Me, Lupus and Life

Oh how I love the sun! That feeling when winter turns to spring, and the sunbeams rain down from the sky and you feel that warmth seep into your skin.  I think many of us in that moment will close our eyes, lift our chins, and drink in that feeling of sun.  I am no different.  However, what follows for me, is a chain reaction of cells that stir up a whole pot of trouble, and I generally end up flat on my back due to the pain and fatigue, and I turn this lovely shade of pink that would be the envy of sun bed users the world over. Do I learn? No of course not.  I still love you sun, even if you don't love me.    There is a little niggle of apprehension as spring takes hold, but who could not feel happy with all the flowers in bloom, the birds all singing, the blue sky, the lighter evenings. Today I had one of those beautiful spring days that make you so happy you could pop.  I think I have been smiling all day.  I woke up with energy and my body...

Apparently Lupus or Systemic Lupus Erythematous (SLE) to give it its real name, takes between 5-7 years to diagnose.  I am only about three years down the line, so I may have a way to go yet.  I haven't had the definitive nod yet, but most doctors I see think I have it, but my blood tests have not yet caught up which is quite a usual problem at the start. I also had a heads up, as I had heard of the disease before.  My mother was diagnosed with it in her mid 40s, and I have a scant memory of her going backwards and forwards to doctors with skin rashes, and joint pain.  Unfortunately I did not have a good relationship with her at this time as she had a better relationship with alcohol.  She has been on my mind recently a lot.  Although I find it difficult to comprehend why she had an addiction to drink, my current health deterioration has given me a good insight into how she felt.  In addition twenty years ago Lupus was more or less a death sentence. ...