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Thread: what does it mean?

  1. #1
    Join Date
    Oct 2007
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    Default what does it mean?

    hat does it all mean?

    Does me having Lupus and fibromyalgia make me some sort of freak? Will others look at me during a flare and assume I am a junkie b/c of my rash? Will others think I am crazy b/c I forget things so easily or maybe they will see me taking a bunch of meds and think I escaped from somewhere. Ya know what though? Fuck em if that's what they wanna think. I cannot help how others think, is all I can do is educate. Lupus is a serious disease with serious concequences if not treated right. I accept Lupus and fibro as my soul mates until there is a cure. I will work side by side with both of them to keep me healthy and to educate others on these diseases. They are not a joke and I will not treat them as such. They will be my confidant, my best friend, my understanding shoulder b/c they have all the power and I am the faithfull student. Someday they will be my killers but until then I am going to fight and educate myself and others to be a looooong time Lupus survivor. Lupus is my new best friend.

    Is all I ask from others is a bit of understanding, don't judge me or treat me like a disease. Don't call me lazy when I physically cannot get out of bed. Please don't stare at me when I get my rashes, they're mine and they don't want you. Don't spread rumors b/c you don't understand, ask and I'll tell you everything I know. If we're talking and I lose the conversation just be patient and realize my brain sometimes has errands that I am unaware of or get left behind. Don't make fun of my children b/c I have a funny named illness and don't avoid them either b/c it's not contagious. Instead open your hearts to them as they need friends and a normal life still. Educate yourelf on this illness so you can understand it better when you meet the next person struggling with Lupus. Help the survivors survive and enjoy life as best as they can, even if it's through a card or helping them around the house. Trust me they are not lazy or dirty. they are just in pain and sometimes that means the housework gets put off or they stay in bed for a few days sleeping in order to slow the disease down. Please just understand and not judge and when Lupus takes my life someday, don't be sad but glad that it's over and you made a good impact on my life and be proud I fought it as hard as I could while helping others and educating others.

  2. #2
    Join Date
    May 2007
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    You are not alone with your rashes and your need for lots of sleep.
    I find it hard to explain to friends that sometimes I have to cancel at the last minute because I am ill. I am always making excuses why I can't go out.
    I sleep a lot and need a quiet life in order to take care of my self.
    Life is harder when you have lupus and you are sore and ache all over.
    How do I cope?
    I found comfort in a wonderful inner life, where I read for long hours, paint and am very creative. This is now bringing me income.
    I have become happy with my quiet comfortable life with not too much stress. It's easier than trying to be like the rest of the world that races around in a rush all of the time. The world is too stressful for me.
    I feel better living a quieter life, eating very healthy and getting lots of rest. Minimal social life.
    All the best. Barbara Jean

  3. #3
    Join Date
    Nov 2001
    Victorville, California
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    Thanked 1,128 Times in 743 Posts


    That should be published as our mantra. It is right up there with "The Spoon Theory" in its successful effort to make others understand us and our disease!
    Thank You...again..for sharing with us!

    Peace and Blessings
    Look For The Good and Praise It!

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