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Thursday
Apr042013

Sharing is caring.

One of my favorite phrases is “Sharing is caring.”  That’s what this post (Day 4) for Health Activist Writer’s Month is all about sharing.  Sharing resources…  I am happy to share resources that have worked for me but much like the disease itself, lupus patients tend to find support and resources that fit them on their own.

If I was a newly diagnosed lupus patient (in the United States)… I would want to reach out to one of the big three organizations to help me get a better understanding of this chronic disease the doctor called “Lupus”  Since this is my list, I would suggest that you skip the orange and head over to the purple people.   There is no better place to start than with the Alliance for Lupus Research.    http://lupusresearch.org/

There are a number of support groups available to you, many local hospitals provide resources for those newly diagnosed with chronic illness.  You may or may not find your “comfort zone” immediately – keep searching.  Sometimes, the best support you will find is online.  Whether from one the many Lupus communities on Facebook (shameless promotion time) such as “Lupus Awareness is Fun” https://www.facebook.com/LupusAwarenessIsFun?fref=ts or “Friends Against Lupus” https://www.facebook.com/AgainstLupus?fref=ts there are (thankfully) too many to count and with a little exploring the newly diagnosed “lupie” as Lupus patients call ourselves will be finding support and building friendship with her lupus “sisters” before she (90% of lupus patients are women, so most likely she.) will learn to spell Systemic Lupus Erythematosus.

After the “lupie” gets to know her new normal, she will find that many of her Facebook friends and support team have taken to blogging.  There is a lupus blog for every personality and I don’t want to neglect any of my friends, so when my suggestion would be to ask your new friends which blogs they like.  Next up, I would tell the new “lupie” to search #lupus on Twitter.  That is how my friend and “lupie sister” Tiffany found and met each other.

(Here is Tiffany @TiffanyAndLupus during a Skype session, support can come from anywhere!)

Once the “lupie” connect with a few patients, her desire to advocate and become an activist may take over that’s when I suggest hitting the big guns and connecting with the “Partnership with Patients” community on Facebook  https://www.facebook.com/groups/295223483902051/?fref=ts

“Partnership with Patients was created in response to Regina Holliday’s experience in attempting to participate in the Partnership for Patients kick-off meeting, a CMS-funded initiative. Regina experience can be read in her post Pecking Order.

This is a friendly group. We will be honest but kind. Please be considerate of others. Remember if you are here you are helping to build a better tomorrow. “

The best part about the Partnership with Patients is the PEN = Patient Engagement Network that @ReginaHolliday has created with “The Walking Gallery” when you go to health care conferences and want a conversation starter, simply wear one of Regina’s painted jackets and the communication flows.  Don’t worry if conferences aren’t for you.  You can become an advocate and activist from the comfort of your laptop.  I would share (and I do) that new patients find a health care chat and “lurk” then join in and you will find yourself welcomed into the health care community.

At this point, I would say welcome to the world of lupus patient advocacy.  If I can help guide you along the way, feel free to reach out and contact me.  May you “find the flair and avoid a flare” as you discover your “Lupus Style.”

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.

Sunday
Feb172013

Lady Gaga's gift to me.

I never mean to neglect my blog but somehow it is March 28, 2013 and the last post was from 12/12/12 though you can usually find me online tweeting as @LAlupusLady or on Facebook.  I have gotten over the self-imposed guilt of what it felt like to neglect writing this blog.  I've done some clearing work and meditations have been chanted.  I feel that I've cleared the path for a new self-imposed challenge.  I know that there will be days that I don't hit my target but at least the bullseye is in sight. (My apologies for the archery reference but my 14 year old niece is taking aim at her goals of being like Jennifer Lawrence in the Hunger Games and I enjoy the play on words.)  Often when you live with lupus, as I do.  Life makes other plans and so I made it through the holidays and began 2013 with a few goals for January, and the rest of the year.  I've learned to be flexible as the pain and struggles of making it through the winter are not easy.  Even winter in Los Angeles, can impact my joints and body pain.  Let's leave the pain behind...

Today is @LadyGaga 's 27th Birthday and I am posting a blog to celebrate.  While it may not seem like much to you it is huge to me.  I have wanted to share the joys of the Born This Way Ball with you long before the Born Brave Bus was parked across from Staples Center on January 20th!  I have accepted a new challenge and will be participating in WEGO Health's Health Activist Writer's Month Challenge (#HAWMC on Twitter) and didn't want to wait until April 1st to post my first blog of 2013.  So I am using Lady Gaga's Birthday as a reason to post now/today.

~~~~

In January, I had a mission.  I wanted to be able to enjoy/dance and sing with Lady Gaga at Staples Center for two nights in a row.  That may not seem like a big deal to most people, especially if you call yourself a "Little Monster" but to a 45 year old woman with Lupus.  I had to prepare for the "Born This Way Ball" in Los Angeles.  I would have to "ramp up to ramp down to ramp up".  I had to find a balance of building my endurance and resting my body.  So I headed back to Slimmons in Beverly Hills, to get me ready for the Born This Way Ball and for $12 you get a full hour and a half work out and literally "Sweat with Richard Simmons" from aerobics and weights to getting on the floor. Richard kicked (and continues to kick) my ass.  

The music was a powerful motivator.  I listened to "Born This Way" three times a day and moved to the music,  And I took time to rest.  That was almost harder than the work outs with @TheWeightSaint (Richard's Twitter handle!)  After close to 30 years of living with lupus, I still have difficulty slowing down and relaxing, even though I know it is best for me.  [March 23, 2013 marked the 30th anniversary of my diagnosis with Systemic Lupus Erythematosus.]

This quote from Havelock Ellis celebrates the essence of what I call Lupus Style.  "All the art of living lies in a fine mingling of letting go and holding on."  Releasing just a control, helps me find the balance.  

When I got the email telling me about the Born Brave Bus joining the tour.  I knew this was going to be a special 48 hours.  I wanted to scream with delight when I saw the Born Brave Bus for the first time.  Since a picture is worth a thousand words... 

 http://pinterest.com/lalupuslady/born-brave-bus/ 

"When you become part of something, in some way you count. It could be a march; it could be a rally, even a brief one. You're part of something, and you suddenly realize you count. To count is very important." Studs Terkel

http://pinterest.com/lalupuslady/born-this-way-ball-in-la/

To honor Lady Gaga @ladygaga I supported the Born This Way Foundation with a gift of $27 to celebrate her 27th birthday and to celebrate 30 years of living with Lupus I (finally) posted a blog in 2013!

Happy Spring!

Hugs and Health,

Amanda