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Thread: Sunblock

  1. #11
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    Glad to hear it worked so well for you. Thanks again for sharing, it will save a lot not having to try them out.

  2. #12
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    Smile hate wearing sunscreen

    i really hate wearing sunscreen don't know why i don't go out becuase i have to wear that
    i have a question for some one does any one feel when thier out in the sun that you get weak and all you what to do is sleep ?


    maria

  3. #13
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    Yes Maria..

    For those of us with Lupus, that's a very common effect from being out in the sun, feeling weak and tired. As is nausea, headache, low grade fever, chills...basically all the symptoms of a bad flare. Oh, yeah, and the sun can cause a bad red rash all over.

    For the first 15 or 20 years of begin diagnosed with Lupus, and especially when I had active disease, I couldn't get ANY sun at all. Even the shortest time spent in it, would cause me to feel horrible. And that was such a frustrating thing for me when I was young and in my 20's, especially. All I wanted to do was outdoor activities, like everybody else got to enjoy.

    But over time, and especially when I finally achieved a long lasting remission and things really quieted down with my Lupus, I was able to gradually tolerate small amounts of sunshine. But I had to be diligent about applying the sunscreen and wearing a hat and sunglasses. At first, I would only get about 15 or 20 minutes of direct sun, and then make sure I found shade. Gradually I seemed to be able to tolerate more at at time. I built up to 30 minutes of direct sun.

    I've now been able to go to Hawaii, and last summer Jamaica, and enjoy a little time in the sun wthout the ill effects. I think one thing that has helped this, is the fact that we now have more effective sunscreens available.

    The things I am absolute diligent about when I do get sun though, are making sure I don't miss a spot when I apply sunscreen, being careful to never overdo it and stay in it too long, and staying on top of my hydration. I drink tons of water anyway, but double it when I'm spending any time in the sun.

    I know what you mean about hating to apply the sunscreen. I agree. It's so time consuming and then you end up greased up and slippery feeling. Hate that too. But if it means I can enjoy a little sun, I'm willing to do it. I spent so many years without ANY sun, that it feels like a treat now to get to feel it on my skin again. If I am allowed that pleasure once more in life, I'm willing to take the time to rub a little protection on.

    I'm off today, practicing my safe sun rules!

    Lori

  4. #14
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    OMG Maria!! YES!!! I ALways get SO SLEEPY and nauseated when i get in the sun! It gets in my system even quicker it seems when i dont wear my GOOD sunglasses! UGH!!!! I can barely hold my eyes open when i get a flare from the sun!!!
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

  5. #15
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    Before I was diagnosed, in addition to the overwhelming fatigue, my skin literally boiled in the sun. I would come in after just half an hour or so, and hundreds of little bubbles would be under my skin, especially on my arms. It was horribly painful, and I never wore sunscreen. I still hate wearing it, but I do it anyway. I haven't found one that doesn't smell like sunscreen (can't stand the smell of coconuts, or whatever that is) and no matter how long I wait for it to soak in, my makeup just doesn't look right. I know in the long run that doesn't matter as much as protecting myself from the sun, but I don't like for the butterfly rash to show if I can help it. I think I need to take a trip to Target this weekend...
    Love...faith...joy...hope...strength...
    Lupus, you have no chance!

    Love and hugs,
    Cheryl
    (mom to my little Chihuahua, Brandi)


    Diagnosed with SLE, Sjogren's, Reynaud's, Celiac, and arthritis November 2006.

  6. #16
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    Gotta LOVE those trips to Target!!!! Thanks for the info Lori!!! Any excuse to go to Target huh!!! LOL Of course these days im not one for shopping like i used to be though! On the up side though it saves Carl and i money! LOL HE surely doesnt mind that! HMMMMMM, theres always those catalogs to order from though! SHHHHH, dont tell Carl! LOL
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

  7. #17
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    Default Defying the Sun...

    Hi Brandichi...

    Sorry to hear about your reaction to the sun. I remember my skin having that reaction in the past...the little bubbles. When I was diagnosed at age 18, I spent the next 10 years totally unable to get ANY sun at all. When I had active Lupus during that time, I could not even get a small patch of sun on my skin, and I'd have a major skin reaction and end up feeling very, very sick. It only took a couple times of that for me to learn to totally avoid the sun. I always felt so strange during the sunny, summer months, while everyone was enjoying their shorts and tank tops and swim suits, I'd be covered in white from head to toe, and could be seen rushing from one spot of shade to the next where ever I went. I felt like such an outsider. It was one of the things that made me deeply sad for those ten years...that I could no longer bask in the sun....even when I was protected by sunscreens.

