PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

Posts tagged ‘OCD’

Why I Quit Therapy

Dissecting and discussing every meal isn’t helping

This week, I quit therapy.

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

Yes, that’s right… Sort of.

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

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

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

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

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

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

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

The One Thing I Hate More Than Therapy

Some college kids stockpile liquors, I stockpile nutrition supplements!

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

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

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

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

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

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

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

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

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

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

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 Won’t Eat

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

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

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

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

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

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

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

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

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

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

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

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

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.

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…

Surviving Holidays with PANS

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

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

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

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

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

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

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

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

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

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

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


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

The Day Recovery Began…

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

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

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

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

But in an afternoon, my whole world collapsed.

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

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

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

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

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

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

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

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

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

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

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

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

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.

Until the Victory Is Mine

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

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

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

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

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

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

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

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

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

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

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

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

Quietly Out of Control

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

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

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

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

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

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

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

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

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

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

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

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

OCD Week: Unlocking The Box

IMG_3818 - Version 2-small

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

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

What I found there instead shocked me.

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

IMG_3816-small

This was no ordinary treasure box…

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

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

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

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

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

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

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

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

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

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

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

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

ADHD: The Struggle Is Real

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

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

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

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

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

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

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

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

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

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

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

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

Why I’m Glad I Got Sick

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

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

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

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

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

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

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

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

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

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

Am I Twenty or Twelve?

P1030195-small

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

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

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

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

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

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

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

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

“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.

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.

Goodbye, Tonsils

Dairy-free ice cream

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

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

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

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

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

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

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

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

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

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

Happy Birthday, Dreaming Panda

Cake

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

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

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

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

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

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

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

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

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

Am I Nuts?

 

Nuts2-small

Recently, a new obsession has been poking my brain:

Am I nuts?

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

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

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

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

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

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

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

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

Another Flare, Another Decision

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

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

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

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

A few days later, I lost it.

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

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

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

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

Thankfully, I realized what was happening, and I made myself go to the basement to tell my parents. At this point, I was sobbing and feeling utterly hopeless. A few minutes later, I began jerking violently. My movements were suddenly the worst they’d been in months.

The next morning, we spoke to my neurologist, and that’s when I got the news:

You need to get your tonsils and adenoids removed. There might be strep or another infection hiding in there.”

It’s not typical for someone whose had two IVIGs to continue to flare every two or three weeks like I do. I’ve been tested for all kinds of viruses and infections, and they’ve all been negative. Apparently, you can have something hiding in your tonsils and not have it show up in blood work. If I do have strep or another infection or virus in my tonsils, it makes sense that I’m having flares so regularly. Unfortunately, the only way to find out if the tonsils are the problem is to remove them.

At this point, I don’t much care what it takes to stop this disease. If surgery will do it, then fine. I’ve been warned that it could be very painful to have a tonsillectomy as a twenty-year-old, but you know what? I’ve been through so much worse. I’m not afraid of the pain.

But sadly, having surgery this summer means I might not graduate college on-time. I was counting on taking online classes from home to make up for the reduced load I took last year. How could I do research and write twenty-page papers on narcotics?

I thought about forgoing the surgery and continuing to force myself through my four-year plan, but I don’t want to anymore. Although I’ve made straight-A’s and won scholarships for outstanding work in the midst of everything, I’ve been miserable in the process. I want to thrive, not just academically, but as a whole person. I decided that it’s better to give myself a shot at getting better by having surgery and taking an extra semester to finish college.

Yet again, so much has changed in just one day, because taking an extra semester means delaying graduate school by an entire year—that’s a whole year I’ll have to figure out what to do with myself at home (maybe that’s when I’ll write my book!). It’s a lot to process, and I’d be lying if I said I was completely okay with it right now. But still, if taking my time with school and getting my tonsils out is what it takes to get me better, it’s a fair trade…

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…

IVIG#2, Two Months Later

Wellbutrin XL: The Latest Addition to My Daily Pile of Meds

Wellbutrin XL: The Latest Addition to the Daily Pile of Meds & Supplements

As my two-month IVIG follow-up approached, I was sure I would have bad news no matter what. It would be bad news if my doctor decided I needed an invasive plasmapheresis treatment. It would be just as bad if she told me we had to “wait and see” if this second IVIG worked, because certain symptoms were still making me miserable.

Well, I didn’t exactly get either piece of news. We made a plan that involved neither option…

In the last few weeks, I’ve realized that my OCD is about to get completely out-of-hand, and I’ve also been slipping back into depression.  And this wasn’t a mild depressive episode—my depression turned me into an unrecognizable lump of a human being, exhausted by even the simplest tasks and unable to enjoy anything at all.

