June 8, 2014

Conception. This blog was conceived out of a month of facebook posts designed to raise awareness about the cruel and mysterious disease called Lupus. It is now so much more.

Conception: A life worth living.

Conception: A new way to live.

Conception: A new way to die.

The whippoorwill woke me with its persistent beckoning this morning.   I could hear the chirpings of newly hatched babies in their nests. The sun flickered over our bed. In that instant, I smiled at the sound and the beauty. I filled my lungs with the first deep breath of the morning and beauty was quickly replaced by the searing pain of the knife between my shoulders. My chest was heavy. Air…there was no air. I attempted to pull myself to sitting and my body refused. Pressing a heel into the wall for leverage, I dragged my self to sitting hoping gravity will expand my lungs. My head pounded and my joints ached. The birds continued to chirp. I closed my eyes seeking strength and diversion. A cardinal cooed for his mate.

A flight of stairs down to the bathroom, one heavy foot after the other. I will not fall. Count the steps. Do not look down I tell myself. The bathroom welcomes me. A cool breeze blows through. I sit on the toilet to catch my breath. A flight of stairs and fifteen steps and I am winded. I inhale the breeze deeply and try my inhaler. Will it make a difference today? I gag on the taste as the medicine as it fills my lungs. I turn the shower on. The steam beckons me. I climb inside, thankful for the wall to lean on. The water hits me like drops of acid stinging my skin. My joints begin to let go. The phoenix begins to rise from the ashes. I stand as long as I can bear the heat. My skin now the same pink of the butterfly mask on my face. None of which should be happening on the dose of steroids I am on.

One more flight down and I am on the main floor. My big dumb lab greats me at full throttle almost taking me off my feet. so much for an animal sensing weakness. But I laugh because how could you not. He is such a mush and he seems to be smiling. I pour my glass of juice and begin the am regimen- twenty two pills, test blood sugar, lovenox injection, insulin injection. My blood sugar is 170. My body’s tell, as in poker. Something is off. A cup of tea and some toast and two more pills..for the nausea the twenty two are already causing. I grab my tea and sit on the back patio. I watch the show before me. The miserable winter has bred a new world of birds..cardinals, blue jays, sparrows, robins, crows flitting around. Life unfurling. Beauty and joy.

A phone call from my first born, I suck a deep breath as he is out of town to attend a graduation and my day is not going to bother him. We chat about his new found penchant for better clothing. I wonder to myself if all those years listening to his fashion minded sisters are rubbing off. Again beauty and joy.

My fourth born bounds through the house quite pissed at the black hole that swallowed his review packet. I smile and somehow have learned by the fourth kid, I did not get involved. I was not the helpful, nor sympathetic mom. Mom’s are never right. Ten minutes later, he is at my side with a solution. And a good morning hug for me. Beauty and joy.

My third born comes home from her night out of town. She and her father engage in conversation. One confused the other more than the other. She then joined me to online grocery shop. Things are always good when Mom is spending money the way she wants. She moves the computer keys so she does not notice “me” and I get a delightful crumb of conversation. Beauty and joy.

Later tonight, my second born returns from a 12 hour work day. She sizes me up and gives me a hug. Has the evening fight with her sister who immediately pilfered her food that she brought home, asked for gas money and shared her day with pictures and stories. Beauty and joy.

My chest still feels as if I have been stabbed, Air..well there will be more tomorrow. My joints ache. My eyes are blurry, my head pounds. But I had a day of beauty and joy. That is what matters. It is not my choice how the disease effects my body but it is my choice to decide how I am going to let that effect me.

 

 

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