Updated: May 1
If you've been following us for awhile, you may have seen or heard us talk about my POTS. Maybe indirectly. Something along the lines of "Amy has a disability", "I had my infusion this week", "Amy's sick". Maybe you caught one of the shows where I had to step off the stage for a minute, or if you're really lucky, caught one where I just completely blanked and forgot where I was while on stage. Maybe you thought "Is she ok?", maybe you thought "What's wrong with her?" I mean.....that's a complicated answer to both of those, but we don't have time to dive in to that! With my third heart procedure coming up this week, though, I thought I'd give a quick look into what I have, and how I've had to adapt what being a musician looks like with my disability. It will be a two part. Part 1: The Diagnosis and Part 2: Learning to still follow my dreams.
Postural Orthostatic Tachycardia Syndrome (POTS). That's the official name they gave it, though it really doesn't cover everything. It also took me 11 years to get a name for it.
It started when I was 15. Came on like a freight train. I was healthy. I danced, was in marching band, show choir, musicals. There was nothing really to indicate this would happen. one night we were getting ready to hit the marching band field for a half time show, and I got a massive migraine. I had never had a headache like that before. I told my leader I wasn't feeling well and I didn't know if I could go out there. Not to their fault, again I was a healthy girl, they encouraged me to go out there. "It's only 10 minutes. You'll be ok." So I marched out there, feeling dizzy. The stadium lights felt extra bright that night, but I assumed it was just a bad headache. All of a sudden half way through the show, I'm standing there in the middle of the field. I look around and my friends are marching around me looking at me like "What are you doing?"... I was standing there like "What am I doing?" I honestly couldn't even tell you where I was at first. I don't know exactly how long I was standing there, but once I kind of caught up to where I was I found my spot (I was always between the same two people on the marching formations), and followed them around trying to figure out what song we were on. I thought I had figured it out, but I hadn't. See, I thought we were on the first song of the set. At the end we let out a yell and punched the air. So I did just that....to realize, that was not the song we were on. We were at the end of the show. Cool. Cool Cool Cool Cool. 15 year old me was not embarrassed at all! NOT!
That was the first time I blacked out, and we noticed something might be wrong. We started making doctors appointments. I slowly started losing the healthy girl I was, and even making it through school sometimes was a task. We kept getting the run around. The "She's only 15. Probably just being a dramatic teenage girl" excuse. We didn't accept that, though, and after a lot of tests, they said they thought I was having seizures. They called my mom and said they needed to get me on medication right away.
I went through the next few years still getting worse, while they upped my medication more and more. I was on some pretty strong meds, and my mom finally said "before we put her on more of this, lets run another test and make sure that is actually what is going on." Well, guess what. That's not what was going on, or at least that's the story now. After years of seizure medication prescribed by the doctor, we received a call saying "She doesn't have seizures. I think it's all in her head. So we are immediately taking her off all medication." Huh? It's all in my head? THEY were the ones that told me I had seizures and kept putting me on meds! I digress. We took it as a celebration. I didn't have seizures! I could now get my license. Move on with my life.
This started what I call my miracle year. For a whole year, I did not suffer one episode. I was able to learn to drive, got my license, and got a job as a pre-school teacher. I was 19, and I felt like the world was my oyster. I did musicals, college classes, worked full time. I felt my age.
Then it happened. I blacked out, and ran over a curb almost hitting a tree. So back to the doctors, and the tests, and the run arounds. Goodbye to feeling my age.
Test after test: "we found nothing", "Are you sure she's not just letting her emotions get to her?", "She's so young". They couldn't find anything.
At 23 they told me I was no longer allowed to work as a teacher. They didn't know what was going on with me, but they thought it was too much stress. Even though they didn't know what exactly it was, stress was effecting "it" (as we called it) and my body. So without knowing exactly what it was, I was told I needed to quit immediately. They told me to continue my music, which I mean, that wasn't even a thought that I could quit that. I was "allowed" to, though, because it was relaxing for me. I however was not allowed to drive or work a regular job.
As frustrating as that was, I was glad they were finally admitting there was SOMETHING going on.
It went in this cycle for years. "You're so young, I don't think it could be *insert whatever they were supposed to be testing for*" We'd have to fight for a test. They'd do the test, find nothing, send me to another doctor. Mostly in circles between cardiology and neurology with them fighting whether it was my head or my heart. Isn't that always the constant battle in life? All these circles were messing with both.
At 24, after some pushing, I got a 3 day heart monitor put on. They found Bradycardia and Tachycardia both. Some cardiologists seemed concerned. Some blew it off. I had to learn to advocate. My mom learned to advocate when I couldn't. We fought for them to look deeper into it, and they finally surgically inserted a heart monitor loop recorder that would record for 3 years. Within a month of having it in, they had found my first SVT (Super Ventricular Tachycardia).