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.]
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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.
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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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