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Life in the Dark

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We never know what cards life will deal us; sometimes you have the winning hand, and other times you must make the best of what you have been dealt. Recently I was delt a not-so-great hand, and I am learning to adjust and make it my winning hand.As some of you might know, last year, I was diagnosed with Lupus. Lupus is an autoimmune disease that makes your body self-destruct. Ordinary, healthy people have an immune system that works properly and kicks into gear when something foreign and unwanted is in the body. It helps clear infections and gets ordinary people back to their healthy lives. Life with Lupus is quite different; your immune system thinks that things like your skin, heart, and kidneys are foreign invaders and will attack them. This can cause organ damage or even organ failure. (To be clear, there are different kinds of Lupus, and I’m talking about systemic lupus erythematosus. People with discoid Lupus usually only have skin involvement.) Lupus is a chronic, lifelong disease with no cure. However, most people don’t experience symptoms continuously. Instead, there are different times when symptoms appear, known as lupus flares. How long flares last vary from patient to patient, but symptoms can typically persist from a few days to weeks at a time.

Along with Lupus, I discovered I had a sun allergy. Yes, I am allergic to the sun. They call it Solar Urticaria. Solar Urticaria is a rare form of chronic inducible urticaria (hives) in which the skin swells within minutes of exposure to natural sunlight or an artificial light source emitting ultraviolet radiation. The reaction may subside within a few minutes, or it may persist where it can become very disabling. The hives can occur in minutes for people with this reaction. Burning and a sensation of stinging may occur at first. The rash fades over days to weeks. In some cases, the skin may darken after the reaction. Not only does this cause my skin to be crazy, but it also causes me to have headaches and become very sick to my stomach. All effects from those UVA/UVB rays then start working on my Lupus, causing me to have a flare-up, which makes me feel bad, making very miserable days and nights. Learning to live with my condition has been very challenging for me. I don’t like taking a bunch of medicine, I love the outdoors, and I don’t always listen to my body or my doctors. But I learned I must take responsibility for my health, my body, and its care. I must listen to it when it says you need the rest. I must make sure I am eating better to help my body stay healthy. I am learning that sometimes things you need to get done can wait just a little bit longer.I am also learning to protect my body when I am outside or even if I am indoors.

Yes, I must watch the fluorescent lights as well. They will cause me to break out and feel bad, just like the sun, while I am just working on the paper in my office. Yes, I know it’s all strange to me, as well. I sort of feel like I am becoming somewhat of a Vampire. I am learning to do my outside chores after the sun has come down. Keeping low lighting. I had to change out all my curtains for sun-blocking curtains in my office and at my home. I must wear certain protective clothes (I even break out under my clothes with long exposures). If I don’t wear the clothes, I must cover myself continually with sunblock. I even try to keep my office fluorescent lights off as much as possible, only working with a desk lamp to keep those UV rays at a minim. I start my day with head-to-toe sunblock, steroid cream, and an antihistamine. Only to have to repeat applying the sunblock lotions around lunchtime. I then end my day with steroid cream and another antihistamine.

I will tell you these changes and daily steps I am learning to do, helping me feel so much better than what I was feeling before my diagnosis. So, if you come to visit me at the office and it’s a bit dark, or you see me around town, and you happen to notice strange spots or hives on me, or it looks like I’m a little overdressed for the hot day, just understand my new life with sun allergy and Lupus. Remember, I am not contagious; it’s just my reaction to those UVA/ UVB rays.

If you have any tips or tricks you would like to share on just simplifying your life or pet’s life or any questions for me, email me at