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  1. #1
    Join Date
    May 2005
    middle IN
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    Default Sunlight Questions

    Hello All,

    Ok I know the sun is really bad and I have had a really bad reaction to it already, but I have a five year old who is dying to go to an amusement park and fishing. Papa can handle the fishing but what do you do when you need to do something outside? I saw and ad for SPF clothes? Do those helpl for the cost they should :lol: I have a friend who is goind with us so I can take breaks. I have to line up helpers to go on all of our outings now so I can rest and he can play with them. I am also an avid gardener and want to be out some but am scared because I had symptoms like a heat stroke or heat exhaustion already this year and feel horrible after being out. I did buy a great big floppy hat that my friends teast me about. They tell me I should be at hat day at the derby...If I have to wear one I wanted to love it. Target has some great ones. Anyway any suggestions would be great. I have a very outdoor center family and am feeling left out.

  2. #2
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Victorville, California
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    Hello :lol:
    Well, for us lupies, floppy hats - sunscreens - lightweight long sleeve clothing and bottled water are our constant companions during the summer!!
    I wear sunscreen with a minimum of SPF 35...I wear my floppy hat everywhere (I have them in all colors..they have become my signature)I wear makeup with sunscreen..I sunscreen my feet if I am wearing sandals....I keep my sunglasses on....I always wear a lightweight cotton or linen shirt over my clothing to keep my arms covered. Shorts are a thing of the past...cotton or linen pants or long flowing skirts. I keep myself hydrated by always having a bottle of water with me and sipping on it constantly! I have heard good things about the UV clothing, but I understand that they are rather expensive and we can get the same affects with our own clothing and sunscreen!!
    Yes, it is advisable to take along a friend who can hold your place in lines and give you a bit of a break. You need not forgoe your summer activities, just make a few minor changes so that you can enjoy your time with your son.
    Go Out And Have Fun...I think we all look very vogue"ish" with our lupus clothing in the summer!!!
    Best Of Luck

  3. #3
    Join Date
    Jul 2005
    South Bend, Indiana
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    This has been my biggest issue, at least, for my morale. I also have amusement park age kids(14,11,5). I bought a jacket froourselm Solumbra. Yes, they are worth it. My favorite is the cycling jacket, because it is long and has pockets in the back, ideal for 'stuff'. the hat from Target will not protect you from the sun. I had to save up for the jacket and the hat, but it is well worth it. You need to protect yourself from both UVA and UVB rays.

    As far as sunscreen is concerned, you need a suncsreen with the ingredient Mexoryl. This is not readily available in the United States. There are some pharmacies that carry it but they are legally not allowed to advertise. You have to ask the phamrmacist. This has not been approved by the FDA but has been available in Europe for many, many years and is very safe. I am lucky to have a way to get this. It doesn't smell either which is a big advantage for me. You can also get this on ebay. There are two, Vichy and La Roche Posay.

    Stay out of the sun, your children will understand.

    Good Luck

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