The Professional Patient Safety Tips

The Professional Patient Safety Tips

National Patient Safety Awareness Week was observed the beginning of this month. So, in the spirit of that week, here are 10 tips for keeping yourself safe with living with health conditions and being in and out of clinics and the medical systems. 1. Keep an up to date list of medications. Bring

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When You're Not Sick Enough

When You’re Not Sick Enough

Before I even get started with this article, let me state for the record, that for those who have been approved for short or long term disability, you deserve it. You’ve suffered just as much, if not more than any of the rest of us and I do not begrudge you a thing. In fact, I understand that it�

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5 Tech Features To Make Life Easier

5 Tech Features To Make Life Easier

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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“Nice To Meet You…I’m the Sick Girl”

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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Keepin' It Real: Terminology For The 21st Century

Keepin’ It Real: Terminology For The 21st Century

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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Losing the Battle...But Winning the War

Losing the Battle…But Winning the War

“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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The Luck of the Spoonies

The Luck of the Spoonies

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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Proud To Be A Lupus Advocate From Home

Proud To Be A Lupus Advocate From Home

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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“Thanks for asking…but I’m fine.”

“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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Benlysta Was Approved And Hope Was Born - A Lupus Patient's Perspective

Benlysta Was Approved And Hope Was Born – A Lupus Patient’s Perspective

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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