PANS + Lyme: Recovery and 8 Years of Misdiagnoses

Archive for the ‘Life with PANS/PANDAS’ Category

Why PANS Awareness Saves Lives

October 9th is International PANDAS/PANS Awareness Day!

For the last eleven years of my life, I’ve battled a debilitating yet misunderstood autoimmune disease called PANS. It’s a disorder where an infection or an environmental trigger confuses your immune system into attacking your brain. This leads to all sorts of problems like OCD, anxiety, depression, tics, involuntary movements, cognitive problems, and many more horrible things.  It affects at least 1 in 200 people, but you’ve probably never heard of it.  Many doctors haven’t, either.

(more…)

It Isn’t You: Defying the Shame of PANS

Since the first day I became ill, shame was a mainstay in my life with PANS… Shame about irrational fears that no one understood. Shame that I felt no control over my mind or body. Shame that I couldn’t do what I once could. Shame that I lashed out at my parents and said things I never wanted. Shame that I was spending more time with doctors than friends. Shame that I’d become a different person that I hated.

The shame can be as painful as the symptoms themselves.

(more…)

Daring to Dream Again

Photo cred: NEPANS.org

This week, despite recently having the best few days I’ve had in several years, my OCD came roaring back, worse than it’d been since 2014. I started ticking again, too. People would say things to me, but their words made no sense. All the symptoms that I thought were gone returned to taunt me. Just as you think you have the upper hand with this disease, it can swoop in to tear you apart all over again!

(more…)

Why I’m Glad I Had No Fun This Weekend

This Labor-Day weekend, while you were outside grilling burgers and hotdogs, and some other college students were drinking and partying, I was all alone, locked in my apartment, doing nothing but homework and chores… And I’m so thankful I was.

(more…)

I Lost My Mind… But Haven’t Lost Hope

Every time I think I can’t go on, a thread of hope keeps me alive.

It’s 6:00 on a Friday night, I’m drenched in sweat, sitting on my bed with no pants on, and mumbling nonsense. Tears are running down my face for no clear reason, and I feel outside myself, detached from reality. As my mom peeks into my room to bring medicine, I whisper that everyone hates me, warning that the Universe is out to get me. I have no idea why I’m saying or doing any of this—words are coming from my mouth and I can’t stop them. (more…)

PANS & College Part 1: Managing Academics

Is it possible to go to college if you have PANS?

In the past three years of running this blog, one of the most common questions I get asked is, How have you been able to do college when you’ve been so sick?

Truth be told, when I look back at the last four years, I’m surprised by it, too.  And not only have I made it through eight semesters, but I’ve made good grades.  This sounds like an impossible feat for someone fighting an illness that causes severe mental disorder and sometimes severely incapacitates my cognition, but over the next two posts, I’m going to show you how I did it. 

These posts might be longer than usual, so I hope you’ll stick around!  This week, I’m going to answer one part of the question…

(more…)

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.

(more…)

Minor Symptoms, Major Anxieties

I still can’t believe I went so far from home for this internship…

A few weeks ago, I took a huge leap of faith, packed up my bags, and got on a plane to the big city. As the skyline came into view, the realization of what I was doing for the next two months hit me a hundred times harder than the impact of touching down on the runway. I was about to start a prestigious internship, living in a part of the country where I’d never been and working with people whom I’d never met. What had I gotten myself into?

(more…)

3 Years Later… The Beginning of the End?

Celebrating 3 years of blogging and the beginning of the end of my battle?

Three years ago today, I published my first post on this blog.

At the time, I was in a downwards spiral, falling apart and losing my mind. My doctors were baffled and running out of treatment options, and I was threatening to take my life. But then, my family figured out I had PANDAS/PANS. Thus began a three-year fight to regain everything my illness had so suddenly stolen from me.

(more…)

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: (more…)

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?

(more…)

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!

(more…)

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.

(more…)

The True Meaning of “Tired”

tired-panda-small

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

“I’m tired.”

(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.

(more…)

The Puppy Is Alive!

Puppy

With another semester of college done, I can truly say I thrived under exceedingly difficult circumstances. Several months ago, I vowed to stop trying to live up to the expectations people had for me as a top student in my program, but instead, I ended up exceeding them with yet more awards and accolades—I got all A’s, again. Frankly, I’m not sure how I do it…

But unfortunately, instead of coming home and taking a victory lap, I staggered across the finish line of the semester and face-planted with a flare. (more…)

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.

(more…)

How PANS Really Feels

PANS is an explosion inside my brain

PANS is an explosion inside my brain

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

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

(more…)

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.

(more…)

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.

(more…)

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.

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.

(more…)

Goodbye, Anorexia?

Did I really eat a restaurant without having a panic attack?

Did I really eat a restaurant without having a panic attack?

This week, I reached a turning point in recovering from my eating disorder.

