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Every Chronic Illness Warrior Needs a Hero — My Mom Is Mine

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Editor's Note

Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

We all like to think that our friends and family are there for us through thick and thin. As children, we take that for granted, but as we grow up, we find out that isn’t quite true. Our loved ones have their own lives to attend to, and sometimes just keeping things together consumes all their time and energy. We can’t exactly blame them — life can be difficult. Life is a beautiful and painful thing; each life has its share of obstacles, triumphs, tragedies, and miracles. Sometimes it’s all we can do to stand at the sidelines cheering each other on. But some extraordinary people are able to make the time and summon the energy to truly be your support. Often, it’s in times of greatest need that you know who really has your back.

I always knew my mom was that person. She was my mother, of course she was there for me! I never doubted that she had my best interest at heart and that she loved me. Every time in school we had to write a paper about our personal hero, I chose my mom. She was kind and gentle, but strong and supportive — everything I aspired to be. She’d climbed her way through the career ladder as a programmer in a male-dominated field. She worked hard and kept pace with my dad as the co-breadwinner, and they had their dream home built. When I was born, she quit her corporate job to raise me, an only child, and to work alongside my father at his then-new business. I always admired her and looked up to her; I just didn’t know how much that feeling would grow when I got sick.

For those of you who haven’t read my first article on The Mighty, I was living with an undiagnosed medical condition for over a decade of my young life. I dealt with daily nausea and fatigue, but I was able to manage with some difficulty. That changed at the start of my junior year of college. After a stressful summer (during which my grandfather and uncle passed away within weeks of one another), I began the semester with what I assumed was a stomach bug. I saw a doctor, stepped up my fluid intake, and tried to get plenty of rest. Thinking that this would soon blow over, I focused on attending classes and recovering, but I found that my health didn’t improve—through the next five weeks it seemed to worsen. It took me roughly an hour to walk what would normally take me 15 minutes between classes; I had to stop and sit down every few feet when my vision began to blur, and I felt bile rise into my throat. Even sleep, my normal respite, couldn’t ease my symptoms. Every night I woke countless times to the dizziness and nausea that had become so constant. I was constantly overheating — glancing around in the September weather I noticed my classmates had transitioned into autumn-wear, while I was sweltering in the thinnest T-shirts and shortest shorts I owned. Something was horribly wrong with my body, but I didn’t know what it was.

One morning when I awoke before dawn throwing up into my trash can, I decided I’d finally had enough. I was done forcing myself to live through each moment. I called my parents, who immediately informed me that they would be picking me up and taking me home, and I emailed my professors to explain the situation. I felt completely and utterly hopeless; something was horribly wrong with me, and I had no idea what that something was. A few hours later I packed my things and crawled into my parents’ car, and we drove toward home and a whole new set of trials.

For the next month, I was all but bedridden. My days consisted of lying on the couch unable to move or eat much, feeling too exhausted, nauseous, dizzy, and weak to do anything. My mother, however, had declared war on whatever was going on inside me. She spent hours upon hours doing research on the myriad of medical conditions that could have been a possible match for my illness. She made appointments for me to see various specialists in the area and she carted me around to each one, metaphorically and sometimes even physically holding my hand through the entire ordeal. She was my champion, guiding me through the medical maze, courageously charging forward where there was little information. At first, each doctor was stumped. All blood tests came back normal, the ENT couldn’t find anything irregular, my endoscopy was perfectly average, and even the MRI failed to shed any light on what was wrong with me.

Other parents may have given up or resigned themselves to the fate of having a sick child, but my mom kept pushing. She’d spend the better part of her free time (and even prioritized my health over work when she was able) reading research studies and seeking other specialists for me to visit. She was patient with me while I was unable to do much; when I felt up to it she’d take me to stores to window shop, and she’d physically support me when I’d had enough (after about ten to fifteen minutes) and guide me back to the car. She did everything in her power to understand what was going on with me, both physically and emotionally, and it’s something I will never forget or fail to appreciate.

