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Entries in HAWMC (34)

Wednesday
Apr032013

Purple Flowers Blooming!

Wordless Wednesday ~ post a picture that symbolizes your condition and experiences.

These purple flowers have found a way to bloom despite the weeds, bugs and parasites that surround them.  These purple flowers are blossoming with beauty and reflecting that nature finds a way to succeed when it has determination and purpose.  My "Lupus Style" is like these flowers, it took a while to grow through the challenges but here I am now.  Day 3 of 2013's HAWMC!  Of course, I broke the rules and added words to "Wordless Wednesday"

Tuesday
Apr022013

What you "need" to know about Lupus...

This is what you "need" to know about lupus.  Okay, it is what I think you "need" to know about lupus.  The writing prompt for today asked me to introduce lupus to you (and other Health Activists taking part in the 2013 WEGO Health “Health Activist Writer’s Month Challenge”) there are more than a few things I want to share about “lupus”.   Do I write honestly?  If I did it would start something like “Hello Health Activists, I am writing on behalf of Lupus and Lupus devastates and ruins lives.” or “Lupus Style is about finding your flair and avoiding a flare.”  As a Health Activist (and since you are reading this post I consider you, gentle reader are a Health Activist) you know that there are essentials and that “wants” often are put aside and “needs” take priority.  What you “need” to know about lupus is more than I can put into a single blog post especially since as a Systemic Lupus Erythematosus patient I have experienced “lupus fog” and would probably forget to include some information.  So for Day 2 of HAWMC, here are few things (I believe) you need to know about lupus.

As a Health Activist you need to know what “it’ (lupus) is, according to the National Institutes of Health the definition reads “Lupus is one of many disorders of the immune system known as autoimmune diseases. In autoimmune diseases, the immune system turns against parts of the body it is designed to protect. This leads to inflammation and damage to various body tissues. Lupus can affect many parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels, and brain. Although people with the disease may have many different symptoms, some of the most common ones include extreme fatigue, painful or swollen joints (arthritis), unexplained fever, skin rashes, and kidney problems.” (Source: http://www.niams.nih.gov/health_info/lupus/ )

The lupus community has many needs one a critical need is the need to raise awareness.  Let me tell you what the NIH definition doesn’t.  Getting diagnosed with lupus is a challenge.  The symptoms of lupus mimic other diseases and many physicians don’t know much about the autoimmune disease.  Today, patients are often asking a doctor “Could I have lupus?” http://www.couldihavelupus.gov/   I am glad that patients are searching the internet, becoming aware and finding resources.  I believe that an informed patient is a partner in her (or his) wellness/treatment/therapy with the physicians and health care providers.   My hope is that doctors are willing to listen and learn from patients.

To that end, The Lupus Initiative http://thelupusinitiative.org/ is a resource that Health Activists need to know about.   Lupus education is vital, developing medical education programs for health care practitioners to “address the persistent gaps between the lupus-related health status of minorities and non-minorities, women and men, and those above and below the poverty line”  It is imperative that the medical community educate themselves and stay current on the latest treatment and research developments in lupus.

The need for awareness goes beyond educating patients and medical practitioners, we need to inform our elected officials about Lupus too.  That's where the Congressional Lupus Caucus comes in.  http://rooney.house.gov/index.php?option=com_content&view=article&id=3346 The Congressional Lupus Caucus "was established to provide a forum for members of Congress and their staff to actively engage in a dialogue to improve the quality of life for people with lupus and their caregivers through supporting the advancement of lupus research and increasing awareness of lupus among the public and health professionals."  I have travelled to Washington, D.C. to advocate for increased support of lupus research and educating medical professionals.  If you want to be a Health Activist for lupus, you can.  All it takes is a little time.  Ask your Representative to join the Congressional Lupus Caucus.  You call call their office on Capitol Hill, email them or call the local field office and simply explain why you feel the Congressional Lupus Caucus is important.

There is so much more to share about what Health Activists "need" to know about lupus.  But at this time, this lupus patient, advocate and activst needs some rest.  Thank you for reading and if you have any questions feel free to ask me.

Monday
Apr012013

HAWMC 2013 ~ "Lupus Style"

It’s April--time for another Health Activist Writer’s Month Challenge, also known as #HAWMC on Twitter for WEGO Health.  The challenge is to write 30 posts in 30 days.  So let’s get it started--why do I write about my life with lupus?

