Leaving My Health Behind in the Dust: My POTS Diagnosis Story, Part Three

Hello, friend! Are you jumping into the middle of my story? Catch up here:

I Promise I'm Not On Drugs: My POTS Diagnosis Story, Part One

The Most Terrifying Night of My Life: My POTS Diagnosis Story, Part Two

I knew that I was sick, but I also knew that I didn't want to go home. 

College had been my sole ambition since middle school. But now, after working long and hard to taste the sweet victory of college, all of my success was suddenly threatened by this mysterious illness which had taken up residence within my body.

Going home meant giving up. It meant admitting that I was actually sick and that I had lost control over my future which I had planned out so meticulously. My dream for years was to graduate college and become an elementary school teacher. So I didn't want to go home; I wanted to stay at school and fight for my dream.

Nevertheless, my dad skipped work the next day to drive the four-and-a-half hours to my school and bring me home. 

I honestly didn't know if I would ever return. All I remember from that long car ride home were the tears that kept streaming down my face no matter how hard I tried to hide them. I stared out the window, hoping my dad couldn't see, and stared at the trees as they flew by. Each tear-blurred tree that whipped past my window was a reminder of one more thing that I was leaving behind. My mind was obsessed with the fact that my illness was tearing me away from everything I had been working towards. My school, my brother, my friends, my boyfriend, my future, my life, my happiness. I was filled with anger at my dad for not letting me stay at school. I was angry at God for giving me this sickness. But most of all, I was angry at myself for being too weak to stop this stupid illness from destroying my life. 

When I got home, I could tell that my parents had no idea how to take care of me. They were as terrified as I was. My mom gave me a tearful hug and then showed me the bed that she had made up for me on our pull-out couch. Since my parents were afraid that I would hurt myself if I had a seizure on the stairwell, I wasn't allowed to sleep in my childhood bedroom upstairs.

The next morning marked the beginning of our search in earnest for answers to my failing health.

We started by visiting my regular general doctor at her clinic. She was amazingly kind and supportive, but too inexperienced to be able to identify the cause of my symptoms.

So I was transferred from the warmhearted doctor's clinic to the local Emergency Room. This is where I learned that having a seizure at the check-in counter shortens a patient's wait time considerably. I was immediately whisked away into a room of my own, where I became a patient of the most arrogant doctor I have ever met. He waltzed into my room and assured my parents that he was a seizure specialist who had seen everything and knew everything about every type of seizure.

After hearing my story, my all-knowing seizure specialist doctor said that my seizures sounded unlike anything he had ever studied. He ordered some tests but suggested that my symptoms were probably nothing to worry about. The tone of his voice implied that I was just a child making up some medical scare to earn attention from my parents.

By the time my doctor left the room, my parents were extremely frustrated. I did the tests (CT scan, EKG, etc.) and then we waited FOREVER for any of the hospital staff to visit my room again.

(Fun little side note: My parents and I waited so long in that cold little hospital room that my toes froze and we ran out of things to talk about. So I finally decided to break the silence by mentioning that I had met a cute guy at college. Sitting in a hospital bed while waiting to find out if I have a fatal brain tumor is the perfect time to bring up a brand-new boyfriend, right??)

Then my parents got the brilliant idea that they should try to induce one of my seizures so that the doctor could witness it. By this point they had noticed that my seizures often stopped while I was lying down, so they raised the head of my hospital bed. I quickly slumped over into a seizure, and my dad ran out into the hall to alert the hospital staff. After a minute I heard my dad re-enter the room with my doctor (and a nurse or two) in tow.

The doctor scoffed at my parents when he saw me. "Oh, she's just faking. I'll take care of that. Just watch."

A few moments passed before I noticed a strange smell. Then it hit me: Stinging. Burning. My lungs were burning. I couldn't breathe. Acid swept up my nose and down my throat. I heard myself coughing, struggling to breathe.

"See, I told you."

