31 Days Walking Through Chronic Illness

day five

Send out your light and truth;

let them guide me.

Let them lead me to your holy mountain,

to the place where you live.

There I will go to the alter of God,

to God~the source of all my joy. I will praise you with my harp,

O God, my God! Psalms 43:3&4 NLT

August 9, 2013~Duke Dysautonomia Clinic

Finally, a diagnosis. P.O.T.S.

We sat in a room. Answered a myriad of questions. Gave a list of current medications. Went through the blood pressure drill, the EKG. 

The preliminaries dispensed with, we were left alone to wait.

My quality of life had deteriorated to about twenty percent.

My new specialist, the head doctor of Duke’s Dysautonomia Clinic, walked in.

Her eyes bright and kind with life. Compassionate, with a gentle voice. I knew we were in good hands. The right place.

Breathing a sigh of relief, I waited as she laid out a plan. Her words, firm and concrete.

A plan.

Not a magic pill to fix it all. A bandaid or a grape lollypop.

A plan. A. Plan.

Goals. Medications, how they worked. Sodium and fluid intake. Gatorade. A lot of Gatorade. Building blood volume. Reconditioning. Management. Lifestyle changes. Rest. The ugly, scary of the path this beast may take.

My ears were ringing. Heart pounding. The words, “No cure,” marching ungracious and loud across my mind.

Our goal to bring my quality of life to fifty maybe sixty percent. WHAT?

Her touch firm, eyes piercing my soul…”this is where we are and this is where we hope to go.”

We made the trip home. A stack of prescriptions, a load of Gatorade, a small catalogue of instructions. A direct number to my nurse. I know had a care team.

Barely able to hold up my head, I was in shock. I was frightened. Terrified. My sweet man tucked me into bed.

Our first days home were the beginning of the first hardest days.

Finding the right balance with medications turned frighteningly dangerous, bringing several close calls. To close. Driving my fear and anxiety levels to an all time high.

I could not be left alone. Someone was with me during the day. My man at night.

I was terrified. Exhausted. Broken.

“but whoever listens to me will dwell sure and will be at ease, without dread of disaster.” Proverbs 1:33 (ESV)

“The dread and fear are what so often steal our peace and love us on the edges of our moments exhausted. We meet the scary of life and forget to turn to God and listen and know His peace. We scramble to control, fix, and protect from hard. The imagined fears and worries often break us more than reality.”

Kara Tippets from The Hardest Peace

God met me in this place, the unknown. In the fear, the anxiety, the broken. The wilderness.

I could not fix this.

I could fade away and give up. It would have been so easy.

The daily-ness of this thing was and is not easy.

I laid on my bed, iPad propped up, Bible open, journal spread across the bead.

“Even though the fig tress have no blossoms, and there are no grapes on the vines;

even though the olive crop fails, and fields lie empty and barren;

even though the flocks die in the fields, and the cattle barns are empty,

yet I will rejoice in the Lord! I will be joyful in the God of my salvation!”

Habakuk 3:17&18 (NLT)

I chose joy in the hard. Peace in the hard. I chose to give thanks in the hard.

We continued to look for the gifts, to count them, name them. Praise Him. Thank Him.

I called on every prayer warrior I knew, they delivered.

I chose hope in the unholy hard.

Don’t get me wrong. It. Was. Not. Easy. I had my moments of stomping feet, whining, complaining. Crying out. The days wallowing in self pity.

I fought a battle through fear and anxiety.

But, I was not alone.

The One taking me through the storm, was The One holding me up.

And there, in that place, I began the ascent to the mountaintop.

Gifts of Grace