June is Scleroderma Awareness Month

June is Scleroderma Awareness Month

WHAT IS SCLERODERMA? Scleroderma is a chronic, often progressive, autoimmune disease in which the immune system attacks its own body. Scleroderma means “hard skin.” It can cause a thickening and tightening of the skin. In some cases, it causes serious damage to internal organs including the l

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Who knew a simple thing like a phone could make life so much easier? Vtech phone system LS6475-3

Who knew a simple thing like a phone could make life so much easier? Vtech phone system LS6475-3

I recently received a new phone system and I am in love. Who knew such a simple thing as a phone could make your life so much easier, and any mom knows that she needs to make her life easier.The VTech phone system, model LS6475-3 is a cordless hands free phone, with two handsets. I first loved it be

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Product Review: KIND Bars Snacks - Yummy, Healthy, Easy and Gluten-Free!

Product Review: KIND Bars Snacks – Yummy, Healthy, Easy and Gluten-Free!

It can be tricky when you are on a special diet, like gluten-free or are simply trying to eat healthier. Seems like the most nutritious foods aren't very appealing, and the most yummy goodies are nothing more than empty calories that derail you from your goals. And what about convenience? You want

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Hellllllooooooo Monday!

Monday came earlier than I expected if you know what I mean. :) I Wasn't ready for the morning as the sun peaked in my window. I wanted to curl up under my covers and pretend I had "just one more hour". But I know I would be asking for just one more hour of rest all day. For me, there is never enoug

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The

The “spoonie” Small Print

Batteries not included. Shipping and handling extra. Minimum purchase required. Small print is everywhere and on just about everything. I come with a Spoonie version of small print: if I feel up to it. Whenever I make plans, I always have to add “if I feel up to it.” I never know how I will f

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Christine Miserandino was on

Christine Miserandino was on “The Revolution” Wednesday 3-28 with Toni Braxton talking about Lupus

I was so proud to share the stage with Dr. Jen, and Toni Braxton to talk about living with lupus. It was an amazing experience! The Original airdate was Wednesday 3/28/2012 I have embedded the video below for those of you who missed it, or for our readers who are out of the country and to not get t

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We have reached over 41,000

We have reached over 41,000 “likes” on our facebook fan page!

We are so excited to have over 41,000 "likes" on our facebook fan page! As much as we are excited to have formed this community of great people using technology to share information and support, it of course also makes me sad that we need that support. We as patients need to be empowered to reach ou

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Get Well Gifts from The ButYouDontLookSick.com Store

Looking for a unique get well gift? Have you made a rule to not let Lupus get you down? How about a Tee shirt that reads ‘I am Stronger than Lupus!’? Looking for the right thing to say to those who tell you that you are always tired? We think a T-shirt that says ‘I am Too Tired To Argue With Y

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Spoonie question of the day: Have you ever been mistreated, or made to feel uncomfortable because your disease or disability was invisible or not obvious?

How did you handle it? Did you choose to keep quiet and ignore it? Did you speak to that person or ask to speak to a manager? If you wrote a letter or said something- please share here in the comments section some of your wording. Many people can't find the right words, but maybe if we all share

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