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Sjogrens Topics => Living With Sjogren's => Topic started by: Cindy on May 16, 2013, 05:51:19 AM

Title: Question about sun sensitivity
Post by: Cindy on May 16, 2013, 05:51:19 AM
This is my first summer with big sun sensitivity. I had some last year but plaquenil just made it 100 worst. Im thinking with all the precautions I will be ok but is very expensive. Im saving to put the special film in my car windows but is about 1000. I have never been an outsider so I think as long S Im protected when driving I be ok. I live in Texas which very soon will get to the 100 degrees. In the mean time Im getting ready and found this product that you can add to your washer and according to the reviews and website it adds 30 upf to the clothes. Have any of you try this? I ordered some coolibar sweaters but they are super expensive.
Title: Re: Question about sun sensitivity
Post by: Reggie on May 16, 2013, 07:08:24 AM
What is the name of the product you put in the wash?  I need to get that too.
Title: Re: Question about sun sensitivity
Post by: 4Kids on May 16, 2013, 08:21:12 AM
Website for product I found is called sunguardsunprotection. Google that and the website should come up.

Article about these sorts of products is by googling new-breed-of-products-said-to-offer-sun-protection-but-doubts-linger.

For those of us with issues, even though the nytimes article states that it might be overkill, I still think it might not be a bad idea.  I hate heat and wearing a tight-weave long sleeve dark shirt in the heat is not appealing. Something white and cotton, still w long sleeves, might be more appealing especially with that spf.

That's just my thoughts...  Quick ones too.

eta: mods I tried to attach the website without putting on a link and can't remember specifics about what is allowed. So I did that. Hope it is right.
Title: Re: Question about sun sensitivity
Post by: Joe S. on May 16, 2013, 08:46:31 AM
I found SPF 30 clothing at a sporting goods store. The long sleeve shirts that I have are very light weight. I also have an SPF 30 hat. Gloves might be nice. I have thought about long pants also. It is the way the cloth is woven and has nothing to do with the threads.
Title: Re: Question about sun sensitivity
Post by: jazzlover on May 16, 2013, 09:19:54 AM
Cindy... shop around on those windows! I had my car done last year for about $200. It was a professional job.. with great results. I know things are cheaper here in MO than in TX.. but still!!! It should not cost you $1,000.
Title: Re: Question about sun sensitivity
Post by: Cindy on May 16, 2013, 10:10:36 AM
Jazzlover I guess I need to. One of my coworkers sister has lupus and gave me the info about this tints, she said that with those tints you dont have to wear long clothes to protect your skin.
Title: Re: Question about sun sensitivity
Post by: Dee on May 16, 2013, 10:52:26 AM
I agree with Jazzlover it should not cost that much for your window tint, I had mine done (in SoCal) for about $300 or $350 and it has helped tremendously and still looks great. Perhaps you can utilize YELP to find a company with good reviews in your area.  I have also bought several items of spf clothing (at REI on sale) and have been very happy with them, they seem to work but then again I pretty much hole up and spend little time in the sun in late Spring Summer. 
Title: Re: Question about sun sensitivity
Post by: odie on May 16, 2013, 11:03:23 AM
Do shop around for window tinting.  It does vary even within the same area.  We just spent about $200 for a small car after getting a quote from another place for $350.  The tinting sure makes a difference.
Title: Re: Question about sun sensitivity
Post by: mshistory on May 16, 2013, 01:57:02 PM
Even with your windows tinted, still apply a 50+ SPF everyday to the sun exposed areas of skin. I have a body cream sunscreen that I apply to my neck, throat, chest and arms everyday and a different facial lotion sunscreen that I apply every day.

I've also accepted that I will be an indoor creature as much as possible - the sun will land me in the hospital and that's just not a fun experience ;-)
Title: Re: Question about sun sensitivity
Post by: jazzlover on May 16, 2013, 03:28:28 PM
PS... Contact your state highway patrol to find out what you need to do to get a sticker or permit to have "illegally" darkened windows. For Missouri, I just had to get a prescription that I needed the dark windows and he wrote it for 15% transfer of light. Then I went down to the state troopers' office and got a sticker for my car window.

