Wednesday, May 9, 2012
May is Lupus Awareness Month! Band Together For Lupus!
There are two reasons why I am sharing this information and the first is that it is “Lupus Awareness Month,” which is observed in May. The other is that I hope sharing my experiences will help others who have Lupus know that they are not alone. May 10th is World Lupus Day, and May 18th is POP day, which stands for “Put On Purple”. The colors of Lupus are Orange and Purple. So, please show solidarity and support by wearing purple or orange in the month of May.
I remember when I was living in upstate New York, (which is where I was diagnosed), my parents came up to visit me in the summer. My dad had found an article on a website that he thought I may want to check out. The article was about the founder of this new web site called ButYouDontLookSick.com. Christine Miserandino has Lupus and is an advocate for people with all kinds of invisible illness. I couldn’t believe it when I visited her site. There were others who had Lupus plus other invisible illness and everyone was finding out information, expressing their feelings, and supporting each other. What a great title to call this website, as that is what everyone was always telling me, “but you don’t look sick” to have Lupus. Christine has hit it on the head, with this web site, where others can find a collection of stories, articles, book information, health resources and it is a very positive place for those who are living with chronic pain. So, needless to say I found a goldmine, I have to say a BIG thank you to my dad who found this article.
Christine Miserandino you are my hero! Thank you for all you do. She gives inspiration to everyone that comes in contact with her. But when it comes to her “Spoonies” she is like a mother hen. Yes, I did say “spoonie”. I am a “spoonie” and so are over 11,000 other people that have joined Christine and the ButYouDontLookSick family. Christine is the author of "The Spoon Theory"which is a story to explain what life was like living with Lupus, a chronic illness to her friend. She used a “spoon” a normal every day item, so people would understand and be reminded of the small struggles and choices “we” make every day. When you are healthy you do not have to think about every thing you do within a day, such as working, cooking, the walk from your car to the store, or cleaning your house. It is a story about using your energy, choices and consequences, of every day life. The Spoon Theory is like our mantra or the secret society of the invisible illnesses. So that is why I have a spoon on my profile picture on Facebook and on Twitter. It is called a Twibbon to show that I can identify and support “The Spoon Theory”. Christine and the ButYouDontLookSick website has been my go to place where I can network with friends, have a positive attitude, and accomplish my goals.
Thanks for reading my story and I hope this has given you a better understanding of what it is like to have Lupus. “Spoonies” unite and please support our cause.
Come back next week for another recipe and more stories of my Italian family.
Till next Time……..
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Posted by Dottie at 9:27 PM