My Life "Plans" Have Been Reduced to, Basically, Just a Blob: A Spoonie's Thoughts from May

It's the end of the month, already? Where did the time go?! I have SO many jobs on my to-do list still itching to have a line scratched through them. Do you ever feel like there's just too much to do and not enough time to do it all? Or is that just me??

Well, those jobs will just have to wait a little bit longer, 'cuz today I'm busy blogging! To wrap up this crazy month of quarantine and final exams, I decided to join the awesome link-up party going on over at A Chronic Voice. Time to dive deep and share my thoughts, y'all! Here goes:

1. FORESEEING
Who else out there is a control freak? I always want to know EXACTLY what the plan is and exactly how I fit into that plan. By the age of thirteen, I knew exactly what I wanted my college major (and minor) to be, exactly how many kids I wanted to have, and exactly everything about every other detail in between. My life was all mapped out and I simply had to put in the work to make my dreams happen.
Then one day, God must have taken a look at that bullet-point outline of my life and laughed until His sides hurt. Next, He decided it was time for me to learn a little bit about trusting Him instead of myself. So that's how my puny little plans saw the warmer end of a blowtorch. My dad lost his job, my family fell apart, and everything just kinda went downhill from there. And then I thought it couldn't get worse, but it did. Chronic illness hit my body like a truck while a deep, dark depression wrapped its tendrils around my mind. 
Fast-forward to today. Some things are better, but other issues in my life remain as broken as the day they started. My chronic illness, for one thing, has decided that it is here to stay. Yet at the same time, I've also been granted blessings which I never would have expected or deserved in a million years. 
All this is to simply say: I have absolutely no idea what I foresee in my future.



Just take a deep breath and go hold a fuzzy baby goose.
Because everyone raises baby geese in their backyard... right?
Oh wait, maybe that's just my family!! :D

June marks my twenty-first birthday. I'm not thirteen anymore and I definitely don't have my life all planned out anymore.
But you know what? That's okay.
There's nothing wrong with living life one day at a time. Especially when the population of the world gets hit with a huge, mysterious pandemic that spreads fear and panic faster than the virus itself. It's okay not to know everything during this time. Instead, just breathe. Stop worrying for a moment and look around you. Smell the spring flowers and hold a fuzzy baby goose. Enjoy today just for today, and let tomorrow deal with its own troubles. 
Now, I definitely still have one eye on the {very fuzzy} future. I'm still studying hard to earn my college degree. I'm still saving money so I can someday gain some semblance of financial stability. I'm still investing in relationships with the people whom I love. And I'm still trying, as painful as it may be sometimes, to grow deeper in my relationship with God. These are the things in my life that will never change.

But apart from those things, it is my goal to set aside my control-freak tendencies. I don't want to waste my precious energy by making plans that are just gonna get derailed anyway. Because here's the hard truth: My body's absolute unpredictability makes my whole life unpredictable. Even just this morning, the simple task of picking spinach in the garden got cut short when my legs abruptly decided that they were too shaky and weak to support my body anymore. And just like that, my plans for the day were obliterated and I spent the next five or six hours in bed. 
I never know when my POTS is going to rear its ugly head and trash my plans. So I've honestly kinda learned not to make too many plans in the first place. My life "plans" have been reduced to, basically, just a blob. But I rest assured, because I know that my Father in Heaven does have a plan for me. And that divine plan for my life is so much more perfect than anything my little brain could ever concoct. 
2. UPBRINGING
I was always taught to be tough. 
"Oh, you fell off your bike a scraped your knee? Well, crying about it won't fix anything. You know where the peroxide and band-aids are -- go inside and fix yourself up." 
Now, don't get me wrong. I truly love my mom, and she has many great qualities. However, sympathy for my hurts wasn't exactly her strong suit when I was a kid. 
And I learned from her. I learned that pain was a bother, that blood was an inconvenience. I learned to silence my body's messages because I thought they weren't worthy of being heard. I was a tough girl. Nothing could break me.