Yet as awful as I’ve been feeling mentally and emotionally, all my other symptoms are disappearing, so the IVIG is starting to work.  Given a few more months, maybe I’ll be completely cured…

Today, I have no sign of a sleep disorder of any kind.  I no longer need Nuvigil to stay awake during the day or any kind of sleep aid to fall asleep at night.  This, on its own, is a miracle, considering that a year ago, my sleepiness was so constant and severe that I was misdiagnosed with Narcolepsy and told I would never get better…

I can go for hours at a time without having any tics or choreiform movements, and when I do have them, they’re hardly noticeable.  It’s quite a transformation from someone who was involuntarily thrashing around violently in the ER eleven months ago.  I do still occasionally have my legs lock up on me when I walk, but I haven’t fallen down in weeks—and I used to fall at least 100+ times per day…

I should also mention that my memory and concentration are coming back, and I’m no longer having that feeling of being completely “out-of-it” or “not there.”  Even though I’m depressed, I have a mental clarity that I didn’t have a few months ago.

If it weren’t for my OCD and depression, I could almost just live with this disease without much complaint now.  But let’s face it—OCD and depression, even if you didn’t have all the other PANS symptoms, can be far more than anyone should have to deal with.

“Have you tried CBT for your OCD?” my neurologist asked.

“I mean, I did eight months of it a couple years ago…”

“I think you need to do it again. Your brain is ready for it now.”

Strangely, I found myself almost feeling happy about the idea of going back to therapy—not because I enjoy it (I actually hate it), but because I’m ready to get rid of my OCD and social anxiety. I was considering going back to therapy before my doctor recommended it, but now that she told me I should do it, I really didn’t have any excuse not to go. I remember how hard ERP therapy was two years ago, but the freedom I gained was so worth it. I know it’s still not going to be easy this time around, but it’s time to send my OCD packing, once and for all.

But what about my depression?

We have a solution—I’m now taking Wellbutrin XL, and after a few days on it, I’ve begun to feel significantly better. I have more energy and don’t feel like I’m dragging myself through each day. I’m actually happy. I’m slowly getting back into the things I used to enjoy.

From what I understood at my appointment, my doctor said that since I no longer have as many antibodies interfering with my brain’s dopamine receptors, my body hasn’t yet re-calibrated to make the right amount of dopamine.  I think she said I don’t have enough dopamine yet, so that’s why I’m depressed.  Our hope is that the Wellbutrin will help re-balance my brain chemistry.

I’m certainly not glad that I need an anti-depressant and have to go back to therapy for my OCD, but I’m glad that things are going to get better. For that matter, I’m glad that so many of my other symptoms are far better than they once were. I’m relieved that, for now, I’m not doing any more IVIG or plasmapheresis.

Who knows? Maybe this really is the beginning of the end…

Alone

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While studying in my room one night, I heard laughter and music outside my window and smelled gas and burgers. I looked outside, and half a dozen people were having a wonderful time sitting around a grill, sharing food and stories about upcoming final projects.

And that’s when it hit me—I’m so lonely that I don’t even know I’m lonely.  I’m so lonely that I forget how much I miss spending time with people—until I see others doing it.

I know a lot of people at my college, but I maybe only have one or two close friends. Maybe…

Why is that? Despite the lies my social anxiety tells me, I don’t actually think I’m that unlikeable. Even factoring in the minor tics I now live with on a day-to-day basis and my OCD rituals, I’m not so weird that people should avoid me. I’m not unkind—on the contrary, I bend over backwards for the people I love.  So where are my friends?

The problem is that I never go to anything I don’t have to go to, and I never do anything I’m not required to do. How can I make plans with anyone when I never know how I’ll be feeling in the next few hours, let alone in a few days?  I try to explain to people that I’m ill, but if you don’t spend time with someone, how can you get to know anyone?

In my entire college career, I’ve only once gone to a party—and I left after a few minutes. People invite me to parties and concerts and other outings, but more often than not, I decline. And yet I still wonder why I’m always alone on a Friday night. And some part of me always wishes things weren’t the way they are.

You see, it takes too much mental energy for me to go anywhere. I can hardly get to class sometimes because of my lingering cognitive deficits in planning, organization, and memory. I’ve had nights where I cried for an hour just thinking about how hard it would be to get ready and make myself get out the door to class the next morning. Do you really think I would willingly put myself through that unless I had to? No wonder I don’t go anywhere. No wonder I’m always alone.

Another reason I choose to be alone is that I don’t want to get exposed to any illnesses. It’s gotten to the point where, if I see a crowd or hear about an event, all I can think about is how many germs will be there. I know how bad my flares are when I get sick, and I don’t want to increase my chances of flaring. I’m sure that my contamination OCD only makes the fears worse—and when I do get sick, all of my symptoms (including the OCD) get worse, sending me into a vicious cycle. So I stay alone.

Even if I did make it to a party, I’m sure I would have a sensory overload. Sometimes, I can’t stand the sound of people talking, especially if it’s loud talking. Sometimes, even when I’m just spending time with my immediate family (whom I love), it gets to a point where all the words and back-and-forth conversation and noise become too much for me to handle, and I have to go be alone in my room for a while. How could I possibly go to a wild college party (even if I wanted to)?

