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Robinj

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 #46 
What is really upsetting is that this person does not even have a lupus dx. and is giving false hope to folks...
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shutterbug

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 #47 
Scary. I'm glad that she found something that is helping her with whatever ailment that she has, but it doesn't sound like it would be something that a person with lupus should be taking.
TXgirl

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 #48 
@runningmama. Yes. Best hats EVER!!!!
TXgirl

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 #49 
Neutrogena 100 is the best thing since taco Tuesday! I spray my whole body. Since I was told about it I go out with my hat sunglasses 3/4 sleeves or full sleeves, pants (of course) never shorts......and not get a rash or burns or my hair falling out, or headaches!! During my recent camp out trip. I wore shorts and 3/4 shirts. My 100, hat, etc. I only have 2 Fever blisters for all that sun. They showed up this morning. That is pretty good for me! Makes me want to dance!!
upstater

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 #50 
So, today was very overcast and drizzly on and off. And I don't live anywhere near the southern hemisphere. We walked around this town we'd never been to and were outside for quite a bit. I didn't think I needed sunscreen. Guess I need to rethink things. Face got all red and feels like it is burning. Even the little bit of my chest that was showing is red. The rest of me was clad in black fleece and leggings, because it was only like 50 degrees. Joy.
Robinj

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 #51 
The sun is a killer
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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. 
upstater

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 #52 
I've noticed problems with florescent lights too....which I have never liked aesthetically. I work a job and a 1/2. In my "regular" job, I have my own office and control over lights. I have never turned the overhead lights on....opting for lamps with regular bulbs. My little PT job I sit directly under florescent lights and have started wearing a baseball cap (and putting on sunscreen) because I was noticing that my face was getting really red. It's a very casual gig, so I can wear whatever when I am there. But have noticed it's much better when I do that.
Cakelady

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 #53 
For me it's not jut the sun but heat in general will have me running to the bathroom throwing up. Since my adventure on Thursday it's been really bad. Plus I am now running a pretty good fever 101-103 nice just what I needed
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SuzieWonder

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 #54 
It's very good for your body to intact 20-30 minutes of sun a day. Otherwise you'll be taking Vitamin D tabs. The sun helps regenerate your body naturally as long as you don't over-do it. Please stay away from sun block products. Another deadly toxin going into your body. Coconut oil is the best for your short exposure. I've had Lupus since being diagnosed from 2005.
Robinj

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 #55 
What on earth?????????????????????

Sun avoidance and sunscreen is KEY to stopping disease activity. Why are you posting such erroneous information?????

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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. 
Cakelady

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 #56 
Robin she's an idiot plain and simple. The first rule the golden rule when having lupus is to STAY OUT OF THE SUN
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Robinj

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 #57 
Perhaps a cruise without sunscreen will help her lupus. If she really has it.
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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. 
Cakelady

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 #58 
If she can stand being in the sun without getting sick I don't think she has lupus. She might have one of the almost 80 other AI's that mimic lupus.
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Juliescraps

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 #59 
I was diagnosed with discoid lupus in May.  I've learned so much from reading these posts and want to thank Robinj and others who have taken time to contribute.  My first question is in regards to hair loss- I've started using a steroid shampoo but haven't noticed much results yet (been about a week and a half) - how long does it usually take to help?  I also started Plaquenil at the same time and noticed one of the side effects is hair loss - has anyone experienced that?  I've already lost hair and am hoping to not lose more!

Also, I've been interested in these posts on the sun - I also have severe osteoporosis (at age 53) and was worried about Vitamin D and staying out of the sun.  My doctor said to put sunscreen on and sit in the sun for 30 minutes a day.  Obviously this is not going to work as if I'm even out for 15 minutes (with hat and suncreen on) I feel like I have a low grade fever after.  So I am definitely one that will have to stay out of it!  Seeing as crafting is my hobby, I think I've just been given a prescription to craft more!!!

I did have a filter put on my lights at work after reading on these threads about someone reacting to it.  And am taking note of Robin's suggestion of the car window tinting.
Robinj

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 #60 
You are welcome Julie!
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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. 
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