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

__________

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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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! :)

P.P.S. Don't forget to subscribe to my blog posts, either right here or in the sidebar to the right! :)

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