If I didn’t have a sensory overload, then I’d surely have to deal with my social anxiety/OCD. After almost every interaction I have with someone, I get this feeling that I’ve probably offended them somehow, so I go over the conversation over and over again. I think about it a lot and imagine what that person must think about me. When I see that person again, I always think, “She might not like me anymore because I said x and did y,” and I sometimes don’t talk to her as much because of this. In reality, I know it’s irrational, but my brain always replays my conversations anyway. Should I willingly put myself through a whole night of obsessing? No, I think I’ll just be alone…

On a great day, I can spend time with my roommate cracking ridiculous jokes in the living room or maybe even taking a bike ride around campus. It’s much easier for me to interact with one or two people at once.

But when I can’t do that, most of the time, I’m actually quite content to sit in my apartment alone with a cup of hot tea and my ideas. Or if I have enough energy to get out the door (but not to talk to anyone), I’m quite happy to go for a run by myself in a quiet park. After all, I’ve always been an introvert, even before I got sick.

But sometimes, every once in a while, I wish I felt like I could choose to be on the other side of my window, hanging around a grill with my friends without a symptom on my mind…

I Don’t Know Anymore

Well, after dreading it and hoping and praying it wouldn’t happen again, I’ve just had another bad flare.

On my way to class last week, I overheard someone say she had Strep throat.

No. I can’t flare again, I thought to myself. It’s not going to happen. I’m still on antibiotics. I’ve had two IVIGs. I should have plenty of good antibodies if I’m exposed. I’ll be fine…

But then, when I got to class and saw one of my lab mates who hadn’t been around in a few days, I asked where he’d been—and immediately wished I hadn’t:

“Oh, I had strep throat. It was a really bad one!”

There was no way I hadn’t been exposed. My school seems to have a problem with Strep outbreaks, and even though I’m on antibiotics, I can still flare. My doctor explained to me that it’s like being “allergic” to Strep—just being around it, even if I don’t get a full-blown infection—could send my immune system into a tailspin.

I tried to convince myself that maybe this time would be different, but deep down, I knew it wasn’t right that it had taken me five hours to write a one-page paper the night before. I knew I suddenly had no concentration again. I knew I’d been ticking a little bit more. It all made perfect sense now.

Just as I was beginning to hope this was the extent of the flare, I finally fell off the cliff. The world began to slip away—it was that feeling of being stuck in a fog that separated me from everything else. I heard someone make a “bad” noise, and I became so anxious that I had to run into the gym to do a 9 mph sprint on the treadmill (in spite of the pain from my knee injury). The next day, I just started crying uncontrollably for no apparent reason. The depression came back.

“You know what this all means, don’t you?” I sobbed to my mom when I could finally call her.

“That you’re likely to need plasmapheresis. Yes, I know… Have you taken more Prednisone yet?”

“No! I’m sick of %$&^%$ Prednisone! I’m done with this ^%$&^% disease!”

I could hear my mom on the other end beginning to cry, too. Most days, my family and I can all hold it together and think about everything I’ve accomplished in spite of this illness. We can pretend that I’m mostly fine most of the time, but it’s moments like these that tear our hearts apart—moments when we are confronted with the worst of it and the realization of how helpless we are to fix it.

On top of not feeling like myself at all, I now had the added burden of worrying that my IVIG hadn’t worked. I knew I’d have to come home for the summer after all. I knew my neurologist might be suggesting plasmapheresis or Rituximab or another IVIG at my upcoming follow-up. I knew I couldn’t continue my Prednisone taper for the rest of the semester. I knew I really wasn’t okay yet, and I was devastated.

I ended up complying with my parents’ wishes and doing a 5-day burst of higher-dose Prednisone. As much as I hate the stuff, I hate the way I feel when I flare even more. I’m doing a lot better, but I’m still having tics and having trouble finding words and speaking in coherent sentences. But I’m more okay than I was.

I don’t know what my future holds anymore. Maybe I won’t have a flare this bad again—or maybe I really have stopped getting better. Maybe this IVIG will start to work soon—or maybe I’ll get off Prednisone this summer and discover that I’m still bordering on insanity without it. I don’t know. Only time will tell…

My 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.

IVIG #2: I’m Finally Aware

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I just finished my second, and hopefully last, IVIG treatment!

Recently, I’d been feeling like I’d made no progress with any of my symptoms after my first IVIG.  But strangely, it was the process of going back for another IVIG that showed me this was simply untrue.

When I had the first IVIG in August, if I got out of the chair to stand up and stretch my legs, I started doing a wild choreiform movement dance. I couldn’t even look at my doctor to talk to her because I was moving so much. I had to hold onto the IV bag pole to keep from falling down when I tried to walk down the hall to the bathroom.

This time, I hardly had any movements, and the ones I did have were barely noticeable to anyone besides me—except for when I took one spill in the hallway…

While my movement disorders have improved significantly, I’d say the main difference between last week and my August IVIG has been that, before my first IVIG, I don’t think I fully understood how serious this disease could be.

