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  1. #1
    The Site Administrator: Currently at home recovering from a couple of strokes,please contact my assistnt admins for forum issues Tom Stormcrowe's Avatar
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    I need some unique help.....

    OK, some of you know I've been having some rather serious health issues the past few months. Well, I finally have a diagnosis. I have Lupus.

    OK, now for the help......in order for me to continue cycling, one issue I have to deal with is the fact that Lupus causes me serious problems with UV light. It causes me to get these huge splotchy lesions under the skin that break open and bleed. This happens even if I wear long sleeves, because UV penetrates most materials. What I need is UV repellent cycling clothes, that are long sleeved, but cool enough for midwestern summers, and won';t make me look like a robed Bedouin on a bike.

    Suggestions?
    on light duty due to illness; please contact my assistants for forum issues. They are Siu Blue Wind, or CbadRider or the other 3 star folk. I am currently at home recovering from a couple of strokes. I am making good progress, happily.


    . “He who fights with monsters might take care lest he thereby become a monster. And if you gaze for long into an abyss, the abyss gazes also into you.”- Fredrick Nietzsche

    "We can judge the heart of a man by his treatment of animals." - Immanuel Kant

  2. #2
    Senior Member MinnMan's Avatar
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    Wow, that sounds very tough. I have no expertise whatsoever, but what happens if you have a healthy coat of SPF50 underneath long sleeves?

    Also, and this is probably already obvious to you, the UV strength in the morning and evening is much less than at mid-day. And though there are other safety, comfort, and enjoyment issues, you may consider getting incredible lights and becoming a night rider.

  3. #3
    Me and the cat... Pamestique's Avatar
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    Tom... I have several UV repellant jerseys and fitness tops (SPF 50+) ... all long sleeve and lightweight. Some I bought at REI, others through various cycling companies (for instance Terry but that doesn't do you any good). Have you checked online? The stuff is out there... I'll go look...
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  4. #4
    Me and the cat... Pamestique's Avatar
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    for instance:

    http://www.sungrubbies.com/product_i...HighTecTee.htm

    They even make cycling gloves...

    This one is alittle more expensive but its UV 50+ and looks like a cycling jersey:

    http://www.sungrubbies.com/product_i...ing-Shirts.htm

    Another company - think about a "driving sleeve" like an arm warmer. I have a pair of these I wear...

    http://www.solartex.com/servlet/the-...sh--Sun/Detail
    Last edited by Pamestique; 11-01-10 at 04:27 PM.
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    Private docent led mountain bike rides through Limestone Canyon. Go to letsgooutside.org and register today! Also available: hikes, equestrian rides and family events as well as trail maintenance and science study.

  5. #5
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    I don't know about cycling jerseys. But over in the sport of fishing, Orvis have clothing with UV protection that you might want to check out.

    Or rub sunblock over your longsleeve jersey?

  6. #6
    rebmeM roineS JanMM's Avatar
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    http://imaginecolorservice.ipaperus....unPrecautions/

    Don't think they have anything cycling-specific, but lots of sun-protective clothing, much of it aimed at an active outdoor lifestyle.
    RANS V3 (steel), RANS V-Rex, RANS Screamer

  7. #7
    Senior Member ro-monster's Avatar
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    Try looking at clothing made for hiking and backpacking. There's quite a bit of UV-protective stuff available, and it tends to be pretty comfortable.

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    I don't know anything about Lupus so I apologize for that. You mention that you need to protect your arms. What about your face, neck, legs, etc?

  9. #9
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    Here's some info that perhaps you already have: http://www.lupusinternational.com/Re...chures_03.aspx

    Brad

  10. #10
    Senior Member BigBlueToe's Avatar
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    Sorry to hear this, Tom. I have no expertise, but I took my dad to his dermatology appointment a few weeks ago. In the lobby they had flyers for manufacturers or UV protective clothing. Maybe you should talk to a dermatologist.

  11. #11
    Banned. The Weak Link's Avatar
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    The head of QA at my hospital is an avid cyclist and has the same problem. I rode with her on a day with a heat index of 100 and she did just fine with her long sleeves. If you don't get an answer here shoot me a PM and I'll put her in touch with you.

  12. #12
    enthusiast JamieElenbaas's Avatar
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    Tom,

    First, I'm sorry to hear about your condition. Take care of yourself.

    Look into Australian sports retail sites. Between their low latitude and an ozone hole overhead, they are deadly serious about UV gear. Since it's warm in the summer they have cooler clothing figured out too.

    Last time I was in Sydney, I picked up a long sleeved top designed for surfing. It's skin tight and, as far as I can tell, just about UV proof. I wear it on the bike when I feel I need warm weather UV protection. Now I wish I'd bought more.

  13. #13
    Pedals, Paddles and Poles Daspydyr's Avatar
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    Dang Tom, that is a sad day for you. You love the outdoors probably more than anyone here. Its good to see the troops with the good suggestions. I hope they work for you.

    Personally, I think the Hooded Bedouin look fits you! Maybe the grim reaper of biking?
    I think its disgusting and terrible how people treat Lance Armstrong, especially after winning 7 Tour de France Titles while on drugs!

    I can't even find my bike when I'm on drugs. -Willie N.