I heard my doctor's triumphant voice ring through the room. Apparently my coughing had caused my head to move so violently that my doctor thought I was trying to get away from the sulfur capsule he held under my nose. He thought I had dropped my "pretense". But when my head collapsed on the other side of the bed and I sank into my seizure even more deeply than before, my doctor's smug demeanor quickly vanished. He mumbled a few words about referring me to a neurologist and then slunk out of my room before my seizure passed.

Soon afterwards, I was dismissed from the E.R. with still no answers and with a handful of paperwork instructing me not to partake in any potentially lethal activities such as driving a car, climbing a ladder, or taking a bath.

The next few weeks dragged by. My calendar swarmed with countless doctor appointments and medical tests. But every doctor was bewildered with my case, and every test came back labeled "within normal range".

Exhaustion became my constant companion. My never-ending medical appointments sapped every tiny ounce of strength that I had left. Every time I got home after seeing a new doctor and telling my whole story all over again, the only other thing I had energy to do was curl up in my bed, shut out the world, and cry.

It was during those days that an old demon from my past known as Depression found me once again.
Useless, I told myself.
I, Bonjé Gioja, am totally and utterly useless. 

There were a few days that I honestly tried to get out of bed, but I couldn't even sit at the dining table long enough to eat a meal without having a seizure.

And I attempted to stay caught up with my classes online, but it was no use. I couldn't focus my brain on the material even if my survival had depended on it.

Any hope I ever had of living a healthy life vanished. My dreams of studying to be a teacher were now laughable. I was failing my classes. I couldn't even walk twenty feet to the bathroom without gripping the walls for support along the way. How could I ever expect to manage my own classroom full of rambunctious children? My parents tried to convince me not to give up hope, but I did.

I knew that my illness, whatever its name, was here to stay.
__________________________________

My story still has more to come! Read the continuation here:
My Illness Forced Me to Accept Help: My POTS Diagnosis Story, Part Four
Dear Doctors, Please Stop Telling Me I'm Pregnant: My POTS Diagnosis Story, Part Five
My Symptoms are More than Just Mental Illness: My POTS Diagnosis Story, Part Six
Finally, An Answer: My POTS Diagnosis Story, Part Seven

Until next week, stay strong. Take life one crazy day at a time. I'm praying for you!

Bonjé Gioja

P.S. I'm curious...
What would you have done if you were the parents in my story? And what's the longest you've ever had to wait in a hospital? Did your toes ever freeze while you were waiting? Share your tips for mastering hospital visits. I love reading your comments! :)

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The Most Terrifying Night of My Life: My POTS Diagnosis Story, Part Two

Missed the first part of my POTS diagnosis story? Catch up here:
I Promise I'm Not On Drugs: My POTS Diagnosis Story, Part One

My seizures took over my life. 

I couldn't talk to my friends, couldn't attend class, couldn't go to the cafeteria without triggering a series of conscious-but-paralyzed seizures which took me hours to recover from. I was constantly weak and shaky and absolutely terrified of the next seizure which I knew was inevitable. I became disabled to the point that sitting up in my own bed was a bad idea. I postponed trips from my dorm room to the bathroom as long as I possibly could, afraid that I would hit the floor before reaching the end of the hallway. 

Then a day came when I felt somewhat better. The whole day had passed without any seizures. I felt as though I had been a prisoner in my own bed for ages, and I was dying to go for a short walk outside with my boyfriend Josh. So for the first time since everything started falling apart, we spent quality time together. We talked a lot and laughed a bit and I probably cried a ton. I asked Josh if he even still wanted to date me, since the version of me that he chose to date three weeks earlier had been a normal, healthy girl. He hadn't signed up to care for this new girl with a mysterious, debilitating illness. But Josh assured me that even if my doctors discovered a fatal disease within my body, he wasn't planning to walk away from me. Every word my boyfriend spoke that night gave me butterflies. Even though I dared not speak the words, I felt myself falling in love just a tiny bit. 