And then... it did. My POTS started subtly enough, but I didn't listen. I figured I was just a normal sleep-deprived college student. So then my POTS decided to make me listen. It hit me in full force and left me utterly, completely broken. And no band-aid in the world was big enough to fix this new boo-boo.
Today, I have learned to play a strange balancing game. On the one hand, I ignore my pain and dizziness and aching and everything else going wrong in my body at any given moment so that I can at least pretend to have a normal life.
But on the other hand, I've learned to always be acutely aware of the sensations swarming my mind. Every new symptom I feel -- every muscle spasm, every headache, every blackout -- receives careful evaluation: Is this nausea on my "normal" spectrum, or is it worse than normal? Do I need to call my doctor? What about this blasted headache -- is that a new feeling, or is that just another old familiar symptom for me?
Each day is a struggle as I play this brutal balancing game. If a symptom is new or worse than before, I talk to my doctor and run some tests. I don't want to miss something that could easily be caught by my doctor. But if the symptom is just another part of my everyday POTS journey, I don't bother my doctor. He's already helping me as much as he can, anyway. I just take my medicine, drink a huge glass of water, and tough it out. Just like I did when I was a little kid. 
3. SOOTHING
The panic of quarantine. The stress of final exams. And the annoyance of more doctor appointments than I expected this month (Apparently I have a cyst in my wrist?? So my body is just making little bubbles inside itself... cool.). Needless to say, I've been desperate for a little soothing this month. 
As much as I would rather not admit it, let's be honest here: my first coping mechanism is Netflix. But endless quarantine means endless Netflix, and I can only binge-watch Riverdale for so long. 
So I've been trying to steer away from the automatic habit of pulling up Netflix on my phone and checking my brain out for the day. Instead, I'm trying to find activities that are soothing but also constructive. Here's my top three:

1. Turning off distractions and focusing on God. I wish Bible study was my automatic coping mechanism, because it definitely heals my mind a whole lot more than Netflix ever could. Time to make new habits, right? Lately I've been reading a free devotional from Matt Redman called 10,000 Reasons. I also just bought a new guided prayer journal last week, and I've already started inking up its pages. It's so satisfying and so healing at the same time. 
2. Getting covered in fun paint colors. I absolutely love the satisfaction of signing my name on a finished painting. I know it's not April anymore, but this month I just discovered The Art Sherpa's free collection of Acrylic April 2020 tutorials. And I'm loving it! I love listening to quiet music or nature sounds while I focus my mind on the colorful pigments my brush holds. Sometimes, though, I'm not sure if I get more paint on myself or on my canvas. That's what showers are for, right? Oh wait... I don't have the energy to take a shower. Guess I'll just be covered in paint for a bit! :)
3. Breaking a sweat on my yoga mat. I used to love running, but POTS took that away from me. So after two years of forgoing exercise, I've decided to kick that lazy, lie-around-all-day-and-not-move habit. After a quick YouTube search, I found Yoga with Adriene's free 30 Day Yoga Journey for 2020. I'm taking things slowly and carefully (definitely gonna take me a bit longer than 30 days), but I am pleased to already feel just a little bit stronger than I was last month. So that's my goal: one step at a time. One step at a time is one step closer to my goal than I was one step ago. 

All of this sums up just a small peek at what I've been up to this past May. I'm feeling hopeful as the calendars flip to June. Guess we'll have to wait and see what comes next, right? I can't wait!

In the meantime, my friend, stay strong. Try not to stress out too much about whatever is around the corner for you. Regardless of what comes, I'm praying for you.

Bonjé

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P.S. How would you respond to the writing prompts of foreseeing, upbringing, and soothing? How are you feeling about the month ahead -- hopeful, anxious, overwhelmed... or all of the above? Join the conversation in the comments below!

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What in the World is POTS Syndrome??!

To many people, I look like just a normal college-aged kid. That is, until I'm passed out on the floor.

That's when the people around me suddenly realize... I'm different. My body is different.

The thing that makes me different is called POTS. Postural Orthostatic Tachycardia Syndrome is a complicated health condition (and I'm by no means a doctor), but I'm gonna take a stab here at explaining POTS-- to the best of my understanding and experience-- for those of you who are genuinely curious about how my body works.

Postural: Basically, My Body is Allergic to Gravity

Just chillin' on the couch? I'm fine.

But as soon as I change my posture (thus the term postural) and stand up, gravity happens. And gravity is a powerful force. 

But the human body is stronger than gravity! The way things NORMALLY work in response to standing up is that your heart rate temporarily increases by 10-15 beats per minute. This is to counteract a small drop in blood pressure caused by the increased gravitational pull of standing. But this raise in heart rate is short-lived. Your body's long-term response to standing upright is to tighten up its blood vessels (particularly the ones in your legs) to help compensate for the increased pull of gravity on your blood.

Then as soon as your blood vessels constrict (which normally happens within 30-60 seconds of standing up), your heart can return to normal and continue happily pumping blood to every part of the body just like it was before. And life goes on and everybody is happy, because every organ in your body is getting their fair share of blood (and oxygen and nutrients and all that other good stuff carried in your blood).

This is how a healthy person's body works. With the help of chemical messengers, your autonomic nervous system regulates much of this process. You don't even have to think about vasoconstriction when you stand up... it just happens. Your body contains built-in protection against the force of gravity which pulls on your blood.

But a body with POTS tells a different story. Somewhere, somehow, my autonomic nervous system got damaged. So now, when I stand up, my body doesn't compensate correctly. The chemicals that are supposed to trigger constriction of my blood vessels don't get released. So guess what happens? Gravity wins. My blood sinks toward the earth unchecked. And my body starts to freak out.

