“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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My Spoonie Vacation In My Mind

My Spoonie Vacation In My Mind

Recently, one of my doctors asked me how my many health issues affect my every day life? The first two words to pop into my head? “All encompassing.” And it’s true. My health issues affect almost every decision I make each day: what am I going to wear today, dress for comfort, hair in a pony t

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Dreams of Yesterday

Dreams of Yesterday

I had never run so fast in my life.  Even interval treadmill running to the motivating sounds of Guns n’ Roses in my ears couldn’t compare to chasing my 3 year old son across the entire length of the park.  I was in a full out sprint, my feet barely hitting the ground before moving to make roo

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What is Normal? Am I Normal?

What is Normal? Am I Normal?

Recently, it has been suggested to me that because I am receiving treatments regularly, the treatments mean that I’m not really sick. The assertion is that on treatment, I lead a “basically healthy” life and that I am “pretty normal”.  Well, let’s go ahead and examine this idea of norma

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Arm Yourself With Knowledge

Arm Yourself With Knowledge

I can't tell you how many times I've thought of a great idea only to forget it five minutes later. Then I get frustrated enough to pull my hair out because I can't remember what I was thinking about, and then five minutes after that wonder why I'm upset. The best part is when I completely forget the

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A Parent’s Love

A Parent’s Love

A thought occurred to me this morning, what is like for the parents of the chronically ill?  I have too many diagnoses to properly name, but the two prominent ones are Fibromyalgia and Lupus.  I first started showing symptoms of chronic pain around twelve years old, but did not actually have anyth

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Overcoming Cleopatra: Becoming More Than The Queen of Denial

Overcoming Cleopatra: Becoming More Than The Queen of Denial

With apologizes to Yogi Berra, chronic illness is 90% mental, and the other half physical. There are countless studies linking the physical pain to mental pain, and visa-versa. We all have experienced that stress can increase pain levels and that laughter can be a pain reliever. Often, chronic illne

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Finding a

Finding a “Home” of My Own

The year 2010 was a big year for me, disease-wise. I was going about my lonely, diseased business. I had been sick since 1995, diagnosed in 2007 and getting treatments for 3 years. At the very end of 2009, I was forced to switch insurance companies. The new insurance company denied my treatments for

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Hurry Up and Wait: Untold Stories of the ER

Hurry Up and Wait: Untold Stories of the ER

He had a half inch cut on his finger... it wasn’t even bleeding that bad and certainly didn’t warrant the barrage of “Grey’s Anatomy” style nurses snatching him up and herding him towards the coveted double doors.  I sat watching him like a hawk from the minute he walked in to the minute

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