What was your journey to getting a diagnosis like?

I began feeling very sick around my sophomore year of high school. I was a cheerleader (not for my HS) and was struggling a lot... I felt really dizzy and sick whenever I practiced. I missed so much school due to fatigue, nausea, etc. My doctor was constantly doing various blood work on me, referring me to neurologists, and more. She couldn't get to the bottom of it. After about two years of constant appointments with no avail, she referred me to a pediatric cardiologist. At this point I was about 17. Two minutes into the appointment the doctor said with a smile on his face like he was so glad he got to the bottom of it, "I think you have POTS, dear." I took the Tilt Table Test and it came back positive.

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What is your biggest struggle with Dysautonomia? 

Feel free to describe. My biggest trouble is school and being social in general. I go to college at Ball State University majoring in Speech-Language Pathology. I even had to choose a major that suits POTS (one which includes mostly sitting down) just in case I don't "outgrow" it like my daughter is hoping I do. It's crazy I have to take that into consideration. Missing so much class gives me a lot of anxiety. It's often hard to keep friends because I am constantly bailing on our plans because of not feeling well. You never know when you'll have a flare up, and often times, your friends don't understand. Since I don't look sick, people have trouble understanding that I'm not using it as an excuse. Another struggle is my intolerance to any physical activity. I would love to be able to play volleyball with my friends or workout. I'm gaining weight and I feel I can't do much about it! Exercise intolerance is a big issue for me.
 

What are your top three treatments that help you function daily? I take Toprol XL in order to lower my heart rate, Florinef to raise my blood pressure, and Pristiq to compress my blood vessels. Drinking a ton of water really helps.
 

Who has inspired you most on your journey?

My cardiologist. He is the sweetest man I have ever met. He has been so supportive and optimistic for me. Although most people who do end up outgrowing it have already done so by this age, he assures me every appointment that I will and that I can make it through anything.
 

What would you like to say to the public at large about your situation and Dysautonomia?

​Just because we "don't look sick" doesn't mean we aren't. I would just like to tell the public to try to understand our limitations, we aren't "being babies."
 

What advice would you give to a newly diagnosed patient?

Understand your limitations. And DRINK LIQUIDS!