Leaving my house these days takes almost as much energy as actually going out. It is pretty complicated due to the fact that I have sun sensitivity issues related to the lupus.
Until last year I didn’t even know that I had any sun issues. I happily would hang out at the beach and never have any issues. But when I was in Kauai with the fam I noticed that my fingers were turning red and blistery. They burned and hurt a bit. I still didn’t relate this to the lupus. When I came back I went to my regular rheumatologist feeling ill with joint pain and fatigue. He visit he took one look at me and said, “You have been in the sun.”. Doh, foiled again by that darned lupus.
Turns out that photosensitivity is a common issue for lupus cases and I am not anything special in that regard.
How does photosensitivity show up in lupus?
- Sunlight can cause new skin lupus lesions (sores).
- Flares of internal lupus disease, including joint pains and fatigue, can also be triggered by sunlight.
- Some medications increase the effects of the sun on a person’s body. People with lupus taking these drugs including tetracycline antibiotics and many others may also very occasionally develop “phototoxic” reactions.
Back to the issue of getting me out of the house in this California sun.
Basically it takes a lot of sunscreen, SPF 50+ (I prefer 70), slathered on every inch of exposed skin. On top of that I try to cover up my arms and legs with t-shirts and pants. Gone are the days of short shorts. I have to remember to cover the tops of my feet if I am wearing shoes without socks. I try to bring a hat. Thankfully for me, San Francisco is pretty kind to this type of dress.
When I am out, I do my best to hide as much as possible from direct sunlight. I seek out shady spots. I try to not go out in peak sunlight hours (10am – 2pm). And I reapply sunscreen often.
I know that when I write this out it sounds like a giant hassle, but it isn’t so bad once you get used to it. My thought is that everyone should probably be wearing sunscreen all the time anyway. I figure that when I am 90 and all of you have skin like a dried out onion, I will still be looking 35 with soft beautiful skin. And then the hassle will all be worth it.
