Dysautonomia invaded my life one fraction at a time, leaving broken shards of my life shattered like glass.

Dearest Readers,

October is not only everyone’s favorite month it is also Dysautonomia Awareness. Dysautonomia is not rare, but it is not commonly known. There are an estimated seventy million cases diagnosed in the United States and many more undiagnosed.

Dysautonomia is not rare, but it is not commonly known.

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What Is Dysautonomia?

“Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.” from Dysautonomia International

There is no cure.

My Diagnosis

I was diagnosed with Postural Orthostatic Tachycardia Syndrome five and a half years ago; after many episodes of fainting, memory loss, low sodium counts, EMT calls, doctor’s visits, and stroke-like symptoms.

Dysautonomia invaded my life one fraction at a time, leaving broken shards of my life shattered like glass.

Dysautonomia invaded my life one fraction at a time, leaving broken shards of my life shattered like glass.

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Test after test. And then the day came when I lost the use of my legs and partially my arms. I could no longer stand on my own, bathe or dress. I required constant care.

Being terrified was an understatement. My life as I knew it had derailed without permission. I had gone from a long distance runner to a mere shell of my former self. My quality of life was twenty percent at best.

Beyond The Diagnosis

After multiple trips to Duke Dysautonomia Clinic, trial and error with various medications, and my local neurologist, today my quality of life averages sixty percent, give or take on any given day.

It took two years to get to where I am today. I have come to accept today looks different, and I have learned to adjust my day according to my body’s needs. Each doctor’s visit often brings a new layer and another diagnosis. Early onset Osteoporosis, Ehler’s Danlos Syndrome, and others.

With each new layer, there are further adjustments.

With each new day, I have learned to thrive and not merely survive, in this, My Wilderness Place. Good community, a good dog and my Sweet Man support me.

With each new day, I have learned to thrive and not merely survive, in this, My Wilderness Place.

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I have learned to rely on God, my ever-present Refuge. I am learning in the hard edges of Chronic Disease; I am stronger with Christ’s strength in me.

I am not defined by illness, but by the hope of my salvation. What was meant to take me down has become a place of victory.

“But those who trust in the Lord will renew their strength; they will soar on wings like eagles; they will run and not become weary, they will walk and not faint.” Isaiah 40:31 (CSB)

Gifts of Grace

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I’m blessed to serve you in this place, to share with you the Gifts of Grace as I journey through the wilderness. I picture you across the table, hands wrapped tightly around your cup, sharing life, and laughter, and tears. As I share with you, my daily struggles, I long to hear what yours may be. You can do that by commenting below or reaching out to me here.

PS: My first book, Mornings In The Word is available now. Order your copy today.

A few of my favorite posts:

Holding This Tension: A Balancing Act

Coffee and Reflection: October Edition

Spiritual Retreat: When You Are Desperate For Time Alone With God