In August, I didn’t realize that, if it weren’t for the Prednisone burst that had brought me back a few weeks beforehand, I could’ve starved myself. It didn’t occur to me that if we hadn’t figured out I had PANS, I would’ve been locked up in a psych ward with constant monitoring so I wouldn’t hurt myself. I didn’t grasp that I needed IVIG to avoid a lifetime of mental illness, disability, and unimaginable suffering.

But now I get it.  Sometimes, it’s too much to process.  I simply cannot bear to think about what would’ve happened to me without treatment.  I nearly lost everything…

During the IVIG treatment this week, I was also well enough to understand how bad things still are—although it’s a good sign that I’m able to recognize this. I know that my general and social anxiety and OCD have been incapacitating, all of my executive functioning abilities are very poor, and everyday tasks are sometimes impossible.

But even if some of these symptoms aren’t much better than they were in August, my perception is much improved. It’s like someone has finally given me a pair of glasses for my mind, and I can finally see what I’ve been missing for so long. While it’s painful to know there’s so much I couldn’t see, it’s comforting to know I’m coming back in some ways.

Unfortunately, being more aware means I’m also able to worry more.  I worry because, if this IVIG doesn’t bring me back to 100%, I’ll be spending a month of my summer in isolation following a five-day plasmapheresis treatment in the hospital. If that fails, I’ll be going through Rituximab infusions—a form of chemotherapy.

I had big plans to take summer classes and get a job, but how can I plan anything when I have no idea whether I’ll be able to leave my house or not this summer? All I want is to not suffer so much—especially since I’m so conscious of my suffering now. I just want to be allowed to be myself.

Sometimes, I cannot sleep at night because I’m afraid I’ll never get back to who I am. Or even worse, I worry that I won’t know that I’m not completely better, and then I won’t get the treatment I need, and then I’ll slip into a relapse just as I’ve finally returned to a good life—and then I’ll go through this whole thing all over again.

But I don’t want to worry—I want to enjoy the improvements I’ve already seen after this second IVIG: my OCD almost completely disappeared overnight, my memory is much better, I’ve been able to contribute to discussions in my classes this week, and I’m even enjoying things again. This is wonderful, almost miraculous, news. Oh, that this trend would continue…

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…

Losing My Mind… Halfway

Lately, I’ve been having a harder and harder time with cognitive problems. I make stupid mistakes in school now that I’d never make in the past. I say the wrong words without knowing it. I mix up left and right as if I were six years old. I’m very forgetful. I do a lot of small but silly things everyday—little things that anyone might do once in a while but the fact that I do them so frequently makes me feel as if I’m losing my mind.

I can manage as long as I make a plan or if everything goes exactly the way I expect, but the moment something comes up that doesn’t fit into my notions, I’m thrown for a loop and don’t know how to proceed.

The other day, I was filling up my car at the gas station, and after scanning my credit card, the pump told me to go pay inside. I didn’t understand. I had no idea what to do, but I did go inside to the cashier.

“Hey, my pump isn’t accepting my credit card and told me to come inside.”

“What pump are you on?”

“Umm… I have no idea… Let’s see… Well—hey, can’t you just fix it in here maybe? And then I can go pay outside?”

I was stuck on the idea that I always pay outside at the pump and couldn’t wrap my mind around paying inside—even though I used to always pre-pay at the cashier when I lived in another town.

“I don’t know what pump you’re on.”

“Okay…” I looked out the window. “I think I’m at number three. Could you please reset it from here so I can go pay for it?  How is this supposed to work?”

At this point, the cashier was slightly amused that I was so confused by the idea of paying inside. She tried to explain that I could do the same thing inside, but in the end, I still don’t understand what happened. I gave up on understanding and just handed her my school ID to pay for the gas–and then everyone in line really started looking at me like I was crazy.

I quickly pulled out my credit card instead and apparently paid, because I eventually got some gas in my tank. But the whole incident made me feel like a total idiot and like someone could’ve taken advantage of me.

The worst part of my cognitive issues is the fact that, by definition, I’m not always aware of when I’m struggling. I always have this sense that something is “off” about me, but I can rarely point out to you what’s wrong.   How can I trust myself at all like this?

At the same time, I’m functioning at a very high level and have no problems doing certain complicated tasks. Still, I know my mind isn’t what it used to be, and it’s frustrating and heartbreaking to be aware of this and to not know what I’m doing wrong.

Knowing that I’m not 100% mentally means I’m only losing my mind halfway…  Sometimes, I wish I’d go ahead and lose my mind completely so I wouldn’t feel the grief of knowing I was losing it.

But don’t you see? I’m not crazy. I’m not stupid. I’m just living with brain inflammation that’s temporarily masking who I am and what I’m capable of. Someday, when I’ve been cured, I know that I’ll get everything back, and people around me will finally see what I still see in myself somewhere—the same intelligent and rational person I’ve always been.

