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. 

And She Walks with Me and She Talks with Me………...

Talking to myself is what I like most about walking by myself.  I find myself mumbling under my breath during most of the walk.  It is like cleaning my brain out while I walk.  Sorting out my life, straightening all the emotional closets and drawers and clearing the clutter in my brain while walking is amazing!  I don't talk out loud but the voice is clear in my head.  I am marveled as to how organized my life becomes after a long walk--about one and a half hours minimum.

We live such a fast-paced life that opportunities like these are hard to come by.  So I get up early to carve out a special time for walking.  After a long walk my mind is focused and sharp.  I am much more relaxed and organized.  It reminds me of my good old days of running.  I see things more clearly and purely.  My priorities more keen, my energy re-centered and a calmness comes over me.  A sense of accomplishment with fatigue is a great feeling!

I also have more clarity and understanding of my current life (public, personal, and private) and the lives of people around me.  I guess some might call it self-shrinking.  It feels as though I have someone to walk with and talk with from the inside; all in semi-silence for the 2 hours that I am on the pavement, although a good part of the time I do focus on the pain and on how to get rid of it.

Conflicts do find their way out the door in my head and I am more peaceful.  People consider it a form of meditation and I name it "Walking Meditation".  Give it a try and stick with it and soon enough you will experience what I am talking about.  It is difficult to understand unless you are engaged in it.

Be patient, I will get to the lupus part soon, I promise!!!  Be well!

Walking Heals

One of the many benefits when I walk with a friend, in this case, a neighbor, is that our friendship deepens.  There is nothing to do but talk while we walk.  Inevitably we talk about ourselves, our families, and our pet-peeves.  Profound healing comes from Talk Therapy, and in this case, it's all free.

Talking and walking with a caring friend clears the cob webs in my brain and my heart.  Humor is mixed with all the "what if's", exaggerations of everyday life situations bring on a good dose of laughter--that has tremendous healing power.

Sharing my thoughts of my future and what I might want to venture into with a friend as a sounding board validates "me" as a human with a heart and a brain. There are no down sides to walking with a friend.

This coming Saturday, unlike last Saturday, we have already planned our route.  It will be exactly 16 miles and I am going to wear my Sketchers this time.  Someday soon I will walk to talk about more on my lupus and share some of my past as well.  Stay tuned!

I started to walk

I have had lupus for 27 years. Several months ago FDA pulled the only pain medication I can tolerate. I was in despair and in pain. A month ago I decided to fight pain with pain. I hit the pavement WALKING.

I walk everyday and once a week I put in a long one. The walking pain was so domineering in the beginning that I literally cried myself to sleep every night. Now, I think I am winning. Last Saturday I walked 5 hours straight, accounting for 16.5 miles. Yesterday another 2 miles. It has been raining all day today so I am sitting in but tomorrow at 6 am I will be out there again for about 2 hours. As long as I walk, the endorphins are taking care of the sharp pain and I can live with the dull ache.

Lupus is a hideous illness and I have so many joints replaced that running is not an option.  I was a runner when I was much younger and was a bit addicted to it.  I guess I am getting addicted to walking as well!!


Whatever your reason it is to put one foot in front of another, continue to do so because your muscles and your bones will hold you up for many more years to come.  You will thank yourself profusely for taking good care of yourself.