When we returned to campus, I was a bit fatigued. I should have returned to my room, but I missed spending time with my friends. So my boyfriend and I decided to hang out in the campus coffee shop for a short while before bed. But of course, after a few minutes I found myself sinking into a seizure. My boyfriend was not overly alarmed; we had both started to grow accustomed to my strange seizures. He discreetly touched my hand a bit to offer comfort (students of opposite sex were not allowed to hold hands on campus) and waited for me to wake up. After a few minutes, I sat up and continued joking around with my friends. But then I succumbed to another seizure, and then another, and another. I eventually lost the ability to sit up between seizures, being too quickly dragged into the next one. My boyfriend grew anxious and decided to text my brother (who was a Resident Assistant on campus) for help.

By the time my brother reached the coffee shop, my seizures had grown longer and more intense. My friends could no longer rouse me for more than a few seconds between each seizure.

I started panicking when I realized that the seizures were growing worse than ever before. Will I ever wake up again? The thought crossed my mind that I could sink into a coma that night and never be able to move or speak again. Why is this happening? What's wrong with me? Why, God, why? I kept panicking more and more until I forgot how to breathe, forgot how to think, forgot how to do anything.

At this point, my memories from that night turn into a hazy soup mixed with a few intense moments which will forever be seared into my brain. I don't remember exactly what happened, but I do remember how I felt.

Weak. I know for sure that I felt weak. And helpless. More helpless than I ever thought possible.

Paralyzed. As my brother lifted me from the couch into a wheelchair, I felt the fullness of my body's limpness. My hands were rocks weighing my arms toward the ground. My legs had been reduced to noodles filled with sand. I tried to curl up into my brother's arms as he lifted me, but the dead weight of my body simply wouldn't listen.

Hands. Hands kept me from slipping to the floor, kept my head safe.

Confusion. Where was I? I opened my eyes as the seizure passed. I was in the old freight elevator, the only way to reach my room in a wheelchair. Wow, there's a lot of people here. 

"Hi, guys." I sheepishly grinned at all the concerned faces. "Don't worry, I'm fine."

Not again. Another seizure. Why won't they stop? What's wrong with me? Am I dying? I just want this to stop. I just want to be normal.

"Bonjé, can you hear me? Can you see me? Hey, there you are! What did you do tonight? Josh is pretty cute, isn't he?" Everyone kept asking me questions, kept trying to prompt words from my lips. Kept trying to keep me responsive. "Can you relax your hand?"

My hand. Something's wrong with my hand. "I can't move my hand." I looked up at my brother with terror in my eyes. My hand was frozen; my fingers formed a grotesque claw. This is the weirdest feeling in the world. I stared at my hand. I kept telling it to move, to soften, but the message from my brain lost its path within my body.

Then I began to notice that my legs weren't listening either. My knees bobbed up and down more fervently than I had ever thought possible. I couldn't stop the shaking; all I could do was watch as my body fell apart. At least the seizures had stopped for a time. Leaving the coffee shop must have helped. I was able to smile sheepishly again at the faces around me. Able to laugh when they prodded me about my romantic walk with Josh. I was still paralyzed, but at least I could breathe normally.

My brother lifted me from the wheelchair to my bed.

Exhausted. I honestly don't know if I slipped into more seizures, or immediately slipped into blissful sleep.

When I woke, control of my body had returned. My legs were my own again. My hand held only a nagging pain which faded shortly.

Only one wound remained:

Within my mind, I held the terror of an unknown illness that was swiftly destroying my life.
__________________________

Continue reading my POTS diagnosis story here:
Leaving My Health Behind in the Dust: My POTS Diagnosis Story, Part Three
My Illness Forced Me to Accept Help: My POTS Diagnosis Story, Part Four
Dear Doctors, Please Stop Telling Me I'm Pregnant: My POTS Diagnosis Story, Part Five
My Symptoms are More than Just Mental Illness: My POTS Diagnosis Story, Part Six
Finally, An Answer: My POTS Diagnosis Story, Part Seven

Until next week: stay strong, keep warm, and appreciate the capabilities that God has given you this day.
I'm praying for you.

Bonjé Gioja

P.S. What's the most terrifying thing that ever happened to your body? Have you ever felt utterly helpless like I did? Was it hard for you to accept help from others? Leave a comment down below!

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I Promise I'm Not On Drugs: My POTS Diagnosis Story, Part One

"Honey, this is what it looks like when you do marijuana."

