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Thread: CA members

  1. #11
    Join Date
    May 2008
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    Burlingame, California
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    Hi
    I just registered here. I had my first bad flare one year ago and right after that, moved to Burlingame, California which is 25 miles south of San Francisco. I have very srong sun sensitivity. Even though I'm using sun-screen, every time I go out I get fevers afterwards, my symptoms worsens. Please, tell me, how do you manage to live in this climate? Or you are not so sun sensitive? I go out with long sleeves, a hat, 50sun-screen - nothing helps. It's always sunny, never cloudy, never rains. I started thinking I'll never have a remission if I live in California. Please, tell me, have you ever had a remission here? Do you swim in pools, do you go hiking, what do you do to protect yourselves from the sun? Does the sun cause flares for you?
    Thank you

  2. #12
    Join Date
    Jun 2008
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    Orange County, CA
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    HI,
    I just registered. I'm 26 years old and have been living with lupus for 4 years. I still don't know how to deal with it. I get really stressed out whenever I flare up because I don't know what to do and just want it to go away. I've had three big flares since I've been diagnose. I live in Orange County, CA. Please let me know how everyone else deal with the pain and mini flares, Joint pains, hair loss, fatigue, sever headache, stomach pains etc.. I'm currently taking 5 mg Prednisone tapering 1 mg every 7 days till I'm at zero and 200mg Plaquenil.

    Thank you

  3. #13
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
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    Victorville, California
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    Banderosa;
    I live in SoCal and, yes, I swim, I hike, I enjoy outdoor activities. However, I take lots and lots of precautions. I use sunscreen as body lotion each and every day (rain or shine) with a minimum SPF of 50. I wear tightly woven, loose fitting clothes in the summer that covers my entire body (I dress in layers to keep cool). I wear big floppy hats and sunglasses with UV protection. Then, I limit the amount of time that I am in the sun!
    Remission is just as unpredictable as this disease. No one is assured remission, but it does happen. It happens with the help of medication, lifestyle changes, taking precautions, keeping doctor's appointments, eating healthy, and getting regular exercise. This does not guarantee remission, but remission will not occur without these.
    I wish you the best

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

  4. #14
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
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    Hi Nants;
    Each person has their own experience with Lupus as it does not affect any two persons the same. Most of us deal with our various pains with medication, taking rest periods, limiting our activities and listening to our bodies. The fatigue can be debilitating, I know, but we have to find ways to give our bodies needed rest and to get recuperative sleep. Talk to you doctor about medications that can help in these areas.
    The hair loss is another issue entirely. I had to finally wear wigs due to my hair loss. But, you should know that the hair almost always grows back once the symptoms become more under control.
    If, while tapering your prednisone, your symptoms are not getting better or they are getting worse, you may have to re-up your dosage until your symptoms subside. Many of us have to play this roller-coaster game with our prednisone, and some of us have to stay on a small dosage to control our symptoms (upping that dosage when we are in a flare). Talk to your doctor about this also, you may have to stay on a higher dosage for a bit longer.
    I wish you the very best and hope that you find some relief.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

  5. #15
    Join Date
    Oct 2008
    Location
    Ontario, Cali
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    Hi everyone!

    My name is Candace and I was diagnosed 3 years ago. I live in Ontario. If anyone ever wants to meet up to chat, I am here.

  6. #16
    Join Date
    Jun 2011
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    Hi everyone, I am looking to start a support group in San Francisco Bay Area. Anyone interested?

  7. #17
    Join Date
    May 2007
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    Seaside, Ca.
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    Cool idea, but I live too far south - Monterey Bay.

  8. #18
    Join Date
    Aug 2011
    Location
    Livermore, CA
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    Hi!

    Where are you located? I am in Livermore...

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