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Learning About Lupus-Unique, fun & even Creative Ways You Can Raise Awareness!

Posted Aug 21 2010 3:15am
Good Morning and hello crack of dawn?
(Ok so I guess this is how it's going to be...Huh Lupus? I take my bed time medications and a codeine around midnight, and as soon as the pain meds begin to wear off...I'm up?!...I think me and Mr. Codeine need to have a little chit chat about how this is going to work!) Regardless, I am in need of some Java but refusing to move from the comfort of my bed (Add it to the reasons I love a laptop!-Blogging From Bed this morning and loving it!) So I am a bit uncomfortable this morning but has a good day yesterday that I certainly cannot complain about that ended with a lovely family Barbeque, and what better way to end a nice day than with your family (I truly love mine to death and do not know what I would do without any of them-- I am extremely blessed and would like to thank each and everyone one them-- That's right Aunt dot, uncle Lou, Aunt Joan and Uncle Mike-- It's your official SHOUT OUT!-- and of course Momma-dukes and Poppa Bear and the my Little (5 inches taller than me) brother! For all the love and constant support they offer me day in and day out and for always supporting m endeavors--Even if they are a bit Lupie!) ! As you all know, I met with the lovely (and she is a doll!) Chelsea Kasai who is with the Lupus Foundation of America for brunch yesterday (what qualifies it as brunch--I am always curious!) and we had a wonderful time. I came away from our meeting with a lot of fantastic information, Ideas, and resources that I am overjoyed with excitement to share with you. and of course I will share in our CHRONICLYsILLy style that we all have come to love (you know you cannot get enough of my Sass!) So today for our post this morning, I'd like to talk about ways we can all help raise awareness and educate the general public as well as those that are in our own lives about lupus (and you'd be surprised at just how easy some of them are to do and it really can make a big difference! There is volume in numbers, yes, but every little piece of information that is put out there, if read by one person, it one more person that is know a bit more educated about Lupus!) Now of course, there is always our fundraising for Lupus research to get funding necessary for clinical trials, new drugs that are coming out in the market and being tested for more lupus-specific treatments etc... But as many of us know, as much as we would like to donate, the money just simply is not always there, so if you can donate a few dollars to the LFA when it is available! Great! Every single dollar counts- but if not you can still do a ton to help raise awareness and get involved!

So I'd like to offer you some ways you can get involved, be active (some ideas you won't even have to move from wherever you may be, say your bed?) and take part is getting the word out there about Lupus, what it is and what needs to be done to spread and raise awareness!

Ways you can get involve, Raise Awareness and help Educate about Lupus (most of which you can without leaving the comfort of your bed... Now that's my kind of raising awareness!)!

- Learning about Lupus Facts! - This week (starting today, Saturday August 21st, 2010 through Friday August 27th) I will be offering three Lupus facts a day on my blog! Some are general knowledge facts, others may be in regards to Lupus treatments, symptoms, and even popular culture such as celebs that are involved and taking part in the efforts etc. These facts will not be lengthy, and if you would like to help spread awareness and educate the public simply, copy and paste one of the facts you like best (or all of them if you like!) to perhaps your Facebook status- your twitter account- in an email that you send to your friends, or maybe you'd like to print them out and post them somewhere around your house or share them with people that way! This is a simple way we can share facts about Lupus and help educate and inform the public as to what Lupus is! Here are our three facts for today!

Fact 1: ( I will start with more basic ones and as our week of awareness rolls on we will get into some more specific facts!) Lupus is a chronic illness. Chronic Illness means symptoms generally last longer than 6 weeks and usually for many years (source: www.lupus.org ).

Fact 2: Lupus is an autoimmune disease. Autoimmune means your immune system cannot tell the difference itself and foreign invaders (such as viruses and bacteria that may enter the body) and in response, the body creates autoantibodies that attack and destroy healthy tissue. (source www.lupus.org )

Fact 3: It is believed that 5 million people world wide have a form of Lupus. (source: www.lupus.org )

And that wraps up our first way you can spread awareness and educate people in your inner circle (or others for that matter) on Lupus! As the week goes on our facts will get silly, and entertaining and some even a little sarcastic- but of course will remain light hearted and informative in our CHRONICLYsILLy spirit!