Slamming the Door on OCD

It’s just a doorknob—just a little piece of metal attached to my door. For most people, it’s an overlooked necessity that doesn’t get a second thought. But for me, it’s a peril.

Until a few days ago, I’d gone the entire school year without ever touching my bathroom’s doorknob. I avoided this by either leaving the door cracked enough to let me use my feet to open the door, or I grabbed the doorknob with a designated washcloth that I kept nearby. Unfortunately, I often don’t touch any other doorknobs or handles of any kind in the rest of my apartment, either—not the refrigerator, not the microwave, not the cabinets, and not even the doorknob to my own bedroom.

I had been bothered by this set of compulsions for a long time, but the idea of going through Exposure-Response Prevention therapy to get rid of them seemed like much more work and trouble than just continuing to follow my rules—until I kept getting texts from my roommate kindly asking me to stop slamming doors.

I was rather confused at first. I had no idea I was slamming doors, but after a lot of thinking, I realized that some of my compulsive behaviors had become completely unconscious. I realized that a lot of the time, the only way I was closing a door hands-free involved slamming it.

To make matters worse, my roommate told me she has phonophobia: fear of loud sounds. Every time I closed the doors my way, she got debilitating anxiety. (We’re quite a pair aren’t we? The OCD girl’s compulsions set off the phobic girl’s anxiety.)

One part of me was mad that anyone would dare ask me to stop my compulsions, and I was embarrassed that they’d gotten so bad that I couldn’t. Another part of me, knowing how disruptive anxiety can be, felt horrible for causing my friend distress.

So this turned out to be my final straw—I now had the perfect excuse to make myself do some ERP to get over the door-closing compulsion.

That night, I decided to do the unthinkable: grabbing the bathroom doorknob without a washcloth and without washing my hands afterwards. As I trudged over to the door, my heart began to pound. My legs started shaking. My hands trembled as I reached for the knob. Before I could talk myself out of it, I quickly grabbed on and then stood there for at least two minutes.

My brain soon realized that touching the doorknob wasn’t dangerous after all, and my physical anxiety symptoms died down after a few more minutes. After a while, the exercise wasn’t unpleasant at all.  I did so well with this exposure that I proceeded to go touch many things in my apartment that I’m not allowed to touch.

Although I’ve since reverted back to using the washcloth on the doorknob, I’ve shown myself that it is possible to break free and not nearly as unpleasant as I’ve imagined it to be.  However, I’m still rather shocked that my OCD has once again gotten to the point where not doing a compulsion put me on the verge of a panic attack.

But you know what? Even though doorknobs have shut me into OCD again, I’ve realized that if I keep touching them, some day, they will allow me to reopen the door to my freedom.

Why Kids with PANDAS Are Brave

Recently, I had the chance to meet with a family who had two kids with PANS. We had some great conversations, and I’ll probably write a whole other post about our meeting another time. But there was one exchange between me and the seven-year-old that I can’t stop thinking about:

Me: “You’re very brave.”
Little PANDA: “Why?”

He was clearly surprised by my statement. I could tell that this idea was completely novel to him and that no one had told him this before. I didn’t expect a seven-year-old to have spent a great deal of time cogitating on the way he’s handling a disease, but I still found it curious that he had no concept that he was brave for continuing to fight it. I’ve thought about his reaction for awhile, though, and now it makes perfect sense…

You see, when you’re a kid with PANDAS or PANS, you live in a world of fear and anxiety. One day, you were fine, and the next, everything became scary. You don’t understand the things you do anymore, and sometimes, you’re even afraid of yourself because you don’t know when you’ll lose control next. You feel like a coward for being worried about things you know don’t make any sense—things that no one else around you fears. You feel crazy. You feel trapped. You feel anything but brave.

If you’re a seven-year-old living in that kind of world, of course you’d never think about how brave you are. But you can have courage and not even know it…

“You’re brave because you’re fighting against PANDAS,” I told him. “That’s a hard thing, but you’re doing it.”
Little PANDA: “Is my sister brave, too?”
Me: “Yes, she’s brave, too.”

PANDAs are not cowardly for having severe anxiety. They are not weak for losing control of their emotions. They are not crazy for carrying out compulsions. They are not freaks for having tics and other involuntary movements. No, they are children doing their best at fighting a devastating disease that’s attacking their brains—a disease they cannot control. None of us ever wanted to do odd behaviors and angrily lash out at our parents—when we do it, most of us only feel worse about ourselves afterwards. We hate all these symptoms, but we are doing the best we can to get through each day—and that takes courage.

Being brave doesn’t mean you aren’t afraid. Brave is going on in spite of the fear—and this is what all PANDAs are doing every day, whether they realize it or not. I hope more and more parents will start to understand this and remind their children that having irrational fears and continuing to fight them is brave.

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.

My 6-Mile Run… To the Pharmacy

Managing my medications is a big production. If I didn’t have a pill case, there’s no way I could possibly remember to take all eleven things each day.  Every week, I sit down and fill the case for the week. It takes half-an-hour. It used to take longer when my OCD was worse and I had to check and re-check everything a ridiculous number of times. I only check it once now.