I stared at the nurse in disbelief. Did she really just say that?? My brother had brought me to the hospital because I desperately needed help. I couldn't stop having seizures and I was honestly terrified that I was gonna die. But instead of help, all I received that night was suspicion and a bottle of anti-anxiety pills.

It all started during my freshman year of college. I had left campus with my boyfriend (of two weeks) and some friends to spend the weekend at a friend's family farm. One night, we all gathered in the den to work on our homework assignments. I typed on my computer for a bit, but I couldn't focus enough to get much work done. So I changed tactics and curled up on the couch to read a textbook. Still, my brain was struggling to make sense of the words in front of my eyes. All I could think was, I'm so tired. My eyes closed and I figured I was falling asleep. Ugh, fine. Maybe I'll be more productive after a little nap. I laid there motionless, waiting for sleep to overtake me. But it never did. That's weird. Guess I'll sit up and try to study some more. I told my body to sit up, but nothing happened. Wow, I really am lazy today. Fine, I'll just lie here for a bit. Homework can wait. 

After a few minutes, I sat up and continued reading my book. But then the same thing happened again. And then again. And again. My brain wasn't processing the book, so gravity kept pulling me down to rest again. And each time, it held me there motionless for a few minutes before once more releasing me.

Slowly I realized, Something's wrong. This isn't normal.

Each time, I kept trying to move, but gravity sapped the strength from my muscles and left me powerless. I tried to open my eyes, but they wouldn't listen. I tried to speak, but nothing came out. My thoughts began to race. What's happening to me? Why can't I move? I'm trapped. How do I fix this? Somebody, help me! Make it stop! What's wrong with my body? 

I started freaking out. Vaguely, I realized that I was going into a panic attack. I started hyperventilating. No matter how hard I tried, I couldn't breathe. I remember hearing my boyfriend moving across the room to sit beside me. I felt him gently hold my hand to comfort me. In return, I'm pretty sure I crushed his hand in my panicked state. 

The rest of that weekend became a blur to me. I continued to have those strange conscious-but-paralyzed seizures every time I tried to stand up or sit up to do anything. That weekend, a strange new weakness took up residence in my body without my permission. I had grown up as a farm kid who reveled in the strength of throwing hay bales and dragging feisty billy goats around by the horns. My strength had been my friend for years. But now, without warning, my strength had shattered. My body that I once loved had become my enemy. I was broken. 

I was scared, but I couldn't decide if I wanted to go to the hospital or not. My parents had always taught me that hospitals were for serious things— like broken bones or an appendicitis. But what was this? Was this serious? Was it serious enough to warrant a hospital visit? Or was there some way I could fix it myself?

I decided to return to school, where my older brother was a Resident Assistant. Surely, he would know what I should do.

The minute my brother saw me go into a seizure, he knew I needed a doctor. We started by seeking help at the urgent care clinic in town. But when the clinic staff saw me lean on my brother's shoulder and go into a limp seizure, they became wide-eyed and promptly shipped us off to the Emergency Room. 

Ah, that lovely Emergency Room. This was where my nurse took one look at me and decided that I was on drugs. I was weak and shaky and altogether freaked out, but my nurse was not sympathetic. I went into another seizure before my nurse left the room. While I was busy panicking in my paralyzed state, she did something to me that hurt for days afterwards. I was unable to see it happen, but it felt like she knuckled my breastbone really hard with a big ring on her finger. This action knocked the breath out of me completely and was quite unhelpful to my condition. My nurse didn't spend much time in my room after that. 

After an eternal wait, the E.R. doctor finally deigned to visit me. My brother and I explained what had been happening to me. Then the doctor asked me, "Do you have any exams coming up soon?" 

It took me a second to understand his implication. At best, he thought I was having panic attacks due to impending exams. But the context of his question (which I haven't fully done justice to here) told me that in his eyes I was a faker who just wanted a doctor's note to postpone my exams. Clearly, this doctor thought that I was wasting his time and did not belong in his Emergency Room. He definitely didn't believe there was anything wrong with my body. After diagnosing me with anxiety and prescribing some anti-anxiety pills to "fix" me, he left. 