--- and ... I happened to be in my Dr's office to ask about this and started there. He pretty much knew how to write the prescription... and it worked.
Title: Re: Question about sun sensitivity
Post by: Reggie on May 17, 2013, 12:49:04 PM
Because it was a prescription I wonder if insurance would pay for it??
Title: Re: Question about sun sensitivity
Post by: slccom on May 17, 2013, 12:55:11 PM
I doubt that, but it is worth a shot. In any case, it will be a medical deduction on your taxes.
Sharon
Title: Re: Question about sun sensitivity
Post by: Skylar on May 17, 2013, 05:02:31 PM
I don't rely on the tinting of my car windows because once I park the car I have to walk outside to get into the mall, library, concert hall etc.

I prefer to wear UV protective clothing and apply sunscreen.

Also get tested for Vitamin D - you want to keep your levels in that nice safe mid-range.
Title: Re: Question about sun sensitivity
Post by: jazzlover on May 17, 2013, 05:47:36 PM
I'm definitely taking the deduction!

Skylar .. the reason I have the tinted windows is for the glare on my eyes. The sun is so bright in Texas (we are from there and travel back twice a year) .. that my eyes get burned without the tinted windows. It really helps even here in Missouri.

I NEED the sun on my skin. I don't get enough.
Title: Re: Question about sun sensitivity
Post by: Skylar on May 17, 2013, 06:02:05 PM
Quote from: jazzlover on May 17, 2013, 05:47:36 PM
I'm definitely taking the deduction!

Skylar .. the reason I have the tinted windows is for the glare on my eyes. The sun is so bright in Texas (we are from there and travel back twice a year) .. that my eyes get burned without the tinted windows. It really helps even here in Missouri.

I NEED the sun on my skin. I don't get enough.
I forgot about glare in the eyes - annoying isn't it? I have my theory that it's related to the dryness of the eyes. Hope it helps.

Title: Re: Question about sun sensitivity
Post by: quilt4fun on May 20, 2013, 10:43:18 AM
 I, too, deal with sun sensitivity.  My arms and face just plain hurt when I'm in the sun!

In NJ--I carry a doctors prescription just in case I get stopped.  Mine costs just a little over $200 - back window and doors.  She suggested I could get 4 inches on windshield for $20, so I guess I'll get that done in the next few weeks.   It really did help on our trip to Western New York this past weekend.
   I also found UV 50 clothing at Cabela's.  They had 4 different colors of long sleeve, 4 -5 colors in sleeveless (which wouldn't do me any good!)  and 2 colors of long pants and shorts.  I bought 1 shirt and 1 pair of long pants. They are extremely light weight and launder beautifully!
  I have  2 other shirts made by Columbia that I've worn for the past 2 summers and think they are great for the summer sun.  But I bought Cabelas because they were cheaper and on  sale! 
   And, of course----sunscreen. And a wide brimmed hat. And wrap around Eagle Eye sunglasses.
  We sun sensitive people sure look----ugh---what's a good word for that look??!! 8) :-X ;D
Title: Re: Question about sun sensitivity
Post by: Linda196 on May 20, 2013, 11:41:13 AM
How about Sjo fashionable?
Title: Re: Question about sun sensitivity
Post by: wendyoh on May 20, 2013, 11:47:32 AM
I have struggled with sun/heat sensitivity for about the last 9 yearsish
it has gotten worse over time

I took risk and took outside walks this weekend, sat when it was overcase went for about 40min around 3pm, but didnt realize it was still about 78 degrees and then sunday earlier when cooler, like 68 9am, was partially sunny and part overcast
I wore sunscreen and hat.....
but it gave me bigtime brain fog even so....

do any of you get that where you feel it compromises your intellect? I read that in some people it effects immune cells but they don't fully understand mechanism of what happens when thats hurtful process, at least my research didnt uncover that. I don't like not understanding why that happens.....but I respect it :)  no more, gonna be a long summer sigh
Title: Re: Question about sun sensitivity
Post by: jazzlover on May 20, 2013, 12:12:23 PM
Does anyone else get "sunburned" eyes? My skin is fine. My eyes burn like fire if I get too much sun.