tag:blogger.com,1999:blog-2595844535299775193.post4324639510182004111..comments2023-10-24T06:56:13.050-04:00Comments on Road to a Lupus Cure: A Health Educator's Perspective: Sun Sensitivity and LupusSophie - LFAhttp://www.blogger.com/profile/04688789367974778219noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-2595844535299775193.post-56154979918261084042013-04-04T07:17:26.072-04:002013-04-04T07:17:26.072-04:00Thanks for sharing..Living Storage specialise in h...Thanks for sharing..Living Storage specialise in home storage furniture. Our designs offer you the perfect solutions to creating that extra bit of storage space and provide invaluable concealed storage areas to keep your rooms neat, tidy and organised.<br /><a href="http://www.Livingstorage.co.uk/" rel="nofollow">Storage Beds</a>Storage Bedshttp://www.livingstorage.co.uk/noreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-60711917977929075362013-04-03T21:23:47.707-04:002013-04-03T21:23:47.707-04:00Hang in there lupus warriors!
I too have dealt wit...Hang in there lupus warriors!<br />I too have dealt with severe photosensitivity even prior to the initial and final diagnosis of SLE.<br />In mid 2005, i realized working 9+ hours a day in an office and building filled with fluorescent lighting was unbearable for me, physically. I was always fatigued, and it became a major challenge for me to get ready for work mornings. Not only that, riding the commuter express toward the early morning (8am sunshine on the sunny side of the bus) wreaked havoc on my body, too. So, I've learned to adjust my outdoor activities around the sunshine to EVENINGS! Yes, I exercise, shop, drive, play tennis, golf--all after 5PM. It's been an adjustment AND worth it! I don't usually 'share this with people' (friends, relatives, colleagues) because "they just don't get it." Thanks for this insightful article! I've been sharing it with my friends who desire a deeper understanding of WHY i'm unable to attend outdoor concerts in the middle of the day, on weekends all day in the summer, spring, or fall. I'm OK with it, because the alternative is much worse. I was in the sun (covered to the extent possible) in a hot tub at 10am for 10 minutes 3 days ago, and I'm still experiencing extreme fatigue and skin ruptures--dare i say a 'tiny flare' (if there is such a thing) All this to say:<br />Apply your SUNBLOCK 15 minutes before going outdoors (very important)wear long-sleeve white cotton shirts; white leggings, and I purchased a UV protective 5-inch wide-brimmed black/brown tweed-looking hat at the Hat Shoppe at Shoreline Village in Long Beach, CA. The tight WEAVE of the hat is similar to that of products designed by Eric Javits; however, I paid less than $40 for my gorgeous hat 4 years ago! It is not only versatile; but also sharply stylish--everywhere I wear it I receive compliments! Personally, I will not waste any more money on jackets or hats from Coolibar...overpriced and ineffective for ME. Lastly, I used the outdoor hot tub at my residence at 10am because: MY BODY WAS ACHING from being in the sun or something 2 days earlier. I desired some relief! Next time, I'll just sit in a warm bathtub of Epson salt and Juniper Berry oil from KNIEPP for 10 to 15 minutes instead!<br />HANG TOUGH WARRIORS! We can and will make it, patiently and literally ONE MOMENT AT A TIME!<br />Love to ALLauntieMhttps://www.blogger.com/profile/13193612347495363459noreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-85521380265381434652013-04-03T19:42:42.835-04:002013-04-03T19:42:42.835-04:00I have been living with dermatomyositis and lupus ...I have been living with dermatomyositis and lupus for the past 9 years. I am incredibly particular about wearing appropriate clothing, hats, sunglasses, and tons of sunscreen at all times of day all throughout the year. The worst part is I have an allergic reaction to about 90% of sunscreens. I finally found a really good sunscreen and I wear it all the time, but it seems like it's never enough. Even a short duration of time in the sun in the evening with all precautions and all my symptoms flare really bad and my skin rash gets so much worse. It makes me feel down on sunny days because I know the cost of being outside. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-70922655135716090512013-04-01T20:13:28.349-04:002013-04-01T20:13:28.349-04:00Hi Anonymous, perhaps tell them to google it. See...Hi Anonymous, perhaps tell them to google it. Seeing is believing. If they see the info on the condition(s) for themselves, they'll be more inclined to be compassionate once they "understand" it. If they're not, they weren't worth your time to begin with. *hugs*<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2595844535299775193.post-63991189409871155682013-04-01T19:58:48.331-04:002013-04-01T19:58:48.331-04:00I live in NZ and I have lupus/epilepsy/peripheral ...I live in NZ and I have lupus/epilepsy/peripheral neuropathy and it is very hard to live with. I am photosensitive to the sun, artifical light, I can't spend to much time on the computer because I pay for it the next day. What is really annoying is I have a nice complexion which makes people think that your not sick and they have no idea what is going on inside our bodies. How do you deal with this sort of disbelief?Anonymousnoreply@blogger.com