Sally Martin

LIFE WITH THE WOLF
Or
Personal Experiences With Systemic Lupus Erythematosus

My Garden

A gentle breeze carries that familiar scent of rebirth. It is spring.
The garden's soil is warm and moist. It beckons me to prepare it and plant for a new season. So I put on my gardening garb, clear out the weeds, scatter seeds and set out colorful annuals amongst the perennials. I stand back and smile at the results.
The wolf must have wandered in through the woods looking for new territory.
On a late spring day I wake up to find I have become a 'Tin Man', stiff and weak. I can't even walk the short distance to my garden. My wrists feel like there are tight bands around them. My joints begin to swell and ache. Then the rashes, fever and fatigue begin.
What's happening? I ask the doctors. It seems that the wolf has settled in.
Summer arrives. I gaze out the window. My garden is now a state of wildness, tangled with weeds, the petunias struggling to peak through the twisted vines.
My garden and I seem to be on parallel paths.
My garden's path reflects my state of health.

The Sun

I miss the sun.
Not that I was ever a sun worshipper but I miss holding up my face to feel the warm rays. I miss being able to walk in my back yard lightly clad to watch the sun dance among the tree leaves. I miss sitting in the grass, listening to the bees and watching the grasshoppers hop to wherever grasshoppers hop to. I wonder why my body has betrayed me. Even Sol, the source of life, imperils my health. Why did the wolf settle in?
But don't let me mislead you; I do not exist in a cave. I do go outside after lotioning up with sun screen, donning sun glasses, wearing a wide-brimmed hat, with my long sleeved shirt, pants, socks and shoes.
With this armor I am ready to dodge the wolf.

Fatigue

The sun comes up.
I get out of bed, walk down the stairs, feed the cats and dog, find a chair and sit.
It's not like feeling tired.
It is all consuming. It engulfs my being both physically and mentally.
I am unable to move, frozen in the chair. There is no energy in my body to initiate movement. So I sit.
My mind becomes a blank slate. My eyes close, I become unaware of my surroundings. When I rouse, I don't even try to rationalize why the dirty dishes are left on the counter.
There is no energy to care.
The wolf must have run hard last night.

Pain

On a scale of 1 to 10, I slide up and down. I've never claimed a 10. How could I possibly know if it is the worst pain I am going to experience?
I do give a 9 to the time I stood at the top of the stairs for three hours trying to get the courage to bear the pain of bending my hips, knees and ankles to move from step to step.
I give a 7 to the days that my finger joints and wrists are fiery red and so swollen I am unable to close my hands or turn a door knob.
I give a 3 to a 5 to those days that I wake up stiff and my hips, knees and ankles never loosen up. I'm acutely aware of each step I take all day long.
I give a 1 to a 3 on those days that a single joint or my hands are stiff and achy but the pain eases up in a couple of hours. I can't remember a day below a 1.
Pain is the foot prints of the wolf.

Hope

I was actually a healthy person once, although, it is becoming harder to remember that free and easy feeling of wellness. But I have hope.
Hope is the belief I have that I can outwit the wolf. My hope is not necessarily based on reality or medical science but it is a sense deeply rooted in my being. Maybe it's my spirit.
So I hope that I can:

	Feel well again
	Get up each morning with enough energy to get through the day
	Move without pain
	Regain normal kidney function 
	Witness the wolf leaving my territory.

Prednisone

They call it a double-edged sword. When I'm having a flare it's oh so sweet. I eagerly grab the bottle of those little white pills and swallow those extra milligrams.
Almost immediately I can sense the wolf retreating.
But I can also sense the accelerated aging of my body as I enjoy this relief. My bones are becoming brittle, my arteries hardening, my skin is thinning, and my muscles weakening. My whole body knows something is askew.
Weaning from the higher dose is not much fun. It's difficult to count one less pill each day knowing that the wolf will try to return. But I look at my tissue paper skin and do it.

My Daughter

She has never known me when I was well. When she was four she offered to teach me how to run. She told me "It's easy Mom, I'll show you how”. Now she is older and knows why I can't run. She is loving and concerned. But what unspoken thoughts and feelings does she have? My guess is:

	Some embarrassment having a Mom with visible physical disabilities.
	Some resentment when she has to alter her plans because of my illness.
	Some annoyance when listening to my aches and pains.
	Some guilt when she prefers to be at a friend's house rather than home.
	Some dread that I might die before we are ready to deal with that.
	Some fear that the wolf could visit her.

Theories

Everyone has a theory.
My mother: It was the chicken pox when you were four. The Doctor said he had never seen such a severe case.
My husband: It's hormones.
My daughter: You work and worry too much.
My friend: It's something in the spring air.
Me: Exposure to insecticide as I played in the orchard while the spray rake spewed poison on everything in its path.
The wolf: Be serious, the wolf will never tell.

Sally Martin has never previously published any poetry or essays. She wrote this essay during a serious episode of lupus nephritis. Despite some disabilities resulting from Lupus and Multiple Sclerosis, she continues to work as a Registered Nurse in an administrative position at the Veterans Administration Medical Center in Canandaigua, New York. She has worked as a Registered Nurse for 38 years, primarily in the field of Geriatrics.