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So little to do and so much time! Wait... Scratch that... Reverse it!

Posted Aug 17 2010 3:05am
Good morning and Wow is it bright and early (let's get that Java brewing!)
After a lovely, and busy day yesterday (what with watching my little friend Robby and finally catching up over some sushi with my dear friend Jenna!) I am off again to spend a portion of my day laughing and giggling over nothing at all other than my little pal Robby and all of his quirky three year old comments, gestures and silliness! And although I am a bit achey and stiff this morning (ok Im hurting big time over here.... and the lack of sleep, less than three hours last night, is just not cutting it... We need extra Java STAT! PRONTO!), the weather is shaping up to what appears to be a wonderful day, and I am taking my friend Robby to McDonalds for a lunch date... (They have surprisingly tasty Java!-- and I must confess...I am one of the few people that order the apple slices and caramel as oppose to the french fries if I have my choice... and because those fries make me blow up quicker than a hot air balloon about to take off on my high doses or prednisone!) So we have a fun and exciting day ahead of us that hopefully does not lend itself to much pain or trouble...Fingers crossed ( I know I am pushing it a bit, but a girl has to have some fun!) ... and if all goes according to plan I will be joining one of my besties, my other half, my unit--> the lovely Karissa for dinner to catch up before she heads back off to graduate school! So with so much to do and so little time (I nailed it this time!) I will get right down to business... Today's post is an informative and fun one all at the same time, and is covering some of latest Lupus News to come my way in the Wide World of Lupus Stuff (for lack of a better term!)

I will start off by sharing with you some exciting news that just came my way last night! My editor and amigo, Geoff Thomas, sent my way yesterday evening...Another press release (from our friends helping to spread awareness at! was (well released!) with regards to The Lupus Magazine and yours truly! I get so excited when these come out simply because it means that word is spreading about Lupus and chronic illnesses, which in turn leads to beautiful waves of awareness across the globe! Check it out on the link above or under the tabs section- Press release and notables!

Moving onward to our next topic of interest! I was contacted via CHRONICLYsILLy's facebook page by the founder of, Lisa Copen, who was diagnosed with Rheumatoid Arthritis at 24 years of age, and in 2002, decided to take action and started/founded Invisible Illness week to bring recognition to all of the invisible illnesses that go undetected, and are silenced by the lack of knowledge and public attention given to them. The story behind Lisa and Invisible Illness week is as follows, per her "About" page on her incredible site:

"When Lisa Copen had 4 joints replaced in her left hand during the winter of 2009 she wore a scary looking outrigger splint for four months, 24 hours a day, that caught the attention of many people wherever she went. While some people awkwardly looked the other way, many approached her and started to share their stories. Lisa quickly realized just how many people are inwardly suffering silently and then when they saw someone who they thought could relate with their pain, they opened up and were willing to share.

Many conversations ended with a hug and sometimes a few tears. She had also talked with friends about how, when she saw someone with an invisible illness getting out of a car parked in a handicapped spot, part of her wanted to go over and just say “I understand” but she was afraid how they may respond.

She discovered other people with invisible illness felt the same way! Most people are not looking for large support groups or 100 percent understanding when it comes to living with a chronic illness. People in pain often times just want ONE person who really “gets it.” And that one person can make a world of difference.

As the founder of National Invisible Chronic Illness Awareness Week , which she began in 2002, she chose 2010 to be the year of “Each One Can Reach One.”

Thousands of people around the world are participating by leaving encouraging sticky notes anywhere they think of, from bathroom mirrors and community bulletin boards, to inside of envelopes when they pay their bills. With nearly 1 in 2 people in the USA living with a chronic condition such as diabetes, arthritis, cancer, or fibromyalgia, about 96% of illnesses are invisible. The hope of the people involved at National Invisible Chronic Illness Awareness Week is to remind people that although they may feel like they are alone in their pain, there are people who do care and understand the unspoken language of invisible illness.

It is easy to get involved. Grab a pen and some paper and share some encouragement in just a sentence! Add at the bottom so those who find the notes nowhere to discover more encouragement and get involved too! National Invisible Chronic Illness Awareness Week is September 13-19, 2010.

We hope you will join us in spreading hope to those who are hurting!"


While your scoping out Lisa's wonderful page, and getting your plans ready for what you can do to help raise awareness during Invisible Illness week, check out her latest video post about how you can help! ( I will be blogging all throughout that week about unique fun facts and information with regards to Invisible Illnesses and how we can all get involved and raise awareness!)

Our next order of business is with regards to The Autoimmune Portrait Project (check it out here and on our friends of CHRONICLYsILLy Links!) Jodi McKee, the photographer and founder of The Autoimmune Portrait Project, was diagnosed with Rheumatoid Arthritis in 2008 and decided to start a photographic documentary of sorts to capture the portraits of those living with RA and other autoimmune diseases. Jodi States:

" My hope for this project is that I can let everyone know that there are a lot of younger people out there who are dealing with these chronic, often painful, illnesses. Also, I think it is very important for the newly diagnosed to be able to see all of these beautiful, happy faces and know that they are not the only one.

Working on this project makes me feel like we are all in this together and that none of us has to go through it alone.

If you would like to participate and have me take your portrait, please e-mail me at Thanks!"

I am Happy and proud to say, that I will be taking part in Jodi's phenomenal project at the end of next week, August 27th, as I am meeting up with her to take some portraits and sit down and discuss life with Lupus... I will also be snagging and interview for the blog as well so I can further share more about her and her amazing journey with RA and all that she is doing! Stop by her site and check out the incredible and talented Jodi McKee in action, her latest shoots are posted on her blog along with they story behind the portrait!

And with all of that being said, I will begin to wrap things up a I must be off to my dear friend's Robby's for an exciting morning/ early afternoon that will be concluding in a trip to Mickey D's! I hope you are all able to check out and get involved in some of these incredible opportunities to spread awareness and take charge! And now, I am off, and will leave you with our usual departing message consisting of our Page of hope- Nothing is Kim Possible (only 4 weeks left until the Gala!), The Table and Ticket information for the Butterfly Gala and The link to cast your Vote for the 2010 Blogger's Choice Awards- Where CHRONICLYsILLy has been nominated for a few caregories, including Best Humor blog and Best Health Blog- Raising awareness one blog at a time, and of course or daily Jolt-of-Java that I am finding myself needing more and more, and in larger quantities (of the real Java and our Jolts!) to keep my day going!

Jolt-of-Java: "The whole point of being alive, is to evolve into the complete person you were intended to be...Remember, Life is change, growth is optional...choose wisely"- An adaption from Oprah (aka Harpo!) and unkown
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