Just a few of my daily meds

Just a few of my daily meds

As you can imagine, I am over at the pharmacy a lot between the Prednisone, Nuvigil, Augmentin XR, and all the over-the-counter medicines and supplements I take. You know it might be a little out-of-hand when you walk up to the counter and the pharmacist says, “Oh, it’s you again.” True story.

A few days ago, as I was lining up all the bottles and getting ready to put everything in my case, I got to the Augmentin XR and realized I only had a few days left. I needed to go back to the pharmacy… Again. The problem is, the pharmacy is a mile away from where I live. If I drove there, I would lose my good parking spot. Walking would take too long.

So I did the only logical thing: I decided to turn my trip to the pharmacy into the destination for my first ever 10 km run.

Do you realize the irony here? I was about to run six miles to go pick up the medicine I need to take because I’m sick. Hmm… How sick can I really be?

I put on my running gear, grabbed my pepper spray and medical ID, and headed out across town. When I had run one mile, I was hardly tired at all. By the second mile, I was barely sore. By the time I reached mile three, my joints were complaining a little bit, but I thought to myself, “I’ve only gone three miles. I feel great!”

Only three miles. Just a few months ago, I could hardly run one mile. The fact that I’m now thinking of three miles as a short run is incredible.

At mile five, I took a wrong turn, and I realized I was lost. But hey, I had 1.2 more miles to get to the 10 km goal, so I kept running. Unfortunately, when I finished, I ended up 1.5 miles away from the pharmacy. I felt like I could have kept running to get the rest of the way there, but I didn’t want to push it. Besides, I had done it—I ran 10 km (about 6.2 miles).

When I got sick in 2006, I had been training to work my way up to running a 10k race. And then PANS hit me like a train, and I had to stop running altogether before I got past running four miles. But I had done it now, albeit eight years later. Take that!

As happy as I was for this victory, I also realized that I was in quite a predicament. I didn’t know the area I had ended up in, it was getting dark and cold, and the pharmacy was 1.5 miles away. Should I wait at the bus stop? Should I call a friend to pick me up? Should I get a cab? I decided to walk and use the time to call my parents.

The amazing thing is that the worry that I physically wouldn’t be able to walk 1.5 miles because of my falls never even crossed my mind at the time. I just started walking, and the whole way there, I didn’t even have the slightest knee-dip or feeling of paralysis. I was just a normal, tired runner walking home (and stopping at the pharmacy on the way there).

On my good days, I often start to think, “Hey, maybe I’m better now!” But then I look at my pill case and realize that it takes 24 pills each day to feel the way I do—and I’m still not 100%.

Still, even if I’m walking around carrying the pills, at least I’m walking at all. For now, I can dream about the day when I’ve left all the bottles behind and don’t even realize it—just like I didn’t realize how amazing it was that I walked 1.5 miles…

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.

What I Wish I’d Told My Parents

This time of the year is always difficult for me. Seven years ago at this time, I had the worst PANDAS flare of my life and descended into a terrifying world of OCD, odd behavior, insomnia, and depression. For a time, my symptoms completely tore apart my family.

I’ll never forget when I first made my parents cry. I was twelve years old, and we didn’t even know I had OCD, let alone PANS.  Had we known, things never would have gotten so bad.  My parents were almost as terrified as I was at the change they had seen in me.

I thought I was going crazy. I had to speak a certain way. I had to walk “just right.” I needed to be sure I chewed my food in a particular manner. And God-forbid if I breathed the wrong way… I also felt like I needed to jump out of the second-story window of my room. Why? I didn’t know. It just seemed like something I should do—it wasn’t because I was trying to hurt myself. I would impulsively taste things that shouldn’t be tasted—like shower gels and wet rocks I found in the woods. Again, I didn’t know why I did those things, but I just felt like I had to.

I refused to do my schoolwork. I looked at the words on the page of my textbooks, and they become horrible blasphemous thoughts in my mind. The thoughts never left me alone. Every moment of every day, no matter what I did, there they were to torment me. Everything I did was used against me to become something terribly immoral that showed I was a wicked child. To me, having the thoughts come was just as bad as saying them out-loud and meaning them—damning and perhaps unforgivable.

During school, I would sit and stare at the blank lines of my notebook paper, unable to explain that I was terrified of what the words I was supposed to write could become in my mind. My mom (who homeschooled me at the time), eventually would become exasperated, and I would run out of the room both because I couldn’t handle the OCD thoughts and because I couldn’t stand to make her so upset. But I couldn’t even tell her that I never wanted it to be that way. I didn’t want to not work. I didn’t want to make her cry. I just wanted the thoughts to not be there.

“Why are you doing this to your mother?” my dad asked one night, as the three of us sat around the kitchen table. “She is sacrificing her time to teach you, and you aren’t even trying to work with her.”

I will forever remember that lonely tear that streamed down my mom’s face at that moment. My best friend, teacher, and care-taker had now become someone I had deeply wounded by unintentionally fighting against her.

