A New Year’s Day message from a 'Silent Spoonie'

A New Year’s Day message from a ‘Silent Spoonie’

I’m a butyoudontlooksick.com “regular.” By that I mean I read all the posts, follow on facebook and stay updated via Twitter.  However, I have never commented or responded to all the wonderful words or stories from the digital support group Christine has created.  That is, until now.  See,

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Lost in the Land of the Undiagnosed

Lost in the Land of the Undiagnosed

Sometimes I feel lost. Lost behind the world of the diagnosed. There are no fundraisers for me. No walks, no T-shirts, bracelets or ribbons. I am the lost within the lost. Aren't we all in some respect? Trapped by our bodies and lost to the world. A Spoonie KNOWS what it feels like to cry in that

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Twentysomethings and Lupus - A New Generation of Friendship and Fundraising

Twentysomethings and Lupus – A New Generation of Friendship and Fundraising

Back in June I received a facebook message that changed my life.  My friend from high school, Jessica Glazer, sent me the following: “I have an idea I want to talk to you about.  I was thinking of having a party to raise money to contribute to your Lupus fundraising efforts.  It could be a pla

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From a Reader: A Spoon Finally Big Enough- Well It’s Close!

From a Reader: A Spoon Finally Big Enough- Well It’s Close!

[caption id="attachment_2157" align="alignleft" width="300" caption="Kimberly and Christine holding HUGE spoon"][/caption] The adventures of a spoonie are always exciting, rarely uneventful and usually include some serious preparation and legwork prior to the adventure at hand.  So naturally the

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We're All In This Together.... My Experience Meeting Christine and Other Spoonies at the LFA NC Lupus Summit

We’re All In This Together…. My Experience Meeting Christine and Other Spoonies at the LFA NC Lupus Summit

I’ll admit it…..I almost backed out at the last minute.  I had been planning on attending the LFA NC Lupus Summit for some time now and had visions in my head of overwhelming knowledge and epiphanies coming my way.  I dreamed of finally being in a room filled with people who didn’t ask me ho

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Diamonds, Capes and Spoons……YOU are a superhero too.

Diamonds, Capes and Spoons……YOU are a superhero too.

It wasn’t long ago when I heard Rob Thomas’ song “Her Diamonds” for the first time.  It was in the car after frantically changing the channel from a Disney star that shall not be named *coughmileycyruscough* much to the objection of my two Hannah Montana obsessed pre-teens in the back seat.

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The Mommy Diaries, A Letter To My Pre-Teen Daughter

The Mommy Diaries, A Letter To My Pre-Teen Daughter

It didn’t seem that long ago that I was right there in her Converses, thinking that life would surely end if “that guy” didn’t like me back, or if I didn’t make the cheerleading squad. It’s amazing that when you are a pre-teen, embarking on those formidable years that I found out later m

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When Your Mother Has Lupus: A Daughter’s Perspective

When Your Mother Has Lupus: A Daughter’s Perspective

Being a daughter of a Lupus patient is a unique way to grow up.  I do not have the disease myself, but experienced many of its effects through my mother.  She was diagnosed when I was a year old, and lived with Lupus until last June when she passed away.  I was twenty-two years old when she died,

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Confessions of an Unapologetic High-Maintenance

Confessions of an Unapologetic High-Maintenance “Spoonie”

I am unapologetically, standing proudly on my perfectly pedicured toes proclaiming that I am high maintenance. Where exactly is it written that just because I have Lupus, I have to accept the life of a bag lady? Over and over I hear the same thing from doctors, friends, strangers, facebook friends,

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Handicap Parking and My Invisible Illness

Handicap Parking and My Invisible Illness

I have an invisible illness. To look at me you would see a short, fat, middle-aged grandmother. Sometimes I walk with a cane, but most of the times I don’t need it. I have a handicapped parking tag hanging on the mirror of my car. I park in handicapped spots. However, I get nasty looks when I get

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