Up until now, although I’ve known how destructive my restricting has been to my body and though part of me wanted to stop, anorexia had so much control over me that I wasn’t completely willing to give it up. I said a few weeks ago that I was going to start treatment for it, but honestly, I was so depressed the day of the appointment that I couldn’t get out of bed and just cancelled it.

(more…)

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.

(more…)

POTS & PANS: A Recipe for Disaster?

My body is cooking up trouble with POTS and PANS

My body is cooking up trouble with POTS and PANS

“You’re going to hate me when I tell you this,” my cardiologist said this week.

I braced myself to be told my heart was damaged from Rheumatic Fever—or to be told my symptoms were all in my head, as so many doctors had said over the years…

(more…)

A Ghost in My Own Life

Ghost

With this latest relapse, I’ve been living as a ghost in my own life.

In a single day, I went from eagerly and excitedly whittling away at homework for my summer classes, to crying at the thought of writing a single paragraph of a paper. I went from enjoying meals and coffees with my friends, to being terrified of any group of people and not eating lunch at all. I went from being praised at school for contributions I made in my department, to wanting absolutely nothing to do with my chosen field.

(more…)

Why I Won’t Eat

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

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

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

(more…)

The Terrible 2’s?

Cake

Happy 2nd birthday to me!

This week, I celebrate my two-year blogiversary.

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

(more…)

“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.

(more…)

One Wrong Step and…

With PANS, you never know what step might pull you into the ground...

With PANS, you never know what step might pull you into the ground…

I know I said I’d start a series on the different treatments I’ve tried, but I’m pausing to tell you why I haven’t been able to post in several weeks…

I caught some terrible virus and have been having symptoms again.  As a result, I got behind in school, so I’ve had to use all my time to get on top of things again.

(more…)

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.

(more…)

PANS: Certainty of Uncertainty

To me, one of the most difficult parts of recovering from PANS is how, just when you think you’re done having symptoms, your life can change again in a day. Sometimes, I feel like with PANS, the only certainty you have is the uncertainty of the course of the illness.

(more…)

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.

(more…)

PANS and Romance: It’s Complicated

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

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

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

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

The answer is… It’s complicated.

(more…)

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.

(more…)

Surviving Holidays with PANS

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

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

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

(more…)

Why I’m Thankful

It was a paleo Thanksgiving at my house this year...

It was a paleo Thanksgiving at my house this year…

With Thanksgiving this week, as I returned home and sat around the table with my family, despite flaring recently, I couldn’t help but be thankful for the progress I’ve made over the last year-and-a-half that allowed me to be at that table—and for the family surrounding me, who helped me get there.

As awful as the latest flare was, now that I’ve switched my antibiotic to Azithromycin and am doing better, I’m all the more grateful for everything I have. It may sound like a cliché, but it’s true that there’s nothing like losing something to make you understand its value…

(more…)

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.

(more…)

PANDAS, Described in 1 Word

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

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

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

Terror.

(more…)

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?

(more…)

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.

(more…)

Quietly Out of Control

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

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

(more…)

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.

(more…)

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.

(more…)

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?

(more…)

Am I Twenty or Twelve?

P1030195-small

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

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

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

(more…)

I Didn’t Fall Off The Cliff!

Flaring feels like falling off a cliff.

I thought for sure that I would end up here…

“Let’s climb up over here,” I told my hiking partner, my feet digging into the mud of the riverbank. “This looks like the easiest—aah!” I fell through a heap of brush and sticks that I’d mistakenly trusted for my next step. I caught myself between a log and the dirt, banging up my knee and back on the way down and scraping my arm on the twigs.

“Are you okay?” my friend yelled from the bottom.

(more…)

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.

(more…)

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.

(more…)

Another Flare, Another Decision

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…

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.

A few days later, I lost it.

(more…)

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.

(more…)

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!” (more…)

My Last Piece of Freedom

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

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

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

(more…)

My First “Normal” Summer?

IMG_1872-small

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.

(more…)

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.

(more…)

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. (more…)

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.

(more…)

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.

(more…)

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.

(more…)

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.

(more…)

Why Kids with PANDAS Are Brave

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

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

(more…)

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.

(more…)

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?

(more…)

My 6-Mile Run… To the Pharmacy

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

Just a few of my daily meds

Just a few of my daily meds

(more…)

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!

(more…)

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.

(more…)

What I Wish I’d Told My Parents

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

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

(more…)

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!

(more…)

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. (more…)

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

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

For six years, I concealed from my parents and psychologists the torturous obsessions that ran through my mind because I was so afraid of and ashamed of them. (more…)

Signs of Hope

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

Since those wonderful two days last week, I have had some mentally rough days, although the chorea and tics continue to be quite mild. Could the IVIG actually be starting to work? (more…)

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…

(more…)

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.

(more…)

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?

(more…)

Battle Scars

One day of meds/supplements...

One day of meds/supplements…

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

(more…)

%d bloggers like this: