Finally, An Answer: My POTS Diagnosis Story, Part Seven

Hey there, friend! This is the last post in this series telling the story of how I found my POTS diagnosis. If you missed the beginning, 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

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

"That can't be right. Check it again."

The girl next to me in my CNA class once again inflated the blood pressure cuff on my arm. The air hissed out slowly as she released the valve. She wrote the numbers down, but her face was puzzled. 100 mmHg systolic, 40 mmHg diastolic. The numbers didn't make sense. They didn't fit within the range of "normal".

She called our professor over to explain what she was doing wrong. And I, the ever obedient guinea pig, sat still in my chair as another cold stethoscope was placed inside my elbow and my arm was once again squished tight by the blood pressure cuff.

"No, you did everything right," my professor told my classmate. "Her blood pressure is just wonky. She probably skipped breakfast this morning, that's all."

Class then proceeded as normal. I probably managed to nod my head appropriately a few times and fake a fair impression of paying attention, but I wasn't listening one bit.

I was busy thinking. Inside my head, a long-buried worry about my health had started to once more rear its ugly little head. 'My blood pressure is wonky.' What does that mean? I know I didn't skip breakfast this morning. Should I go to the doctor? I don't want to go to the doctor. Doctors never help anything. They definitely didn't help me when I was sick before. It's probably nothing. I'm probably fine. 

As soon as I got home from class, I dug through my box of spare toiletries. I found my home blood pressure cuff, pulled it out, and took a reading. Waited anxiously while the cuff inflated and then deflated.

The numbers on the screen stared back at me: 78 mmHg systolic, 49 mmHg diastolic. My blood pressure was even more abnormal than before. It was low, too low. Too low to be healthy.

I changed the batteries in the cuff. They were old... maybe they were causing it to malfunction? Nope. New batteries gave me the same result.

Something's wrong. Something's very, very wrong with me. I pulled out my phone and started searching the internet for an explanation. Of course, the internet didn't help my anxiety at all. (Why do I ever think searching the web for health advice is a good idea? I usually end up either with cancer or dead by the end of my search results.)

At least the things I read online made sense. All summer I had been struggling to focus, struggling to have any amount of energy. Seeing stars in my vision or even blacking out for a few seconds had become part of my normal daily routine. And anytime I tried to help my mom on the farm, my head and chest would always start pounding so hard right away that I always had to quit and return to my bed.

But I had grown so used to doctors dismissing me that I had dismissed my own symptoms. Why worry about my body when my symptoms are "all in my head" anyway, right?

That night during dinner, I mentioned my blood pressure readings to my parents. My mom instantly decided that my blood pressure cuff must be broken. There was no way my blood pressure could be that low.

So my dad tried on my blood pressure cuff and became concerned when his blood pressure reading was normal.

The blood pressure cuff wasn't broken. I was the one who was broken.

My dad set up an appointment for me at our local clinic. I hadn't been to the doctor in months, not since I had received my diagnosis of Functional Neurological Disorder. My doctors had essentially written me off as crazy. So I had given up on medical doctors; my counselor and my psychiatrist had been my only source of professional help for at least a year.

I remember an anxious, sick feeling in my stomach as I waited for my appointment at the clinic. I was afraid that whatever new doctor I saw would tell me I was perfectly fine, just like all the other doctors had. I didn't even want to hope for a diagnosis. If I had any hope, the reality was that I would probably just be disappointed all over again.

Standing in the shower for 20 minutes raised my pulse to 139 bpm.
Lying down a few minutes later dropped my pulse immediately by 72 bpm.
This change in pulse due to posture changes is typical in POTS patients.

In the days leading up to my appointment, I monitored my blood pressure obsessively. I was afraid my symptoms would disappear before I could show them to the doctor. But my readings were consistently low, especially the diastolic number.

Then I began to realize that something was wrong with my pulse, too. My heart rate was totally fine as long as I was lying or sitting down. But as soon as I stood up, my pulse would always skyrocket. It was weird. I made a note to discuss my crazy heart rate with the doctor as well.

