Jennifer's Story

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Jennifer P
20
Virginia


My entire life has been a series of health problems. As a child, I caught every illness possible, and the illness would affect me far more than the average person. I grew up in Minnesota but decided to go across the country to Auburn University, to get away and begin a new, exciting life. Hopefully with better weather and less illness. Unfortunately, my freshman and sophomore year of school consisted of viruses, infections, and more. Little did I know, getting mono the spring semester of freshman year, would mark the start of the most challenging year of my life. With Mono, I spent two weeks in the hospital and did not recover for three months. Even then, I was not 100%. The fall semester of sophomore year, I returned to school hoping to have another chance at a “normal” college experience. That didn’t last long. Two months into the semester I was sick. I kept complaining to my mom about being extremely weak, tired, and I had an odd sensation that kept occurring in my forearms. Along with a decline in my overall mental health with issues like brain fog, everything seemed to worsen as I could not muster the strength to attend classes or even get out of bed.  My mom decided to fly me back home to Virginia, where they moved after I went to college. I could hardly stand to make it through the airport or security lines without passing out, let alone, dealing with the pressure change of the airplane ascension.

I eventually made it home and started seeing numerous doctors in hopes of finding an answer. Each of the doctors told me my all of my blood work was normal and there appeared to be no problem. I finally decided to see a trusted family friend who is an Endocrinologist. She was the first doctor who took my blood pressure in the supine position, sitting and standing position. It was all she needed to refer me to a POTS specialist in Reston, VA, who performed the tilt table test. I failed miserably. That day I was diagnosed with severe hyper-adrenal postural orthostatic tachycardia syndrome (POTS). I was crushed. He put me on a regimen of 19 pills a day, and told me to consume mass amounts of salt, and begin to exercise. I had to write down the times at which I had to take all my medicine, and how many milligrams of salt I had to consume. At nineteen, I carried a pill bag the size of a lunch box and even with all the medicine, I really wasn’t any better.

Each day my emotions went through a cycle of sadness, anger, and defeat. I began to swim laps in the pool in order to fall asleep. Each day was a long, exhausting, emotional, and physical challenge. It took an equal toll on my family members. Watching me experience such difficulty was heartbreaking for them. With only two weeks left to go in my fall semester, I finished it via email with extremely accommodating professors. I could hardly do that because the stress took a toll on my body and I had little to no energy.  My family flew with me back to Auburn to complete my remaining final, which I took in the professors offices, in case of emergency. I had to lay down for about thirty minutes of my biology final; it was experiences like this that kept discouraging me and reminding me I am not as capable as the average person. I had 3 weeks of winter break and I had to decide whether or not I would continue college.  It was a big decision point but I decided I couldn’t give up. I found a neuro-science specialist that helped me with three weeks of intensive biofeedback. It taught me how to calm myself when my heart was racing and to focus on retraining my brain to regulate. Then in mid-January, I flew back to Auburn to give it a try. The day was one of the scariest days of my life. I had no clue how I would make it through a whole semester of class when I could hardly pack my bag without having to lay down and take a break.  I had to explain my condition to everyone I knew, who still did not understand by the time I was done.

The Auburn Office of Accessibility was amazing. They really worked to understand my illness.  I took 13 hours and received accommodations, but it wasn’t easy. I walked out of several classes, missed several classes, did not do anything social, and had a vigorous schedule. I struggled terribly and considered dropping out several times. But I couldn’t let myself or my family down. I had to decide I was not going to be defeated. I needed to figure out how to live with my illness. I needed to figure out my physical limitations but then how to overcome them. I finished that semester with best grades of my college career. I decided to change my major to nursing, so I can be a light in someone else’s life. I have had so many close minded doctors and nurses and the way these people over-looked me inspired me to want to change that for others, and become a nurse myself.

Today, I am a junior in college and have reduced my medicine to two pills a day. The last year has consisted of exercise, a great support system, medicine, rest, emotional break downs, and doctor’s visits, but most importantly a resilient and positive attitude. Which is the reason I am excited to consider myself someone with a success story. I am on my way to being POTS-free, and will be celebrating my one year anniversary with pots instead of grieving. If you have just been diagnosed with pots, you need to stop grieving and get up and start fighting. The condition will not destroy you. It is possible to outgrow it and manage, you just have to want it. This is a chance to prove yourself worthy, and to be the absolute best you can be because life is never as valuable and precious as when you are chronically ill. POTS will teach you to take care of yourself, slow down, work hard, and hope for a better future. I have learned more about myself in the last year than I have my entire life. The challenge made me stronger. Even though I tried to give up numerous times, I had family cheering me on, and my positive attitude to go with it. A pots diagnosis is not an ending; it is the beginning of the hardest, and most inspiring journey you’ll ever experience.