Young, chronically ill & coping.

Before dysautonomia, I was an average teen, living in a small town. I was carefree, full of joy and surrounded by great friends and family. I played volleyball, spent a lot of time in the water.
At age 14, the summer before freshman year, I started having debilitating headaches, neck pain, and fatigue. My mom took me to see my family practitioner and he sent me home with the the thought that I just had a passing virus. I continued with my high school activities, not letting up and soon after I was beyond exhausted. I seldom even wanted to eat. When I did eat, the food would cause nausea. I went back to my general practitioner several times and eventually was diagnosed with mononucleosis. I was instructed to strictly rest until I felt back to myself. Life was never the same! Eating caused intense stomach cramps. During showers or while standing, I often would get a sharp pain in my stomach, feel dizzy and pass out. Thankfully my mom was home the first time I lost consciousness. While I was completely oblivious, thinking quickly, my mom took my vitals and was unable to get a heart rate. We went to the nearest emergency department and from there was referred to a local neurologist. Based on the clinical symptoms, he thought we should try medication for a seizure disorder. That didn’t improve my condition and I continued to decline. I was sent for some testing, but the results were negative. After months of being sick, a colleague of my mom that worked as a radiology technician, suggested having a tilt table test. I was scheduled with the best cardiac electrophysiologist, in our area, who preformed my test. During my tilt table test, I flatlined for 18 seconds, until I was tilted down. I had an emergency dual chamber pacemaker placed. The doctor wasn’t sure of the underlying cause. Needing answers, my mom got my referral to Mayo Clinic in Rochester, MN and I was accepted as a patient. At Mayo, I had a team of doctors working together to run test and diagnose. While my initial diagnosis was a great start, after 17 years and the work of Mayo Clinic, Vanderbilt and Cleveland Clinic, we now have a grasp of the syndrome as a full picture. My diagnoses are as follows:
Dysautonomia, which is an umbrella term for a malfunction of the autonomic nervous system (the system that quietly works behind the scenes): small fiber and autonomic neuropathy, hyperadrenergic postural orthostatic tachycardia syndrome (hyperPOTS), mast cell activation disorder (MCAD), gastroparesis,  & I have struggled with insomnia, BEYOND dysautonomia: polycystic ovary syndrome (PCOS)/insulin resistance, ehlers-danlos syndrome type 3 (EDS3)  (this is a genetic condition that I have had my whole life, though was only diagnosed two years ago).
Becoming chronically ill changed my life both positively and negatively. It has given me wisdom beyond my years. Without dysautonomia, I wouldn’t have this old soul. It has allowed me to grow, have a deep heart for others and live with zeal. I love meeting new people who are genuine, interesting, quirky, and above all else perfectly themselves. I’ve learned to be spontaneous, make memories, focus on the good and let go of the bad. As Peter Pan said, “To live will be an awfully big adventure!”