Dysautonomia Awareness Month

October is Dysautonomia Awareness Month, and October 25 marks the annual POTS awareness day. Just as no two journeys are identical, the path to a POTS diagnosis is different for each patient. However, as Jayde-Rhiannon and I have discovered, the lengthy road to a diagnosis is usually full of speedbumps and hairpin turns.

A month shy of turning forty, I had a total hysterectomy. It was a necessary evil. While taking care of certain parts of my health, my surgery threw me headfirst into menopause overnight. Menopause really should not be a taboo subject. If it weren't, maybe I would not have been surprised by the alien that took over my body, but that is a subject for another day. Insomnia and hot flashes were the worst and lingering side effects of my body laughing and shouting, "You are no longer in your twenties." However, on the plus side, I was told the migraines I had experienced since I was six should see a drastic improvement. Thankfully, they did. Gone were the two to three debilitating episodes a week. Gradually, I also noticed that my high heart rate and low blood pressure had noticeably improved, along with the dizzy spells, nausea, palpitations, chest pain, and the inability to find words on the tip of my tongue. The fatigue was different. Now, it was insomnia-driven instead of waking after eight hours only to still feel exhausted. It was wonderful!

My hiatus from the confounding symptoms came at the optimal time. Jayde's health had begun going from bad to worse. I needed every ounce of my own health to help her battle everything being thrown at her. Hearing, "Her labs are fine. We can't find anything wrong," was a frustrating Deja Vu moment.

Then, eleven years later, Covid visited our home. Without warning, my unexplainable symptoms returned–they crashed down on me like a giant wave breaking on the shore. After a doctor asked if I was experiencing a laundry list of symptoms, and I responded yes to each, he commented, "You may have heard of this thing called Orthostatic Intolerance or POTS." On the outside I laughed, internally I was remembering.

I thought back to our journey with Jayde. Specifically to the day my head began spinning when a man we had only known for an hour uttered the words, "Your daughter has Postural Orthostatic Tachycardia Syndrome. I know it's a mouthful. We call it POTS." I came to regard Jayde's humble Cardiologist as the Wizard of Oz. However, on that first day, he was the Mad Hatter guiding me to the rabbit hole I quickly spiraled down, searching for any information I could find to understand what was happening to my precious daughter. The understanding was a bittersweet stop on our journey because the more I understood, the more my frustration grew with a medical system that routinely dismisses what they do not understand or cannot see.

Jayde's symptoms noticeably began between the age of two and three. She was fourteen when she was correctly diagnosed. While her diagnosis was a relief, hindsight broke my heart as I replayed the multiple moments I told Jayde, "That's normal. I experienced that all the time when I was younger."

Firsthand, I understood Jayde's palpitations, high heart rate, low blood pressure, chest pains, dizziness, nausea, migraines, intolerance to heat and cold, brain fog, and GI issues. I understood dismissive doctors who did not have an inkling of what was wrong. I understood her angst when she needed to cancel plans. I understood our daughter desperately wanting to be more than an observer in her life, even though her body refused to cooperate time and time again.

Remember that rabbit hole? After her diagnosis, I dedicated the first eighteen months to research. I became a walking medical journal on POTS, I'm sure driving Jackson, and anyone I trusted to listen, crazy. Speaking of trust, it became a scarce commodity when friends and family members began telling me, "Jayde is a good actress." "She is clearly faking it," or "She is pulling the wool over your eyes." With each comment, I inwardly cringed. I remember relaying the remarks to a dear friend during our many hours-long conversations, asking her, "Tell me I am not crazy." She laughed hysterically, responding, "All aboard!!! Of course, you are, but they aren't in your shoes trying to help that beautiful princess. And since when do you care what other people think?!"

While the deprecating comments had taken their toll, a small voice took over after that conversation, drowning out each criticism, reminding me, "You are the best advocate for your child. Trust your gut." In turn, I found my voice and footing with some of the country's top doctors. Eventually, my research aligned with my instincts, confirming we were sitting on top of an iceberg. Below the surface of POTS was a multitude of diagnoses waiting to reveal themselves. The three prominent/debilitating illnesses are Ehlers Danlos Syndrome, Mast Cell Activation Syndrome, and Chronic Fatigue Syndrome. Determined to fight for our girl, I refused to give up or give in to a flawed medical system designed to work against us. Because Jayde observed me tirelessly fight for her, she began fighting for herself.

Learning to play the hand we were dealt has not been an easy battle, but it is necessary to win the war sitting on our doorstep each morning. It is surreal to hear people tell me I am strong or brave. Simply because, many times I am internally falling apart, desperately trying to hold things together and the last thing I consider myself being in that moment is either of those things. What I am is determined. Determined to not quit. Determined that any parent walking this road understands they are not alone. Determined, Jayde will know I believe her, and even when she cannot be a voice for herself, I will be a voice for her. Ultimately, determined to give my daughter the best quality of life possible while obtaining the care she needs and deserves. And finally, I am determined that the next individual need not wait twelve years, or a lifetime, to receive a diagnosis that should only take their doctor fifteen minutes to recognize.