Orthostatic: The Longer I Stand Still, the Worse it Gets

When I don't have the option to sit or lie down, I do the next best thing: I move.

Even (or especially) when I'm stuck standing in the middle of a super important conversation, my toes are always wiggling inside my shoes. I've learned to surreptitiously squeeze and release my calf and thigh muscles as I talk. And I shift my weight back and forth between my heels and my toes and from one foot to the other as I wait out the conversation. 

All this moving of my skeletal muscles is a desperate attempt to keep blood from pooling in my legs. When my skeletal muscles contract, they squeeze the adjacent blood veins and encourage blood to return to my heart.

But moving around can only mitigate my symptoms for so long. Even with the help of my legs' skeletal muscles, the organs in my body don't get enough blood to function properly. 

Especially my brain. Since my brain is at the top of my body (and my blood is pooled at the bottom), it often suffers the most. "Brain fog" is my everyday existence; basically, I literally cannot think on my feet.

If I'm standing up, then my brain is not getting fed enough blood to formulate clear thoughts. Everything is jumbled and I lose the ability make sense of the world around me. I have to claw through a thick fog in my mind just to string voices together enough to understand if someone is talking to me. So if you feel tempted to give me a pop quiz in this state... don't. Based on my answers, you'd probably wonder how I ever graduated from kindergarten.

Now I want you to understand: If I lie down, everything will be fine. Within a few seconds, my blood will happily flow back to my heart and head (especially if I prop my legs up a bit), and all my organs will be happy. By the end of a few minutes, I will feel like a normal girl again who can totally ace a college-level pop quiz.

But if I don't lie down, my body will begin to shut down. My hands start shaking. My limbs go weak. My vision gets blurry and goes completely dark. And I have maybe three seconds to lie down on the ground-- wherever I am, however dirty it may be-- before I entirely lose control of my body. (Many POTS patients completely faint at this point, while others only experience a crippling sense of near-syncope. I experience near-syncope and then end up in a conscious, limp paralysis until my body is able to recover from the shock of being upright.)

Tachycardia: My Heart Can't Stop Working Overtime

Tachycardia is the medical term for a fast heart rate. This is the most iconic symptom of POTS, especially when standing upright.  A POTS diagnosis requires an increased heart rate of at least 30 beats per minute (40 bpm for children) within 10 minutes of standing up from a lying position.

But those numbers are just the minimum. My heart often jumps from 60-65 bpm while lying down to 130-140 bpm while standing. That's an increase of 65-80 beats per minute, just from a simple postural change. My heart rate doubles every time I stand up. I don't have to go for a run to get exercise; my cardio workout for the day is just standing up.

But why? Why does my heart hammer like a woodpecker every time I stand up? The gist of it is that my heart knows something is wrong. And that poor little heart is trying as hard as he can to fix the problem.

As soon as they realize they aren't getting fed the nutrients they need, all the organs in my body start screaming at my heart to DO SOMETHING about the blood shortage.  So my heart does the only thing he can think of: he beats faster. Maybe, just maybe, if my heart can pump hard enough and fast enough, he can send the blood that is pooling in my legs back up to my brain where it is so desperately needed. 

But it doesn't work. No increase of heart rate can substitute for the power of vasoconstriction. My heart is able (just barely) to keep me conscious, but that's all. The power of gravity is too strong for the poor little guy to overcome. 

But my heart is valiant and stubborn. He doesn't give up. So he keeps desperately pounding away, hoping that one day his efforts will amount to something. 

(And yes, I do realize I just personified my heart in the last few paragraphs. It's about time, honestly... he does do a lot of work for me. I think I'll name him Fred. What do you think?)

Syndrome: Oh Honey, This is Just the Beginning...

POTS syndrome is classified as a dysfunction of the autonomic nervous system. Therefore the condition is termed a dysautonomia. And since my autonomic nervous system controls much, much more than just my heart rate, I feel the effects of POTS in many areas of my body.

If I were to fully describe every one of my symptoms, this blog post would never end. That's why this medical condition is called a syndrome: POTS is a collection of symptoms, not just one symptom. This is also what makes POTS confusing and hard to diagnose, because it shares symptoms with many other medical conditions. And every POTS patient experiences a different combination of symptoms to varying degrees.

Here are the symptoms (besides the ever-annoying tachycardia) that I notice every single day:

Fatigue. Unending, eternal fatigue. This is absolutely #1 on my list of symptoms. When I say the words "I'm tired", I don't mean that I need a 30-minute nap and then I'll feel fine. I'm trying to somehow express that I am utterly, completely, totally drained of every. single. ounce. of energy that I ever dreamed of in my entire life. If you somehow think I have energy... I promise you, I'm faking.

