PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

Posts tagged ‘College’

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.

Why I’m Working through PANS

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

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

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

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

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

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

So I accepted the offer.

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

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

I Am Not an Illness

Sometimes, I don’t know who I am anymore

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

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

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

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

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

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

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

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

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

Why I’m Struggling through College… For the 8th Time

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The PANDAS Games

Does anyone ever win the PANDAS Games?

Does anyone ever win the PANDAS Games?

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

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

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

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

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

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

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

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

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

Recovery Is Possible!

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

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

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

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

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

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

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

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

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

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

Why I’m Not Living up to Your Expectations

Sometimes, you have to clear your own path

Sometimes, you have to clear your own path

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

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

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

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

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

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

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

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

Stuck in the In-Between

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

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

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

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

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

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

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

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

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

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

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.

“Just” My Parents?

Is it really good to go home for the summer?

Heading home for the summer!

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

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

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

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

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

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

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

Who Put Sludge in My Brain?

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

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

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

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

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

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

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

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

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

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

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

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

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

Flare or Fluke?

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

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

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

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

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

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

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

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

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

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

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

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

New Year News

2016: The year I'm finally well?

2016: The year I’m finally well?

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Why I Run in the Rain

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

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

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

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

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

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

So I decided to run in the rain…

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

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

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

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

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

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

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

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

Until the Victory Is Mine

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

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

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

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

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

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

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

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

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

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

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

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

ADHD: The Struggle Is Real

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

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

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

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

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

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

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

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

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

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

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

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

Why I’m Glad I Got Sick

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

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

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

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

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

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

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

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

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

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

The New Me… Maskless

Getting better is like taking off a mask...

Recovering from PANS is like taking off a mask…

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

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

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

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

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

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

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

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

“You seem a lot calmer than last semester.”

“You seem to to be concentrating well.”

“You look so healthy!”

“You look great!”

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

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

Why This Year Isn’t Last Year

Time to Pull Out the Textbooks Again...

Time to pull out the textbooks again…

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

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

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

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

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

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

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

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

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

Am I Twenty or Twelve?

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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…

Alone

Alone

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

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

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

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

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

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

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

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

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

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

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

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

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

My First “Normal” Summer?

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This week, I have wonderful news… Instead of moving home for the summer like I’d planned, I’ve decided to remain at school to take classes and work.

While this may sound like a “normal” summer for an almost-20-year-old, for me, it’s a huge victory. Not too long ago, I hated everything and wanted nothing more than to go home and spend my summer lying on the couch or in bed (just like last summer). But now, I want to keep pursuing my dreams in this city—dreams that I’d pushed to the back burner for far too long because of my illness.

When I called my parents yesterday to inform them of my decision, I didn’t know how they’d react. I thought they might try to make me change my mind, but instead, they said my plans were, “the best news ever.”

“I feel great,” I said on the phone. “Really great.”

“How’s your OCD?” my mom asked.

And there was a long pause…

Recently, I’ve been having a hard time with sensory sensitivities.  If I feel certain sensations or see certain textures or hear certain sounds, I’m thrown into a flurry of compulsions and tics to try to get rid of the physical discomfort.

For example, I can’t stand it when my feet rub across the floor or the ground in a certain way. If it happens, I have to go “undo” it by stepping on the same spot again or rubbing something else in a “good” way.  Just thinking about the noise and the sensation makes me very anxious. When it gets really severe, sometimes I won’t move until I can convince myself that it wouldn’t be “that bad” if I accidentally made the sound happen.

“Well, mom,” I said, “It’s gotten to the point where I’ve considered putting rubber mats on top of all the carpet in the apartment…” (For some reason, sliding on rubber or plastic doesn’t bother me nearly as much.)

“That’s not good.”

“Yeah, I know. And then I had a couple of days when I could hardly eat… And I’m sleeping terribly and can’t stay awake without Provigil… And then there’s the ADD…”

“Well, what’s so great about how you’re feeling now?”

