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Thread: Hello! Newbie here, looking for pals who "get it"

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    Default Hello! Newbie here, looking for pals who "get it"

    Hi, my name is Whitney and I was diagnosed with Lupus and APS last Friday. Though I'm newly diagnosed, I have been "sick" for 4 years. I was diagnosed with fibromyalgia and ankylosing spondylitis in 07 and was put on Enbrel two years later to treat the AS. Five months after the first Enbrel shot I started having neurological symptoms. I couldn't feel my face, double vision, bad vertigo, nausea etc.. Well, it turns out I had developed demyelinating lesions on my brain as one of the side effects of Enbrel. In my heart I knew that AS and Fibro were NOT the main issues here. There was something else wrong with me. My neurologist was so baffled at what Enbrel had caused that he brushed me off and said that I should just try to be seen at Mayo Clinic in Rochester, MN. My family and I agreed and within 8 weeks I was at Mayo. They told me that the lesions were going to be there for good, but my neuro symptoms should remain gone (80% chance) While I was at Mayo I told them about all the symptoms that I'd been having since 06 and I stayed a week. I left with a Fibro diagnosis and some open ended questions that they said I would need to look into when I returned home. (Don't get me wrong.. they left no stone unturned and they were absolutely fabulous)

    I had always tested negative for Lupus, but the test they ran was borderline positive. This didn't alarm me, I really didn't think I had Lupus. Also I had abnormal IgG IgM.
    I was so tired of doctors when I returned home that I just did my PT, saw my general practitioner, and hoped for the best. I got better, even got a job.. then I got sicker again. (UGH the dreaded cycle of sick!)
    I broke down and went to a rheumy b/c I couldn't go through what I thought was another Fibromyalgia flare again without seeing a specialist. I heard about the rheumy from a client in the hair salon I was working at. She stopped me one day outside, grabbed my arm, and said, "Honey, you have Lupus!"
    She insisted that I see her doc because my skin was so red from only 5 minutes of being outside. I saw him, blood tested positive now, and ta-da I HAVE LUPUS.
    (I could almost feel him hand me the 12 spoons from "The Spoon Theory" as he told me the diagnosis!!)
    After 4 1/2 years I finally know what is REALLY wrong with me. My husband and I were thrilled. Of course the rest of the world wouldn't understand that.. but those who have been through what most of us have been through understand completely.
    So now, I'm determined to stay positive and take care of myself. (as I type this at 3am.. hey.. I don't work.. my time is all messed up!)
    I need friends that understand and I cannot wait to make some real connections here!

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    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
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    Hiya Blue! Well it is nice to hear your story and it was wonderful chatting with you the other night (red and I usually chat in the chat box in the late evening). Yes, we do understand the thrill of a diagnosis. I am still waiting for that and I too will be "thrilled" to have an answer. WHL is a wonderful place to vent and ask questions. In never ceases to amaze me how much support can be found here.

    We look forward to getting to know you better and welcome to WHL. We are glad to have you!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hello Whitney,

    Don't worry, people here understand exactly what you mean when you say you were thrilled to finally know what was wrong with you. It probably sounds twisted to a non-Lupus individual, but here, it makes perfect sense. It sounds like you have a supportive husband, and your positive attitude is a great thing to see. Welcome to our group!

    Rob

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    Hi Blue,

    Welcome to WHL. Guess what? You have found a whole bunch of pals who get IT.
    Most of us have been through the same thing you have, years and years of no dx, and finally Bingo, it's lupus.
    To all of us, finally getting the dx, was a relief, because now we know, WE ARE NOT CRAZY AND WE ARE NOT HYPOCHONDRIACS.
    I hope you will feel at home here, like all of us do.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    So glad you found us my friend and MANY of us identify with you and certainly do GET IT!!!!Hang in there n keep posting when you can.
    love n gentle hugs
    Amanda.xxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    Hello Red;
    Welcome to our little global family that we call WeHaveLupus. As you have already seen, we certainly get it and understand. Like you, many of us went through many years of illness and a frustratingly long diagnositc period before we got a diagnosis. Like you, again, we were so very happy to finally have a name for what was bothering us that we felt like throwing a "I'm Not Crazy" party!!!
    One of the things that we firmly believe in here is learning all that you can about this disease and how it affects your personally. So, I am so very glad that you are doing this.
    You will, undoubtedly, make some very good friends here. Each member of this family has their own jewels of information that they are more than willing to share, everyone here is very understanding, compassionate, and extremely supportive. So, you have definitely come to the right place. Once again....welcome.

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

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    Hi Whitney, and welcome!
    I hope you'll make new friends and get to learn more about Lupus.
    We're all here to support eachother when it's needed.=)
    Hugs!
    A butterfly is not afraid to spread it's wings.

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    Hi Whitney,
    Welcome! You are sure to find people who understand you here. I know the feeling all too well of being glad for a diagnosis. My doctor was just beside himself when he had to tell me but I said at least I have a name for what I'm fighting. Its hard to fight when you have no idea what the enemy is. There's lots of info on here, especially the sticky's and for people that understand You have found the best place for that as well. Welcome you are among friends! Billie

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    Your story and mine are so similar that it's spooky. Right down to the onset in '06, the fibro diagnosis - I even went to Cleveland Clinic (Mayo said they didn't take on fibro patients). And you're right, the diagnosis, no matter how crummy it is, makes you feel better. It's as if now you have permission to feel horrible. I tried to work too and that was when my rashes started and my numbers changed. From there on, I have been the picture of a Lupus patient with blood clots, thrush, complete lack of tolerance of sun. But at least I know I'm not alone. I don't wish it on anyone but I'm so grateful you all share!

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    Oh we allllllllll "get it" for certain. I still haven't been 100% diagnosed but I am told I have RA, Lupus and Sjogrens, or RA and Lupus, or maybe MCTD, or this, or that, with Raynaud's thrown in and the whole 9 yards that goes with all this stuff. I will also be glad when they finally figure out exactly what's wrong so myself and other's don't need to wonder anymore.
    Welcome to the group.

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