, too.”  Usually, people mean well and might even think they’re being sympathetic by saying they relate.  But that’s the problem—there’s no way you can even imagine my tiredness unless you’ve lived with a chronic illness.

By saying you’re also tired and sleepy like I am, you’re telling me what I’m dealing with is normal and trivial—that it’s just what everyone goes through sometimes. You’re telling me I should just suck it up and deal with it and get some sleep, because that’s what you do when you’re “tired.”  But that’s the difference—your tiredness goes away, but mine does not.

So please, never even imply that a narcoleptic “just feels tired.” That’s like saying the Pacific Ocean contains “a few gallons of water.” No, the ocean is water, and in fact, it’s the most water you’ll ever see and is bigger than you could possibly imagine until you are thrown overboard and left bobbing around by yourself in the middle of it. When you are there, you can realize what an ocean really is. I have the privilege of being stuck swimming alone in an ocean of “tired.” Don’t tell me you know how it feels to be stranded here, because I don’t see you swimming around next to me.

It’s time for all of us to stop telling people that we know how they feel, because we don’t. It’s time to stop responding to others’ pain with insensitive comments. Why can’t we just believe people when they say they hurt? Why do we tell people how they should feel? It’s not that hard to just take a moment to sit down next to someone and acknowledge that what they’re telling you must be as hard as they say it is. That’s all I’m asking—to just listen and not try to tell me what I’m facing isn’t that bad.

My 8 Year Journey Into the Wormhole of Rare Diseases

Hello world!  Welcome to my recovery blog.

I’m a teenager that has Narcolepsy with Cataplexy, OCD, and another undiagnosed illness that is suspected to be PANS (Pediatric Acute Neuropsychiatric Syndrome) or PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus).

I’m writing this blog to raise awareness for my conditions and hopefully, to inspire others to not give up.  There may or may not be a cure for my illness, but I’m on a journey to take back my life, and this blog is for recording that journey.

Once upon a time, I was completely healthy and fit.  But in the summer of 2006, I came down with a mystery illness that tore apart everything I knew.  (more…)

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