- Write something-Anything for that matter and share it with those you are comfortable sharing it with! - Writing is always a great way to spread news and share feelings/ educate, just think how many books are out there about lupus! And no-- I am not suggesting you drop everything and go write a book about a lupus (if you feel inspired to by all means I am not one to stop you!) But for our purposes a short piece of writing or even a poem, or perhaps a painting or piece of artwork to share maybe an experience you had because of Lupus, or your feelings about it--It is important to show that Lupus does not just affect our health, but that it permeates every aspect of our lives, from what we do on a daily basis, to the relationships we form and build, to our jobs and what we are able to do for work. So have some fun with it and get creative! Then when you are completed, share it! Send it to your family and friends via email-- Post it to your facebook page or to your favorite support group on Facebook-- or if you'd like-- Send it to FansofCHRONICLYsILLy@gmail.com and I would be THRILLED (as you all know I really do love to share works from others and help everyone get s involved as possible-- I find there is a feeling of strength and empowerment that comes with spreading knowledge and taking part in a greater cause!) to share it! Also, The LFA's quarterly magazine is always accepting and looking for pieces to share, especially in their creative corner of their magazine! Check it out here if you are interested in submitting your piece!--> Lupus Now!

- Lemonade for Lupus stand- Get the kids involved! Here is an idea I am borrowing from my dear friend Hannah (you are all familiar with Hannah from her day as a guest blogger here at CHRONICLYsILLy-- if not I encourage you to check out her post-- It was phenomenal!) Hannah held a Lemonade for Lupus stand outside her house one day, to raise money, and awareness for lupus! I used to have lemonade stands all the time as a child and usually raised about 5 bucks in quarters and was ecstatic about it! And while it may not seem like a lot of money, it will really help you children, nephews, nieces etc... Get a feeling of involvement in your life and a sense of giving back and doing something for a cause!

-Become an e-advocate! - What is an e-advocate? Great question! An e-advocate is someone who educates government officials (usually at their local and state level) about lupus, and the resources that are needed (medically speaking as well as health care and insurance wise too!) This can be done through a written letter, email, fax etc. Again, you do not even have to leave your house and you can make a huge difference! And don't be fooled by the name, you do not have to be an expert in government and health care policies and reform whatsoever... Simply stated, share what it is you know about lupus! If you'd like more information on becoming an e-advocate there is at ton of information here--> Interested in becoming and e-advocate!


Create a poster!- This again is something fun you and your children/nieces and nephews/grand children or perhaps even your class (if you are a teacher!) can get involved in! Whether its the good old fashioned oak tag, and construction paper to a graphically designed poster, creating a poster for lupus awareness and hanging it up somewhere public can make a big difference in getting the word out and educating the public-- For example ask your local grocery store if they'd mind you hanging up a poster with some facts about Lupus, or perhaps your local library would like to share a spot on one of their bulletins! Most importantly, have fun with it!

- Check out the Ad Council's latest campaign-Could I have Lupus? - A great step in the right direction to get Lupus into the public eye! And a very clever campaign if I do say so myself! I first saw one of these posters in NYC when I was walking. It was a poster of a girl right around my age (22) and it read: "I am 22. I am a female. My joints hurt every day and Im always tired... Could I have Lupus?" The concept behind this, I thought, was awesome, as it showed an otherwise healthy looking young girl to the public and then associated her with Lupus-- It really got a message across about how Lupus is an invisible illness. Check it out and perhaps share it with your friends, family etc. The other thing I LOVE about this site... They have a place where anyone living with lupus can create a diary for others to see! You can write in daily about what it is like to live with Lupus and offer insight to others as to how you cope and manage your lupus! If you'd like to start your own diary on couldihavelupus.gov check it out here--> Could I have Lupus- Create your Diary!

And these my friends, are just a few of the many ways you can get involved without having to even leave to comfort of your own bed or couch (for most of them!) I hope you all enjoyed and learned a little bit about Lupus and had some fun while doing so! Hope you are all getting your weekend's started off right and have a lovely day ahead of you-- I am off to make some awareness bracelets and brain storm a "mens line" keep your eyes peeled I am working on it for CHRONICLYsILLy Designs©! I Will leave you all now with our usually concluding posts of our page of hope if you would like to make a contribution on behalf of the LFA for lupus research, and if not please feel free to stop by anyway and sign the guestbook!-- I love reading all of the positive feedback and comments from all of you each day! And of course our Jolt-of-Java to leave us all feeling a little inspired and ready to go!



Jolt-of-Java: " Life is an opportunity, benefit from it. Life is beauty, admire it. Life is bliss, taste it. Life is a dream, realize it. Life is a challenge, meet it. Life is a duty, complete it. Life is a game, play it. Life is a promise, fulfill it. Life is sorrow, overcome it. Life is a song, sing it. Life is a struggle, accept it. Life is a tragedy, confront it. Life is an adventure, dare it. Life is luck, make it. Life is too precious, do not destroy it. Life is life, fight for it".-Mother Teresa

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