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Coping With Lupus Brain Fog

11/03/2011

  • Christine Miserandino:

    I know this may sound silly. But before we even begin, I don’t even know who you are. So we need to just do this to help me out, cause I am just forgetting everything.

  • Eric Calhoun:

    I’m Eric.

  • Christine:

    Thanks. Well, you’re the man. So you must be an Eric. And ... who am I again? I’m Christine.

  • All:

    You’re Christine. (unison)

  • Christine:

    I am Christine.

  • Stephanie Kennedy:

    You’re Christine. Umm, but, I'm not Stacy …

  • Stacie Collett:

    I’m not Stephanie …

  • Christine:

    I am just so foggy today.

  • Stephanie:

    I think it happens to all of us ...

  • Christine:

    Brain fog.  

  • Stephanie:

    … at one point or another, brain fog.

  • Eric:

    And it doesn’t pre-warn us. It doesn’t say, “Hey, I’m coming in today."

    Before I came here, I was sitting at the computer, and I said, “Wow, man. My phone number -- I’ve forgotten it."  Just those small things like that, but it’s frustrating.

  • Christine:

    Yeah, it's not invited either. No, I didn’t invite brain fog to come, but it’s here.

  • Stacie:

    One of my neighbor’s little girls came over to our house selling Girl Scout cookies. And in the spot for the address, I went totally blank. You know, her mom’s standing there, and her little sister. And finally it came to me and I was able to write it down. But it was a very scary moment, to forget something that …

  • Christine:

    … you should know.

  • Stacie:

    … simple. Yeah.

  • Stephanie:

    Well, you know, going along with that, it’s scary when you’re driving on your way home that you drive every day of your life. And you know the directions like the back of your hand, and all of a sudden you’re driving, and you have no clue where you’re going. And that is a scary moment, because you’re driving . And you have no idea how to get from point A to point B.

  • Christine:

    And you’ve driven point A to point B …

  • All:

    … several times (unison)

  • Christine:

    … several times.

  • Stephanie:

    When it started happening to me regularly, I asked my doctor, you know, what's causing this. And they really do not understand, either. And I was like, well, I want a quick fix. I want to take a pill, and I want it to go away, and I want to be me again. And unfortunately that can't happen. And it's a part of us now.

  • Eric:

    All of us experience it in a different way. It may last longer with Christine or shorter with me and Stephanie, also. And so whatever we employ to make our lives manageable, then we have to just do that until a more scientific solution can come forth.

  • Stephanie:

    You guys have gone to the store, parked, and how many of you can’t find your car when you come back out?

    (Everyone raises their hands.)

  • Stephanie:

    Yes. Modern technology -- cell phone use. Use it to your advantage. Take a picture of your car, where it is. And then once you go in to the store, take another picture of the entrance. And you’re not wondering around for three hours after you’ve shopped trying to find your car.

  • Christine:

    I'd say for me, most days if I’m not feeling well, or even just busy and there’s too much, I mean, I literally, on my door to leave the house, I’m queen of these little notes. And I’ll put, "Don’t forget your keys." "Don’t forget your medicine." This is all on the door.

  • Eric:

    Organized. 

  • Christine:

    And I’ll say, "Lock the door." And, you know, my friends laugh at me. They see Post-Its all over the house, and this is my trick.

    I even have notes in my bathroom of, "Brush your teeth." "Take your medicine."

    I’ve left my own phone number by my phone. Because if someone says, “Can I call you back?” Sure, you can -- if you know the number. Good luck! (Laughter)

  • Stephanie:

    I think it’s important for the person that you’re living with to also use the Post-It notes. Because I have been told many times by my husband to do something. And then I will argue him down when he says, “Did you do it?”

    “No, you never told me to do that.”

    And he says, “Oh yes, I did.”

    This would be a wonderful thing -- for him to do too, to leave me notes to remind me that, yes, he did say it. And yes, I need to get it done.

  • Eric:

    Well, so, how do we communicate to our loved ones the change that is occurring? Because lupus is taking another piece, if you may …

    (Absolutely, Umm)  

  • Eric:

    … of our identity ...

  • Christine:

    As if it didn’t take enough?

  • Eric:

    … already.

    So how can we communicate this in a loving way that our family members can truly understand that we are powerless over this disease to a point, and that it's really affecting us psychologically?

  • Stephanie:

    Well, I think they have to understand that, yes, you’re going to get frustrated at each other. It’s going to happen. But, I think, along the lines of what you said, keeping the lines of communication open.

  • Christine:

    And I think too, it’s a matter of knowing and saying, "Today's a bad brain day. Tomorrow might not be. This afternoon might not be. But right now, it’s a bad brain day."

    And I find that that’s hard. Because the outside people, the outside public, our friends, our family -- the ones who are not experiencing it -- they just know that you were forgetful one day and not forgetful the next. So, they don’t get it, that it can come and go.

  • Eric:

    And sometimes, me personally, I don't want to vocalize it. Because it reminds me …

  • Christine:

    … of what's going on.

  • Eric:

    Right. And so it’s hard for me to say, you know, I’m losing it a little bit.

  • Stephanie:

    I think we’re harder on ourselves than anyone else could be.

  • Eric:

    Yes.

  • Christine:

    And it’s frustrating when, like you said, we know ... we know we should know this. And this is just now another exacerbation of lupus. And we have to accept it like any other symptom. We have to accept it like our joint pain, or our fatigue, or our rash, or what have you, because it is very much …

  • Eric:

    … a reality.

  • Christine:

    … a reality and a part of that lupus puzzle. But you guys will have to remind me to accept it. (Laughs)

Guest Expert What is a guest expert?

Christine Miserandino is a lupus advocate who writes, blogs, and speaks about living with lupus.

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