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Thread: I'm not stupid, I have lupus

  1. #11
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    I have a binder at work this is my bible of my job! I refer to it everyday and dont let it go more than two inches from me!

    I would be a lost puppy if someone took it from.

    Keep your head up Ruz!!

    AmandaPanda
    "We're all in the same game, just different levels. Dealing with the same hell, just different devils.

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  3. #12
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    Ah, so lupus can even effect your memory too? No wonder when someone first tells me their name I forget it in under a minute. Very sad....Is there any way we can improve our memory?
    Living with Lupus Nephritis is not difficult but just a challenge.

  4. #13
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    Not that I'm aware of, other than to "exercise" it. I've tried to get in the habit of repeating someone's name, such that someone goes "Hi, I'm Bob!", I don't just go "Hi, I'm Rick", I now try to go "Hi Bob, I'm Rick. Nice to meet you Bob." I might try to make a joke of saying the other person's name many times as I talk, with something like "Sorry for saying your name Bob so many times Bob, but I'm afraid I'll forget it, Bob."... Everybody thinks I'm nuts. I am, so I go with it... lol - I also play mind games, including Minesweeper and Freecell on the computer, where you have to really think... then I get frustrated and close them... lol

    Lupus does my memory bad, especially short-term. Then there's the "fog" with the flares... The wife will claim that she told me on Monday that we had to be at the school at 6:30 on Wednesay, so where are I?... She never told me. Then she showed me the video on her smart phone... YIKES!!! So now I'm learning how to use the voice record thingie on my cell phone, and trying to remember to write notes about everything, and then trying to remember where I left those notes...

    What were we 'talking' about?...
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

  5. #14
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    i was diagnose with lupus 25 years ago, and i didn't know till few years ago that lupus could or can affect memory. Before I didn't believe when my husband told me that I had already tell him something several times or when I blamed him because he didn't do something I thought about telling him to do but I really never did because I forgot ,but in my mind i did it. It was so hard to accept no because I didn't wanted it but because I didn't believe it until my kids start telling me the same my husband been telling me for long time. I start reading and find out that because my lupus i have bad memory, wonder how non of my doctors never told me about. Now I writing everything down, I have POST IT notes all over the walls, I'm learning to live with my memory problems.

  6. #15
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    There's not a single "stupid" person here in my opinion. Every single person with Lupus who I've ever met in person, or met here on WHL, has been quite intelligent, and incredibly insightful.

    Our problem isn't a lack of intelligence. It's an inability at times to be able to access the information we have in our heads. I usually know exactly what I want to say in a conversation, but when the brainfog is acting up, I can't articulate the proper words even though I know what I want to say. There is a disconnect somewhere between my thought process and my voice.

    I try to explain this to people in the terms of a debit card-

    Let's say you find yourself in a situation where you really need some cash, and you need it right now. So you find an ATM, and you insert your card into the slot, but you get nothing but an error message because the magnetic strip on the card has been damaged. It's a common, and frustrating problem. You have the money you need right now, but you cannot access it until the bank opens the next day, and or/you get a new card issued. Now, imagine that the money you desperately need, but cannot access, is your memory. Some people understand the analogy, and some don't.

    In regards to short-term memory loss, all I can say, is that there are plenty of healthy people who cannot remember worth a darn, what's their excuse?

    We have a very real, very legitimate reason for why we are the way we are. We didn't ask for this, and it's nothing to be ashamed of. Don't let those who may talk down to you, or think you are stupid, get to you. Many of those kind of people are unable or unwilling to understand other's problems and challenges, and some are unable to feel any empathy towards other people at all.

    Given the choice between being a person devoid of empathy for others, or having to live with Lupus and brainfog, I'll take the Lupus, and the brainfog everytime.

    Don't let 'em get you down,

    Rob
    Last edited by rob; 11-09-2012 at 01:51 PM.

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  8. #16
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    Amen, brother Rob.

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    Quote Originally Posted by rob View Post
    .............Our problem isn't a lack of intelligence. It's an inability at times to be able to access the information we have in our heads. I usually know exactly what I want to say in a conversation, but when the brainfog is acting up, I can't articulate the proper words even though I know what I want to say. There is a disconnect somewhere between my thought process and my voice....................We have a very real, very legitimate reason for why we are the way we are. We didn't ask for this, and it's nothing to be ashamed of. Don't let those who may talk down to you, or think you are stupid, get to you.......... Rob

    some great words of wisdom.

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    Rob,
    I'll borrow that analogy. I saw a new neurologist last week, and I was trying to describe my memory lapses to him. I've noticed that it's usually a noun that I "lose". I also know just what it is that I want to say, but I just can't say that word. Sometimes I can think of synonyms, so it's like I'm playing a word-guessing game with the person that I'm talking to.
    Hugs,
    Marla

  11. #19
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    I used to be a walking thesaurus. With everything going on, I'm lucky to put a complete sentence together. Sadly, my memory lapses have definitely impacted my confidence. Recently, I had a promotional interview and BOMBED it horribly. I'm not beating myself up over it, though. Obviously, I wasn't meant for that particular job.

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    BonusMom,
    Hang in there, girl. We're all here for you.
    Love and Hugs,
    Marla

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