Somewhere between all my summer classes and my job in a long-term care facility, I managed to keep my appointment. I was so nervous I wanted to throw up, but I forced down my anxiety and went in to the clinic.

I was helped by a nurse practitioner instead of a doctor. In a very professional manner, the nurse practitioner at the clinic listened to my concerns and then ordered a whole bunch of tests to look for problems.

Then I waited. (Ugh, I always hate the waiting part. Don't you?)

At my follow-up appointment, the nurse practioner explained that my test results looked relatively normal. The only thing she found in my blood was a vitamin D deficiency and a slightly low iron levels. Everything else was normal. My electrocardiogram was normal. My complete blood count was "within normal range". My Lyme disease antibody test was negative. I was utterly, sickeningly normal.

Tears fell from my face as the nurse practioner went on and on, explaining that I should be thankful for my low blood pressure because many people struggle with high blood pressure.

My thoughts drowned out her voice. Why did I ever come back to a doctor? The answer will always be the same. They will never be able to help me. I'm just broken, and they can't fix me. Nobody can fix me. Nobody can see the pain I'm in, and nobody could take the pain away for me even if they cared enough to see it. 

No matter how hard I tried, I couldn't stop my tears. I was utterly defeated. I felt like my whole world was crashing down on me all over again. This whole blood pressure issue was just another symptom to add to my list of things that my doctors could not explain.

The nurse practioner eventually noticed that I was crying and asked if I was okay.

"No," I told her. "I'll never be okay." I tried to keep my composure, but I couldn't. Everything just started spilling out.

I told the nurse practioner about all the doctors before who had told me I was normal just like she did. I told her I knew it wasn't all in my head. I knew something was wrong with my body. I had felt so sick for so long, and there had to be an explanation. My 20th birthday was in three days. So why did I constantly feel like I had the body of an 80-year-old? It wasn't fair. I didn't even want to be healed anymore. I just wanted answers. I just wanted to know what was wrong with my body for once in my life.

After handing me a plethora of kleenexes (which I promptly soaked with tears and snot), the nurse practitioner asked me to explain my other symptoms. We knew my blood was fine, but did I have any other ideas about what might be wrong?

I sheepishly told the nurse practioner about my online research. By matching my symptoms to articles and stories on the web, I had formed three guesses: Lyme disease, anemia, or Postural Orthostatic Tachycardia Syndrome (POTS).

We already knew that my Lyme disease test was normal. And while I did have very slight anemia, it wasn't severe enough to cause symptoms like mine. The only guess that I had left was POTS.

So the nurse practioner referred me to a cardiologist. At the same time, she warned me that "the guys up there in Cardiology think they know everything and can be pretty harsh to patients if they think you don't belong there."

I decided to take the chance.

And you know what? My cardiologist was actually really nice. I guess that means I belonged there.

I showed him my blood pressure and pulse data that I had gathered during the last two months.

"Very interesting," he said. Then he ordered a whole bunch more tests ("To make sure I don't miss a hole in your heart or something"), but he asked me if I had ever heard of POTS.

I waited months for my follow-up appointment (he must be a very busy doctor). Then my cardiologist walked in the exam room door and looked at my records. He told me that the echocardiogram, the stress test, the holter monitor readings, all the tests, were normal. My heart was fine.

My cardiologist stopped talking and looked up from my records. I think he expected me to be happy. (After all, I had just been told the good news that I didn't have a hole in my heart.)

I looked back at him stunned.

"So... there's nothing wrong with me? What do I do now?" I asked him.

"Oh, well, there's no question that you have POTS," he said. "All the tests you did were simply necessary to rule out any other conditions. Have you ever heard of POTS?"

I exhaled in relief as my cardiologist once again launched into an explanation of POTS. He obviously didn't remember that we'd already had this conversation at my last appointment (like I said, he must be a very busy doctor), but that was okay. I let the doctor talk as I smiled and my soul heaved a sigh of relief.

I finally had my answer. I finally knew what was wrong with me.

I finally knew that I had Postural Orthostatic Tachycardia Syndrome.
__________________________

Stay strong this week. I know life is crazy right now, but finish this semester strong. You got this.

I'm praying for you.

Until next week (or whenever I recover from all my final exams),

Bonjé Gioja
__________________________

P.S. What's the worst part about waiting for your doctor appointments? Have you ever broken down crying in front of a doctor? How did you finally find your diagnosis? I'd love to hear your story in the comments below!

P.P.S. Hey, wanna subscribe to my blog posts? It would make my day! :)

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My Symptoms are More than Just Mental Illness: My POTS Diagnosis Story, Part Six

Hi there! If you missed the earlier snippets of my story, no worries! You can 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

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

I was faking.
I had to be.
It was the only way my symptoms made any sort of sense.

Some doctors said it in a kinder way than others, but each doctor eventually reached the same soul-crushing conclusion.

I became an expert at reading the facial expressions of each new doctor. Initially, each new appointment would start out well with a professional sit-down-and-tell-me-what's-ailing-you face. Then I would get the we'll-do-a-round-of-tests-and-get-to-the-bottom-of-this look. Perhaps at some point I'd even be granted a wow-you-must-be-really-strong-to-deal-with-this look. But without fail, by the end of our time together, each doctor's face would eventually reflect the only-a-psychiatrist-can-help-this-girl expression.

My case wasn't helped by the fact that my symptoms noticeably worsened after a spring break's worth of family drama (I've since learned that these flare-ups are totally normal in POTS patients under stress, but at the time we had no idea what was going on). So we eventually succumbed to the pressure from my doctors, and my parents paid for me to start seeing a Christian counselor. We honestly had no idea if counseling was the answer to my problems, but by that point we were running out of other viable solutions.

My counselor did her job well. She listened to my long story about doctors and health issues and fear of never finding answers. Then at some point, our conversation transitioned to discussing emotional trauma from my childhood. The pain I held from years past was still as raw and real to me as the day it happened, and I wasn't able to speak of the past without bursting into tears. That day I was able to tell my counselor things which I had never dared breathe to another soul. Thankfully, my parents (to whom mental illness was a slightly foreign concept) recognized just how much I needed counseling and paid for my sessions to continue.

After a few meetings, my counselor voiced her suspicion that I was suffering from Conversion Disorder (also known as Functional Neurological Disorder). Yet she also encouraged my parents and me to pursue further medical testing. I appreciated her caution. Unlike my doctors, my counselor didn't want to just assume that the cause of my symptoms was solely psychological.

However, while we continued to search for medical answers, my counselor was more than happy to help me sift through the mountains of emotional baggage which I was hiding from the world. My meetings with this counselor were intense. Although she was unable to heal my body, she helped heal my wounded soul more than I ever thought possible. And she didn't just encourage me to talk about wounds of my past; my current struggles were relevant too. My counselor became one of my biggest cheerleaders as I learned to face life with a chronic illness.

And by then I definitely needed every cheerleader I could get, because my life had transformed into something I no longer recognized. The social butterfly with friends at her side and dreams in her eyes had disappeared. Instead, I spent most of my time curled up in my bed desperately trying to recover from the fatigue of spending two or three hours sitting in class. I no longer dreamt of the future. Just surviving one or two days at a time was a battle which seemed impossible to win.

It took every ounce of my strength and willpower to keep fighting that battle. I remember especially hating anything relating to the medical world. I didn't want take any more pills. I didn't want to go to any more appointments, didn't want to see any more doctors, didn't want to keep searching for a diagnosis. I just wanted to bury my head under my blankets and never ever come out again.

While I was busy hiding from the world, my dad kept making appointments for me to see more doctors and have more tests done. Since we hadn't been able to find answers in my hometown, my dad started researching other doctors in other cities who could possibly help me. He made appointments with more doctors than I honestly care to remember. I was annoyed by his persistence, but at the same time it comforted me to know that he was fighting for me even after I had given up.

