Lupus Brain Fog

Hey, come on in. Nice to meet you. I'm so glad you came over. Let's move over here. Oh, wow, look who's here.

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, because I am just forgetting everything.

I'm Eric.

Thank you. Well, you're the man, so you must be an Eric. And who am I again? I'm Christine.

You're Christine.

CHRISTINE MISERANDINO: I am Christine.

You're Christine, but I'm not Stacie.

I'm not Stephanie.

I am just so foggy today.

I think it happens to all of us.

Brain fog.

At one point or another, brain fog.

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 had forgotten it. Just on small things like that. But it's frustrating.

Yeah, it's not invited either.

No, it's not invited.

No, I didn't invite brain fog to come, but it's here.

STACIE COLLETT: One of the 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--

You should know.

--simple. Yeah.

Well, going along with that, it's scary when you're driving, and your way home that you drive every day of your life--

Yes.

STEPHANIE KENNEDY: --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 MISERANDINO: And you've driven point A to point B--

Several times.

CHRISTINE MISERANDINO: Several times.

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.

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

You guys have gone to the store, parked, and how many of you can't find your car when you come back out? 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 into the store, take another picture of the entrance. You're not wandering around for three hours after you've shopped trying to find your car.

CHRISTINE MISERANDINO: 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 you medicine. This is all on the door.

Organized.

And I'll just be like, 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.

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 to leave me notes to remind me that yes, he did say it, and yes, I need to get it done.

So how do we communicate to our loved ones the change that is occurring? Because lupus is taking another piece, if you may, of our identity.

As if it didn't take enough.

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.

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.

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 are forgetful one day and not forgetful the next. So they don't get it that it can come and go.

Sometimes, me personally, I don't want to vocalize it, because it reminds me--

Of what's going on.

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

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

Yes.

Right. And it's frustrating when, like you said, 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--

A reality. CHRISTINE MISERANDINO: --a reality and a part of that lupus puzzle. But you guys will have to remind me to accept it.