• Lupus fog

    by Jesse Loren

    Unlike the Sacramento Region, which, as it approaches 30 degrees, sends out a freeze warning, there is no fog warning for the Lupus brain. I don’t pretend to understand it, but Lupus creates inflammation, and the inflammation gums up connections in the brain, making it hard to think.

    Imagine all your friends have MacBook Pros with software updates and fast connection speeds, but you have Vista, dial up, and no virus protection. Your computer can’t even open the right program in the time it takes your friends to complete an assignment on theirs. It is this way with Lupus Fog.

    In a Lupus Fog, I think I have said a name, but some other thing zips out. I try and answer basic information, like what year my daughter was born, and all I get is a 404 Error: File Not Found.

    It’s generally fine if I am alone, if there is silence, if I can pace one job and nap between steps without pressure to finish. But teaching is not that kind of a job.

    I work with high school students. Our student-teacher ratio for English is 39:1. Every hour brings a new group of students, five times a day.

    When I started teaching ninth grade the ratio was 20:1. It was kinder to kids. It was kinder to teachers. With class sizes that have almost doubled, and more special needs kids pushed into regular education, the profession demand during each hour is staggering. Making slow, methodical decisions is a luxury I don’t have, and the Lupus Fog gumming up the synapses has made it nearly impossible to work.

    Another contributing factor to Lupus Fog is the plethora of medications Lupus requires. My pill salad helps with inflammation, keeps physical symptoms from worsening, allows my immune system to stay in check, reduces pain, and reduces swelling. However, all those drugs also make my organs work harder. Even the brain organ.

    I am tired.

    I don’t want to be tired. I don’t want to be cranky. I don’t want to not remember your name. I don’t want to forget appointments. I don’t want to sit perfectly still after work, but sometimes that is all I can do. And if Lupus isn’t taking its toll, the medicine is.

    Lupus is a lot like any other exacerbation-remission condition. There are good days and bad days. On the good days, I’ll be at Main Street Cellars having a glass of red wine with my friends. On bad days, I am exhausted and can’t work.

    The hardest decision I have had to make as an adult is upon me: Disability retirement or more years at this pace. On the outside, I look fine: Sunny with little chance of rain. But on the inside, the fog warning is high and the check engine light is flickering.

    • Jesse, so sorry to hear Lupus is taking it’s toll on you. I once worked for a rheumatologist whose specialty was Lupus and I saw what happens when one does nothing and when one takes all the medications. It is a very tough disease on the organs and immune system. I can only imagine the pain you go through on your bad days. Is there a way you could job share so that your workload is lessened so that you can still do what you enjoy but with less days? I know you will work out what is best for you and your family.

      • Jesse

      • January 22, 2012 at 11:04 am
      • Reply

      Madgew, the deal with job share or half days is that the pay is half too. I can retire and get that pay and have time to do other things. I guess what I want to know is if other people have made the decision or had the consequence of early retirement; and what happened or what did they wish they planned out?

      • Judy N

      • January 22, 2012 at 4:49 pm
      • Reply

      Jesse, I’m really sorry about the health issues. I had them too but of a different sort. I didn’t retire early but I did retire and can live on what I have in retirement and social security. At first I was sure I couldn’t do that and worried a lot about the money, but it’s worked out well. I think the one thing I didn’t know was how important it would be to have projects to work on. I had in mind that I would write non academic things and I started and once I started I realized that I would have felt lost without it. That would be my one piece of advice. Think about what you want to do and then work at a pace that feels good. I also found that I had to force myself not to work too much. I was addicted to adrenaline wasn’t used to having a balanced life!

    • I would seek out a good financial planner who knows how much you will need and approximate social security. I probably work until the pain was just too much as I think all are dependent on salaries at the end of a career. It determines pension and retirement payouts. Also make sure you check with disability with the state because sometimes what you get offsets your social security payments.

      • Jesse

      • January 22, 2012 at 9:19 pm
      • Reply

      Thank You Judy. It looks like my mom is also in need of care. I’ll have health, projects, writing, a kid at home, marriage and mom to care for with her dementia.

      • Jesse

      • January 23, 2012 at 8:14 pm
      • Reply

      As part of STRS, I am not entitled to Social Security. I am not sure if my daughter is though. I wouldn’t get my pension and how long I work doesn’t effect disability retirement. For our system, disability retirement is based on averaging one’s 3 highest years of pay, then the payment is 50 percent of that until death. That’s decent. It’s no Speaker of the House paycheck, but that’s what it is and the earlier the better is what STRS recommends. Because the amount is already topped out, the only way to make that much in retirement without retirement disability is to work 10- 15 more years. Yuck.

    • I think you are a blessed woman. The overcoming of hardships is what makes you who you are, I don’t know you really, really well but I still think you’re great and capable of great deeds upon this Earth.

      • Kate

      • February 3, 2012 at 10:12 pm
      • Reply

      Jesse, this is a beautifully crafted piece on a heartbreakingly difficult situation. There’s much to mourn, and yet you thoroughly sidestep the Misery Wallow in this and instead turn out fantastic prose. “On the outside, I look fine: Sunny with little chance of rain. But on the inside, the fog warning is high and the check engine light is flickering”: she shoots, she scores, the crowd goes wild.
      As to looking fine on the outside while the inside is anything but: A friend and I have long joked about needing warning signs to ward off that kind of comment. Really, though, we joke because it keeps us from (a) crying, (b) wanting to lash out at the person who says the “but you look so good!” thing, (c) all of the above and more. I know people say that usually because they mean it in a nice way, but it so often feels like they’re doubting the veracity of the person who is dealing with not feeling well.
      At the risk of sounding pedantic or Pollyanna-ish, here’s one way of seeing the difficult decision you’re facing: If you take disability retirement, the high school teacher chapter ends [hard for me to even type that]…. BUT a chapter in which you’re able to rest enough and take care of yourself enough that your quality of life improves may well commence.
      Whatever decision you make, and whatever life throws at (or to!) you, I wish you all the best.

      • Jesse

      • February 4, 2012 at 5:01 pm
      • Reply

      Thank you for the kind, warm comments.

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