Understanding the Unknown: What Lupus Means To Me

Understanding the Unknown: What Lupus Means To Me

For those of us with Lupus, it is a very definite, consuming and frustrating disease. For those of you who love someone with Lupus, it too can be a very frustrating disease. And as hard as it is for you to try and understand what Lupus is and how it wreaks havoc on our lives, please also try and rem

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Excuse me….I didn’t hear you, what was I saying?

Excuse me….I didn’t hear you, what was I saying?

Brain fog.  The words themselves sound almost creepy…like they belong in some poorly made horror film.  Say them to any normal healthy person and you are likely to get looked at like you just recited the entire works of Shakespeare in Pig Latin.  Say it to a fellow Spoonie and you will get a fa

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For Better or For Worse? Hmmmmm……not so much.

For Better or For Worse? Hmmmmm……not so much.

Did you know the divorce rate in this country is at 55%? That means that of the twelve weddings I went to last year…. more than six of those marriages will end up in divorce. Did you know the number one reason for divorce is financial related? And they say love conquers all….I guess not. Divo

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Journey of a Fat Girl

Journey of a Fat Girl

As I began to trace back the beginnings of my struggle with my weight, I have come to the conclusion that I was a fat fetus. Weighing in at almost 10 pounds upon my butt first entry into the world, I have no proof of ever being a “normal” size since. I even found a faded photograph myself at 2 y

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Tip: Handling Isolation That Comes From Chronic Illness

Tip: Handling Isolation That Comes From Chronic Illness

The title is ominous, I know.  But for so many of us that suffer from chronic illnesses, it’s an all too true reality.  I must preface this by saying that not all people who suffer with a chronic illness experience this.  However, the subtleties of it grow as time passes and one is confronted w

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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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My Friends In

My Friends In “The Box”

My friends are in a box.  Yep, you read that right….a box.  There are hundreds of them…neatly packaged in an easy to access square. These people don’t mind when I cancel plans I had with them because I couldn’t keep my eyes open.  They don’t lift an eyebrow when I mummify myself with

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The Blessings of Chronic Illness?

The Blessings of Chronic Illness?

At the time of this writing, it is a few weeks before Thanksgiving in the US. Each day, I must fight an overwhelming array of symptoms caused by Sjogren's syndrome, fibromyalgia, chronic myofascial pain, hypothyroidism, diabetes, celiac disease, gastroparesis and periodic limb movement disorder. I a

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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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