This was the night before my Mayo Clinic appointments.
I laid on the couch, attempted a smile, and wondered...
Will tomorrow finally be the day I find my diagnosis?

One batch of appointments my dad made for me was at Mayo Clinic in Minnesota. So after months of waiting for appointment day to arrive, my dad and I took a seven-hour road trip to Mayo Clinic. (He drove while I alternated between sleeping and staring out the window; I was no longer allowed to drive because of my seizures.)

By this time I had grown used to the disappointment of not receiving answers from any of my doctors. But all the way to Mayo Clinic my mind kept churning over this thought that maybe... just maybe, the doctors here at this prestigious hospital might be smart enough to find what is wrong inside my body. 

One of my scheduled medical tests at Mayo Clinic was a sleep-deprived EEG. To take this test, I first had to achieve a state of sleep deprivation. So after a long night of bingeing Netflix from the couch in our Airbnb, I dragged my exhausted self into the car shortly after the sun came up the next morning. I remember feeling completely icky and nauseous and shaky all over from lack of sleep. Once we arrived, my dad helped me navigate the many beautiful halls and wings of Mayo Clinic. I finally found the correct waiting area, checked in, and sat down to wait. (And I was so tired by then that I definitely snoozed a bit while I waited.)

I was eventually taken to an EEG testing room, where I sat while the nurse scrubbed little spots on my head until my toes curled. Then the nurse glued the EEG electrodes to my scalp, helped me into bed, and turned out the lights. Alone at last, I curled up under the thin hospital blanket and went to sleep.

When my test was over, I remember the last thing I wanted to do in the entire world was wake up. The lights were too bright. Why can't doctors ever just let you rest for a bit?

Anyway, I kept my eyes open long enough to hear that the results of my test were completely normal. And unless I wanted to admit myself for a more extensive, week-long monitoring, this doctor was done helping me.

The sleep-deprived, zombie version of me then struggled through a few more appointments, but every single test result showed the same thing: my body was 100% disgustingly healthy. Nothing wrong with me. That is, except my mind. My doctors all agreed that my mind needed help.

Because they had no other answer for me, my doctors referred me to Mayo Clinic's center for behavioral health. Amazingly, my dad was able to make a next-day appointment for me with one of Mayo Clinic's doctors who specialized in psychiatric spells. I didn't want to go, but Dad said I should at least go to the appointment and hear the psychiatrist's advice. We didn't think anything would come of it, but we just had to wait and see.

Then my dad drove me back to our Airbnb, where I locked myself in the bedroom and cried my eyes out. I was too upset to sleep. Although my body was still sleep-deprived, I wasn't tired. I was angry. Angry at the doctors, angry at my body, angry at myself, angry at God. My mind raged with the frustration of yet another dead end. Why had I ever let myself get my hopes up? What made me think these doctors would be any different from all my other doctors? Why couldn't I find any answers? Why, why, why? I cried and prayed and raged for what seemed like hours in that tiny little Airbnb bedroom.

Eventually I fell asleep. And the next day, I kept my appointment. I was given a full mental health evaluation at the clinic. My psychiatrist, who was extremely kind, diagnosed me with four things: Major Depressive Disorder, Persistent Depressive Disorder, Generalized Anxiety Disorder, and Panic Disorder.

And based on my evaluation and on the fact that we had no other medical explanation for my seizures, my psychiatrist also diagnosed me with a fifth item: Functional Neurological Disorder (FND; also known as Conversion Disorder) with Psychogenic Non-Epileptic Seizures. Basically, my psychiatrist told me that the trauma I had experienced as a young girl was now manifesting itself as physical symptoms within my body. And the only way to cure those symptoms was through counseling by a licensed therapist.

