I have received a few comments to share my story – how I became sick, how I recovered, where I am now. I am a bit hesitant honestly. I don’t really like to talk about my unexpected illness because I still don’t have an explanation for well… anything that happened or is still going on. It is hard to come to terms with the fact that you don’t know what your body is doing, but I think it can be even more difficult to understand that the doctors are just as lost.
I know another part of me just wants to forget everything. It was a pretty bad year. I have some pre-existing medical conditions, so self-advocating, a difficult medical system, and the insurance system were not completely new; however, when almost no doctor takes you seriously, it becomes difficult to take yourself seriously.
So what actually happened?
In the summer of 2016 I got a stomach virus. I had been traveling around Iceland in a hatchback, eating an unhealthy amount of PB&J sandwiches, and sleeping in the trunk. As fun as it was, I was not really surprised that I got sick the night I arrived at my partner’s place in Bulgaria. Not to be graphic – but things were just not staying inside in any manner, but the most noticeable symptom was my fatigue and light-headedness. I passed out almost every time I stood up, could only manage light walking around the house, and needed an extreme amount of rest. I chalked it all up to having basically no liquids in my body and thought it would get better in a few days.
But months passed.
I was still having trouble eating… basically anything. My heart rate became more and more erratic. I started legitimately passing out. I became heat intolerant. I had a decent month when we visited friends in Greece; however, once we traveled back home to Boston, my condition started to deteriorate quickly. I was working as a chef – and it slowly became apparent (as I passed out at work over and over) that I needed to find a new job. I started to have reoccurring, debilitating chest pains, so bad that I ended up in the ER thinking I was having a heart attack. I was discharged with honestly more questions than answers.
Trying to cool down in the walk-in refrigerator during dinner service, after overheating.
My heart rate while laying down one day.
Introduce The Doctors
Before this experience, I liked to believe that doctors held all the answers. My father was a doctor, I had finally controlled 10 years of unmanageable migraines with the help of doctors, and they just seem to be pretty knowledgeable, right? Eh, maybe not so much. I quickly accrued appointments with cardiologists, neurologists, and orthostatic specialists. Yet no one had answers - even after echocardiograms, wearable EKG devices, and tilt table tests. My neurologist said it was a cardiac problem. My cardiologist said it was a neurological problem. My orthostatic specialist said my condition was not ‘bad’ enough to look into.
Staying stylish with my event monitor - a wearable EKG that records when triggered.
I continued searching for answers.
Part Two coming soon