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lovebuda
09-17-2007, 02:05 PM
Ok so finally after years of living in the poor house I was finally able to afford a UV Umbrella. But i don't feel that it's working. I wear clothing from neck to feet, a hat, sunscreen, my umbrella and a hand held fan to keep me cool....and yet I still feel as crappy as I do when I'm in my shorty shorts, tank top and flops with no sunscreen. Does anyone have any secrets of the sun that I should know about, or am I destined to stay inside FOREVER!? I've tried everything I know of to protect me from the sun and nothing seems to be working. I can't even check my mail.......does anyone hate Lupus as much as I do. I need to get a punching bag that says "my name is Lupus" and beat it up. Perhaps that will make me feel better. I'm so tired of being tired.

Oluwa
09-17-2007, 09:56 PM
I wouldn't mind having a scrap with Lupus too, Lovebuda.

Maybe we need to buy one of those Weeble Inflatable kids toy. "Weebles wobble but they don't fall down." And draw the face of what we think Lupus would look like and give it a one, two followed by a left hook.

I have no sun secrets...ugh. I try to go out after 4PM only. I wear total surround eye cover. Like medical sunglasses that cover somewhat like snorkel goggles without the nose piece or snorkel. Top, front, bottom and sides..shielding out all sunlight and white clothing. Usually a white cotton tank and a white cotton cover shirt.

Maybe you are in the midst of a waning flare. When total remission comes things may change. And sometimes it may change without a remission since Lupus is so unpredictable.

Hope soon the only shadow you will see is your own and not hiding under a tree's.

Be well,
Oluwa

lovebuda
09-18-2007, 06:54 AM
That sounds like a good idea but I think I might hurt the poor weeble LOL.

I try to wear white or light colored clothing. I don't think I'm in the middle of a flair I think I AM a flair. I haven't had a good remission in 8 years. I'll have maybe one or two days here and there that are fine and great but the rest of the time is crap. I think i'll move to Alaska for the 6 months of darkness LOL. Thanks for the comment and I hope you are doing ok as well.

hatlady
09-18-2007, 03:27 PM
Wow, that's rough. I agree, I feel better on heavily cloudy days, or when I'm not in the sun at all. But you're severely sun sensitive, I think!

I can't offer any additional suggestions - other than what you've tried. I like the weeble - sometimes getting that anger out is really a help! Beating up something that won't break and won't have hurt bodies or feelings - wonderful!

But am sending some gentle hugs ~

tintin28
12-29-2007, 02:01 PM
I too get dizzy and rashy with the smallest sun exposure--but I am still in a flare so that could explain it. I live pretty much in the dark--the days are long at this time of the year--6 am to 9 pm with the UV extending an hour either way.

I was just wondering about the use of bright colored clothing--sometimes I find wearing white clothes actually reflect more sun onto my face (like when I had to lift my arm to look at the watch). Would dark colored clothing be better? I remember people say dark curtains absorb more UV--so I am guessing the same applies for clothing?

Faith
12-29-2007, 11:17 PM
Hello Tintin28,

Darker colors are better. In fact, anything made out of nylon and/or polyester is uv protectant. There is also a website, Coolibar, that has uv protectant clothing (they are having a sale). I totally understand how you feel, I started purchasing a blouse at a time and I really swear by the clothesline.

I hope this has helped.

Take care,

Faith

tintin28
12-30-2007, 03:30 AM
Hi Faith,

Wonderful~! After reading your post I dug through my garbage to find the packaging for my curtains--and lucky for me, they are made out of polyester (yay~!). I suspect the acrylic backing must do SOMETHING too.

browneyedgirl53
12-31-2007, 07:50 PM
Hi Lovebuda,

Everyone's had great advice to share. It is frustrating isn't it. I pick up my mail in the early evening before it's completely dark; like you the slightest amount of sun makes my skin burn. I forget the name of the sunscreen that I've used but you can only get it through prescription and it does seem to help me in summer months.

I always, always, always wear a hat, sunglasses and gloves. So, I've chosen to have fun and express my personality in the different hats I wear, and wild sunglasses when I feel like being punky...after all, we do have the choice how we live with this disease...there's nothing that says we can't be creative while we're living through it (smile).

I wish you the best, it's not an easy way to live...but you have the right to live it in the most expressive way you can.

Much love,
Browneyedgirl