[Please note: FND is actually a real illness with real physical symptoms, and I am not trying to belittle anyone's struggle with FND. I was given very, very little education by my doctors about this illness, but have done enough research to know that this illness is not at all just "in a patient's head". My more recent POTS diagnosis, however, rules out my previous diagnosis of FND.]
___________________________

I do not deny that I struggle with my mental health. The first four diagnoses from my psychiatrist were absolutely correct, and I am now on medication and in therapy which helps me manage those conditions.

But I have since learned that many of my physical symptoms (confusion, weakness, fatigue, dizziness, near-syncope, non-epileptic seizures, etc.) are not just because of mental trauma. The symptoms that I experience every day do have a true physiological explanation. I don't need a psychiatrist for my seizures; I need a cardiologist. When I feel lightheaded and confused, I don't need to practice grounding techniques; I need to lie down because gravity is literally starving my brain of blood. And when I am perfectly happy but my heart keeps racing, I don't need another anxiety medication; I need medication to raise my blood pressure.

But back then, I didn't know that I had POTS syndrome. Functional Neurological Disorder (FND) seemed to be the only explanation I would ever get. I was too tired to keep pushing for a different answer that I might never find. I was done fighting. So as much as I hated my diagnosis, I buried all my doubts and determined that I would make the most of this brand-new diagnosis.


I took all of my psychiatric medications, even the ones that made me feel worse instead of better. And every night I stayed up late researching the heck out of FND, trying to learn new ways to fix my illness. I went to all of my counseling appointments. I practiced coping methods as I trudged through the trauma of my past over and over. And I stared my demons in the face and told them to go back to the hell where they came from.

My depression and anxiety improved, but my other symptoms did not. So I came to the conclusion that I must not be trying hard enough. I was obsessed with the idea that I was the only one who could fix myself. If only I can find the right switch, the right trigger in my mind, then I will be healed. I began to blame myself for still being sick. This led to more depression, more anxiety, more confusion. Some days, I just gave up. Other days, I tried to drag myself out of bed and keep fighting. Every day, I blamed myself for the illness that none of my doctors were able to identify.
___________________________

Come back next week to hear about the day I got my CORRECT diagnosis! (At least, I'm hoping it'll be next week. I've been dealing with a bit of a flare so my writing energy has been kinda compromised lately.)

Update! Read my final post in this series here:

Finally, An Answer: My POTS Diagnosis Story, Part Seven

As you face this coming week, stay healthy and strong. And stay at home. I'm praying for you!

Bonjé Gioja

P.S. Have you ever reached the point where you were so tired of fighting that you just gave up? Do you recommend taking medications for mental illness, or do you prefer to tackle things with natural remedies? Let me know in the comments below if you have any tips for staying sane during this quarantine! :D


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Dear Doctors, Please Stop Telling Me I'm Pregnant: My POTS Diagnosis Story, Part Five

Welcome, dear friend! If you missed the earlier parts of my diagnosis 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

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

PSA: There are a lot of things that could cause a girl to skip her period.

For example, if a girl's body is suffering from a severe illness that has neither been diagnosed nor treated, her body might just decide for a while that dropping an egg sounds like too much work. Makes sense, right?

Feel free to pass that memo along to my doctors.

Every single waiting room intake paper contains the same question: "When was the date of your last period?" For at least three or four months, I had only one date to write on that wretched piece of paper. So during those months, my doctors considered that the likely cause of my so-called "mysterious" symptoms was actually pregnancy.

Although multiple doctors have played the pregnancy card (especially when my parents were with me at my appointments, thus motivating me to "misrepresent my sexual activity"), one particular instance comes to mind.

A quick bit of context for today's story: I had just returned from spring break and was ready to finish out my second semester of freshman year. But shortly after my return from break, I came down with a fever which confined me to my bed. Initially I didn't worry about the issue too much; I figured that I had probably caught some germs while traveling. But after my fever persisted for a week, my brother and my boyfriend took me to the all-too-familiar Emergency Room.

