Lupus and the Sun

Every once in a while I like to blog about lupus so I can vent and educate. Today's topic the sun, so I can vent. The American College of Rheumatology loosely defines photosensitivity as "a skin rash as a result of unusual reaction to sunlight." Oh joy, what does that mean in real life, in the life of Jenn? It means that every day is a sunblock day, even on those days that look deary, the sun still shines through. (I use Neutrogena® 100+ SPF with helioplex broad spectrum uva-uvb protection, #1 dermoatologist recommended, fast absorbing, waterproof suncare! LOL! Well, it's what I really use, everyday!) It means, for me at least, that I sit on the deck by our swimming pool under an umbrella with my legs covered with a towel just in case. It means that today my ankles and feet must have been sticking out of the bottom of the towel in the sun because I got 5 hives (total) on both of my feet, and that just makes me mad! It means you go to the beach with a long sleeve shirt, shorts (if you dare), a hat, and an umbrella and watch gazillions of sun-worshipers lay out in the sun while people wonder why you're dressed for an autumn hay ride. Oh, and forget about going "green" with energy-efficient fluorescent light bulbs because it has the same effect as the sun. Darn, and I was hoping to save $35 a year on the "green" plan.
I CAN wear short sleeved shirts and shorts and the sunlight can touch me without killing me. If I know that no shade will be available or if I will be in the sun for LONG periods of time I have to be extra careful about the time of day, the clothes I wear, and how long it's been since I last applied sunscreen. In the past I have had to miss pioneer trek youth conferences because of sun issues, and I have yet to convince Bill that a cruise to the caribbean is a fantastic idea. Mercy!
About half to three-quarters of people with lupus have photosensitivity, and it really stinks. Ahhhhh, I remember the good ol' days of tanning beds and trips to exotic, sunny locations. Oh well, everyone has something to worry about and inconvenience their day-to-day routine. This just happens to be one of mine. But next time you're out in the sun enjoying a day of swimming, walking, laying out, gardening, playing sports or whatever just remember it's a blessing and someone somewhere wishes to be just like you, out in the sun without thinking about it! Oh and by the way, if you happen to get a glimpse of my "white" legs, get use to it, they are gonna be that way for a LONG time!
(Photo from www.nasa.gov taken by Hinode’s Solar Optical Telescope on Nov. 11, 2006. Just incase you wanted to know!)