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Thread: Glad to find a place where I'm not alone

  1. #1
    Join Date
    Oct 2007
    Laurel, Maryland
    Thanked 0 Times in 0 Posts

    Default Glad to find a place where I'm not alone

    I am a 30 year old single mother of 2 (ages 2 and 8). I have had SLE for the past 7 years. Iím currently taking Cellcept 500mg twice daily, Plaquenil 200mg twice daily, Prednisone 30 mg/day, Phenergan 25mg 3 x day as needed for nausea, Vicodin 5/500 2 x day as needed for pain, Vitamins, Excedrin Migraine for Headache. I have a daughter with special needs and I donít have much time to participate in a support group. I would love to, however there isnít much time. My chief complaints with this disease currently are extreme fatigue, inability to sleep, pain in lower back and at the base of my hairline at the back of my neck, and a pressure feeling that I have from my upper stomach to my knee caps, and thereís always the neurological part where I feel like Iím already 98 because I canít remember anything or I get disoriented. Half of the time Iím unsure of whether I suffer from more disease activity or side effects of medicine and which is worse at this point. I been hospitalized only once from complications of Lupus this past March. I was in the hospital for one week with temperatures of 104 & 105. I don't remember much, but when I was awake, all I thought about was my children and making it so they wouldn't be alone. I've spent the last 6 years in denial trying to convince myself that I'm no different. I'm tired of running from myself and glad God spared my life earlier this year. I recognize myself and my disease for what they are and now I am just looking for answers, ideas, and help to ease the challenges of surviving with SLE while being a single mother, helping my child with special needs to succeed in life, having a full time job, and experiencing small fleeting moments of happiness.
    Pray to be a decent human being. No one gets everything they want. Nothing is promised. Enjoy what you do. Expectations cause you suffuring. Appreciate what you have at that moment.

  2. #2
    Join Date
    May 2007
    Thanked 169 Times in 95 Posts


    Welcome, welcome, Kliwys..

    Oh you've been through alot. Hugs. We can all sympathize with you. Life with Lupus is hard, especially when we deny it.

    Gosh, we all have so many ideas, with so many approaches to it. I would suggest you surf the symptoms forum to start with and read posts like a book. Each person's story will unfold. Many with children, many single parents..or like me married with no children.

    Or put specific questions out there pertaining to what areas of you you want to work with. For me, currently I am changing my thoughts, cognitve behaviors about it. About life, no dress rehearsals and my eats mainly.

    There can be more than fleeting moments of happiness, look for balance.

    Also at the top of the page...put a word in to do a search of the forums, that maybe a start too. Or just jump in a thread.

    I don't want to bog the Intro Forum down with suggestions I have, so I will look for you in another forum...find me.

    You will find lots of support here, day or night...dawn or duck, someone is here or their words they left behind for support.

    Enjoy the night, Kliwys

  3. #3
    Join Date
    Aug 2013
    Thanked 0 Times in 0 Posts


    yes I think we all face the denial thing until a big flare happens then we have to respect the disease! for me that's my rollercoaster ride..

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