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    Ive used a lot of gear from Rohan. They have some gear with total sun protection, mainly for desert and tropical travel.

  15. #15
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    Tom, I have no specific advice to offer but I have dealt with 'bad back' issues most of my adult life. Although I will have to deal with this continuously, I've gotten much better at it in later years. My advice is similar to finding a good bike saddle. Keep at it until you find what works for you, then build on that and never give up searching or building. Best wishes, Bern.

  16. #16
    Rides again HiYoSilver's Avatar
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    Sierra trading post has many exofficio shirts with spf 50. Also check out Dr Shade spf50 summer balaclava. Looks strange but works great, and cheap
    Hi 'o Silver away

  17. #17
    Senior Member himespau's Avatar
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    Best wishes in getting this figured out.

  18. #18
    The Site Administrator: Currently at home recovering from a couple of strokes,please contact my assistnt admins for forum issues Tom Stormcrowe's Avatar
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    Well, I'm in luck. Specialized has a line out now of SPF 50 long sleeve summer jerseys, but dang! $110! Pearl-Izumi has arm and leg covers in SPF 50, too. I'll need to find a neck drape yet, but if nothing else, my wife can make me a helmet liner skullcap with a drape using UV reflecting cloth.
    on light duty due to illness; please contact my assistants for forum issues. They are Siu Blue Wind, or CbadRider or the other 3 star folk. I am currently at home recovering from a couple of strokes. I am making good progress, happily.


    . “He who fights with monsters might take care lest he thereby become a monster. And if you gaze for long into an abyss, the abyss gazes also into you.”- Fredrick Nietzsche

    "We can judge the heart of a man by his treatment of animals." - Immanuel Kant

  19. #19
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    You might also take a look at the varieties of swim wear. I've seen a fairly good variety of garments in several catalogs. They may be adaptable to your use.

    Good luck on facing the challenge!
    It is better to smell the flowers than taste the roots.

  20. #20
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    I have a similar problem because of some meds I have to take, plus a number of "sun-related lesions" showing up in my 60s after decades of spurning sunscreen (lesson to you young guys there...). My daughter used to work at a local outdoor-equipment place, and she scored me a couple of long-sleeved shirts rated SPF 50. Several companies make them. Mine are North Face (employee discount price) and Columbia (somewhat cheaper). I don't burn or tan at all through those. You don't completely escape the Bedouin look, but they're reasonably attractive casual shirts.
    I don't do anything special for my legs other than sunscreen, which works all right for me. When I started watching the sun, though, I googled up several places that sell loose, airy pants with room to move and SPF 50 protection. I sometimes ride in a pair of nylon zip-off "convertible" pants from REI that aren't much for sun protection but presumably feel the same way SPF-rated pants would feel. Takes a few minutes to get used to them (I'm a year-round shorts guy by choice), but they're fine once you do.

  21. #21
    Member Midlo Rider's Avatar
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    I have very sun sensitive skin also. I also like to snorkel, cycle and kayak. I went to a dive shop and was introduced to a snorkeling suit made for people like us. It was a one piece suit made of a very light weight material that covered everything but my neck and head. It absorbs any sweat and dries really fast. Since I have started using it I am sunburn free for quite a while now. I almost gave up many outdoor sports until I found this. You can wear clothes over it for that svelte cycling look. Hope this helps. Also have started to use the skull caps that footballplayers wear under their helmets.
    Last edited by Midlo Rider; 11-03-10 at 11:49 AM.
    Made it this far so I am going for broke. Living life to its fullest.

  22. #22
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    A comment about SPF. The Honolulu newspaper of about a week and a half ago had a story about sunscreens and advertised SPF ratings. Essentially the story said that the advertised ratings were greatly inflated. Most of the "SPF40/50/??" were in fact about SPF 8. But, if I recall correctly, SPF 8 reduced damaging exposure about 85%.

    No mention of clothing ratings but before I believed any of the marketing claims I'd want to see some independent testing results before I believed them.
    It is better to smell the flowers than taste the roots.

  23. #23
    Senior Member late's Avatar
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    Last edited by late; 11-03-10 at 07:59 PM.
    We are as gods, we might as well get good at it.
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  24. #24
    Rides again HiYoSilver's Avatar
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    Quote Originally Posted by Tom Stormcrowe View Post
    Well, I'm in luck. Specialized has a line out now of SPF 50 long sleeve summer jerseys, but dang! $110! Pearl-Izumi has arm and leg covers in SPF 50, too. I'll need to find a neck drape yet, but if nothing else, my wife can make me a helmet liner skullcap with a drape using UV reflecting cloth.
    You must have skimmed my post. Look at this
    http://www.sierratradingpost.com/p/7...Processed=true
    Hi 'o Silver away

  25. #25
    Must... ride... more... Phil_gretz's Avatar
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    Tom,
    I know that you didn't ask about this, and don't need unsolicited advice, but I had a close family friend whose Lupus symptoms have left her for approximatly six years now since she began making dietary changes. This may not be a one-size-fits-all approach, obviously, but she based much of her initial changes on the book, The Maker's Diet.

    http://makers-diet.net/

    I don't know much more than this, but there may be something there that may be of help to you.

    God bless,

    Phil G.

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