Tuesday, April 26, 2011

Lupus List - Don't Miss These Blogs!

May is Lupus Awareness Month.  This means another great opportunity for some great list posts!  To start things out, let's create a great list of fabulous Lupus bloggers...

Angie Phillips blog Ardent Cerebrations: Musings of a Lupus Survivor is the first Lupus blogger I began following after I was re-diagnosed with the disease a few years ago.  She has an accompanying NING group where she interacts with patients, caregivers and family and friends of survivors.  I find that she is intelligent and very well spoken, and has organization down to an art form.  She's very interactive and a wealth of information.  She's been dealing with some of the most severe Lupus symptoms for many years and comes at this from the school of "Been There, Done That".  You can find Angie many places online including Facebook and Twitter.

Tiffany Marie 'Spanish' Batista is another great blogger I really enjoy.  Her blog is Living La Vida Lupus and she too is very interactive with her followers.  Tiffany is one 'glittery personality' so full of smiles and joy and education and practical daily support... I'd love to meet someday and give her a big sqooshey hug.  Tiffany too can be found on Facebook and on Twitter.  She also has a great Facebook group called Friends Against Lupus that is well worth clicking as well.

Paul Spencer's blog is a little bit different.  Yes He's Mad is a blog that lets you track Paul and keep up with him vicariously as he cycles for Lupus awareness and to raise funds for the disease.  Paul's sister has Lupus, and I got the opportunity to meet Paul, his sidekick Dean and his mom Miriam when they rode through our neck of the woods last year on his way to an incredible Guinness World Record for riding across the United States - North to South AND West to East! He is currently on the world's longest bike race across the entire continent of Africa.  He was placed second, then got Malaria and had to be hospitalized.  That didn't stop Paul though.  He wrote his mom, "My joints ached so badly every day.  All I could think of was (his sister) lives with this kind of joint pain every day.  I have to keep going."  Paul also keeps up with his  Twitter and Facebook page as well where you can read about each day's exploits.

Lupus, Humor, and Wellness is a fun blog I like to sit down and read when I have some time to kill.  Carla Ulbrich, the 'Singing Patient' writes and teaches with humor, sincerity and enthusiasm.  There's not much "poor me" stuff here, just useful information and a great perspective.  She includes plenty of photos and an up-tempo approach to blogging about her Lupus experience.   She's recorded an album called "Sick Humor" that I'd love to get a copy of eventually, as well as a book called "How Can You Not Laugh at a Time Like This?"  You can also find Carla on Facebook as well as Twitter.

Chroniclysilly is another fun blog I like to read when I have the time.  Again, a fun, upbeat place to go for good tips, information and a great serving of sincerity.  Chroniclysilly has a good sized following for a reason - it's a great read.  In addition to blogging, there is a Facebook and Twitter page, as well as a jewelry page that often features Lupus inspired creations.

The Jodi McKee Autoimmune Portrait Project is a very interesting, different type of blog.  In it she includes portraits of autoimmune patients along with a brief interview that discusses everything from their disease to tips they offer to other patients who have just been diagnosed.  For those looking to see that they are not alone in their Lupus diagnosis, this is a great place to see the stories of others.

My Life Works Today  is an up front, sometimes humorous look at life with Lupus.  This is no high brow blog repleat with doctorspeak, just ordinary language, ordinary people and all too ordinary situations we all live through at one time or another.  Make sure and follow MLWT on Twitter too!

Lupus Awareness and Research is not really a blog, but it's updated daily and written as if it were a blog and so is included in this list.  If you're interested in the latest research and thoughts on Lupus, or just curious which celebrities are helping us create Lupus awareness... this is a site that will interest you.

LA Lupus Lady is a fabulous Lupus advocate.  Whether you follow her on her blog or her Twitter you'll find her posts very informative and to the point.  She has also done a couple of video projects that include photos of patients with Lupus.  This lady believes in advocacy and taking action, and she puts her money where her mouth is!

But You Don't Look Sick  was begun when the author, Christine Miserandino was struggling with Lupus and came up with an analogy to help her friends and family understand how she gets through each day in her life.  She called it "The Spoon Theory" and thus an entire movement was born.   BYDLS (But You Don't Look Sick) is on Facebook, as is Christine.  You can also find BYDLS on Twitter.  Oh - don't forget to read Christine's Spoon Theory too!

Butterfly Lessons is a place to go if you want to read about someone who is active in Lupus Awareness.  She seems quite active in helping others in Lupus walks etc and tells all about each experience she participates in.  This is great for those who are interested in becoming a Lupus Health Activist but yet is unsure exactly what to do about it.  Katina Rae Stapleton can also be found on Facebook and Twitter .

Of course there are many other bloggers out there that are also wonderful to read, and it was really difficult to choose some favs to place on this list.  Feel free to place your own blog in the reply box below, or let me know of others you think worthy of being included here!  You can also join in on the conversation here in the Autoimmune Diseases Group...

Tell us about your favorites!!!

Comment by Angie on May 2, 2011 at 11:33am
Thanks, Ellen, for including me in a list of such admirable bloggers! I actually remember your first comment on my personal page. Had no idea what a great source of encouragement you would become. Kudos to you for all the writng and work you do for health awareness. Thanks for being my friend!
Comment by Ellen S on May 2, 2011 at 6:03pm
Angie, it's always such a pleasure to work with you!  I truly admire all that you do for the Lupus community.  If there are any others you can think of that you think should be added here, I'd love it if you'd link them here so others can find them too.

All Hail Lupus Awareness Month!!

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