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Every Chronic Illness Warrior Needs a Hero ‚ÄĒ My Mom Is Mine

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 ‚ÄĒ 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 ‚ÄĒ 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‚ÄĒthrough 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 ‚ÄĒ 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 ‚ÄĒ 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 ‚ÄĒ 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 ‚Äútextbook case.‚ÄĚ I had POTS. The words had barely¬†left his lips before my mom and I were sobbing. We finally had an answer ‚ÄĒ 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 ‚Äúpre-beat‚ÄĚ 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 ‚Äúnormal‚ÄĚ 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