Tuesday, April 9, 2013


Today the pain is horrific! It isn't raining. It isn't because the weather is cold. It is partly due to unexpected stress I experienced yesterday. Today I am experiencing a systemic lupus flare that involves horrific pain from the top of my head through every inch of my body. One small instigator - stress - just pushed the button, but the disease started the flare.

My joints are swollen. My hands are swollen. I cannot sit up for long periods of time. I cannot sleep because of the pain. Is it any wonder that my place isn't spotless and clean? Today I am ashamed to invite anyone passed the door because of the dust, unvacuumed floors, unmopped floors, etc. I just don't have the "working body" to do the simple tasks so many take for granted.

If only I could sleep today. How I wish I could close my eyes, drift off into a dream world where no pain existed, where I could walk all around town and enjoy the beauty of all things blooming! How I wish I could sit in the warm inviting sun and not be a victim of more lupus damage. For those who are not familiar with systemic lupus, sunshine causes flares. Those who suffer from this disease can only sit in shaded areas and worship its beauty from afar.

Since Spring has come, the barometric pressure will soon show its ever changing damage. With rain and storms, endless humidity, comes endless beatings on already damaged bodies. Summer humidity causes damage to already scarred lungs from previous bouts of pleurisy. The heat causes just as much pain and suffering as the cold.

The wind is blowing outside. Warm breezes blow through the wind chimes outside my window. Each one brings a memory of the person who gave me the chimes. So warm and loving. 

I walked outside to retrieve my trash can lid before it flew off like a Frisbee. I stood there for a moment wishing I could feel the grass underneath my feet as I did when I was a child. But there is no feeling in my feet anymore because of neuropathy. I miss the grass.  I miss the sun. I miss being pain free.

Today is a bad day - I am in pain. I wish I could unzip my body and slide right out. But as I have done for the past eighteen years, I will endure it and look forward to the day when the pain subsides, the swelling goes down and I feel some relief.

Those are the rare treasured days.  

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