I never meant it. I wished I could tell my parents that I wasn’t trying to upset them. I longed to break my silence and explain my inner battle, but telling anyone the horrible thoughts I was having would show them how terrible of a person I really was. So I sat there in silence that night, unable to respond with even one word, because whatever I said would be turned into another obscene thought in my mind. I couldn’t let that happen, because it might get me thrown into Hell forever.

“Why won’t you answer me?” my dad said.

“I—I…” I couldn’t get the words out. Another thought had come into my mind, and I had to be sure I canceled it properly before going on. “I—just… I don’t know. I am—I can’t.” The thoughts were overwhelming my mind again, and I was terrified that I wouldn’t be able to know I had cancelled them properly if I said anything else.

I couldn’t handle seeing my parents so upset anymore. I ran upstairs and slammed the door to my room and cried. Why was this happening to me? How could I have let my mind become so out of control? I knew I had no control over the thoughts, yet I was somehow convinced they were all my fault.

If there is one thing I would have told my parents back then if I could have (besides telling them that I actually had an autoimmune disorder causing all my OCD and strange behaviors), I would tell them that I hated what I had become and what I was doing to them. I would tell them that I didn’t want to be doing any of it—I was simply scared out of my mind, by my own mind.  I wished I could have told them that all the pain I caused them was wounding me even more.

I longed for my parents to understand the constant terror that I lived in and the feeling of utter hopelessness so that they could see I wasn’t just being a brat. I wanted to not feel like I was so alone. But I was afraid that talking about the thoughts would end up proving to me and everyone else that I really was a reprobate. As painful as it was, it seemed like the only thing I could do was to keep pretending that my silence and school-refusal was just me being a rebellious preteen.

After three months in a perpetual state of OCD fear and bizarre and even dangerous behaviors, I finally began to come out of the flare. Looking back, I had been having joint pain, fatigue, and consistent low-grade fevers throughout the entire episode—symptoms of another strep-related illness called Rheumatic Fever. When these began to disappear, so did all my psychiatric symptoms. (Of course, my pediatrician at the time never even thought to do a strep culture and wrote it all off as “depression” and “isolation from homeschooling.”)

It took five years of time passing and me eventually being able to name my intrusive thoughts and compulsions as OCD before I would even let my parents bring up anything about what happened in 2007. When I came out of the flare sometime in early 2008, I apologized profusely for the wounds I unwillingly made in my relationship with them. But those wounds did heal, and my brain is healing, too. Today, my parents and I have a great relationship, and of course, now they understand what I was dealing with—and they remind me it was never my fault.

I wish I could have told my parents in 2007 where things would be today.  I wish they could have seen me now, in my right mind, going to college.  I wish I could have told my parents that, even though I was going to have another terrible flare at nineteen that led to a misdiagnosis of narcolepsy, made me temporarily lose the ability to walk, and caused a tic disorder to appear overnight, we would finally find the answer to all of my strange symptoms.  I wish I could have told my parents that even though my case was extreme, I was going to get 100% better.

Most of all, I would tell my parents “thank-you” for persevering through my strange behavior in 2007, for not giving up on finding a diagnosis, and for sticking by me as I continue to recover today.

Steroids Turned Me into a 12-Year-Old Boy

It’s been more than three months since I’ve been on Prednisone. I hate the steroid, but I love it, too, because I know it’s the reason I’m able to live a somewhat normal life right now. I would never want to take Prednisone unless I absolutely had to, though, because the side effects are pretty awful: weight gain, increased appetite, insomnia, moon face, acne, decreased bone density, increased susceptibility to infections, etc… But I have to take it to keep the inflammation down and help stop the autoantibodies from attacking my brain’s basal ganglia.

Every time I’ve tried to taper off the steroid since starting it in July, the depression, anxiety, OCD, tics, movement problems, and inability to eat have come back. I don’t have a choice but to keep dealing with these terrible side effects, because living with PANDAS is far more terrible than dealing with Prednisone—even though the steroid has essentially turned me into a preteen boy.  I can explain…

Because of Prednisone, I now have horrendous acne all over my face… I just started growing a beard. I shaved my face for the first time yesterday, and now I have razor burn all over it because I have no clue what I’m doing… I think about food all the time because I’m always hungry—even after eating excessive amounts of food… Yes, steroids have turned a tiny nineteen-year-old girl into a starving, moon-faced twelve-year old boy.

Because my sleepiness had gotten so out-of-hand again, I increased my dose last week. The first time I did a 5-day burst of 50mg this summer, my sleep issues disappeared. I was hoping for the same results this time around. Unfortunately, it didn’t work out like that. I’m still just as sleepy with just as much brain fog as I had last week. In addition to more steroids, I’m also back on Nuvigil for now to keep me awake—with success.  I did have a cold a couple weeks ago, so I’m hoping and praying that this flare will calm down after I get over it.

