1. PC Sticky Notes – I keep a relatively icon and uncluttered desktop with one exception: PC Sticky Notes which came with Windows 7. On my ipad, I use Infinote. These come in handy to keep track of appointments, write down book titles or website names, homework assignment, to do lists, or random n
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I feel as though I spend all of my time trying to get my spoonie-self heard. I wear my spoon pin to work- every day. I remind friends, family, co-workers about treatments and such. On the days when I call in sick to work or cancel a social function, I remind these people what I am dealing with. You
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I have always been a big proponent of calling a ‘spade a spade’ and telling it like it is. I don’t want things sugar coated or watered down to make them sound nicer or less scary. Give it to me straight or not at all. This belief was reinforced during my last doctor’s visit. I had been
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“You ever had one of those wars where everything goes wrong?” Hawkeye, M*A*S*H
From the earliest history classes, we’re taught how it’s very hard to win a war fought on two fronts. You can easily be overtaken. If you start to ignore one front to concentrate on the other, you’re going to
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National Multiple Sclerosis Awareness Week is March 14-20. Multiple Sclerosis (MS) is a chronic, unpredictable disease of the central nervous system (the brain, optic nerves, and spinal cord). It is thought to be an autoimmune disorder. This means the immune system incorrectly attacks the person's
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Today was a lupus day. You know the ones that hit you like a ton of bricks the moment you wake up? You realize that your busy-for-a-spoonie-but-not-for-a-normal-person day yesterday has left you in a serious deficit today. Yeah…today was that day.
And then I had to play “Mom” to my two youn
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I have Lupus. I am passionate advocate for Lupus Research and Education. I have been to Washington, DC twice as an advocate for “Capitol Hill Advocacy Day” but this year I will not be able to attend in person. It is expensive to travel to the East Coast and this year I was unable to make the tri
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“I’m fine.” We say those words multiple times a day. How often does anybody ever really mean them? For those of us living with invisible chronic illnesses, do we ever mean it? If we don’t mean it, then why on earth do we say it?
We say I’m fine because it’s what’s expected of us, be
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March 9, 2011 – I will remember this day, Benlysta was approved and hope was born.
I will never forget the day I was diagnosed with Lupus. That was 18 years ago, and I am now 33. For those of you doing the math, that means I have had Lupus over half my life. Right now Lupus is incurable, so I exp
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March 9, 2011 – I will remember this day, Benlysta was approved and hope was born.
I will never forget the day I was diagnosed with Lupus. That was 18 years ago, and I am now 33. For those of you doing the math, that means I have had Lupus over half my life. Right now Lupus is incurable, so I exp
[ 32 comments ] | [ read more ]