I told my E.R. doctor that I had a fever. I also told him that for the last few days, my head had constantly felt like it was going to explode from the pressure inside. Every time I tried to stand up, I lost my balance and my vision was instantly obliterated by a thick sheet of silvery stars. And my sheets were drenched with sweat multiple times each day. I could literally wring drops of sweat from my pajamas. Finally, just to add a cherry on top, gastrointestinal issues had been bothering me as well.

After describing my symptoms, I explained to my doctor that I had a history of undiagnosed illness and non-epileptic seizures. I voiced my concern that this fever could somehow be related, and I asked my doctor to run some tests to identify its cause.

I didn't have a stuffy nose or sore throat. But just to be safe (it was flu season after all) my doctor tested me for various bacteria and viruses. Everything came back clear, so then my doctor jumped to the next likely conclusion: He insisted that I must be pregnant. (Along with skipped periods, a fever can actually be an early sign of pregnancy.)

But I knew that there was no possible way I could be pregnant. Sure, I'm a young and pretty college-age girl with a boyfriend, but that doesn't mean squat. I've never had sex and I don't intend to have sex until I am married.

I tried to explain this to my doctor. I tried to explain that I'm a straight-A student at a conservative Christian college. And I don't just follow my college's rules because they're there; I know that my actions are answerable to God. I promised my doctor that nowhere during my spare time was I getting hanky-panky with any sperm factories. (Spare time? What spare time? I had a full course load and I worked hard for those straight A's! Spare time did not exist in my life.)

All I could think was: This doctor is so stupid. If I'm pregnant, then God must have chosen me to be the second virgin Mary. I wish my doctors would stop making false assumptions about me and start actually listening to me instead. 

But my words meant nothing to my doctor. He assumed I was lying. So I did the only thing I could do. I peed in a cup. (Hmm... I wonder how much my parents had to pay for the test just to prove this doctor wrong??)

Then we waited for the test result. And... surprise! No baby on the way!
Phew, I was really (NOT) worried there for a second. Now will this doctor listen to me??

At this point my doctor didn't know what to do. He administered an IV for hydration, but was unable to help me further.

I was dismissed from the E.R. that night with the diagnosis of...
wait for it...
a fever. 
_________________________

To this day, I don't know exactly what caused that fever.

My working theory at the time was that the twenty-something supplement pills per day which a naturopathic doctor had prescribed to cure me were actually making me sicker. I had already experienced an allergy to the anti-anxiety medication given to me by an earlier E.R. doctor (yes, the doctor in part one of my story), so I thought perhaps my body didn't like these new chemicals either. So I stopped taking all of my supplement pills, and my fever finally broke a few days later.

Looking back now that I have my actual POTS diagnosis, I have another theory: It is very possible that spring break was just so stressful that it triggered an extreme flare-up in my body.

During that spring break I had opened a giant metaphorical can of worms from my past, and the mental stress triggered by that situation hit me like a train. (I don't want to hurt anyone involved, so I won't tell details.) My anxiety spiked intensely and I battled nightmares for months after that spring break.

Along with being mentally drained, I had also drained myself physically because I had spent the majority of my time during spring break painting rooms in my parents' new house addition. So all of this physical and emotional stress intertwined to create a very exhausted Bonjé. And I've since learned that this POTS illness in my body kinda likes to jump in and take over anytime I let myself wear too thin. Each flare-up is different, and these days I've learned to just do nothing but rest until the flare runs its course.

I will never know for certain why my body decided to ignite a week-long fever after that spring break. What I do know, though, is that my dorm room positively reeked of sweat after that fever finally broke.

I also know that Christ will always be my strength, even when I am too weak to stand up. I invariably find myself turning to one particular Bible passage during a flare-up. If you find yourself wearing thin today, I encourage you to find comfort in these words from the apostle Paul:

"I was given a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But He said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." (2 Corinthians 12:7-10 NIV)

Your weakness,whether physical or otherwise, does not define you. If you have the grace and strength of Christ in your life, then His vast love for you is the only thing that defines you.
_________________________

Read the next parts of my diagnosis story here:
My Symptoms are More than Just Mental Illness: My POTS Diagnosis Story, Part Six
Finally, An Answer: My POTS Diagnosis Story, Part Seven

Stay strong this week as you rest in the power of Christ. I'm praying for you.

