On Being A Mystery Patient – A Nurse’s Experience with POTS

I can recall vividly every odd sensation, “episode,” and doctor visit from my journey to being diagnosed with POTS (postural orthostatic tachycardia syndrome). Prior to being accurately diagnosed, I completed over a dozen diagnostic tests – including event monitors, Holter monitors, echocardiograms, blood draws, EKG’s, thermoregulatory sweat testing, tilt-table testing, and autonomic nerve reflex screening. I visited with four cardiologists, three electrophysiologists, three primary physicians, a neurologist, and several emergency room physicians. Throughout my testing, I was offered diagnoses ranging from heart blocks, to panic disorder, to lung disease, and then some. I was given prescriptions for more drugs than I can count (of which I took zero), and offered interventions such as ablation, pacemakers, consumption of two gallons of water per day, etc. During this ordeal, I became categorized as a “doctor shopper” because I continuously turned down medical advice with the true belief that I was being misdiagnosed.

My journey to being diagnosed with POTS has been one of the most frustrating, exhausting, saddening experiences of my life. Naturally, it is hard to have faith in a system which offers you so many differing opinions and passes out prescriptions for some serious medications as if they were candy. Many days I would simply cry, wondering if anyone would ever be able to help me and hoping that I would someday feel like myself again.

After undergoing extensive testing at a medical facility with people who specialize in POTS, my diagnosis was confirmed. Although there is no definitive cure for POTS, simply having a firm diagnosis with accompanying ways to improve my quality of life brought me so much joy. And so, it has become my mission to spread hope for those struggling with POTS – because together, and with the help of our medical teams – we can find ways to enjoy the small victories of each day.

First and foremost, I want to tell my POTS brothers and sisters that we need to give ourselves a break. We may not be able to do all of the things we used to do before – but we can still do something. Six years ago, I completed my second marathon, was taking 30-day yoga challenges in 104-degree heat, and making my way into the world of CrossFit. Today, I throw a “me-party” when I can walk up two flights of stairs without feeling like my heart is going to jump out of my chest. I cannot do the things I was physically capable of before without my heart rate hovering around 200, but I can go for walks. I can use the recumbent bicycle, I can do some weight-lifting exercises, and I can experiment with the rowing machine. More extreme forms of exercise may be a thing of the past, at least for now, but I feel empowered to explore new ways of working out, and feel a greater sense of pride and content with my body when it is able to perform these things for me.

I am also grateful for all of the natural therapies that having POTS has led me to discover. Naturally, it is normal to feel a sense of anxiety when you stand up to complete every day tasks (brushing your teeth, for example) and your heart rate is 140. This sense of anxiety has brought me to discover things like essential oils, guided imagery, meditation, and the simple pleasure of sitting in a bath-tub loaded with magnesium salts. Discovering ways to relax when I am having bad days with POTS has led me to implement the same stress-relieving techniques in other areas of my life, which has proven to be very beneficial.

Additionally, life with POTS has truly opened my heart and made me a profoundly more empathetic person. While I cannot say I understand what it is like to live with other chronic ailments, I can say that I understand what it is like to accommodate an unplanned condition in day-to-day life. My desire to comfort and provide support for others is bursting at the seams. As a nurse, I find myself truly and deeply invested in the balance of physical, mental, and emotional health of my patients on a level I likely could not have reached without my journey with POTS. To share in the uncertainty, fear, and anxiety of others is a profound honor and one that has inspired me to count all the blessings I still have every day.

Perhaps most significantly, my journey with POTS has made me appreciate all of my friends and family in a whole new light. Though I am sure that all of the people I love have faced their own frustrations throughout my journey, they have always been insanely supportive. My husband has been at every doctor visit that I asked him to attend, filled my water bottle for me on countless occasions, comforted me in my most anxious moments, and helped me complete tasks on days when I am really struggling. Sometimes it is easy to make it all about myself and forget about all of the support that my loved ones have given me – but when I really stop and reflect, I realize how lucky I am to have people to share in my weaknesses and triumphs with me. As the Swedish proverb says – “shared joy is a double joy; shared sorrow is half a sorrow”.

There are many flavors of POTS and just as many different treatment approaches. What we do have in common though, is the ability to wake up every morning and choose how we are going to face the day. There will be days that are hard – let us accept them and listen to our bodies. There are days that will be good – let us embrace them and give thanks for all our bodies accomplish for us. But, let us always realize that we are strong, we are capable, and we will never quit. For every one thing that we are struggling to do, let us think of three things that can do – and be grateful for these things. Let us feel gratitude for all of the unique experiences that POTS has brought into our lives that we may not have experienced otherwise.

We may not always be able to control our bodies physically, but we can always control our reactions to our setbacks and how we let them affect our lives. In exercising our unending emotional and mental strength, together, we will ALWAYS be greater than POTS. ­

maggieGuest author Maggie Sosinski has been battling POTS since 2014. She is passionate about spreading positivity and supporting those whose lives are affected by POTS and other forms of dysautonomia. She recently re-located to Minnesota where she lives with her husband and works as a nurse.

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