My Life and Healing from Dysautonomia or Postural Orthostatic Tachycardia Syndrome (POTS)

Twelve Years of Reflections: My Participation in the Invisible Disabilities Association

As the Invisible Disabilities Association (IDA) celebrates another year of awards, it gives me time to reflect.

My participation in the Invisible Disabilities Association (IDA) started as a patient who won the 2011 Perseverance Award.

When I met Wayne Connell, Founder, President and CEO of IDA, I had severe dysautonomia, a traumatic brain injury, was bedridden, and completely unable to stand up without fainting.

Over a decade later, I would be Vice Chair of IDA and regularly meet with the wonderful Board of Directors to advance the cause of those with invisible disabilities.

Above: https://invisibledisabilities.org/about/leadership/board-of-directors/

About IDA

At my worst after the 2005 car accident, I was in injury rehabilitation, unable to say the word, “the”.

What Happened

It started when a lady reached over to pick up Chinese food that fell on the passenger side of the floor. Going 90 mph as her foot hit the gas instead of the brakes, she T-boned into our Expedition’s gas tank at 90 mph. She spun me and my 2-year old daughter in a 360 full circle (she would be 100% fine, now a nursing student), ripping an artery in the back of my neck, banging and centrifuging my brain inside my skull.

I would be disabled and bedridden, looking at the ceiling. For twelve years.

Little did I know that my then-bedridden 2011 meeting with Wayne Connell would eventually lead to my miraculous transformation. God had beautiful plans.

That year, I was selected as the Perseverance Award recipient of the Invisible Disabilities Association. I had gone online with my dysautonomia and made educational videos of my plight, garnering an audience that was also suffering in silence.

At that time, almost no doctors knew what “POTS” was. My mysterious symptoms didn't “fit” into their box, so most of them grew frustrated or thought I was lying. Twenty-four doctors later, finally one knew what dysautonomia was.

Today, patients with Long Covid or post-vaccine injury may have POTS, so almost all doctors know what it is.

Dysautonomia and POTS

Dysautonomia. There are several different dysautonomias, including a genetic, familial type.

The veins in my legs were unable to squeeze - an “automatic” or “autonomic nervous system” (ANS) response you don't have to think about. The ANS was dysfunctional (i.e., dysautonomia) and it also affected other things that you don't have to think about: food digestion, blood pressure control, and urination.

I would get full fast, vomiting daily. Upon standing, my blood pressure was 78/45 mmHg and my heart rate was 130 beats/minute. I couldn't tell when I had to urinate, and I wore adukt diapers.

Because my autonomic nervous system was awry, the insides of my body dictated my life.

POTS

P = Postural. Postural Orthostatic Tachycardia Syndrome (POTS) was so named because when going from laying down to standing (i.e., changing posture), I would get dizzy or orthostatic.

O = Orthostatic. At its worst, the dizziness progressively led to my visual field becoming gray and spotty. If I didn't sit down, I would eventually faint. In the meantime, though, my body tried to compensate for the loss of blood flow to my brain.

T = Tachycardic. Upon standing, there was nothing to stop all my blood from rushing to my feet.

The blood going to my brain would diminish, a condition incompatible with life. In its attempt to perfuse the brain, the only compensation was for my God-given autonomic response to kick in: my heart had to pump faster and faster (i.e., to become tachycardic).

Every single time you stand up, your leg veins squeeze to push the blood back up to your brain so you don't faint. You don't have to think about it.

S = Syndrome. I was afflicted with this condition 24/7.

The Treatment of POTS

To get enough blood to my brain while standing, I had to impose quite a variety of mechanical and pharmaceutical, physiological, and dietary interventions.

Everything was about too much blood to my legs and not enough blood to my brain.

Cold. POTS was better in cold weather, because it makes the veins contract; it was worse in hot weather because it makes them dilate.

Fluids. The more hydrated i was, the more blood stayed in my brain.

Salt. The more salt I ate, the more water I retained. To help, I spent the first years on a salt-retaining steroid.

Compression. Tight leg stockings with tight abdominal pressure (i.e. wearing tight stockings one size too small) forced the blood out of my legs and pushed it up the abdomen, through the liver, and up to my heart and brain.

Blood pressure. I took a drug that pushed my blood pressure up by constricting the veins in my legs (i.e., midodrine).

Fast Forward

I would have a near-death experience, go to the stairway to heaven, and pick up paper and pen. Five books and two medical clinics later, I would be healed.

And I would give back in different ways.

As Vice Chair of the Invisible Disabilities Association, I still help educate and celebrate life by keeping a commitment to volunteer work for those with invisible disabilities.

Thank you for helping me by reading my writings and sharing them. My hope is to inspire by example. God bless you in all that you do!

Stay tuned for more on the Invisible Disabilities Association!

Above:

IDA has an ID Card. And in some states, you can have their symbol included on your driver's license.

The 2023 IDA Awards Banquet: Care In Motion

Above: https://invisibledisabilities.org/seminarsandevents/2023-ida-awards-celebration-care-in-motion/

Above: https://invisibledisabilities.org/national-disability-id/national-disability-id-card/

Thank you for reading my writings.

WHAT I REALLY THINK

As I reflect back on the last fifteen years, I am amazed at what God has done.