PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

Posts tagged ‘Depression’

I Have No Idea What I’m Doing Anymore

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

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

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

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

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

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

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

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

Why I Almost Quit Lyme Treatment

I pretty much take an entire pharmacy every day

 

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

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

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

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

I can’t do this anymore…

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

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

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

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

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

The True Meaning of “Tired”

tired-panda-small

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

“I’m tired.”

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

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

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

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

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

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

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

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

Why I Look Forward to Tomorrow

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

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

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

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

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

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

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

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

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

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

How PANS Really Feels

PANS is an explosion inside my brain

PANS is an explosion inside my brain

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

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

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

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

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

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

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

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

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

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

Stuck in the In-Between

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

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

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

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

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

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

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

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

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

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

Why I’m Throwing Up My Hands

How much can I let PANS steal this time?

How much can I let PANS steal this time?

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

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

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

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

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

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

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

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

I’ve decided to go back to school.

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

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

The Terrible 2’s?

Cake

Happy 2nd birthday to me!

This week, I celebrate my two-year blogiversary.

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

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

I flared and started heading for a relapse.

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

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

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

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

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

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

PANS and Romance: It’s Complicated

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

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

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

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

The answer is… It’s complicated.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Flare or Fluke?

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

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

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

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

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

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

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

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

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

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

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

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

When Strep Attacks…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Can Hamburgers Stop Flares?

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

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

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

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

But then the PANDA bear grabbed me again.

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

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

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

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

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

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

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

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

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

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

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

PANDAS, Described in 1 Word

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

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

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

Terror.

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

Worry Is Taking Over My Life-small

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

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…

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…

I Don’t Know Anymore

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My Last Piece of Freedom

Last summer, over the course of a few hours, I suddenly became unable to walk due to an autoimmune attack in my brain. If I tried to go from my living room to the kitchen, I fell multiple times because my legs would suddenly give out.

In one moment of insight during that horrendous time when I had not only lost the ability to walk but had essentially lost my mind, I said to myself, I’m going to run a marathon someday and overcome this. And I’m going to beat my best 5k time from eight years ago within the next year.

It was truly a crazy idea. Maybe I still wasn’t in my right mind when I came up with that…

For some strange reason, although I often fall down if I walk long enough, I have never once fallen while running. As far as I’m convinced, when I run, I don’t have PANDAS—I have freedom. I am in charge of a body that turned against me in the worst way imaginable. My love of running has made my ongoing walking problems far less painful to bear.

When I tried a couple runs after my first IVIG treatment in the summer, I was still so weak and malnourished that I struggled to finish a single mile at a very slow pace. But I didn’t give up…

As I started to get better, I got stronger and faster to the point that it didn’t seem unreasonable for me to sign up for a half-marathon a couple months ago. I was running up to twelve miles at once. Then, last month, I finally crushed my pre-PANDAS 5K record by a whopping 2 minutes.

Although my PANDAS had been getting worse and worse at the same time, to the point that I needed a second IVIG last month, my running successes always made me feel on-top-of-the-world in some ways.

But one night, something went horribly wrong…

I set out on a group run, and the farther we went, the more I noticed my quad hurting. I’ve had the feeling before, and usually, when I kept running, it went away. Unfortunately, this time, it didn’t.

I finished the run at what felt like a good pace, but suddenly, I was in even more pain. My knee was extremely swollen and painful. I couldn’t walk—not because of my brain, but because I was injured.

Knee

I’ve since been diagnosed with Runner’s Knee. Basically, my knee cap is not tracking in the right place, so it’s rubbing against the cartilage. My poor quad was simply trying to compensate for my bad knee on the run that night.

I’m devastated. Not only have I lost the ability to walk normally—I’ve lost the ability to run. I have no escape from my illness anymore. I’ve lost the one thing that almost always had a way of bringing me joy, no matter how bad my depression was.

Yet again, another thing meant to keep me healthy has turned against me—just like the antibodies that attack my brain. Is PANDAS going to defeat me?

