Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hello,
I'm new to this forum but not to lupus. I have had some sort of lupus activity in me for 17 years. I have been coping pretty well until this year. I seem to have been going downhill with my tolerance to UVa/b. this year sunscreen does really help me much like has in years past. I don't get lesions but I am sore, burning skin and my mouth lesions seem to worsen.
I miss going outside. I have an amazing hubby that is trying to do all that he can to support me. Is there anything anyone can tell me that may help me. Do any of you know if night walks is better for UVA/B. I guess I am grieving the light more than anything.
I have another issue. I have a friend at work that seemed to be a good friend. Since this summer with my sun sensitivity. She has been very condisending towards me and ridicules me on my attire (sun hat and sweaters to cover up). I think she doesn't get it. Because I look fine. I don't know how to deal with the situation. Any suggestions would be good.
Thanks for listening (reading)
Jen
I'm new to this forum but not to lupus. I have had some sort of lupus activity in me for 17 years. I have been coping pretty well until this year. I seem to have been going downhill with my tolerance to UVa/b. this year sunscreen does really help me much like has in years past. I don't get lesions but I am sore, burning skin and my mouth lesions seem to worsen.
I miss going outside. I have an amazing hubby that is trying to do all that he can to support me. Is there anything anyone can tell me that may help me. Do any of you know if night walks is better for UVA/B. I guess I am grieving the light more than anything.
I have another issue. I have a friend at work that seemed to be a good friend. Since this summer with my sun sensitivity. She has been very condisending towards me and ridicules me on my attire (sun hat and sweaters to cover up). I think she doesn't get it. Because I look fine. I don't know how to deal with the situation. Any suggestions would be good.
Thanks for listening (reading)
Jen
This is what I said to several people I worked with: "I LOVE hats! It's my trademark." And smile alot. Suddenly you'll see people around you wearing hats too....or at least commenting on your "stylishness".
On the serious side - the rules are: stay out of the sun between the hours of ten and two (central standard time) - 11 and 3 EST. No exceptions...unless there's an emergency.
Sunscreen is a must (I use the sports sunscreen - it's more expensive, but there's no smell and it's perfectly invisible..plus it lasts two hours before you have to reapply.
Some good fashion DO's for suncreen protection can be found at:
www.solumbra.com
www.coolibar.com
Or just buy sports shirts at Walmart or Bass Pro Shops that have sunscreen protection in them. Columbia wear is a good line that's also cheap.
I tell people I'm going for the "Safari look" or the "long flowing romantic look" when I wear my sunscreen stuff. Is it sexxy? Well it's not Chanel, but it works for me....and I think healthy is the sexiest look of all.
http://www.amazon.com/Sun-Guard-Laundry-Treatment-Protectant/dp/B0000Y3F6W