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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