Lupus and Coffee: Where do I stand on caffeine?
Despite Lupus
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3w ago
I thought I had my stance on caffeine locked down: poor stand in for valuable sleep, can be detrimental to clear thinking, and brings unpleasant jittery side effect. But this multi-tasking, busy mother of two teens and small business owner who is forever short on time...isn't so sure now.  Know that I've never been a caffeine drinker. I had the occasional caffeinated soda or cup of coffee in college, but never got used to the sweaty palms or restless feeling caffeine gave me. So I avoided the stimulant and always chose decaf - herbal tea mostly, but coffee and sodas, too.  Even in my ..read more
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Lupus and Sleep: Renaming a Nap
Despite Lupus
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1M ago
By mid afternoon today, I was feeling pretty crummy about my productivity. I'd been particularly tired (probably from three late nights over the long weekend), and I had needed two naps   - one from 8:30-10:30a, and another for about 45 minutes this afternoon. When I made a mental list of the things I'd accomplished,  it felt like I'd done next to nothing. Here's what I came up with:  Got kids off to school Napped Finished a podcast Worked Out Napped again But then I thought - what if I said,  "Managed lupus fatigue" instead of "Napped"? Would that change the wa ..read more
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Lupus and Nutrition: Brownie Baked Oatmeal
Despite Lupus
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1M ago
Came across this recipe from Erin Lives Whole and thought I would share. This healthy baked oatmeal is delicious - chocolaty and just sweet enough to satisfy the girls. It's great for breakfast, or perfect for an afternoon snack.  I'm always looking for ways to incorporate oats into our diet - they often take the place of flour and I'm loving all the mix ins I can add to make yummy oat granola, oaty protein bites, or healthy oat "cookies" - shredded coconut, flaxseed, chia seeds, or peanut butter. The recipe below incorporates the changes I've made. To see the original recipe,  ..read more
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Lupus lifestyle: Add the good stuff to your to-do list
Despite Lupus
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1M ago
I made a list of things to do this week - a combination of work stuff, home stuff, and things for the girls. Some tasks will require an hour or two of my time, or even several days to get through. Others, I'll accomplish in 10 minutes or less.  It's funny what I deem important enough to write down. "Replace light bulb" is on there, but so is "design website for re-launch".  I see that my lists are a way to organize my time, but also remember the stuff I might forget, or motivate to do the things that I'm hesitant to tackle.  Actually, if I made a list of what I want to do, here ..read more
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Lupus and Fatigue: Nap when you need to
Despite Lupus
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1M ago
Question - how far does sulking about a lupus symptom get you?  Answer - not very.  So while I'm not happy about my new morning fatigue, I'm not being stubborn about it. Or neglectful. Or unhealthy.  I am learning not to fight it. I am attempting to make it a part of my morning routine - booking appointments and scheduling calls around the fact that from 8:30-9:30a, I need to sleep.  I've had to rearrange plans and miss outings. I choose to dress differently most mornings, knowing that in just a couple of hours, I'll be back in bed napping. I treat my afternoons a little di ..read more
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Lupus and Fatigue: A new Schedule changes everything
Despite Lupus
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1M ago
I lied.  Back in December, I told you my fatigue rolls into town once a day, every afternoon.  I told you it's part of my daily routine, one that I have accepted and learned to embrace. Here's the post. It's all true. But what I wasn't entirely upfront about is how I feel about unexpected fatigue. The fatigue that hits mid-morning, or right after school, or again around 7pm.  The kind of fatigue that gets in the way. That upends my plans. That forces me to change how and when I do things.  That kind of fatigue is not welcomed here.  It makes me resentful. And annoyed ..read more
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Living with Lupus: MORE THINGS TO avoid
Despite Lupus
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1M ago
Here's the last thing on my current list of things to avoid.  But it's a biggie, so it gets its own post:   *Avoid thinking or talking about lupus (or an unrelenting symptom) every five minutes.  This isn't easy, I know. When lupus symptoms are negatively impacting every aspect of your life - it makes it pretty hard not to bring up all the time. But I speak from experience. Doing so doesn't make it go away. It doesn't make it less significant or less disruptive.  In fact, I'd say it makes it more problematic.  Here's what I wrote on my blog more than 14 years ago ..read more
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Living with Lupus: Make Lupus Small - Things to avoid
Despite Lupus
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2M ago
In the previous post, I talked about the things I can do to make lupus small. Just as important, though, are the things I can avoid to make the disease behave.  I know. I know. Most of us do better with positive directives - DO 10 min of exercise daily, DO eat 4-5 servings of vegetables and fruits.  But there's an interesting article in Psychology Today that explains the value of both positive and negative types of thinking, which you can read here.  I think it depends on the situation.  For instance, I personally like the sound of:  DO eat a piece of chocola ..read more
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Living with Lupus: Make It Small - Examples of things to do
Despite Lupus
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2M ago
As of this month, I've spent 23 years living alongside lupus. I've tried many ways to make our relationship "work" during that time - over 1500 blog posts worth of trial and error!  But it wasn't until I was talking with my oldest daughter Deirdre that I remembered a piece of advice that I keep coming back to. A bit of wisdom that continues to work for me, no matter what the situation. Probably because it gives me an active role in scenarios where I feel very much out of control. Here it is:  Make lupus small. Make lupus, or whatever your personal difficulty,  as small as you po ..read more
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Lupus and Sleep: A Christmas ditty
Despite Lupus
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3M ago
 O nap of mine, o nap  of mine. Why do you make  me so mad? O nap of mine, o nap of mine. Why can't I just accept you? You're only here to make me better; so I can  sleep and feel refreshed. O nap of mine, o nap of mine,  why do I resist you so much?  (Sung to the tune of O Christmas Tree,         aka O Tannenbaum ..read more
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