Bonjé Gioja

P.S. Have you ever had a doctor accuse you of lying? What do you think caused my fever? And when you face struggles of your own, where do you seek encouragement? I'd love to hear your thoughts below! :)

P.P.S. You can sign up to follow my blog in the sidebar to the right, or right here! :)

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My Illness Forced Me to Accept Help: My POTS Diagnosis Story, Part Four

Did you miss the beginning of my diagnosis story? No worries! 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

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

After receiving no answers from my doctors, I grew tired of feeling sick and useless at my parents' farm. I longed to get out of the house and return to school. I missed my brother (who was also a student at my school). I missed my friends and my boyfriend terribly. And I still stubbornly refused to abandon hope of passing my first semester of college classes. So after being absent from school for more than a month, I finally returned in time for the last two weeks of the semester.

I honestly had no game plan for managing my health at school. My seizures still occurred multiple times each day. But at least the feeling of conscious paralysis had become a bit less frightening to me. Somehow during my time at home, I had learned to relax and just wait out each seizure instead of panicking. Avoiding panic during a seizure also seemed to reduce the chance of triggering a subsequent chain of seizures which would last for hours. This slight improvement wasn't much to go on, but it did give me hope that I could somehow learn to survive with my seizures at school.

My boyfriend Josh and I had stayed in touch during my absence. Ironically, my illness actually strengthened our relationship instead of destroying it. In the face of crisis, our brand-new flirty romance had transformed overnight into an iron-clad confidence. So when my parents dropped me off back at school, I made them do the whole awkward say-hi-to-the-new-boyfriend thing. My parents were not enthused about my choice to continue dating while dealing with my sickness. But they remained civil and kind, and I finally introduced Josh to the people who had raised me.

After my parents left, fatigue quickly hit and I retired to my dorm room. After I spent some time curled up in my bed, a few girls whom I had grown to love dearly came to hug me and to say hello. I updated them on all my crazy medical adventures, and then I shared my frustration at not finding any answers. I felt a huge relief to finally be able to talk through my struggles with my peers. (Don't get me wrong... my parents are awesome. But they also aren't exactly the most emotional human beings in the world.) My friends' overwhelming love and support blessed me so much. Since my health was still so uncertain and they could tell I was struggling emotionally, my friends arranged to take turns sleeping in my room every night. I didn't want to accept their help, but they insisted. And I found that it actually was a huge comfort to have someone else in my room with me during those sleepless nights of uncertainty.

Within the next day or two, I quickly realized that I could not handle eating in the school dining hall. The noise of all the students and professors chattering at their tables invariably sent me spiraling into a chain of seizures. So instead, my sweet friends worked out a system to deliver meals to my room. My boyfriend packed my meals each day, wrote a cute note inside the Styrofoam box, and then passed it to a girl who could carry it to my room (boys weren't allowed near the girls' dorms). If I was sleeping, the girl slipped into my room, placed the food in my fridge, and quietly slipped out again. And if I was awake, the girl would usually stay just long enough to give me a hug and whisper a prayer before heading out to catch her next class.

I ventured out of my room only to attend class and chapel. I was too weak and shaky to carry my own backpack to class, so my boyfriend shouldered both his bag and mine. And although I previously had been a front-row-only kind of student, I now sat in the back so that my seizures wouldn't distract my classmates. One of my girl friends always sat next to me so that I could lean my head on her shoulder during any seizures that came (my boyfriend sat on my other side, but leaning on his shoulder constituted against-the-rules PDA). And I always crawled straight back into bed to rest between classes and then again after my classes were done for the day.

