Sun protection

Hi Doodlebee, I am extremely sun sensitive. It seems to have a cumulative affect too. Meaning, I have to add up sun exposure from day to day over any few days. I'm less sensitive last and this year . . . but for several years, even a trip down to the mailbox was too much. Sun block does not seem to help my rashes, nor does overcast. I wear long sleeves - long enough to cover my hands - even when I drive. I stand the collar or wear the shirt backward so my neck is easily covered. I use a golf umbrella as much as possible. You can get UV rays even from the reflection of sand and water. Many lupans are not quite that sensitive. And I go in and out of severity. But I have several wide brimmed hats and I am no longer bashful about whipping out that umbrella. Yes it does cause disease activity in many of us. I do find some creative ways to enjoy the outdoors. I hike in a beautiful woods with great overgrowth (but still chose early evening to hike). Hubby created a little campfire area in our backyard and we have the grands over for "campfires" several times each summer. We roast weinies and marshmallows and I've kept it really simple so it doesn't turn into a difficult task. I grab the grands last minute we go to see a sunset and play at the park during this sundown time. They find it a blast and I do it last minute so I'm sure I'm up to it. They love the last minute dash. I also found a great "skin suit" that I wore on our Mexico vacation this year. It covered hands to ankles and worked great while I was in the water . . . but I hid in extreme shade the rest of my outdoor time. Hubby found a great spot of shade on the beach and embellished it with our beach umbrella. Taaa daaaa!!! But in years past, I don't think I could have pulled that off. I hope you find a good way to enjoy your summer!!! Don't let these difficult new rules stop you from enjoying life. Just find the loopholes and work them!!

*Rosie looks down and blushes* Ummmmm I bought it two summers ago and never tried it. LOL I do wear men's fishing shirts. I get them at D I C K ' S sporting goods. They are SPF and really help. I just leave one in the car and one in the house and toss it on over my clothes. Because it is a man's shirt, it covers over my hands. If my hands are exposed, they get a really itchy rash. Good luck with the sun protection!! Blessings!

Hi everyone!

My daughter who is 6 has cutaneous lupus. Thankfully so far she's not extremely sensitive to the sun. She can be out there an hour or so with significant spf 70, a bucket hat and whenever possible, long sleeves.

She's only been diagnosed a year now, which I'm sure like everyone else, has been a very long year for me. I'm always looking for new spf products and new protection.

I've actually come up with a product that may help lupus patients - necessity is the mother of invention right - well, I was buying a bathing suit ($53 I might add) for my daughter that has an spf 50 in it and I was thinking well, how do I know that the spf 50 is enough when she's out there?? Is it good on top of the spf 70 I put on her?  Isn't there a way to tell how bad the sun actually is?? On a cloudy day, is it any better to have her out then?

Then I researched more about UV and found that the uv of the sun at any given time may be low or high depending on so many things! For instance, the time of day, location, weather, etc. To which (sorry the long story) I came up with a bracelet that tells you the severity of the sun's uv and can help you properly protect yourself with the correct sunscreen!

They are called Sunsign Bracelets.  They're white when inside with no uv and turn to light, medium and dark purple depending on the uv intensity of the sun.  This is great for those who are sun sensitive such as those with lupus as well as anyone who is being conscious of the sun!!

I'd love to know if any of you would like to know more about my bracelet. It's really been a great thing with my little girl and knowing more about the sun! I'm working on my website and will have more info to follow.  I was always worried about my daughter and the sun, now I know a little more about how bad or mild it may be outside.

I don't want to sound like I'm a big marketer here - I'm just a mom looking out for my girl and hope that I can help others like me being aware of the sun!

 

Jessie, Make sure you are still careful on overcast days. I've had some pretty big reactions on those does, even from inside the car. I still cover when in the car. Also, the affects of the sun are cumulative. meaning you have to add up your given sun exposure over the last several days. I've also been affected by reflective rays . . . me sitting under an umbrella, but sun reflecting off water or sand and back up to me. Its tricky, but you'll figure it out. I actually feel blessed that I have the rash warning. Some lupans do not have this warning and the damage is affecting organs w/o early symptoms. Lynnwood's post is right . . . Glad you've found a potential tool. Blessings!