Living Life as a Musician with a Disability- Part 1: The Diagnosis
Updated: May 1, 2021
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).
Shocked that there was actually something wrong with my heart even though "I was a baby", they sent me in for an ablation. An ablation is where they go in through your upper thigh and snake their way up to your heart with a device that burns off the "extra wires" that are firing off to make your heart rate jump. You are awake the whole time, they force your adrenaline to go up to make your heart race, it takes about 8 hours (at least every time I've done it), it hurts, and one wrong move and they could accidentally burn through the wall of my heart. In short, It's basically a form of torture. I'm not going to sugar coat it. I was willing to go through it, though, if it meant that I could possibly get back to normal.
Unfortunately, it didn't work. The cycle began again. Except this time it was "We gave you an ablation, so it's clearly not SVT anymore." Onto another doctor. Round and Around we go. Where we stop, nobody knows!
That was when I met Dr. K. A Neurologist that really took his time with me to figure out what was going on. He ran an in office tilt table, and turned to me and said "Have you ever heard of POTS?"
My mom and I laughed
"Like, smoking pot? I mean I'd be lying if we said we hadn't thought about it! We'll try anything at this point!"
He laughed now.
"No. Like Postural Orthostatic Tachycardia. The tests show that you have it."
He explained more about it. A quick lesson on POTS: it is a heart and blood pressure condition, but it kind of effects everything. It's a fairly newly researched thing, and they are constantly learning more. It falls under dysautonomia, which means that the things that normally regulate in my body don't. This can cause a lot of other things to come along with POTS. It's a giant circle and everything plays into the next. It's hard to tell if something caused the POTS or if the the POTS caused the others. There were a few medications we could try, but we had to be very careful because by taking care of one thing, we could play against another making it worse. As of right now there's no cure.
After 11 years, I finally had a diagnosis, but no cure. There was some relief in a name though. There was also relief that when we had the name we found groups of people just like me! How this wasn't checked out way back when it started, we don't know, because it explained EVERYTHING I had suffered with for the past decade (+).
We started bi-weekly infusions of magnesium and hydration (we tried the salt and water diet first, but it just made me gain insane amounts of weight), and some medications. We also continued running tests to see if we could find some of the underlying issues that we could take care of. Chip away a little bit at a time, and see if it makes things easier for me. A year later, we found more SVT. I had to go in for another ablation. This time they were not confident that they got it, but they said they did not want to do another one. Unfortunately, I don't have many choices.
Over the years I've been diagnosed with many things that come along with POTS, but with each diagnosis we run into more of a struggle trying to figure out how to treat it. I had a doctor call me "an anomaly", because everything is basically working against each other.
Just recently we found another SVT. They were right not to be confident, because they didn't get it. They were wrong that they weren't going to do another one, because my options are limited. So I go in for another ablation and possible pace maker on April 29th.
God has brought me through this far. I'm somehow an anomaly that has made it though 15 years with all of this, and more. So I have faith that he will bring me through this too. I will accept all prayers and good vibes, though.
So here I go, into my 5th surgery in 10 years. Not ideal, but I still have hope.
I promise I will keep updates on our Instagram story for anyone that wants to keep up. After my procedure , I will post part 2 where we'll talk all about how I've had to readjust to being a musician with a disability and about how this disability lead me to where I am now.
I will see y'all on the other side!