Fatigue became my worst enemy during that time. I survived only by taking at least four or five naps every day. And even when I was awake, I limited my movements so I could conserve every possible ounce of energy. Every waking moment, I struggled to stay present in my surroundings and to ignore my body screaming at me to crawl back into bed.

I found that I was able to do homework in the evenings as long as I stayed in my bed instead of sitting at my desk. However, I quickly grew frustrated because I had fallen so far behind in my classes. But one of my friends was a freshman who shared almost all of my classes, so she quickly became my study buddy. Day after day, she knocked on my door and then we laughed and cried and munched on snacks as we dealt with the homework monster. Having another person to study with gave me the strength I needed in order to fight my fatigue and to stay awake long enough to make a bit of progress in my classes each day.

There still remained more homework than I could finish before the end of the semester. So it was a huge relief when the academic dean called me into her office and offered me an "incomplete" grade in all of my classes. This meant that I could finish all my missed homework and exams over Christmas break. The dean also dismissed all of my absences from my time at home so that my grades would not be penalized. I will forever be thankful for the grace and kindness that the dean showed me that day. Without her help, I probably would have failed most of my classes.

I still had to visit each of my professors' offices to obtain their signatures on my incomplete forms. Since I had a full load of classes, I had seven professors. I hated the thought of explaining my utter failure and asking for grace seven different times. But I spread my meetings out over a few days, and eventually spoke with each professor. The dean had contacted them first, which helped tremendously. All my professors were kind to me and gave me the extensions that I needed.

But one professor didn't just want to hear about my homework. He assured me that of course he would help me get a good grade in his class. But then he asked, "How are you doing? What you're dealing with sounds really hard. Can I pray for you?" This professor's kindness touched me so much that I broke down crying right there in his office. He then listened patiently for the next thirty minutes or so as I vented about the devastating effects of my illness and how much I hated the uncertainty of not having answers. Before I left my professor's office, he prayed for me. I will never forget the kindness that my professor showed me that day. I honestly don't know if he remembers our meeting or not, but his encouragement that day made a huge difference in my life.

Other classmates encouraged me in little ways as well. My favorite was when a sweet group of girls burst into my room one day with a get-well-soon card, a huge bag of Reese's peanut butter cups, and a cuddly stuffed cow. I quickly devoured the candy, but I still have that big fat stuffed cow sitting on my bed next to me even as I write this blog post.

__________________________

This blog post has held mixed feelings for me. I'm honestly quite stressed this week because midterm exams are imminent, and so I did consider ignoring my blog for a week. But I am so glad that I took the time to write this blog post today (okay, let's be real; it actually took a few days), because these memories of kindness have blessed me all over again. I have absolutely loved revisiting these special moments in my life when people showed kindness to me even though I felt utterly broken and worthless. I have always been and always will be a feisty girl with an independent spirit who absolutely hates accepting help. But two years ago, when my life was falling apart and I had no other choice, I was blessed beyond belief by the help that I received. I honestly wouldn't have been able to survive that portion of my life without the patient love and support of my friends.

Today, if you are reading my story, I have a challenge for you: Don't stay silent. People are hurting all around you. I beg you, take the time to find these people and encourage them this week. Some people struggle with physical issues like I do, while others are battling a whole different brand of demons. But maybe, just maybe, your encouragement could help ease their struggle a little bit. Just say hi and tell them you care. (Too shy? Write them an anonymous letter!) If you can, ask them what they need and then offer your help. It might be as simple as giving them a hug. Or, it might be as big as picking up groceries for them and then babysitting their kids for the day. Maybe you could even buy them a big fat stuffed cow. Whatever they need, do it. I promise you, one simple act of kindness can make a whole world of difference to someone whose life is falling apart at the seams.
__________________________

Continue reading my diagnosis story here:
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

Stay strong this week. Midterms will be over soon. I'm praying for you!

Bonjé Gioja

P.S. What's one of the best ways someone has ever encouraged you? Do you have any suggestions for me when I want to encourage others but also struggle with my own fatigue at the same time? I'd love to hear your thoughts in the comments below.

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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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