PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

Posts tagged ‘Autoimmune Encephalitis’

My Narcolepsy Diagnosis Almost Killed Me

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

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

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

“You have narcolepsy.”

My whole world shattered.

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

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

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

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

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

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

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

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

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

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

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

And then I woke up.

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

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

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

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

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

The Truth About My PANS Recovery

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

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

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

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

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

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

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

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

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

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

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

Life Beyond 100%

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

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

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

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

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

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

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

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

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

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

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

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

Did I Lose My Mind to a… Sink?

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

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

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

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

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

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

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

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

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

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

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

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

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

Tonsillectomy and… Hope?

So Many Popsicles

My breakfast, lunch, and dinner!

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

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

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

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

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

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

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

But last week, the hospital redeemed itself to me.

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

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

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

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

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

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

Happy Birthday, Dreaming Panda

Cake

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

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

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

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

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

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

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

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

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

Am I Nuts?

 

Nuts2-small

Recently, a new obsession has been poking my brain:

Am I nuts?

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

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

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

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

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

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

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

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

I Don’t Know Anymore

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My First “Normal” Summer?

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

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

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

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

“How’s your OCD?” my mom asked.

And there was a long pause…

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

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

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

“That’s not good.”

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

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

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

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

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

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

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

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

What’s It Like to Survive a Flare?

IMG_3864-small

This week, I finally hit the post-IVIG flare that we were all dreading.  Thanks to a six-day burst of high-dose Prednisone, I’ve come out of it now, but I hope I don’t have to go through that ever again.  Unfortunately, I probably will.

Until my most recent IVIG, my flares were getting worse and worse.  One night a few weeks ago, I found myself spacing out at the kitchen table for about two hours, unable to make myself get up, because I had too many OCD compulsions. When I realized I’d been doing nothing for two hours and thought about how hard it would be to do anything with the burden of OCD, I just lost it—I spent twenty minutes walking around my apartment screaming and hitting the walls.

On another night, I similarly started screaming, but then ran outside and sprinted for half a mile in the rain at 1:30 in the morning. Shapes were rising out of the bushes during the run—shadows were everywhere… I realized I was hallucinating.

This week’s flare wasn’t nearly as bad—my latest IVIG seems to be damping things down.  This time around, my flare consisted of depression, feeling detached from everything and being “out-of-it,” some of the worst tics and choreiform movements since the summer, bad memory problems, and crying about everything for no reason.  The flare wasn’t pleasant, but at least I wasn’t hallucinating.

At this point, I’ve become a master of knowing when I’m about to flare. It’s true that all my flares happen very suddenly, but there are a few warning signs…

The first clue for me is that I start to have a hard time making myself do anything in the hours leading up to the flare. I lose interest in things. If I’ve made plans, I cancel them if at all possible. It’s almost like my body knows it needs to conserve energy to brace for the coming battle—before I consciously know it’s coming.

The second clue is that my physical pain suddenly gets worse. As a result of another condition called Thoracic Outlet Syndrome, I’m almost always in some amount of pain, but this is different. I start to get this strange, dull ache all across the backs of my arms and sometimes in my legs, too.  Before this week’s flare, I went to bed and had that pain in my arms and thought a flare would be coming. The next morning, I had no other signs of flaring, but sure enough, that afternoon, I fell off the cliff.

Another sign of a coming flare is that my cognitive issues suddenly get worse—especially the word-finding problems.  I don’t know the names of everyday objects.  I try to articulate myself, but I say things in the wrong order and get the tenses of my verbs wrong. Sometimes I know how I want to say something, but it doesn’t come out of my mouth that way.  I find that increased word-finding difficulties might happen only a few minutes before the worst of the flare.

But what’s it like to experience a flare?  The tics and other movements are obvious. You can see the “look of terror” I get with my widened eyes. You can watch me having a panic attack. You can hear me yelling at my parents. You can notice me doing more compulsions than usual. If you could read my mind, you’d know that the looping, intrusive thoughts start happening much more often. But it’s more than all of that—flaring feels like losing yourself.  It’s like something outside of yourself takes control and snatches who you are away.

When I flare, it feels like someone is taking things out of my mind and hiding them—and refusing to tell me how to get anything back.  I look for the words to speak, but this monster has set them up in a high place I cannot reach. I try to remember what happened the week before, who that familiar face is that I’ve seen hundreds of times, or even what I was in the middle of doing, but it has all been stolen out of my mind, and I don’t know where the monster has put any of it—I just know it’s all gone.

When I flare, it feels like I’m living in another world, unable to traverse the chasm that is my mind in order to be with everyone else.  I know I can’t think clearly about anything, but I cannot specifically tell you what about me is “off.”  I may try to go about my day as usual, but the world doesn’t quite make sense, and I feel like I’m somewhere else. The scary thing is that I never know how far away I’ve been until I come back out of the flare—and then it’s like I have been away for a long time am rediscovering all the wonderful things about the world and the people around me.

