• author
    • Jesse Loren

      Columnist
    • January 9, 2013 in Columnists

    My personal dance with the wolf: Lupus

    To know me is to love me!

    Lupus has several forms, the most well known are SLE and Discoid. I have the SLE. It’s systemic, which means it can be everywhere. Lupus is aptly named because she is  a wolf in sheep’s clothing. Most of the time people with Lupus look just like everyone else, but inside, the wolf is either resting or striking.  The rest period can last an indeterminate time. The active attack time is called a flare.  Lupus is often referred to as an exacerbation-remission disorder.

    From the outside, it’s probably obvious many lupus patients have a face rash. It’s generally over the nose like a butterfly. The musician Seal has scars from his Discoid Lupus. My rash is on forehead and scalp, and I believe it’s because I apply sunscreen to my cheeks and and nose and often forget my forehead and never treat my scalp.

    Lupus patients are sun sensitive; many can have a flare just from being exposed to the sun. We make good Goth girls! The body rashes can be harsh.  I had one for about six years with no relief except while taking large amounts of prednisone. Imagine a Gothy spotted Pink Panther.

    Fatigue and weird blood work are both common with my lupus. I’m chronically anemic, low red blood cells, high white blood cells, and I get macro red blood cells. I see them as deformed red blood cells that look impressive but can’t do their job. With fatigue and weird blood work, many lupus folks have chronic depression. Are we depressed because we live with chronic illness, or are we depressed because of the disease activity? Probably both. Lupus affects the central nervous system, balance, neuropathy, fatigue, liver function, kidney function, lung function, skin, eyes and joints. Let’s not forget the joints.

    The joint pain is constant.  For me, when I try to sleep, I am reminded of every spot that touches my very expensive foam mattress. I turn and turn like an iguana on a spit. In the morning, when my feet hit the floor, they hurt and are swollen on the bottom. Most of the time it is as if they are fused through the ankle. It takes a bit to get them moving in a fluid fashion. I look more like a Gothy spotted Pink Panther robot.

    The joint pain settles in ankles, feet, hips, hands, shoulders, knees. The funny part is, I feel best when I am moving. The gentle motion of a light jog feels great. When I stop or sit, the joints freeze up again. My better angels want me to do a Walker 5K! I think I can do the 5K, but the standing around before and after is just as exhausting as the running, maybe worse. I think I need the walker.

    Why the hell is this happening? The immune system attacks the body as if it were identifying foreign objects. It’s a lot like friendly fire. (Stop shooting! Those are our own men!)

    My lupus requires a general doctor and a rheumatologist (rheumy). My rheumy has me taking generic Imuran and Benlysta infusions, plus a host of other drugs that help tweak this and that.

    Benlysta is a disease-modifying drug administered through infusion. I get an IV of a medication to prevent reaction, medication to prevent nausea, then the Benlysta. It takes about three hours. I sit very still and feel gratitude for the medicine that is cleaning out the friendly fire bullets. Afterward all I want to do is sleep. It feels weird for the first few minutes of the IV, but after a few minutes, I feel fine. I get the Benlysta once a month.  It is exorbitant and it works. For me, I can live a normalish life for the first three weeks before the infusion. The last week is hardest.

    If I am a light sensitive, fatigued, achy Pink Panther with spots, I am also full of the desire to run, smile, decorate, garden, laugh and love. However, like anyone with chronic illness, I can get pissy, moody, tired and overwhelmed. Is there anything you can do?  I’ll probably overextend myself. I’ll probably cancel some plans. Just roll with it.

    What is Lupus:   http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnunderstanding.aspx?articleid=2231&zoneid=523

    Depression and Lupus:          http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnclinical.aspx?articleid=4857&zoneid=531

    Picture of Seal and explanation of his Lupus:   http://www.health.com/health/gallery/0,,20462443_3,00.html

    Disease activity score:  http://www.rheumatology.org/practice/clinical/indexes/sledai.asp



    • I worked for a rheumatologist for a little while and it was painful to watch people with lupus. That was back when they injected gold into the joints. I understand they have great meds today and it seems you are on them Jesse. I am sorry you have days of struggle but your posts are always so positive and full of adventures.



    • If anyone wants to talk about it, I'm available.


      • Chelsea Greco

      • January 9, 2013 at 8:40 pm
      • Reply

      Great article. Always great to read pieces written by the actual patients as opposed to being written by a doctor or a medical professional.



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