Walking in the Sun and….

Most lupus patients know they are not to be in the sun.  I am no different.  Sunlight is vital for the survival of humans and other life forms.  How can this wonderful energy source be such a menace to lupus patients?

I was severely sunburned in early 1986 and it exacerbated and precipitated the onset of my lupus.  I was the lucky "unlucky" one.  Lucky that I got a quick diagnosis; unlucky that I had a fulminating systemic involvement of multi-organ slaughter.  My life changed in an instant from a healthy young teacher, wife, runner working 3 jobs to an abrupt halt with a scary future.  I was told that my survival for 5 years was guarded--not exactly comforting, nor reassuring.  That made the saying, "when life gives you lemons, make lemon-aide", so very lame.

The first year of my lupus was full treachery and uncertainty.  Nothing improved and more problems would surface every other month.  However, nothing prepared me for the second year.  Severe chest pain ended up being pericarditis.  During the over a month-long hospital stay my kidneys failed and white count (white blood cell count) plummeted.  Kidney biopsy, bone marrow biopsy, chest X'rays, scans, and the daily 4 a.m. blood draw was my life for over 40 days.  Talk about the valley of the shadow of death--there were  numerous valleys that nearly buried me.

So back to sunlight, why is it a no-no for many lupus patients?  Some theories suggest that the UV radiation in sunlight alter the skin cells microscopically, just enough that the body mistake the "changed" and circulating dead skin cells as enemies to trigger an inflammatory chain reaction.  Naturally the human body fights enemies by launching, among other mechanisms, the inflammatory processes.  Here's the catch in a nutshell: these altered dead skin cells are NOT enemies and the flawed auto-immune inflammatory process is simply destroying healthy body tissues resulting in fever, pain, destroying organs along the way, causing swelling joints and tender soft tissues.  And these lupus complexes ultimately lodge themselves in kidneys and damage the glomeruli (kidney cells responsible for filtering).  You can only imagine the worst!  Few lupus patients are not affected by UV in sunlight.  Their immune systems are sensitive to different stressors.

What do I do when I am walking in natural elements--the sun?  I wear a sunhat, a huge UV guard visor and thanks to Neutrogena's 100 SPF cream on my face and neck, long sleeved shirts, and hand gloves.  I am all bundled up.  There are several lines of UV coated clothing and REI them carries in stores.  I order mine online.  In addition, I start as soon as the sun comes up.  Today was 7:07 a.m.  I need the sunlight to see the pavement.  I walk for about 2-3 hours daily and once a week 4-5 hours.

There are no easy solutions to living and walking with lupus.  Many people take life and nature for granted.  As a lupus patient and suviver, I can do neither.