I write about lupus (my primary presenting disease is Systemic Lupus Erythematosus) but I also have Antiphospholipid Syndrome, Fibromyalgia and Rheumatoid Arthritis.  Emma Lazarus either said or wrote “I am never going to write for the sake of writing.”  I suppose I agree with her.  Unless prompted by a challenge to discuss why I write and share (some would say overshare!) my health online, I find that my “microblogs” on Twitter and status updates on Facebook are enough.  But, as I have learned by participating in last year’s WEGO Health’s  Health Activist Writer’s Month,  getting it out there and putting it out helped me move forward as a patient/advocate and activist. 

It was for a post last April-- the prompt had something to do with “writing style”-- before I knew it I had created a reflection of how I deal with my disease.  I wrote about “Lupus Style” in a way that was originally intended to mirror the “look of the day” that many fashion bloggers post.  Of course as a Lupus patient my looks included my fuzzy socks and comfy purple robe!  Now it is with pride that I share “Lupus Style” whenever I can. 

Emma Lazarus’ writing inspires me and it is fitting that I am using her words to help inspire mine as I begin the 2013 HAWMC.  She is more famous for the quote “Give me your tired, your poor, your huddled masses yearning to breathe free.” (the poem that can be found at the base of the Statue of Liberty).   While she wasn’t talking about the challenges that the Health Care system faces and that TEDMED is addressing,  I find that her words lift my spirit.  “Lupus Style” is about finding the flair and avoiding a flare.  Here’s to another 30 posts for WEGO Health who knows what I will discover and share with you.  #HAWMC Day 1: done.

Wednesday
May022012

Challenge Completed.

Arms raised in success, I completed the challenge!

If you have been following my journey (via this blog) during April for the 2012 WEGO Health's Health Activist Writer's Month Challenge you know that I have been completing the challenges one post at a time.  There were days when I felt up to the task and more than a few when I felt like I should simply give up.

The WEGO Health #HAWMC was much like living with Lupus.  In the beginning, I had no idea how far I would go and in the end, I feel that I managed to accomplish my goal and share more of my Lupus story.  I had a lot of help along the way and want to play the "Thank You Game" now.  Without, Tiffany @TiffanyAndLupus http://www.tiffanyandlupus.com/ I would not have started the #HAWMC in the first place.  It is Tiffany who makes me strive to be a more active ePatient.  There were days when I wanted to give up.  Writer's block would creep in and my mind would begin to play tricks on me, the negative self-talk was almost impossible to overcome but with the help of @julianna12369 of http://whatthejules.com/ who some nights talked me through the more difficult prompts, I/we managed to succeed.

My favorite prompt from the second I saw the list of Challenges was the Theme Song post.  I liked the posts and prompts that accentuated the positive aspects of living with a health focus.  The post I liked the least, well the prompt I had the most trouble with was the "Miracle Cure" -- that prompt had me thinking about and facing my concern that what if they don't find a cure for Lupus.  My thoughts about the "Miracle Cure" prompt push me to fight now more than ever to support the Alliance for Lupus Research http://www.lupusresearch.org/, the ALR is the only global Lupus non-profit who donates 100% of every donation directly to Lupus Research. 

I spent a lot of time reading about many different conditions and health issues during April.  I truly enjoyed learning the ways people have of writing, sharing and exploring their "health focus".  I remember when 30 days seemed like an eternity.  One day at a time, with the help of my supportive team/community, I/we accomplished the goal of writing a post a day for 30 days.

Now, it is May and Lupus Awareness Month is here.  "Lupus Awareness is fun, Lupus is not."

Monday
Apr302012

Word Cloud! 

My Word Cloud for the last post (Day 30!) of WEGO Health's Health Activist Writer's Month.  "Lupus Awareness is Fun" and I am done.  It seems like more than a month has passed since I first began the Challenge.  My husband and I had an over/under bet that I would stop after 12.  I did them all, only using one "Get Out of Post" free.  Congratulations to each and every blogger who participated.  Whether you did one post or 30, we did together as members of the WEGO Health Community.  I am proud to have participated and at this rate need 11 months to prepare for next years HAWMC!

This picture of my word cloud is not very clear, you could even say it looks a little foggy, approriate since it is a "Lupus" word cloud.  For a clearer image of my WEGO Health Word Cloud, click the link...

http://www.wordle.net/show/wrdl/5215283/Lupus_Awareness_is_Fun