Dare To Be Different: Breaking The Spoonie Rules

Dare To Be Different: Breaking The Spoonie Rules

Growing up, I was never one of those people who marched to the beat of their own drum.  I watched with envy the girls who had a fashion sense all their own and a fun quirky hairstyle that made them stand out in a crowd.  I wished frequently that I was the type of woman who said exactly what was on

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Yes, I Still Have Lupus.

Yes, I Still Have Lupus.

Sunday October 17th is the annual Lupus Walk fundraiser for the Lupus Alliance in my local area. I am a person living with Lupus. My family and I pride ourselves on being one of the top fundraising teams every year. We make phone calls or send email messages to family, friends and co-workers. We eve

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Excuse Me For Saying It, But Lupus Sucks!

Excuse Me For Saying It, But Lupus Sucks!

May is Lupus Awareness Month! How Will You Spread Awareness? My daughter Christine has a tee shirt with the above logo emblazened on it, and I have always disliked the crudeness of that phrase. Every time she wore that shirt I would wince and tell her how I hated that expression, but she would just

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We All Have Lupus. - My Speech from The Lupus Gala Brunch

We All Have Lupus. – My Speech from The Lupus Gala Brunch

In Honor of Lupus Awareness Month. The following speech was given by Christine Miserandino - Donato at the Lupus Gala Brunch given by the Lupus Alliance of Long Island/ Queens. It is titled "We All Have Lupus" Thank you to the Lupus Alliance and the Board of Directors for this honor. I speak

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“Addition by Subtraction” – Sometimes Less Is More: A Lesson In

There comes a time in everyone's life when they must re-evaluate things. For some it is their career path or material possessions, for others it is their choice in friends or bonds with family. For me, this year, it has been a little of everything. I have spent a better part of the past year ta

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The Pain of Disease and the Triumph of Togetherness

* Looking back on 5 years of ButYouDontLookSick.com There’s a pain that can be worse than any physical disease. It’s the loneliness you feel when you see your friends go out and do things without a second thought and how that is an impossible dream for you. How the simple act of attending class

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Humor: Everything I need to know, I learned from my 4 year old.

Ever see those posters saying "Everything I need to know I learned in Kindergarten?" Well my son is four, only in pre-school, and has taught me a ton. I find this particularly humorous, because this is the kid who insists he can go on a field trip to the future. (I usually tell him Why not?!) Her

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Thoughts on Aging

The first thing out of my mouth most mornings is usually some sort of multi- syllabic utterance such as marghblamhaba which can be loosely translated into many phrases such as, Oy vay!, Mon Dieu!, Dear Lord!, or What???, depending on your cultural and religious preferences. My thoughts quickly go to

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Never ask – “How are you feeling today?”

It's taken me a long time to get out of the automatic habit of saying, "How are you?" when I see someone. That question would be all right to ask most healthy people because the spontaneous response of "fine" would be appropriate. I have discovered that people who are ill hate that simple question

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The Birthday Blues

It was my birthday this week and I have been in a funk, depressed, and moody and no one really understands why. Birthdays are occasions for presents, friends, and usually a few candles to blow out. Everyone around me has tried to cheer me up with lunch dates, surprise parties and lots of chocolate c

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