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tgal
04-18-2011, 10:34 AM
Ok Everyone I need some help. As many of you know, and experience, I have terrible issues with the sun. Yesterday I thought I had done everything right. I had to mow the grass so I put on long sleeves, long pants, covered myself in sunscreen, wore my hat and my classes and am still paying for it.

I am supposed to go with my family to a water park in June. We will be staying at the resort for 2 nights and I know I can't go on the rides but I have to figure out a way to be able to be outside without paying for it. I am going to HATE not being able to get in the water or enjoy the fun with the family but I don't want to have to spend the whole time in the house. Any suggestions?

Maybe if I can get out of this flare I am in it would be better but I really need to know how everyone handles the heat/sun in the summer and still have a life of some kind.

Angel Oliver
04-18-2011, 02:44 PM
Mari,
there is a thread on here somewhere with a link where you can buy sunproof clothing,which will help you allot.Let me look.xxxx

Angel Oliver
04-18-2011, 02:54 PM
Mari,
I can not find it but its a few years ago we had a thread and some members bought em from the link. Ive had a look online and found this one,but i ve never bought from them so just read it and see what you think.If rubbish tell me so i can delete this thread.http://www.coolibar.com/lupus.html
love amanda
xxx

Linda From Australia
04-18-2011, 05:00 PM
This might be a really bit - stupid OUT THERE Idea - but can you increase your steroids before going away, will that cover your flare, or in case you have a flare.

I bet you are so so so glad I am not your doctor!

tgal
04-18-2011, 06:02 PM
I have one of the sunproof shirts but honestly I don't see enough difference to make it worth the price!

As for you Linda... I would gladly increase my steroids to get out of one but 40 a day wasn't cutting it and they are dropping me now. Sighs.. I am going to have to go to the doctor but I really wanted to wait a month for once!

Saysusie
04-18-2011, 11:25 PM
You did do everything right! The only other thing that I do (in addition to everything that you mentioned), when I know I have/want to be in the sun is:
1) I make sure that I get plenty of rest prior to the time that I intend to be in the sun.
2) When in the sun, I try not to do partake in any exertion-type activities [like mowing the lawn :-(].
3) I take frequent breaks from the sun (if possible) by going indoors for short periods of time.
4) Immediately after sun exposure..I take another recuperative rest period (just in case) that usually lasts for an entire day.

So, if I am going to spend one day in the sun..I have a 3 day plan in order to (hopefully) have one successful day in the sun!
I hope that this is helpful. Sometimes, it is just not enough to protect ourselves from the sun..we must also make a plan to ensure the least amount of problems and to get the most amount of enjoyment!

Peace and Blessings
Namaste
Saysusie

tgal
04-19-2011, 08:11 AM
Thanks to all of you! I was just really ticked off yesterday and I refuse to not go on this vacation (first one in 4 years) because I can't get in the sun at all! The good news is that the room we got is in the park and it has its own grassy/shady area. Because we are guests in the park there is an area that we can use 24 hours a day with a pool and hot tub etc. I am going to find a way to make this work but I have to get out of this flare first! I should have known that I was already feeling so bad I didn't need to mow but I had put it off so long already!

Linda From Australia
04-19-2011, 04:50 PM
WOW - June holiday, that will be so exciting.. What is the actual date you will be on holiday, and do you have to travel very far? Make sure there are plenty of movies in your room and get plenty of books to read. At least you can go out in your bikinis in the middle of the night.

steve.b
04-20-2011, 12:08 AM
there was a thread on whl, that had a course for medical people to learn about lupus.
i completed the course, and learnt a few things.

a flare can be induced or prolonged by:
• Exposure to ultraviolet rays from the sun or fluorescent light bulbs
• Sulfa drugs, which make a person more sensitive to the sun, such as: trimethoprim-sulfamethoxazole (Bactrim®) and (Septra®); sulfisoxazole (Gantrisin®); tolbutamide (Orinase®); sulfasalazine (Azulfidine®); other sulfa-containing medications such as hydrochlorothiazide
• Sun-sensitizing tetracycline drugs
• Penicillin or other antibiotic drugs such as: amoxicillin; ampicillin; cloxacillin
• Viral or bacterial infections
• Anything that causes stress to the body, such as physical exhaustion, surgery, physical injury, pregnancy, or giving birth
• Emotional stress, such as a divorce, illness, death in the family, or other life complications

Mari, hopefully these facts can help you.

always thinking of you, steve.

Linda From Australia
04-20-2011, 01:02 AM
Can you copy and paste the thread here please?

tiggerlishus - Heidi
04-20-2011, 01:32 AM
the one is way i stop from being in the sun mowing lawn is getting some one else to do it lol i do actually get soem one to mow lawn before dan i paid some one £10 every month to come do it as not only sun that effects me but also i have allergies to grass!! but playing in the sun is different matter i have a sun tent with uv protection for when we go out to beach and places and i have found a site to buy uv protected personal sun parsols for when walking round ( just got save for it now lol) but other than that i do what saysusie says with breaks in shade and not over exerting!!

oh yes and don't forget the glup called factor 50+ uv protected suncream!!

hope this helps xx

steve.b
04-20-2011, 02:39 AM
linda, the thread is in rss feeds.
it is titled-
Lupus Foundation Of America And RN.com Launch New Lupus Education Program

the course is free to complete until the end of the month.

Sarah2010
04-20-2011, 03:23 PM
Because SPF clothing is so pricy..I found that "RIT Dye" makes a SPF wash you add to your laundry and it makes your everyday clothes SPF. Best part is...it's only 2$ a box!!! I just read online that it will turn a regular t-shirt (spf 5) into a spf 30 with one washing...and the spf lasts for about 20 washings....I think its a good idea.
-
Sarah

Linda From Australia
04-20-2011, 03:31 PM
WOW I never knew that. Can you somehow find out where you read that online?
I just had a thought, I wonder how they test that. Perhaps I can get my students to do some investigations to find out how effective it is. I would really appreciate if someone can find some data for me to use.

By the way Sarah - hello, hopefully you are improving

tgal
04-20-2011, 06:19 PM
Hi Steve,,

Yeah, I know but since my flare started almost 2 months ago I have no idea what caused it. I felt a tad bit better sunday and HAD to get the yard done but I knew better. I knew that any little thing would take me all the way down again just like I had been for weeks. I had been trying to wait it out and not make a special trip to the doc but I ended up there then the ER today.

I just have to learn not to be so hard headed!

Sarah2010
04-20-2011, 06:27 PM
Linda. Hello to you too. I have been home from the hospital now for a week and am FINALLY improving!!! My latest blood test shows that my blood counts have improved :) So happy that the cellcept is working for me!!! Anyways....this is where I found the info on the rit dye. We have it at home but havnt used it yet. I am anxious to try it. hope u find the info useful. http://www.amazon.com/Rit-Guard-Laundry-Treatment-Protectant/dp/B0000Y3F6W

tgal
04-20-2011, 06:45 PM
That is a great idea Sarah! I will look into it too!

steve.b
04-21-2011, 02:08 AM
amazon sells it 6 x 1oz packets for $20.00
you can buy it direct in single 1oz packs for $1.99
a lot cheaper.

https://sunguardsunprotection.com/order-now/info_8.html

they post only to usa adresses.
the rest of us have to go through amazon.com

Linda From Australia
04-21-2011, 03:05 AM
Is it possible to make this a sticky with the title something like: Sun protection clothing dye
Thanks in advance