Coming out of a flare is like getting the proper prescription at the eye doctor—you didn’t know what you had been missing until you saw clearly again. You knew things weren’t quite in focus, but you never could’ve imagined all the details you once missed—but now, everything seems even more beautiful since you can fully see it.

I often wonder how many more times I’ll have to go through these flares. I’m not myself at all when I flare, so I feel as though I’m living between the flares, hoping to have as full of a life as possible.  I go to college like everyone else. I have friends. I even make straight-A’s.  But I live with the constant reality that I could flare at any moment.

I try to live the life I want to live between the flares because when you never know when you’ll lose yourself next, you have to make the most of every moment and cherish each day that you get. I lose my perspective on everything when I flare, but if I can look at all I accomplish in the better times, I can maybe know on some level that I am still me—no matter how much each flare makes me feel otherwise.

Bring Me Back

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.

The Blame Game

After eight years of searching for a diagnosis and then finally discovering I had PANDAS, it wasn’t enough for my family and I to simply know what my illness was. We wanted to know what caused it and who or what could be responsible:

Why did I get sick? What could’ve been done so that this never would’ve happened?

We blamed the doctors for brushing me off for eight years. We blamed them for not being willing to consider thinking outside the box. We blamed them for giving me more and more diagnoses while never stepping back to consider a single cause for all of them—while we insisted there had to be one.

We blamed the psychologists for completely missing my severe OCD at my evaluation in 2008. We blamed them for telling my parents I simply had “social problems,” when in reality, my OCD symptoms were preventing me from expressing myself to the evaluators. We blamed them for not considering OCD avoidance behavior as an explanation when they knew my brother and much of my dad’s family had OCD.

I blamed myself for not talking to anyone about my obsessions for six years.  I blamed myself for unknowingly concealing the one condition (OCD) that eventually led to a PANDAS diagnosis.  I blamed myself for not trying harder to get better after I first got sick. I blamed myself for catching the mono that led to this terrible flare last year. I blamed myself for not believing I would get better after my first IVIG, and somehow, causing it to fail.

My parents blamed themselves for not knowing I had OCD for six years. They blamed themselves for not trying harder to find an answer. They blamed themselves for “letting” this happen. They blamed themselves for passing on the autoimmune disease genes/rheumatic fever history that may have contributed to my illness.

Yes, it’s true that some of the doctors and therapists I saw over the years made mistakes and didn’t try hard to find an answer. It’s true that we would’ve found out I’d had PANDAS sooner if I’d been able to talk about my OCD. And yes, it’s true that I’ve probably inherited my parents’ bad genes.

But in the end, no one can truly be blamed for my illness.

Why do people try to find something or someone to blame for the bad things that happen?  Why does there have to be an answer?

The moment I admit that my disease is no one’s fault is the moment I admit that I have no control over it.  It means admitting that bad things can and do happen for no apparent reason.  This idea—this realization—is terrifying.

At the same time, I find freedom and hope in it.  I’m not mad at the doctors anymore, and I’ve come to understand that my family and I have done nothing but the best that we could for all these years, given the information we had at the time.

The hardest thing has been to realize that none of this was ever my own fault. It’s taken two years for me to be able to forgive myself for concealing my OCD for over a third of my life, but I’m slowly learning to extend the same compassion I have for others to myself.  I call it the Reverse Golden Rule:

“Give yourself the same grace you give to others. Don’t be so hard on yourself.”

Yes, even after my brain has healed completely, it will take a long time for my family and I to truly release ourselves of feeling responsible, in some illogical way, for what happened.  But I’m ready to stop playing the blame game. As hard as it is, it’s time to let go and focus on the hope I have of complete recovery…

Losing My Mind… Halfway

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

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

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

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

“What pump are you on?”

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

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

“I don’t know what pump you’re on.”

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

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

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

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

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

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

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

Slamming the Door on OCD

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

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

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

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

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

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

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

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

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

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

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

The Run of My Life

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

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

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

But then I stopped getting better.

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

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

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

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

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

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

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

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

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

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

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

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…

How Do I Stay Positive?

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

The answer? I don’t.

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

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

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

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

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

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

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

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

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

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

IVIG: Four-Month Update!

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

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

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

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

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

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

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

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

 

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

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

Steroids Turned Me into a 12-Year-Old Boy

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

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

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

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

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

But there is a bright side to it all…

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

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

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

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

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…

IVIG and the Waiting Game…

IVIG: Intravenous Immunoglobulin from 1000 donor antibodies...

IVIG: Intravenous Immunoglobulin from 1000+ donors

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

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

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

A Day in the Life of Recovery

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

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

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

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

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

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

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

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