Thursday, September 22, 2011

Former Sun Worshiper

I used to be a sun worshiper floating around on a raft in the swimming pool for hours at a time perfecting my tan.  Oh yes I did!  That was back in my teens and well into my 20s *ahem*the*1970s*and*80s*.  I sort of knew better but a tan was a tan and I wanted one.

In my early 30s, each year, I spent the week between Christmas and New Years relaxing on the beach in Maui-- soaking up the rays and sleeping 20 out of 24 hours, waking only long enough to eat meals and rollover when my then boyfriend, now husband, would nudge me.  I wasn't sure why I was so exhausted all the time but I assumed vacations were for resting and didn't give it a second thought.

Then I was diagnosed with lupus and the you know what hit the fan.  No more sun and no more suntan for this girl-- Well almost.  First I spent a few years in denial and continued to tempt fate by spending way to much time in the sun-- my skin unprotected.

The sun's UVA and UVB rays can kick-start auto-immune responses in people with lupus causing a butterfly-shaped rash across the nose and cheeks or trigger lupus flairs including joint pain and fatigue.  Of course, being the smarty pants that I was, I ignored the importance of good sun sense and continued to tan.... until I got that nasty rash.  Then, I learned my lesson big time and have the remaining facial discoloration to prove it.

The first time I got slammed with the rash was after a week-long gardening project in the glorious California sun.  The red rash across my face was definitely lupus related and there was little I could do at the time but ride it out and reverse the err of my ways in the future.  The remaining results of my foolishness are half inch wide, half moon shaped, brown patches on my cheeks that some 15 years later are still present.

I see a cosmetic dermatologist on a regular basis to try to diminish the brown spots but typical "laser peels" aren't an option because of my lupus.  Bleaching creams have helped somewhat but still, the brown patches remain.

Today, I follow my doc's orders and slather myself in sunscreen-- He actually recommends the cost-effective, over the counter, Neutrogena SPF 85 which, if I let it absorb for a full 15 minutes, doesn't leave me feeling like a giant grease ball.  My second choice is the more expensive Lancome's Bienfait UV SPF 50+ for the face which is fabulous under make-up.

And I put sunscreen on usually twice a day-- On my face, neck and arms-- any area that's not covered and could see the light of day.  I generally always wear long sleeves and pants or skirts but I'm mindful that when I pull my sleeves up, even when I'm driving, the sun can get to me so I either pull the sleeves back down or apply more sunscreen.

Then there's the gigantic hat collection--  The brims on my hats-- not the actual number of hats.  They're all the size of a circus tent.  Seriously, you could spot me a mile away wearing one, but I'm bound and determined to never get a sun induced rash again or expose my brown patches to the harmful rays-- because the sun will make them darker and who wants that!

As I type this post, I'm sitting at a lovely resort in Palm Springs, California.  It's a blazing 108 degrees out.  Covered in sunscreen, wrapped in a towel, and wearing long yoga pants and a long-sleeved cotton blouse, my hat helps protects me from any possible glimpse of sun that might peak through the shade tree I'm under. 

The pool waiter has brought me about three gallons of ice water today to help me stay cool and more than a few people have given me funny looks.  I'm used to it.  This is not my first rodeo-- and not my first time in the desert-- or a beach-- sporting event-- outdoor flea market-- farmer's market-- or county fair for that matter.  I love being outside in the sun.  Sure being covered from head to toe is H.O.T. (and a little odd looking) but hiding inside and missing all of the fun is, well, not fun at all.

Have you had problems with the sun in dealing with your lupus?

Until next time...
Cheers, Joanna J. aka Lemon-Aid
photo credit: © Julydfg -


  1. When I initially started out my doctors believed I had lupus straight up. BUT, now they believe I have RA, PA, Mixed Connective Tissue Disease and ????Probable lupus. So, suffice to say to the brim I keep my skin well taken care of. As with Lupus PA (Psoriatic Arthritis) must also be treated with kid gloves in the sun. No matter what auto-immune disorder people have, the sun doesn't seem to be our friend. NO WONDER most of us are VitD deficient or in my case, don't register.

    Good for you bringing attention to this issue.

  2. Just like you, I think I keep the sunscreen manufacturers in business. I also take advantage of SPF-treated clothing from Coolibar. They have great lightweight tops, skirts and slacks that help keep the UV rays out and the cool air flowing. I refuse to walk around with an umbrella ... so far.