In Sickness and In Health - My Path to POTS

“The wound is the place where the light enters you.” - Rumi

This was going to be it. 2020 was going to be my year. The plans I had were big and bright. This trip around the sun was going to be filled with adventures of growing my non-profit, finishing my birth doula training, getting my business off the ground, paying off remaining debt, and laying the foundation for the simple yet beautiful life I planned for myself. Yet, tonight, I sit here, writing these words, only able to sigh at the reality I find myself living.

It turns out the divinely guided plan for me this year is not so exciting and hopeful as my mind had imagined it would be.

This is the first time I have spoken publicly about my health, mainly due to ego and fear, but someone who loves me reminded me today that this is just another chapter in my story and I can choose to use it for good.

In August of 2019, I received an answer I had been searching for a very long time, since 2009 to be exact.

Why 2009? Well, that was when I experienced what I now know to be a flare up of an autonomic nervous system disorder. April 2009, it was late at night and I was driving back to my college campus near Chicago after pulling a double shift working as a caregiver in the memory care unit of an assisted living facility. I called my friend Meghan because I was not feeling very well. I had been having bouts of lightheadedness off and on for weeks, but this time felt different, it scared me. After a few minutes of speaking with her, I lost consciousness and plowed my little Mustang into a ditch. What happened next is a blur. The first clear memory I have is being in the Emergency Room calling my parents who were in Texas and telling them, “Don’t freak out, but something happened” as soon as they answered the phone. I was 19 years old at the time.

The next ten years were a parade of me facing various illnesses, being a human pin cushion, seeing dozens of specialists, having multiple tests (sometimes very painful tests, here’s looking at you Lumbar Puncture) done, and ultimately never receiving an answer I could accept. I have been given many “idiopathic” diagnoses, meaning they knew what was wrong but they could not figure out why these things were happening.

Then last year happened. On February 17, 2019 I had a very similar experience to that of 2009, except this time I was not only scared, I was terrified. I sat on the side of I-35 in the dead of winter with my windows rolled down, tearing my jacket & shirt off because my body was putting off an exorbitant amount of heat. My heart was racing at over 140 bpm. When I closed my eyes I felt like I was going to pass out, but when I opened them I felt like I was going to throw up. My chest was pounding, my head was spinning, my entire body was burning, and of course my mind was telling me, “This is how it ends…”

While that day did cost me over 4 thousand dollars in medical bills, it obviously didn’t end me. It set me on a quest to get answers, REAL answers, and 6 months later I did. Finally, after 10 years of mystery I met a Cardiologist who took me seriously when I told him something in my body wasn’t functioning properly. He diagnosed me with Postural Orthostatic Tachycardia Syndrome (commonly referred to as POTS.)

Even with the heart medication & lifestyle changes I have made; my symptoms have gotten progressively worse and my body has gotten weaker.

Quite frankly, it sucks.

Things I once enjoyed doing are becoming a distant memory. Something as simple as taking a hot shower has become impossible. Sometimes the most successful thing I accomplish in an entire day is brush my teeth then relocate from my bed to my sofa without passing out. There are days I cannot go to work because my blood pressure is too low to safely walk unassisted, let alone drive. I’m tired all the time, the type of tired that sleep doesn’t fix because I can sleep a lot but find little to no rest in it.

Yesterday I quit my job as a yoga teacher because I physically cannot do it, and that broke my heart.

In 2018, I went through Yoga Teacher Training and for the first time in my life I learned to love my body, cherish it, respect it, nourish it, nurture it, and embrace it. Having had a lifetime of self-image struggles I began loving myself and now that very body I came to love seems to be failing me. Each time I feel angry towards my body I sense it asking me, “How much do you really love me?” and the phrase which I consciously make myself respond with is the same heard in wedding vows, “In sickness and in health.”

Because even with everything happening within my body right now, I still love it. Even if it can never run again or carry a baby or go hiking or take a hot shower, I choose to love it. Why? Because this is the body I was given, for better or for worse, and it is more than just a bucket of skin…it’s the vessel which carries my heart and my soul. Even with its deteriorating spine & daily pain, it is the body which has allowed me to feel joy, peace, contentment, and most of all love.

A tear slid down my face as I typed that last paragraph because it truly is a paradox that the vessel which is bringing so much sorrow and doubt is also responsible for allowing me to experience so much laughter and connection and love.

So, my plan now for 2020 is simple --- I'll give my body all the rest, treatment, physical therapy, IV fluids, salt, medication, and attention it needs so that it can allow me to continue living.

I choose to love this body…in sickness and in health, until death parts us.

If you are dealing with a chronic illness, I encourage you to really look at everything you have gained from being in your body rather than letting the pain & sorrow overtake you. I know how difficult it is, but you deserve to be happy and you are the only one who can make the decision to be.

You may have an illness, but please do not let your illness have you.

(Note: POTS is a disorder of the autonomic nervous system and is still widely a mystery in the medical community as far to what causes it. Me, being me, was not willing to accept another “idiopathic” diagnosis so I began seeking out alternative treatment, therapies, and studies. Through a series of strange events a close friend in Montana came across a clinic here in Texas dedicated to not only treating POTS, but finding the underlying cause of it in each individual patient. In March I will begin treatment at this clinic to continue the journey of finding an answer that satisfies the curiosity of my genetic makeup. If you or someone you love has POTS, send me a message to get details about it!)

©2018 by In Broad Moonlight LLC