____________________________

To read the next parts of my diagnosis story, click here:
The Most Terrifying Night of My Life: My POTS Diagnosis Story, Part Two
Leaving My Health Behind in the Dust: My POTS Diagnosis Story, Part Three
My Illness Forced Me to Accept Help: My POTS Diagnosis Story, Part Four
Dear Doctors, Please Stop Telling Me I'm Pregnant: My POTS Diagnosis Story, Part Five
My Symptoms are More than Just Mental Illness: My POTS Diagnosis Story, Part Six
Finally, An Answer: My POTS Diagnosis Story, Part Seven

See you next week! Until then, stay strong. 

I'm praying for you. 

Bonjé Gioja

P.S. What's the weirdest thing a doctor or nurse has ever told you? How do you think I should have responded to the accusations that I faced that day? Leave your two cents in the comments below.

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Your First Impressions vs. My Reality

Hi! My name is Bonjé.

If you were to meet me in person today, you would think that I'm just a normal twenty-something college student with a strange name and pretty red hair.

If you attended school with me, you might even be tempted to think of me as that one girl in your classes who is always on top of things and always has her life together. 

But think again. Things aren't always as they seem.

You see, I have an invisible illness.

Oh, wait.
You can't see.

You can't see what's wrong with my body, but I feel it every moment of every day.

And unless you happen to be a spoonie too, my life doesn't work the same way as yours. Every decision that I make as I go about my daily life is defined by this invisible chronic illness.

My illness is a dysautonomic condition called Postural Orthostatic Tachycardia Syndrome. That mouthful of words (POTS for short) essentially means that my body is allergic to gravity; every time I stand up, bad things happen. Blood stops flowing to my brain the right way. Eventually, I can't think straight and the world starts to fade from my vision. My heart rate spikes uncontrollably as my heart puts in a valiant effort to correct the issue, but it just makes things worse. I become breathless and dizzy. My face pales into a white sheet. And I am in imminent danger of either fainting or going into a limp (but conscious) POTS seizure.

But don't worry! There's a simple solution; all I have to do is lay down on the ground, put my legs up, and wait a minute for the blood to flow back to my brain. Good as new.

Do you see a teeny tiny problem here, though? I can't exactly live my life flat on the ground. Besides, laying on the floor is sort of taboo in most places. So how do I do it? How do I get up in the morning and walk to school? How do I keep a job? How do I function, both physically and emotionally? That's what this blog is about. I want to give you a little glimpse into my dysautonomic world.

If God has blessed you with good health, my hope is that my story of POTS can help you understand the struggles that at least 500,000 people like me in the U.S. face every single day. Additionally, I hope that your walk with God can be personally encouraged by my story of faith as I seek strength through Christ when I have no strength of my own. 

If you also suffer from chronic illness, I feel for you. It's likely that your illness is even more disabling than mine. Don't give up. Read my story for encouragement, maybe even for a few helpful tips. Then read the stories of other bloggers with chronic illness, too. I promise you, you're not alone. There is a whole online community of people like us who have various types of dysautonomia and other chronic illnesses.

Now, I'm just getting started with this whole blogging thing. Hopefully you'll listen to more of my story as time goes on. But if you're just DESPERATE to know more right now, here's a quick preview:

• I was officially diagnosed with Postural Orthostatic Tachycardia Syndrome three months ago.
• Before that, I experienced mysterious and disabling symptoms for over two years.
• I sought help from at least 23 different doctors during that time, even traveled all the way to Mayo Clinic, but no one had accurate answers for me.
• I was finally diagnosed by a cardiologist right in my hometown.
• Now that I actually know what is wrong with my body, I'm on a mission to find the best way to live a purposeful (yet possible) life with POTS as I serve Christ with all my heart.

You'll have to stick around for a bit to hear the rest of my story. If you'd like to be notified when I post a new update, you can subscribe to my blog in the sidebar to the right.

In the meantime, stay strong. 

I'm praying for you.

Bonjé Gioja

P.S. Any burning questions for me? Want to help me brainstorm blog post topics? Just wanna make my day? Leave a comment down below!