Living Breathless
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Sjӧgren’s in the summertime

Soooo, yeah. Avoiding the sun in the summertime may not work so well for me.

Soooo, yeah. Avoiding the sun in the summertime may not work so well for me.

I have a feeling I’m going to learn something the hard way this summer. (Because the whole eight days in the hospital and lung damage thing wasn’t enough to teach me the first time.) But then this whole autoimmune thing has been a learning curve all winter.

But let me back up a second. I had my first really positive visit with the rheumatologist this week. Yay! Its positive because he said my labs have been looking good, meaning no more inflammation, or at the very least just what any normally functioning person would have in their body. Double yay! He asked me how I’ve been feeling and the answer is GREAT except for this sinus infection that won’t die. But even that only threatened to affect my breathing one day, and I laid the smack down. And by “smack” I mean I took some cough syrup – the good kind with the codeine in it – and went back to bed for the day. Busted that mess right up.

But then Dr. Rheumo said something about staying out of the sun this summer.

I love the sun. I don’t go all bronze beauty in the summer – skin cancer and all that – but I love being outside. That’s part of hiking, camping, etc. Just being in sunshine makes me happy.

The doctor explained that the sun can cause autoimmune conditions to flare. He said, “I’m sorry. I know the hits just keep on coming.” He suggested wearing long sleeves and a floppy hat and staying in the shade if I decide to go out during the heat of the day.

Now. I love my doctor and I trust what he says. But long sleeves + July + Cincinnati =  Cassie turns into a puddle. And I don’t really look good in floppy hats. Tried it once. It was a fail.

So here’s my solution, Sjӧgren’s. I’m going to go outside in the heat of the day. I’m going to ge t some sweat-proof sunscreen, SPF 367, to protect my porcelain skin. I’m going to hike, and camp and scamper around as much as I feel like for as long as my oxygen lasts. And you aren’t going to flare up, mmmmmmmmmmkay?

Any readers out there with Sjӧgren’s or another autoimmune disorder who has tips for surviving the summer sun, please post them in the comments. I’d love to hear what works for you.

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This entry was posted in: Living Breathless

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I’m something you don’t see every day: A person under 80 who walks around with oxygen everywhere she goes. I have Sjogren's Syndrome, an autoimmune disorder which, with the help of my stubborn refusal to go to the doctor, caused some pretty deep damage to my lungs. My lack of breath slowed me down for a while, but I'm back to adventuring - just with Gus, my little oxygen tank, in tow. This year's goal is to complete the 52 Hike Challenge and get myself into a healthier state of being. Join me on my quest to become oxygen free!

2 Comments

  1. I live in a very sunny place at 6,000 feet and I don’t leave home without a hat, sunscreen, glasses and long sleeves and pants. This will be my first summer with an autoimmune and I do have *some* sun protection clothing (UV protection, but light weight). I keep saying I will get more in order to stay protected through the summer months…then I see the price tag for that type of clothing and change my mind! Ugh…so annoying, but the sun does bother me and I’m also on photosensitive meds on top of the autoimmune issue. Good Luck!!

    • Thanks, SandrASS! I know what you mean about the price. I took a look just to see and said no way! I’m hoping using sunsreen will be enough … I guess we’ll find out. This is my first summer post-diagnosis, so I’m expecting a learning curve.

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