Despite her already hectic life as both manager of the household and manager of the financial side of my father’s business, she was completely there for me. She was there for me every step of the way — we went to doctor appointments together, Googled my symptoms together, cried together, and navigated the complex rules of taking a medical leave of absence from college together. I was fortunate that, as a young adult with an undiagnosed medical condition, my mother believed me. That’s one thing that a lot of chronically ill people lack. So few of us are taken seriously — especially those of us who have conditions that are less well-known like mine was at the time.

In the end, after seeing doctors for a decade who could shed no light on what was going on with my body, followed by a five-week course of what can only be described as its own hell and another month of rigorous testing, my mom followed where her head and her heart directed her. Among the many possible diagnoses, one really resonated with her: POTS (postural orthostatic tachycardia syndrome). The more she read about it, the more it explained so many things about more than just the last few months. She quickly made an appointment with an electrophysiologist, a specific kind of cardiologist. Within days I was in his office and had a diagnosis. After asking me several questions about my symptoms and taking my heart rate and blood pressure lying down, sitting, and standing, he said I was a “textbook case.” I had POTS. The words had barely left his lips before my mom and I were sobbing. We finally had an answer — one without a cure, but with hope for better management.

This diagnosis answered so many questions I’d had for years about my body. It explained why I slept better with my head propped up, why I’d sometimes wake up throwing up in the middle of the night, why I loathed sitting in a chair with my legs on the floor, and so many other odd quirks and difficulties that I’d never dreamed could have been connected. As it turns out, my autonomous nervous system didn’t quite work right. As my new doctor explained, my brain was sending the signals to my nerves to expand and constrict my blood vessels, but they were asleep and ignoring those signals. My heart has to work four times faster than the average person’s just for me to stand up, and my circulation is horrible (so that’s why my fingers and toes are always freezing!).

It was such a relief to finally have an answer, and I owed it all to my mother. Of the many doctors I’d seen over the years, none had even come close to diagnosing me; none of them knew what could possibly be going on. I’d even seen a cardiologist (though not an electrophysiologist) in the same building just a year before about an apparent “pre-beat” or murmur I have, but he hadn’t picked up on anything else. It was because my mother found the exact kind of specialist for me to see that I had a chance of getting diagnosed at that time. That was in October 2011, when far fewer doctors had heard of POTS. Thankfully, things are changing. Doctors are far savvier about the condition, thankfully, and it’s a lot easier to get diagnosed. This makes me even more grateful for all the work my mother put in; I can’t imagine having to wait several more years for my diagnosis. It’s because of her that I was able to get my life back.

My doctor put me on fludrocortisone, a corticosteroid. Almost immediately I was able to enjoy meals for the first time in over half my life. My nausea went from being a daily occurrence that took up several hours of each week to being a minor and occasional issue. Instead of taking Zofran, the anti-nausea medication that had basically gotten me through high school, twice a day every day, I now take it once or twice a month at most. My energy level is still low, but it’s infinitely better than it was at its worst. I struggle to get up in the mornings, and I can’t work a normal full-time job, but I’m able to live what I consider a good life. I was even able to go back to college and finish my bachelor’s in marketing management just one semester late. I’ve also started up a small online advertising business, and I’m engaged! Life has improved so drastically for me, and I truly owe a good portion of that to my mother. She saved me from the darkest time of my life and gave me the strength to push on.

I was so incredibly fortunate to have someone walk that difficult path with me. Every chronic illness warrior needs a hero, be it a friend, doctor, or family member. We struggle through everyday tasks and try to live a “normal” life, but sometimes there’s too much for us to do alone. We may need a push forward or a gentle push back onto the couch for those of us who drive ourselves a little too hard. For those of us who are fortunate enough to have an advocate, pillar, and confident fighting alongside us, thank you.

Image by Angela Asmus

Originally published: September 13, 2018
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