I’m not going to lie—I’m pretty discouraged that the sleep problems have come back. It really scares me that Prednisone isn’t enough to stop them anymore. Is the IVIG not working? Am I going to need plasmapheresis after all? What if I actually have brain damage that’s causing the sleep disorder now?

But there is a bright side to it all…

While I may have a moon face, and I may have terrible acne, and I may not be sleeping right still, my depression is gone. Just gone, because apparently, it’s related to the inflammation in my brain (hence it disappearing with more steroids).

I’m feeling like myself for the first time in at least six months. I’ve actually been able to enjoy my hobbies. I look at my full calendar, and instead of dreading ever last thing on it, I’m happy to see all the events (and even school assignments) penciled in on each day. I actually like my life and have stopped hearing the intrusive thought, I hate my life… I hate my life…. I hate my life… over and over again.

While I’m sad to have to be sleeping so much again, I am overjoyed at the fact that I feel like myself in other ways. Sometimes, the trauma of the last few months comes and hits me like a train, and I just cry. But lately, the realization that I’m “back” also makes me cry—with tears of joy. When an illness tries to take everything from you, the moment you get any part of you back, you will appreciate it so much more than you ever could have before.

And I believe and hope that someday, I’ll know what it’s like to feel like myself and to feel awake…

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.

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.

Another Flare…

Last week, I had my worst flare since everything really went downhill in June. I’m happy to say that the flare is gone now (thanks to more Prednisone and maybe the IVIG), but now that I’m coherent again, I thought I’d share what my PANDAS flares can look like. Please bear in mind that every person reacts differently to this disease, though.

One morning last week, I woke up and didn’t want to get out of bed. It felt like I was in slow-motion. By the time I got to class (a miracle in itself), I realized I was completely out-of-it. I felt removed from everyone and everything—like I was outside my body. I felt like my personality was gone. I couldn’t pay attention for very long no matter how hard I tried. When I did manage to catch something my professor said, I couldn’t process what he was saying.

Attempting my homework was a disaster.  I tried to read the questions on the assignment, and while I could understand any of the words in the sentence individually, I could not piece together what the sentence as a whole meant.  I had to reread it over and over again very slowly until it made sense. It felt like trying to read another language.

To make matters worse, it was a timed assignment online that I was working on. I’m supposed to have double time for everything, but for complicated reasons, I didn’t have it on that assignment. Naturally, anyone would be a little anxious about that. But in a PANDAS flare, to say being timed made me anxious is the understatement of the century. My heart was pounding. My hands began to sweat. I hyperventilated through most of the assignment. It felt like life or death.

Then, there were the OCD symptoms.  I had intrusive thoughts a lot of the time.  I wouldn’t touch anything in my apartment without wiping it down or washing my hands afterwards.  I must have spent two minutes washing each time.  I had to feel decontaminated and “just right” before I could stop.

Later that night, when I finally managed to get in bed, there was a new obsession to torment me. This particular obsession was especially bad, and the compulsion I had was impossible to carry out at that moment, so I was stuck just sitting in bed with the anxiety. In the long run, it’s better to try to resist the compulsions, but having to sit on the verge of a panic attack was extremely unpleasant.

As the anxiety began to sky-rocket, the movements also got out-of-control. After a few minutes of breathing into a paper bag and trying to distract myself from the obsession, I jumped out of bed and reached for some ibuprofen. (Ibuprofen often helps PANDAS/PANS patients like me, because it apparently reduces brain inflammation.)  Because of my chorea, I was flailing all over the place and fell down at least twice on the way across the room. I tried to stand still to open the bottle, but instead, my brain just made me slowly crumple down onto the floor. Amazingly, once the ibuprofen began to kick in, the movements and the OCD became manageable.

One thing that makes PANDAS/PANS different from regular OCD or tic disorders is how suddenly it comes on. Keep in mind that the day before my flare started, I was feeling close to normal (okay, whatever I think of as “normal” at this point). My OCD had been moderate, and it suddenly turned very severe over several hours. But my doctor has put me back at a higher dose of Prednisone for three weeks, and thankfully, after a few days of it my OCD has gone back to my baseline—without even needing ERP or CBT. Severe OCD isn’t supposed to just go away in a few days when you take steroids—unless it’s PANDAS or PANS.

Going through another flare was extremely unpleasant, but it’s made me so grateful all over again to have an answer and to be receiving proper treatment. I can’t imagine continuing to have to live my life spending weeks or months recovering from each flare and wondering when the next one will be—but I won’t have to before long. Things are getting better now. I’m daring to hope that last month’s IVIG is going to work and stop these flares…

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…

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!

De(pressed)ad Again…

I don’t even know where to start since I last wrote.  I seriously think I’m going crazy.

The other night, I got in a really bad way.  During the day, I would just sit down and stare into space, because that was all I could do. I had no concentration whatsoever. Whenever I tried to do homework, I found myself just staring, thinking about nothing. I tried to make myself focus, but then I’d just start staring again before I realized I was doing it.

(more…)

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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