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Thread: looking for support

  1. #1
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    Default looking for support

    Hi everyone, my name is Samantha and I'm 16, I live in westport, CT. I
    was diagnosed less than a month ago by my dermatologist when a
    butterfly rash broke out on my face but i have been on and off sick
    with many problems since i was a kid. I was introduced to one of my
    aunts friends this past weekend who has Lupus and she is married with
    grown children and she looks fabulous, that and all your stories of
    recovery give me so much hope. It's been really hard for me because
    before this summer i was always extremely active, going to the gym
    basically everyday, last summer being in the sun every day without
    effect, being a little beyond my years im out constantly partying or
    with friends staying up late well into the morning. I just feel like
    I've had such a hard time growing up battling so much, and now
    everything i've come to enjoy has been taken away. my parents make
    things worse because if it was their choice they would lock me in my
    room until i'm healthy again, but they don't understand that without
    my social outlet i wouldn't have anything to live for. My friends are
    great, they are totally supportive, and care so much, but they know
    that I am strong enough to handle this. Well I'm really glad that i
    found this group and i'll remain active in posts when i can. Thanks
    everyone <33

  2. #2
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    Welcome! As your aunt's friend shows, you can often live well with lupus. Every case is different, but many of us are pretty healthy, all things considered.

    It sounds like you were diagnosed pretty early, which is good, and it sounds like you have a good doc, that is so important! Sun safety is now going to be vital for you - stay out of the sun. If you do go out for a time, wear a hat, wide brimmed. Wear long sleeves and slacks. Look at sites such as Sun Precautions, Coolibar, Sun Grubbies and others. Visit Lupus.org to learn more as well. Sunblock is our friend as well....get the high SPF stuff that blocks UVA and UVB. Sun exposure can lead to a flare - which is what we all want to avoid!

    As far as your days at the gym - I was diagnosed with lupus about 3 years ago, I'm in my 50's and had been going to the gym 4-5 days a week for the last 15 or 20 years. That really hasn't changed - I'm still there 4 or 5 days a week, my workout isn't as intense, but I'm still there. I still lift weights, I still use the treadmills and elipticals and other equipment.

    Listen to your body. It will tell you when to back off, when to rest, when you need to take a nap or a day in bed. Sleep is vital to our health, I need 8 hours nightly, some need more. I can understand your parents wanting to keep you in and keep you safe, they afterall love you very much, and want to protect you. Try not to get upset with them about that, but try to work with them to compromise on what activities you'll participate in - take it slow, this is difficult for them as well!

    Many hugs to you dear, and stay involved with the board!

  3. #3
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    I'm curious, do you wear makeup? If so, have you tried going without? If it's an allergy, I'm thinking the butterfly rash will start to go away after a week or two.

    You can find evidence now that exposure to the sun can prevent cancer, and sunblocks are causing skin cancer. Certain chemicals make people sensitive to the sun. Since quitting soy, I haven't been sun sensitive. Anyone interested in quitting has to realize it's in everything from salad dressings to chocolates, to cars, bedding, makeup, etc.

    I also think tomatos are something I need to avoid. Everyone may have their own food issues, and not rule anything out in these days of genetically modified food. A food may be good one time, and not another. Some heavily modified foods are corn, peanuts, soy, cottonseed. Tomatos were the first I know of to be released which caused people internal bleeding and rushes to the ER. These were released on us without warning when lab results showed that rats had to be force fed them and had the same results!

    FDA protects us. :roll:

  4. #4
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    yes i wear makeup... i wouldn't leave the house without... not because i'm insecure, but because i hate having to explain to every single person "whats on my face"... ive been prescribed lots of creams for my face so its gone down almost entirely... and i do try to stay active which means going in the sun, so i do wear a good sunblock with zinc... as far as my sleeping patterns go, i have lots of trouble sleeping at night, its also when i feel best about myself, i'm most stretched out and in the least amount of pain... during the day i'd rather sleep because not only does the sun wear me out but it takes me the whole day for my joints to unstiffen and some of my joints in my fingers, wrists, and feet just hurt constantly... as far as allergies, i'm only allergic to the sun, no foods cause anything, no materials or medicines

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