• Brain Function, Lupus and Where Did I Put My Keys?

    by Jesse Loren

    Lupus SLE, my autoimmune disorder, comes with some special perks. It’s not a giant fruit basket in the Green-room, or bowls of blue M&Ms, it’s brain fog. And not your garden variety, over 40, menopausal, mad-cow disease many women get. It’s worse.

    It’s sort of like having a hangover, the kind where your brain feels 5 sizes too small, except I didn’t drink. All I did was wake up that way. And it’s been months…

    It isn’t quite dementia either. The Lupus Foundation of America describes brain fog as “difficulty completing once-familiar tasks, remembering names and dates, keeping appointments, balancing a check-book, paying bills, processing thoughts.” For me it is worse than that combined with S-L-O-W (but accurate) recall.

    Imagine you remember you have an appointment with what’s-his-name and you know for sure you won’t remember where the office is, so you try and look it up, but can’t remember his name, and you know the building is a landmark building, so you try to remember the name of that, and you can’t. In fact, you just woke up but feel like you were run over in the night. Everything aches; everything feels like crap, even blinking takes on a slow, sticky feel. There’s no smell of bong water around, so you know you aren’t high. The phone rings. You answer it and try to talk, but the words don’t come out right. You think you sound like an idiot, so you get off the phone, pick up the computer to look for clues of what the heck you are supposed to remember, but you are still steeped in a fog so thick a Range Rover can’t drive through it.

    Mine got bad enough that I would get lost on familiar roads; I’d feel like I had a disorienting migraine, but no headache, just all the stupidity and twice the confusion. I got scared. I finally talked to my doctor about it, and it took two months to work up the courage to schedule an appointment.

    What if they find out I am crazy? What if they put me in a home? What if it is something even worse than Lupus? Do I really want to know?

    It seemed the more I thought about it, the more I worried. The more I worried, the more anxious I’d become. The more anxiety, the less I could sleep. Less sleep, worse concentration and memory. YIKES!

    The only beauty of brain fog is forgiveness. All the bad things get foggy too, so grudges get less grudgy. That’s a good thing.

    One reason to find out what it is is to get a baseline of what is happening in order to do comparisons later on. Another reason is to detect the problem in order to focus on solutions.

    I finally got the brain appointment, went in for the 6.5-hour battery of tests, and got my results. I am not stupid; but I now process about as fast as a bullfrog.

    My mind needs time. It gets it, but slowly. When I get anxious or frustrated, it’s really bad. My brain has a cognitive disorder, and it’s having a bad hair day. Everything soaks in there, but the processing speed has slowed. There’s also the issue of pain management. Pain undermines concentration, and like many Lupus folks, I have constant pain. And the headaches. Apparently they are “atypical migraines.” All the migraine symptoms other than the headache.

    So, what does one do when they have a demanding job, a demanding schedule, and a Commodore 64 brain in an Intel processor world? What do you do?

    First, forgive yourself. Be kind and learn to smile before firmly stating, “I’ll need to get back to you on that.” Learn to buy time, and remember to follow through.

    Second, build a new regime. Mine will include B vitamins, more sleep, exercise, a cognitive or behavioral therapist, massage, puzzles and games on my iPad, Devonthink software, and more organization and preemptive planning for things that require quick problem solving.

    In the meantime, I wonder what tips other people have for maintaining a healthy brain. As long as it doesn’t involve porn or religion, I am all ears!

    • Read “The Ultramind Solution”!!!!
      Great column… hang in there. I know this is a loooong slow battle… You have been/are inspirational as you deal with this. I think your regime should also include “Spend time with people who love me!” 😀

      • Norbie Kumagai

      • May 4, 2011 at 12:27 pm
      • Reply

      Hello Jesse: You recently commented on one of my “Blah, Blah, Blah” (a.k.a. “Norbie’s FB Notes”): “David is pretty awesome and Norb, you are too! I’m glad to be your friend.”

      As I sit here and read your column, taking a deep breath and saying a quick prayer (my Aunt Carol suffered from Lupis throughout her adult life), there is a sense of humility to your writing… I constantly shake my head in absolute amazement about the enormous character & caliber of you iPinion columnists.

      Much Love, Strength, Thoughts, Prayers, Friendship & Support Jesse!!! I am truly humbled to be considered a friend.

    • I enjoyed this share so much. It’s so honest, authentic, and you’ve managed to keep a sense of humor despite it all. Tips for maintaining a healthy brain? Studying a new language keeps the synapses firing even if one doesn’t take command of the language. I send you prayers, blessings and love Jesse.

        • Jesse

        • May 4, 2011 at 7:01 pm
        • Reply

        HANNAH, I had a good day today. Felt great all day and less joint pain. I was almost skipping after school. Anyway, I picked up some take out and picked up something to read, it was in Spanish. Although I haven’t had a Spanish class in years, I could read it. It was so inspiring. OK learn a language, GOT it. I am getting a loaded iPad with learning games and SMART software. Norbie, we are all pretty cool peeps and I really am glad to be your friend too. Deb, it’s a long slow battle, but today, check one for the Jesse column.
        Lupus 0 Jesse 1.


    • Jesse, your story is so touching and I feel for you. I remark because you are so positive and forward thinking. Just keep doing what you are doing because your writing reflects an energy in life and finding answers. You are truly amazing.

    • Jesse,
      If I were a really, really smart guy, I would have some great advice. Unfortunately, I am not smart, however, I do think that you are a lovely young woman that can handle all that is tossed in your path. You may shed a few tears but in the end, I know that you will kick some ass in a royal manner, when you need to.

      • Jesse

      • May 5, 2011 at 5:45 pm
      • Reply

      Something happened to my comment… But suffice it to say, You guys all rock and I have had two very good days! J

      • maryruth

      • May 6, 2011 at 8:05 am
      • Reply

      Dr. Amen talks of the benefits of exercise (creates neurons) followed by a learning activity (Locks in new neurons). You are doing a lot of things already – diet, supplements, sleeping.

      I know where you are coming from. I go through the same thing. People think I am nuts how I can remember something one time and not the other. I hate the brain fog of this disorder.

        • Jesse

        • May 6, 2011 at 8:12 pm
        • Reply

        Maryruth. I’ll try that. Maybe reading at the gym really is a great idea. I guess watching television is not.

      • admin

      • May 6, 2011 at 9:42 am
      • Reply

      Jesse: Your comment is still there. When you hit “Reply” to another comment it becomes part of a string. You will see a little “+” sign under the comment you replied to (in this case Hannah’s). Just click on the “+” and it will expand and reveal your comment.

        • Jesse

        • May 6, 2011 at 8:11 pm
        • Reply


    • This sounds familiar. And I’m tired of it. I think we should rebel. F#*k CHRONIC PAIN! We’re not going to DO it any more! Get someone else’s joints and brain to screw around with autoimmunity. Jesse and I have HAD ENOUGH.

      Everything will be better soon. I’m just sure of it. Love you – spirng.

    • Hey, Jesse,

      Good job. I had no idea. I’m sorry.

      Cod liver, primrose, borage oils. Nettle infusion (a little salt makes that taste better). Maybe raspberry leaf too. You eat your own eggs, don’t you?

      Let me know if you need anything.



      • bigmama80

      • December 14, 2011 at 11:32 am
      • Reply

      Hello Jesse,
      What a great article. In this piece you have paraphrased the last two years of my life. Some days I am “on fire!”, and other days I feel like someone flashy thinged me from the men in black. You have given me the courage to talk to my doctor in a way that truly explains the way I feel. I pray you strenght and healing in Jesus name.

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