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Wednesday, June 18, 2014

The F Word

If you think this blog post is going to be full of curse words, you are wrong. Because there are some words that can feel far more ugly than swearing. For the last twenty-five years, my most-hated word, my f-word, has been flare. If you look up the word flare in the dictionary, you might see several different things. A flare can refer to a burst of flame or light, or the gradual widening of a skirt or pants. You may have emergency flares in your car. For a person like me, who lives with lupus, a flare means something different. With any chronic illness, a flare is a worsening of the disease's symptoms. All sorts of diseases can have flares, from arthritis to MS, fibromyalgia, and lupus, and lots of things in between. When you have a chronic illness, a flare is your enemy. For someone like me who has both lupus and fibromyalgia, a flare is something to be dreaded.

You may know that last December I spent four days in the hospital because of severe vertigo. I wrote about it in a post called Vertigo - A Horror Story. Being sick enough to be hospitalized is extremely stressful, and stress can trigger flares of various chronic illnesses, especially lupus. Just being in the hospital is very draining and takes some recovery time, but I found that I just wasn't getting stronger like I hoped. I assumed it just had to be the lupus and/or fibromyalgia flaring up a bit. More than one person suggested going to see my doctor about it, but I just couldn't make myself do it. When you try hard to be strong and know your strength is failing you, hearing a doctor say it can somehow make it so much worse!  It's kind of like working really hard to make or do something, and having someone point out to you that you have, indeed, failed miserably. Having your health be out of your control can be something that you take very personally.

So I've been taking things a bit slowly. My blog has suffered; I just haven't had the energy to put into my writing that I have had in the past. I have had brief periods of feeling more like myself, but now that summery weather is here, I've been knocked for a loop. The last couple of weeks have been a challenge. As can happen with lupus, I've been running a low-grade fever for a number of days. Why those symptoms can't happen in colder weather is beyond me! Having an internal space-heater when it is ninety degrees out is not that much fun. And the fatigue and lack of energy have been pretty constant companions in recent days. Getting some necessary errands taken care of today left me beyond exhausted. After a couple of hours of rest, though, I managed to get a simple dinner prepared and eaten. Okay, I managed to cook some frozen potstickers. Luckily for me, I have a husband who understands that I am truly struggling.

As I write this, I remember something that happened when I was first diagnosed with lupus, and was fighting with my immune system to keep it from doing any more damage to my kidneys. One of my favorite relatives was talking to me about what was going on with my health at a family gathering. It was just before Christmas, after all. She said something about feeling sorry for me because of what I was going through. I'll share with you what I said to her, because it is what I want to share with you. Don't feel sorry for me unless I give up. And if I do give up, don't feel sorry for me then, either. Kick me in the behind and tell me to keep going. So will you do that for me, my friends? Send some strengthening vibes my way, and if you see signs that I am giving up, kick me in the behind and tell me to keep going! This, too, shall pass.

Be well!