Hypersensitivity, Headaches, and Brain Fog. The world is often too bright, too loud, and too exciting for me. My nervous system can't handle auditory and visual stimulation very well. Best case, I get a nagging headache. Worst case, my body shuts down and I wind up stuck in a conscious-but-paralyzed POTS seizure.

Lightheadedness and Vision Abnormalities. Every single time I stand up (and other random times when I'm doing nothing at all), my vision goes black for a few seconds and I feel weightless-- like I'm floating. Then my vision slowly comes back just enough to see hundreds of glittery stars winking back at me. At some point too I usually lose my balance and have to grip the wall until the stars go away and my vision returns to normal. (I honestly used to think this happened to everyone... then I learned that experiencing near-syncope multiple times every day isn't actually supposed to be a normal everyday activity!)

Wacky Body Temperature. I am always FREEZING cold, especially my fingers and toes. I can never get warm enough. My fingers often physically hurt because they feel like ice cubes. Just for fun, sometimes I'll slip my fingers behind my boyfriend's shirt collar so I can watch him shrink away from my snow-queen touch. But then when my boyfriend turns around and hugs me, he complains that I am as hot as a furnace. My blood circulation is just so poor that my raging body heat doesn't spread out to my fingers and toes. 

Exercise Intolerance. I used to jog for fun when I was in junior high. I absolutely loved the satisfaction of a good workout, and I was working my way up to running a 5K seamlessly. But the last time I tried to go for run (two years ago, a week before my POTS syndrome hit in full force), I didn't get far before I found myself curled up on the ground crying in pain. My ears were ringing, shrieking at me. I held my head in my hands, expecting it to burst any moment from the overwhelming pressure inside. My heart was in my mouth and pounding harder than I ever thought possible. My stomach was sick and I couldn't breathe. I tried to drink water, but it only made the waves of nausea hit me harder. And as I lay there on the ground crying and gasping for breath, I began to realize that my body had given up. My strength was gone. And my jogging days were over.

A few more issues relating to my POTS bother me at least a dozen times every month or so: Insomnia, Shakiness, Chest Pain, Excessive Sweating, Nausea, and Gastrointestinal Issues. 

I also used to regularly experience conscious-but-paralyzed non-epileptic POTS seizures as well, but now that I am on the right blood pressure medication I have not experienced a seizure for over a year now. And I praise God for that, because those were definitely NOT fun!

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For more information about POTS:
POTS Visualized in a Short Video by Dysautonomia International
20 Signs You Might Have POTS from The Mighty
Cleveland Clinic's POTS Management Manual
Colorful Data from a POTS Survey Conducted by MyHeart.net
10 Facts About POTS from Dysautonomia International
A Detailed Explanation of POTS from Johns Hopkins Medicine
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Hopefully this post comes across to you as informative and not just me complaining about all my woes. Sure, POTS is hard, and my body is weak. But I have Jesus Christ on my side. So when I am weak, I know that I can count on Him to give me strength. That's why, even though life is rough for me sometimes, I am determined to show Christ's love to others around me who are struggling too.

This week (or anytime), if you send me a message, I would love to pray for you as you battle the demons in your life. Let me know what I can pray for! :)

Stay strong. I'm praying for you. 

Bonjé Gioja

P.S. If you're a POTSie, what are your worst symptoms? Or do you know someone who has POTS? Does my explanation make sense to you, or is POTS still a super confusing topic? (Don't worry, I'm still learning about it too!) Let me know your thoughts in the comments below.

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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.
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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
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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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Wishing You a Happy Stay-at-Home Easter! :D

Happy Easter to all you special peeps! Even though we're all stuck at home, I hope that you and yours have found your own way to celebrate the Lord's resurrection on this special day.

I am choosing not to write a whole blog post this week. Instead, I'm gonna spend some extra time with the people I love (at least, the ones who live with me).

But in order to quell any disappointment on your part, I have a peace offering: an endearing (if somewhat old-fashioned) Easter Sunday photo from years past.

Every year, my family used to spend Easter at my adopted grandmother's house. After eating LOADS of food and chocolate Easter candy, I always loved traipsing outdoors to hunt for eggs. But this particular year was extra special, because my mom and older sisters made matching dresses for us to wear!

Can you guess which girl am I in the picture? The tiny and absolutely adorable two-year-old, of course!!! Who could EVER resist those chubby widdle cheeks? More candy, please!
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Stay strong this week and know that I'm praying for you. I care about you, and our risen Lord cares about you too.

Happy Resurrection Day!

Bonjé Gioja

P.S. What's your favorite Easter memory? Anybody wanna share their ideas for how to make a stay-at-home holiday a little more special? And how do you still make holidays special for your family when your energy is low?

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! :)

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