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Riosmama

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 #1 
Long story....... Sort of Short,

I have had lupus for 13 years, have had sun sensitivity for most. I have been on plaqunil for the entire 13 years, but 2 years ago took the kids to Disney, over did it in the sun, ended up with blistering rash all over my arms & legs & face, not to mention flu like symptoms for about 3 weeks. NOW it seems like every time I am in the sun for ANY period of time, the flu like symptoms hit, and my skin is irritated. And to add to the fun, lately I have been having the same symptoms at the end of my work shift. I work under drop ceilings with fluorescent lighting. (I know, I know, being at work is making me sick, hahaha) but really, could being at work REALLY be making me this sick? It's never been a problem, I love my job and only have to work 2 days a week, but these sensitivities being so acute are becoming a problem. Anyone else have similar symptoms?
Robinj

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 #2 
Are you diligent about sunscreen, long sleeves, hats, etc?
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Cakelady

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 #3 
You have to be diligent with the sun screen and the long sleeves even when indoors. When I am in the heat I will end up throwing up for most of the night. I hardly leave the house because I know I will be down for a couple of days.

Having said all that you do have kids and you do need to work. I worked for years but there were certain things that I did. I had my own office with a window but where my office was I did not get direct sunlight so I kept my office light off. The temp in my office was alway at 68 degrees not to hot or cold.

We go to Disneyworld ju abou every other year and we do little mini vacations (weekend getaways) now that our kids are older. Here is what I do and it has worked well for other people on the forum.

Always wear sunscreen even on an airplane

Always allow yourself a rest period once you arrive. Once we get to our destination the family knows get me food and my meds. I usually spend the next day or two sleeping

Always wear sun screen or a hat or long sleeves or all three. Even on cloudy days the sun and its powerful rays will get you.

You don't have to give up doing the things you love or going places you just have to do them smarter and you have to think about everything first.

Always have a plan A, B and C frotunally my dad taught me that unfortunately for him he was a little intoxicated and he told us this when we were teenagers and it was story on how he used to sneak out of the house and not get caught. Not something you should be telling your teenage daughter's. :)

Also if you wear foundation make sure it has SPF in it.

Also there is a laundry soap you can buy to wash your cloths in to give you extra protection

It's unfortunate that sometimes once you have had a really bad reaction to the sun you will even be more sun sensitive. You will have to try and find a way to live with it

Good luck

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Riosmama

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 #4 
Gotta love Lupus, never a dull moment. I do wear sunscreen when we plan on being out, but I have never needed it indoors before. Guess I will be switching from bath and body works to something more safe. My foundation has always had sunscreen which I love. I have been wearing a wig now for a few years due to my real hair falling out, and it has reduced my headaches and sensitivity on my head, but I never imagined that the fluorescent light would give me these flu like symptoms. It's crazy!! It makes me feel crazy! I literally feel like I am constantly battling infections. Thanks for the advice๐Ÿ˜Š๐Ÿ˜Š.
Oh on a side note..........I just learned that if your eye doc prescribes tint for your cars to protect from sun, that you can also have your windshield done as well. HUGE help, especially here in AZ. BUT you have to keep prescription with the registration in case you are pulled over. Don't know if this will help anyone else.

Again thanks for the advice! ๐Ÿ˜š
Robinj

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 #5 
I have a script for my tint as well. I use small lamps  in my office as the overhead lights have always caused issues for me. I use high SPF daily, especially on my hands as they tend to break out if forgotten.
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
taffylinden

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 #6 
Does tinting the windshield make it slightly harder to see on cloudy days? With my vision issues, both too little and too much light are problematic. . My eye docs tell me to wear sunglasses with UVA protection even on cloudy days, but even the lighter ones make things too dark when I'm driving. If my car windshield were tinted, I could forgo them.

Also, are tinted windshields really expensive?
Robinj

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 #7 
I had my Accord done for under 200.00. I think the tint is harder at night but I don't really drive very often at night anyway. I don't notice much difference on cloudy days...
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
Riosmama

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 #8 
My windows are tinted very dark now and I love it, however, we live in AZ, so it is usually always sunny here. Driving at night can be difficult with the tint. Especially in rural areas where there are few streetlights. It is definitely a safety issue if you can't see. I am lucky enough to still have relatively good vision. But even at night I have trouble seeing out the windows. There have been many times I have rolled the windows down. Obviously the windshield is not this dark tho.
taffylinden

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 #9 
Too bad they can't make windows from the same material as Transitions lenses so the windows would darken in the sunshine, lighten in the dark!

My other concern with tinted windows is law enforcement. When I was a kid, a family friend who was a cop was shot by a motorist during a routine traffic stop, so I've always been pretty sensitive to the trepidation many cops have when they approach a vehicle. That's why I never reach into my glove compartment for registration until I've asked the officer  I weigh the unlikely possibility I'll get stopped versus the likely probability I'll get sick from the sun and the answer is obvious, but still...a little twinge of concern. 
Robinj

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 #10 
The legal limit is much lower here in Maine than in warmer states, mine is a higher tint due to my prescription. You need to check with your Dept of MV to see if you need to file the script or just make sure you have it in the vehicle. For me, I need to keep it in the vehicle. My tint is obviously darker than law allows, but I have never been stopped in 4 years.
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. [Tinkerbell]
shutterbug

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 #11 
They do make tints just for the UV and they don't change the look of the window at all. Had it done to my car about 5 years ago. Money well spent as we spend a lot of time in the car. Since we are getting my hubby a different vehicle, I will have to see how much it will be to get his done.
Bikermom

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 #12 
Riosmama,
Look online at the Mayo Clinic website. The are the makers of Vanicream. I use it all the time. Not greasy, no scent to it and very helpfull. I live in AZ and we have a Mayo here....Here is the Rochester pharmacy number1-800-445-6326. You just might be able to order it from them. I think you will be pleased.....Not sunscreen in it... so you can use after you apply the Vanicream
Hope this helps;0)
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