Giving Back Would Be the Best Christmas Gift of All

Giving Back Would Be the Best Christmas Gift of All

Last week, my husband Frank, our daughter Olivia, and I started getting out our holiday decorations. We were very excited to celebrate, because last year, lupus quite simply stole our holiday. We were determined that this year was going to be different. We decided to play Christmas music, dance and

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Oh What Fun to Purchase Holiday Gifts From the ButYouDontLookSick.com On-Line Store

Oh What Fun to Purchase Holiday Gifts From the ButYouDontLookSick.com On-Line Store

Contemplating what you should give a loved-one or close friend, suffering from a chronic illness this holiday season? How about a Tee-shirt that reads ‘Lupus Sucks’ or ‘Fibromyalgia Sucks' ? Look no further than the Butyoudontlooksick.com online store. Offering apparel and merchandise with a t

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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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A Time To Give Thanks

A Time To Give Thanks

This is the time of year that inspires us to examine our lives with a closer look and make a checklist of what we are truly thankful for. No matter what your religion or your background, Thanksgiving has become a national holiday where we are reminded to take an inventory of the many blessings we of

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“Sick Humor” You know you’re a Spoonie when….. *Facebook Fan Page Edition*

 Thank you to the butyoudontlooksick.com facebook fan page community for helping come up with some of these great 1- liners! If you do not know what a "spoonie" is, please take a moment to read "The Spoon Theory". “You know you're a spoonie when going to PT and the grocery store in one day is to

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Movie Review:

Movie Review: “Harry Potter and the Deathly Hallows, Part 1”

I was fortunate enough to see this on opening day with a friend. It is based upon the final book in the Harry Potter series, but due to the length of the story, this film only covers the first portion of the book. Part 2 will be released in theatres July 2011. I saw the regular version rather than

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Historic and Hopeful Day for Patients living with Lupus - FDA Advisory Committee’s Recommendation to Approve Benlysta for Lupus

Historic and Hopeful Day for Patients living with Lupus – FDA Advisory Committee’s Recommendation to Approve Benlysta for Lupus

The U.S. FDA Arthritis Advisory Committee voted 13 to 2 to recommend approvalof the treatment developed by Human Genome Sciences (HGS) and GlaxoSmithKline Tuesday, November 16, 2010 The Lupus Research Institute (LRI) and its National Coalition of state and local lupus organizations are pleased wit

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Introducing the Official “The Spoon Theory/ I am a Spoonie” Video by Christine Miserandino

Introducing the Official “The Spoon Theory/ I am a Spoonie” Video by Christine Miserandino

A slide show movie of my life, how "the spoon theory" started, and how this HUGE internet community has been formed around the world to give support, encouragement and information by using butyoudontlooksick.com and #spoonie to connect. This has been an incredible ride! THANK YOU! PLEASE share th

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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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Food and Drug Administration (FDA) to Hold Hearing on BENLYSTA® on November 16th

Food and Drug Administration (FDA) to Hold Hearing on BENLYSTA® on November 16th

On November 16, 2010, the Food and Drug Administration (FDA) will hold a hearing to discuss the application to approve BENLYSTA® (belimumab) as a treatment to reduce disease activity in adults with active, autoantibody-positive lupus. If approved, BENLYSTA® will be the first drug to be specif

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