My Life With Dysautonomia Began Long Before My Diagnosis


My life with dysautonomia began long before my diagnosis. I have always referred to myself as klutzy. I’m the one who misses steps, slips easily and considers using bubble wrap when I travel too far out of my comfort zone.

While I’ve always been someone who carried a lot of extra weight, I’ve been that person who loves to participate in things like swimming, snorkeling, riding boats and jet skis and trying as many new experiences as I can.

But my friends will tell you that I’m also a geek before her time and love “Star Trek,” “Star Wars,” “Doctor Who,” “Firefly,” astronomy and astrology. But that life of learning also led me to be the first person in my family on either side to complete a masters degree and am currently pursuing a Ph.D.

But here’s where my dysautonomia story begins.

During the process of writing my dissertation, I began to lose the ability to remember facts, figures and relevant resources. Everyone, including my program chair, felt that I was overloaded. After all, I had just earned my MBA, was raising two teenage daughters and was working full-time as a supervisor at a busy call center with more than 15 direct reports. Even with the assistance of my husband and my wonderfully supportive family, I felt like I was falling apart.

I went to doctor after doctor and was told I was overweight but otherwise healthy. They said I just needed to work on my stress levels. I began to think that it was just an emotional break.

About a year later, I was tired of being tired and started to push for a diagnosis. One test suggested fibromyalgia.

But after five trips to the ER with chest pain and palpitations, I finally met a doctor who thought outside of the box. He did all of the appropriate chest and heart testing and provided a fantastically clean bill of health. But he also suggested a discussion of post orthostatic tachycardia syndrome (POTS) and dysautonomia.

Testing showed a strong positive for dysautonomia. And an answer to what was ailing me was finally achieved.

My journey has just begun. Dealing with fibro, dysautonomia and sarcoidosis, along with foot and knee surgeries, I have had about nine months to focus on being a better me. I’m not there yet.

At 52, I’m a little old for a first diagnosis of dysautonomia. But I’ve gained so much hindsight!

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