Bedtime Reading


On my 22nd birthday I was told by a cardiologist that I needed to "accept" that I had a chronic illness and that it was possible I may not be able to finish college or have a job. She told me nonchalantly about a patient who couldn't hold down a job and was wheelchair bound. She mentioned POTS was frustrating and that some people never got better. Wow, Happy Birthday to me. At a time when I should have everything to look forward to, I was told well, that I didn't.

I decided that fateful day that I wasn't going to let this beat me. I wasn't going to let POTS ruin my life. Me, the former collegiate scholarship soccer player who had recently taken up competitive cycling, the fitness model who now can barely walk two laps around a track without stopping and squatting, no I wouldn't let this beat me.

I also decided I needed to find a physician who approached treatment positively. I enrolled in a POTS study Dr. Julian Stewart (DYNA medical advisory member) was doing, which focused on adolescents and young adults, just like me. After one failed attempt to go off of medications (study requirement) which caused me to fall into a pole, I finally went off the meds and flew 3,000 miles from California to New York to see Dr. Stewart. The trip was worth it. He was positive and he gave me hope, which I think is more important than any drug.

Like many others with POTS, the actual drugs I've tried have not worked. After two years of this though, I'm learning how to manage most of the daily problems it presents me with. I am still in college, on track to graduate soon and am doing very well academically and applying to medical school next year. I have experienced the full-spectrum of POTS problems. I spent many days crawling around the house, have scars from falls, have spent days in bed because every time I stood up I saw black, fallen in classes and hit things, and have even had to have friends help me off the toilet. I have seen numerous physicians with most not understanding POTS and telling me "But you look great!" The few that do understand POTS (Aside from Dr. Stewart) gave me a grim outlook on life.

One day while lying in bed I read an e-mail from Dr. Stewart that simply stated in all capitals: "DO NOT STAY IN BED." First I rolled my eyes at his abridged, frank response. Then I decided I had to heed his directions and get up and get moving. Being that pre-POTS I cycled competitively, I decided I was going to ride my bike, regardless of what would happen. I did it, 12 whole miles. Yeah, I puked. Yeah, I fell when clipping out, standing up and getting dizzy at a stoplight. Yeah I took off my shoes and my feet were purple and numb. I took off my gloves and my hands were purple too. I couldn't breathe. I laid in the driveway for ten minutes, then I crawled inside and laid on the carpet for 30 more. Laying there, helmet still on, I learned a valuable lesson: It is imperative that everyone with POTS get up and get moving. Every time I don't get up, the next time I finally do is going to be harder.

I have tirelessly searched the internet for POTS success stories and have come up painfully short. I decided I needed to become a success story. I'm not there yet, but I will be. I went from doing horribly in college to getting straight A's, even though my POTS has not gotten better, in fact it is far worse. I'm just learning how to live with it. Every day is a challenge and every day I must live up to that challenge. Sometimes the only person that will be there to help you up when you fall is yourself. I will not let this beat me, and neither will you.