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Thread: Hello from Florida

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    Default Hello from Florida

    Hi,
    Just found this forum, and thought I'd enjoy chatting with people who really know what I'm going through. I do not have anyone in my circle of family, friends or co-workers who has lupus. There is no local support group, and quite frankly... I sometimes just pretend it's no big deal.

    I'm right at 2 years diagnosed, after about 5 years of thinking I was going crazy, and having doctors telling me "of course you are tired, you work full-time and have 2 young kids... take a vitamin and get some rest".

    Now that I have done some research into this lovely disorder, I recognize symptoms that started in my 20's. Odd rashes, a tremendous case of the "shingles" that would return every time the weather got cold, sudden onset of severe allergies, anemia. But in general, I was in pretty good health. I exercised on a regular basis, low BP, low cholesterol.

    After the birth of my second daughter, I could never seem to get rid of the UTI's, bladder infections, and over all pain in the general pelvic area. The joint pain and the extreme fatigue would come and go. I saw a variety of doctors, most of whom blew me off. They wanted to put me on anti-depressants, and vitamins. Oh and I should exercise more. But, the more I exercised, the worse I felt. A few gym sessions put me in bed for a couple of days, needless to say I stopped that.

    I finally found a doctor who would take me serious - my GYN. Isn't that a laugh. We tried several different things, and I even let him put me on anti-depressants while we kept looking. I was scheduled for exploratory surgery to determine if I had endometriosis when I suddenly came down with a horrendous case of Iritis... inflammation of the Iris. I lost my eyesight in my left eye for 6 weeks. My doctor had an Ah ha moment, and when I had my bloodwork for the surgery, he requested an ANA...
    ...he told me the test was positive as he was prepping me to go under. He had to refer me to a my oh so helpful general doc, who basically blew it off, but went ahead and set up the additional labs. Good news is that he had to refer me to a wonderful rheumatologist who is taking excellent care of me. I take plaquenol, dicoflenate sodium, and prednisone.

    I really consider myself lucky that I can do as many things as I do... I have been able to continue working, though it's been a bit rough here and there. Every case is a little different, but it's amazing to read through the other postings and recognize my own symptoms. I suffer mostly from the following:

    extreme, can't get out of bed fatigue
    thinning hair (that one really bites!)
    anemia (with a good diet, I have that almost normal)
    frequent UTI - sometimes serious kidney infections
    bright red butterfly, with extreme sun sensitivity (no, I'm not embarrased)
    rashes here and there on the arms and legs
    hives when it gets cold
    sores in and around mouth
    .. and the absolute worst one - the brain fuzzies.

    I've made a career on my ability to quickly think on my feet, and remember everything I've heard. I've somehow managed to keep my job so far, but I've started to wonder how long I will be able to.

    Okay, shutting up now... I promise not to be so wordy from now on... it's just the first time I've ever really sized this whole thing up. Thanks for the opportunity.

    Sonya

  2. #2
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Default

    Hi SonyaLA :lol:
    Welcome to our forum and to our family. Your story is so much like many of us; especially realizing that we had been suffering with symptoms for years before we were diagnosed AND being dismissed by our doctors or being told that it was "All In Our HEAD!!"
    You were fortunate that you GYN took you seriously and referred you to a good rheumatologist. Be very grateful for that, because there are so many of us who are still struggling with our doctors and that can be stressfull, in and of itself.
    I am glad to hear that your treatments have started and I hope that you begin to feel better soon. In the meantime, we are here to help you in any way that you can. You need never worry about talking too much or ranting, we all go there at one time or another.

    Once Again....Welcome. I hope we see you often
    Peace and Blessings
    Saysusie

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