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Thread: I'm new, I've had my diagnosis for 1 month

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    Default I'm new, I've had my diagnosis for 1 month

    From what I've read here, it looks like Lupus effect each person differently. I've had all sorts of "flares", they seem to happen every 5-10 years. Being told I had Lupus was actually a relief. Isn't that crazy? It answered the question of "why are all these medical conditions happening to me. The list of destruction is long. Adding the lupus meds to my long list is disheartening. My main problem is taking all these meds 3 times a day and trying to remember what I took. Actually reading about the brain fogs, I think someone called it that, was very helpful. Short term memory loss can be chalked up to every single thing that's now wrong with me.

    I want to thank the ones behind the scenes here for being here.

    Nonna

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    Welcome to the forum and im sorry you have had the Lupus diagnosis but yes the foggy days are frustrating.I set my phone so it goes off telling me what to take when my fog is there.Sometimes i'll take my meds go and sit down then come back to take them again But i know i took them as they are in a weekly box with the days n times on the box.Yes sometimes i think,now did i fill the box up,but the answer is always yes,so we all understand you.Hope today is a good day for you.Catch up with you soon.

    Love 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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    Welcome to WHL Nonna! It's a fab group of great people who will support you, laugh with you and help you navigate the waters of SLE.

    It is not crazy to feel relief when you finally receive the diagnosis. If that were the case, we'd all be certifiable. Lupie-yes; crazy-no.

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    hi nonna,

    welcome to a wonderful group of people who truly care about each other. This is a place where you can get the answers to any questions, and where you can find a shoulder to lean on if need be.....welcome, and enjoy your time with us.
    Phyllis

    share a smile today

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    hi nonna and welcome i understand your relief we al feel the same way it was hard for a lot of us to pinpoint what was wrong with us and get doctors to believe us just having a name for our illness was a relief to most of us and just know we are here for you to chat when ever you need hugs kim l

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    Thank you all, it's been really hard to know whether a symptom is the result of a condition or the lupus/SLE. But knowing that you are all out there and I can get opinions is going to be a great help.

    Life is great, enjoy it to the best of your ability.
    Nonna

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    Quote Originally Posted by Nonna View Post
    Thank you all, it's been really hard to know whether a symptom is the result of a condition or the lupus/SLE. But knowing that you are all out there and I can get opinions is going to be a great help.

    Life is great, enjoy it to the best of your ability.
    Nonna
    "Life is great, enjoy it to the best of your ability"...

    I like that, I like that alot! Anyway, Hi Nonna. I'm Rob, and I was diagnosed with SLE in 2004. Being told you have Lupus, and feeling a profound sense of relief, may be crazy in other people's worlds and lives, but here, for us, it's normal. I smiled when I read that because I felt the same way when I got my diagnosis. To be relieved when you finally have an answer to what is causing mysterious, and alarming symptoms, means you can then pursue a treatment and start keeping those symtoms under some control. That's a good thing.

    Like you, one thing that haunts, challenges, and frustrates me most days, is cognitive dysfunction, AKA brain fog. Often I cannot write well, or spell simple words. I lose my train of thought easily in conversations with people, I find things like Windex in my freezer and bread in the medicine cabinet. It can sometimes be pretty funny, but mostly it makes me feel as though I'm losing my mind. Not much fun, so I slug through it and endure the bad days, while embracing the good ones and enjoying them for everything they are worth, much like your saying that like so much.

    Anyway, looks like you've already met some of the gang. I thought I'd say hello, and welcome to our group. We are a laid back bunch, so please make yourself at home, and feel free to join the conversation wherever, and whenever you please.

    Rob
    Moderator
    Last edited by rob; 01-02-2010 at 07:30 AM.

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    dear nonna i know the brain fog is bad i am also like rob misplace things and put them in the wrong place my spelling has become bad because my mind wanders while in hospital last year i forgot my kids names i have found a cork board or white board are good things to use if you need to remember things and have become a vital part of my life now for memory purposes hugs kim l

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    Hi Rob, I like your tag line also - leave lupus, take cannoli. Although I'd rather have my Nonna's Christmas cookies.
    Thanks,
    Nonna

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    Thanks Kim, I'm getting to that point, haven't reach it yet; but close to it. as for misplacing things - it's where did I leave? It's also hard in that it's also a symptom of hypothyroid, and parkinson's. both of which I'm dealing with. I've so many Doc's at this point that I'm going to have my GP co-ordinate for me.

    Nonna

    Remember Enjoy Life to the best of your ability

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