    I fought it more than a few times, too. I remember when I was about 22 and my husband and I were living in downtown Portland in a high rise apartment building, I got totally fed up with missing the sun one day. Actually, I didn't just get fed up, I got defiant....and angry. I woke one morning just plain pissed at Lupus and what it had done to me, how much it had changed my life. I remember thinking...'this doesn't make sense, how can I be totally fine with the sun one day, and then just because they tell me I have Lupus, all of a sudden I can't get any sun anymore'. It just didn't seem logical to me...actually seemed kind of stupid. I stepped out on my deck and stood for 5 minutes watching all the people having fun in the sun...people roller blading, hurrying down to the waterfront with their lawnchairs in tow, walking their dogs...and I thought, this is not fair...I'm going to enjoy the sun too. And I did the unthinkable...I changed into shorts and a tank top, put on my sunscreen, found my lounge chair, my book and a bottle of water and I headed to the elevator in my building. I hopped on and then thought, hey instead of making the trip down to the grassy waterfront park, I need to be closer to the sun. I pushed the button to take me to the 31st floor...the sun garden on the rooftop. That way I could be right there up close to the sun, and it would be unobstructed by anything...straight from the atmosphere to my pale white skin. How's that for defiance? I rode the elevator to the top of my building, walked out to the garden and set up my lounge chair as I thought, 'how cool, I've got the whole place to myself.' I spent the next hour and a half basking in that sun, catnapping, only waking long enough to roll from front to back a few times. Had to make sure I baked evenly for those perfect tan lines. I even felt good through the whole thing, never felt sick at all. And it felt soooo good to have the sun baking me, felt like the good old days.

    Finally I gathered my things and took the elevator back down to my apartment and went to fix dinner before my husband got home from his classes. I felt on top of the world...I told myself, 'see I can too get some sun, they don't what they're talking about'. Just a short time later, I had the first inkling that something was seriously wrong. I went from feeling great one minute, to breaking out in a cold sweat and horribly nauseated the next. My legs started shaking and my head began to ache. I suddenly became so tired I couldn't even think straight. Then I broke out in the worst red rash I've ever had in my life. It started on my legs and crept upward. Then when it succesfully covered me from head to toe, the little blisters started appearing and it started itching and burning. When my husband walked in the door shortly after, he found me in the bathroom so sick to my stomach I couldn't lift my head up. I could barely tell him what I'd done.

    The end result of my defiance was a trip to the emergency room and a hospital stay of one week...during which time I had the worst Lupus flare of my life. I have never had so many Lupus symtpoms all at one time. I mean everything! Even after my body recovered from what I'd put it through, my mind held on to that for a long time. I became very fearful of the sun. I totally avoided any sun for years. I finally accepted that, at that time in my life, sun was my worst enemy. I was humbly put in my place by Lupus once again.

    I think that gradually over the years, and because I've been in a strong remission for about 15 years, I have been able to get just a little sun if I am super protected by sunscreen. I am very careful to limit my exposure to early morning or later afternoon, I never actually sun myself, just do a few things in the sun, like plant a flower, then move to the shade for 20 minutes. Then I might walk around the yard and water my plants for another 15 minutes. Then back to the shade for a bottle of water. I am extremely careful when I'm in the sun and near water, like the ocean or a lake. I limit my direct exposure even more. For example, when I was in Jamaica last summer, my husband and I took out a small catamaran for some sailing and I used half a bottle of sunscreen and covered every spot on my body twice. I wore my all white clothes, long sleeves and cotton pants that covered to my feet (I stayed cool though, because the waves soaked everything I was wearing) and I tied my hat on my head (had to, we caught such great wind). I took 3 bottles of water with me and drank them all. We spent 2 hours out there on the beautiful Caribbean waters and had the time of our lives. And the best part, I never had any ill effects from the sun. Not one.

    I celebrated my successful Sun Day later that evening at the piano bar, with a nice cool Rum Cream on ice and some dancing to my favorite music, Bob Marley.

    I wrote all of this as a warning to others with Lupus, be very careful in your definace if it involves the sun. I get nervous when I read about some of you saying the sun doesn't bother you and you're never going to stop getting sun. Please be extra careful EVERY single time you get sunshine on you. It is never worth the price you will pay. I have never met, or heard of, anyone with Lupus, that wasn't affected by the sun. Please be diligent in protecting yourself....and if you are in a time of active Lupus and having lots of flares, I'd recommend getting absolutely no sun at all. That's the only way to be sure.

    Fondly,

    Lori

    p.s. Brandichi...I'm the same way as you with sunscreen over my makeup, hate the look....I was very happy to find that this sunblock went over my makeup without much smearing at all. Better than most I've tried.

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