The biggest trouble that I am having right now with it going into summer
is the sun, I have used all kind of sunscreen and nothing works. I just
can't be out in the sun at all. And that is very hard for me. If I stay
out too long even with the sun screen on I get red sore and sick with a
fever and sleep.

Okay, first, what is the SPF rating on the sunblock you're using?
It should be as high as possible.  Also, apply it thirty minutes before
you get in the sun; it takes that long for the lotion to soak into the
skin and take effect.  Wear a hat and gloves, of course.

Note that most sunblocks are designed to allow some UV-A light
through, to let the wearer get a tan.  There's a compound called
Mexoryl, which absorbs 100% of UV-A, but it isn't supposed to
be available in the USA.  Fortunately you can look for it on e-bay.

As for clothing, it all allows some UV light to pass.  Some fabrics absorb
light better than others; denim has an SPF of about 40, while cotton
is around 10, I think.  One nice thing is that two layers of clothing are
much effective than one layer--a denim coat over a cotton shirt would
have an SPF of 10 x 40 = 400, giving your arms and torso that much
protection.  You can increase clothing's SPF by using Rit Sungard,
which is a colorless dye that absorbs UV light.

There are companies that sell clothing which is designed to absorb
UV.  One company is Sun Precautions, and their site is at

http://www.sunprecautions.com

They're kidding when they say their stuff is fashionable, but it's
comfortable and effective.  Their line includes gloves, hats, masks,
and drapes.  I use it.  When I go out I look like I'm dressed to
handle toxic wastes, but it helps.

The sun gets to me so bad that when the sun is out I have to shut up
everything in the house so that the sun doesn't come in. So here I am
sitting here in the dark and not seeing the summer and the pretty
flowers.

You can get UV-filtering window films.  There's at least one online
site which sells them:

http://www.northsolarscreen.com/html/fluorescent.shtml

and you can look in the Yellow Pages under "Windows."
A local shop should be able to supply filters.  Bear in mind that
these filters are plastic, and will wear out after a year or so.
(UV is hard on plastic; the plastic absorbs it, and that energy
slowly cooks the plastic).

You can check auto-supply stores for UV films that go over
car windows; I think you have to ask your state's DMV if
there are regulations for their use (some of them obscure the
driver's vision.  That's a hazard everywhere but here in Utah,
where nobody watches where they drive anyway).

I also have a lot of trouble with just the lights on in the house. When
we sit down to eat we have a ceiling light that is on and by the time I
am done eating the top of my head is sore and red. So now I have to wear
a hat to sit down to eat.

Are they fluorescent lights?  If so, you can either replace them with
real, normal, incandescent lights, or you can get filters which fit over
fluorescent tubes (see the above site).

Fluorescent lights are everywhere these days (street lamps, stores,
everywhere).  A TV screen is fluorescent.  So are most computer
monitors, unless you have an LCD display.

--Bill Thompson

Forgot--here's another useful site:

http://www.ghg.net/schwerpt/ASLFAQ/triggers.htm

--Bill Thompson

Hi Linda and welcome..... most of us lupies here in this group are photosensitive and that means not only to the sun but also to the fluorescent lighting in the stores and of course the malls; and upon saying that I agree that yes it can hinder your lifestyle considerably..... insofar as you shouldn't go out between 10 am and 4pm or even later....
Personally I wait till the sun lowers behind our hills here and then I go out in our boat to go prawning or fishing or for my walks to our mailbox or to drive down to the rocky swimming bay where the sun has heated the big flat rocks all day long and I get their warmth in the evening along with the sunwarmed water that i swim in....
as far as the malls go? well I just don't go lol!
I have a very supportive husband who loves to do the shopping and now that we are retired he has the time to go... so why not let him have the 'pleasure' of groceries and sundry as I had it during the years our 2 kids, now adults of 29 and 31, were growing up and up until the retirement several years ago of my husband.... we took early retirement which has worked wonderfully and we are settled in our home in the location we had aimed for during the working years and as we planned our house is situated so that I have shade on my deck off my big kitchen overlooking the ocean all day pretty much (it just gets the early morning sunrise which I am usually sleeping through <g>)
and in the house we are sheltered at our windows with awning and/or blinds and at times the eaves alone do the job of blocking the sun rays
so I am safe inside completely and have visual access to my gardens and yard as well as am able to go out back onto the lawn with my 2 cats as it has shade for most of the afternoon and I take advantage of those sun free hours...
I have a bench swing on the deck and just sit out there breathing in the ocean breeze and listening to all our birds as they come to feed at the seeder, suets and nectar for the hummingbirds. a real pleasure retreat! I am very sensitive and don't take any chances at all because of just how sick I get from the slightest encounter with the sun! It just isn't worth it to me to attempt to outwit that big ball of fire!!
... we don't have to be adversely affected by the fact that we are in fact 'allergic to the sun'.... it is what we make it and I choose to take advantage of the times that the sun is not there in my face and I just don't go out in the car or our boat, during the day for a good part of the year; exceptions being that possible doctor appointments require it and then I put on my sunblock of 50 and a sunhat with a floppy brim as well as I always wearing long sleeves and I live in jeans and sneakers so I keep well covered!
Good luck to you and here is my site with our newsgroup map which shows where we all live (all us asl members and other site visitors and friends)
.... just click here: http://clik.to/lupus and on the right frame you will see a map that you click on to post your location and message.... just click on 'list' once it is open and you can read the other messages and locations of all the members here at asl lupus support......... anyhow, do feel free to ask any questions as we all have lots to say and can probably give you lots of information even if not answering your medical questions as directly as the doctors can.... though I do think we all do pretty well in that regard too... amazing how much we all learn from each other and from the info online that is often posted here too....so Welcome!!  
hugs from Shelagh
http://clik.to/lupus

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Thanks for the introduction, Linda.
My firend lives tucked away from the sun and has for years, so I know what
you're talking about.
She does have trouble with lights in stores, such as Walmart.
It must be hard if the light above you affects your head.
The FAQ mentions "# Fluorescent lighting (a common complaint among
photosensitive patients is the uncovered fluorescent lighting in large
discount stores)
# Halogen lamps
I don't think I have Lupus, but I do have halogen lamps in this room.
There's 3 on a strip and I point each in different directions towards a
wall. That keeps the room bright but not straight down at anyone.  My
other lights all have shades.  If your light is a dangly one, maybe it can
be shortened (to be higher up)?
Or put a dimmer on it, and have a 3-bulb light on the wall, pointing
towards the ceiling?
All kinds of ideas, I'd have to be there, which I'm not.
Talk to your husband.
Hugs
J