It’s very hard for me to identify what it is, much more to explain it, but I feel a night-and-day improvement compared to where I was before my most recent IVIG. I’ve previously written about how my perception of the world and my awareness has improved, but to put it another way:

I may still have symptoms, but my symptoms don’t have me.

I’m not completely consumed by this disease anymore. I have a life that isn’t just about fighting PANDAS. I’m doing everything I want to be doing—even if it takes me longer than most people, and even if it takes more effort. Yes, having PANS causes significant difficulties, but I’ve learned how to work around them somewhat, and I’ve come to accept my life for what it is right now.

Certainly, I’d prefer to not have any of the challenges that I have. I want this IVIG to take care of everything that’s left. I don’t want to be tossed into the throws of partial insanity when I finish my Prednisone taper next month (I’m down to 8mg now!). I want to stay at school over the summer like I’ve planned—and not in isolation at home after a plasmapheresis hospital stay.

But I suppose if push comes to shove, I still want to be cured more than anything else, so I’d go home for treatment this summer if I needed it…

For now, though, I’m going to keep living as if I’ll get to have a “normal” summer, because I like looking forward to something normal—even though I know there’s a possibility that I’ll have no choice but to go home…

Bring Me Back

Plane

As spring break approached, I did everything I could to avoid answering that dreaded question: “What are you doing over break?”

“Oh, I’m just taking a short trip to the city and then going home and resting,” I told most people.

But the whole truth is that I’ll be sitting in my doctor’s office for two days hooked up to an IV to get a bunch of people’s antibodies poured into my body. The truth is that I desperately need this treatment so that my own bad antibodies will stop attacking my brain. The truth is that I’m going for my second round of IVIG to hopefully wipe out this disease once and for all.

As I’ve listened to classmates discussing their cruises, beach outings, road trips, or even their plans to remain at school, I’ve found myself feeling resentful.  It isn’t the fact that I don’t get to spend the week on a beach with my friends—it’s the fact that I don’t have the freedom to choose not to do so.  My symptoms are severe enough that the only reasonable spring break for me is to get more treatment. What can I do? I have to go back for IVIG.

IVIG round 2––I'm partying so hard over spring break!

This is how I’m partying over spring break…

With so many emotions—hope, fear, anxiety, and more—I stepped into a cab after my last Friday class and headed to the airport to go home.  But it wasn’t that easy: my mom had to call the cab for me, because my social anxiety has been so bad lately.

Getting through the airport to go home was even more difficult because of my brain fog. These days, I walk around with a constant sense that I’ve forgotten to do something or that I’ve lost something. And sometimes, I get very confused by everyday things. Getting through an airport in that state was truly an accomplishment.

As I finally sat at my gate, amazed at how “off” and not completely present I was, I knew in my heart of hearts that, in spite of how much I wished to have a “normal” college spring break, it was time to go home.

Yes, I’m ready to be brought back. 

Oh, IVIG, please bring me home. Bring me back to who I am. Bring me back to the days when OCD didn’t force me to make everything “just right.” Bring me back to the days when I wasn’t afraid of everyone. Bring me back to the days when I wasn’t in constant pain. Bring back my memory. Bring back my concentration. Bring back my mental clarity. Bring back my mind. Bring back my health. Most of all, bring back my hope.

One way or another, I’m going home. It may not be this flight, this trip, and this treatment that gets me there, but somehow, I will find my way. I’m going to go home. Something, someday, will bring me back.

Losing My Mind… Halfway

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

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

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

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

“What pump are you on?”

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

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

“I don’t know what pump you’re on.”

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

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

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

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

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

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

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

Slamming the Door on OCD

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

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

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

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

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

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

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

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

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

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

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

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.

What I Learned from Losing My Wallet

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

3 Months Post-IVIG: A Wild Ride

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

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

I've ditched the cane!

I’ve ditched the cane!

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

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

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

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

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

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

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

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

What I Have to Believe…

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

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

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

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

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

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

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

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

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

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

Still Falling… And Getting Back Up

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

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

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

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

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

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

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

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

Another Flare…

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

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

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

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

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

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

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

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

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

PANDAS Goes to College

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

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

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

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

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

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

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

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

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

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