I really didn’t need another thing to deal with right now. Ever since I’ve had to rest my knee by not running, I’ve been having nightmares about not being able to run. Running was my last piece of freedom, and some days, it was my only window into normalcy. Running was the one thing that gave me hope that my body wasn’t completely broken. Running was a way for me to pretend to be healthy. Running was what inspired me to keep persevering through my terrible flares.

There’s only a month until my first half-marathon. I was supposed to finish it as the ultimate slap-in-the-face to the disease that left me unable to walk. But can my knee heal up in time?

I’m starting physical therapy this week, and you can be sure I’m going to try as hard as I can to do everything in my power to heal from this injury. Dang it—I didn’t let attacks of paralysis keep me from starting to run in the first place. I’m not going to let a simple knee injury keep me off the starting line this summer!

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.

Struck by Lightening… Twice

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Falling Off

This bulletin board represents my life

Even though I love to decorate my room, when I moved into my apartment in August, I could only muster the willpower to put just a handful of small pictures on my bulletin board. During my Freshman year, I’d made my room look like “an Athenian palace,” as one friend put it—at least when I didn’t leave my trash strewn all over the floor (thanks, hoarding OCD).

My lack of decor last semester was an analog of my life. When I finally turned a corner in November, I covered most of my bulletin board with posters, postcards, pictures, and swag from my first 5k race. The better I’m doing, the more things are on the bulletin board.

A few weeks ago, pictures and papers started falling off, one-by-one. I didn’t put them back.

On some level, I knew I wasn’t feeling completely like myself, although I kept trying to pretend I was okay. But more pictures kept falling…

I began to struggle through each day more and more, feeling increasingly detached from everything around me while the ever-emptier bulletin board subconsciously reminded me I wasn’t myself. Then one night, I finally fell off a cliff.

I realized I’d come down with a virus. The virus itself was hardly noticeable, but the PANS symptoms that it caused to flare were debilitating. That night, I lost it. I was agitated for no reason. I kicked at the wall and made more papers fall off the board by accident.

While lying in bed, I thought to myself, I should go run around outside. I had no purpose or destination. I just felt strongly that I needed to do it—never mind that I was in my pajamas and it was extremely cold. But then the rational part of my mind kicked back in a little, I guess I should grab my keys. It never occurred to me how little sense it made and that if I was running around outside in my pajamas at 1:00 in the morning, campus police would probably think I was intoxicated—or take me to the psych ward.

The fatigue from the virus kept me in bed, but then the intrusive thoughts started up again and were very disturbing. I was severely depressed. Sometimes I actually believed the thoughts. Sometimes I wondered if I actually wanted them to be true. I didn’t know what thoughts were mine anymore. I didn’t realize how irrational I was thinking and behaving.

During one moment of insight, I finally reached for my phone and called my parents: “Mom, I need you to come right now. I’m losing it, and the thoughts are getting scarier and scarier.”

I ended up going back on a higher dose of Prednisone again. Amazingly, after a few days, it mostly brought me back to where I was when I was at my best in November.

This week, I’ve put everything back up on the bulletin board—and I even added some new things. I’m not depressed at all now, I’m ticking less, and I’ve had no trouble with remembering words. I feel connected to the world again.

I didn’t realize how far gone I was in that flare until I came out of it. I wasn’t too frightened at the time, but now I’m terrified that a cold made me lose my mind. What a horrible idea to live with!

I could worry about it happening again. I could back into a corner and scream, “Why me?” I could stay in my room and not come out so that I couldn’t catch another virus. Or I could just enjoy all the good days I’m having right now. I can keep living and doing the things I want to do.

I’ve decided to keep putting the pictures back even if they fall off sometimes. When they fall, they’re not gone forever—they’re only displaced. It’s hard to feel like you lose huge pieces of yourself sometimes, but I know they will always come back eventually…

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.

How Do I Stay Positive?

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

The answer? I don’t.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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?

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.

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…)

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