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Entries in lupus (127)

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.

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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

Wednesday
Dec122012

The magic of 12/12/12.

Today is December 12, 2012. 12/12/12

Twelve is my magic number.  Not my lucky number but my magic number.  I am too old to believe in magic numbers, but life with lupus has taught me to believe in more than coincidence and circumstance, so I believe in magic numbers, white butterflies and birds on a wire between telephone poles.  There is no logical reason to believe in magic, but I do it anyway.  I think that glitter, sparkle and magic are important elements of life, if one doesn't believe in something special is life worth living?  

The media madness about the Mayan Calendar, is something that I don't believe in.  I feel that we are going to experience a cosmic shift - one where the universe starts to open up to the beauty of magic and nature. You might think that my hope and the joy I receive by believing in magic is strange but the beauty and sense of calm is real and I know that this belief is what makes me "who I am".  If I stay in a hotel and my room is on the 12th floor or ends in 12, I smile and have a good feeling about the stay, is it more than random?  While they aren't as colorful, as a Monarch I believe in the magic of a "white butterfly" and ever since I can remember I feel watched over by the birds on a wire.  

Parents often say "The days are long, but the years are short."  I am not a parent, and am often reminded of that but those who are.  But, my life battle is a struggle to find the joy, beauty and magic despite being diagnosed with a chronic illness.  Today is a day, that seemed so far off... on 01/01/01 do you remember where you were or what you were doing on January 1, 2001?  I do.  For a moment, I thought and wondered if I would be alive on 12/12/12.  Here I am alive and writing, striving to thrive and share my story.  Here we are... December 12, 2012.  I am living with lupus, wondering do you believe in magic?

Monday
Dec032012

"Gotta Support the Team!"

There are many parallels to being a die-hard sports fan and someone who suffers with Systemic Lupus Erythematosus symptoms can range from generalized fatigue and weakness to disorders affecting the Central Nervous System, as a dedicated fan of the New York Jets and a woman living with lupus, I can tell you from my perspective that chronic pain associated with lupus is not comparable to the acute sensation of "sports fan stress" but during today's New York Jets football game I could not help but be inspired by how Rex Ryan and the team found a way to tolerate a painful start, despite injuries and endure to find the win.
Whether you are a fan of the Jets or any sports team, I think you'll agree with me and David Puddy (who painted his face like a Devil) because "you gotta support the team."  (Looking at the picture from Seinfeld, I almost see the butterfly rash on Puddy's face.) 
It is December 3rd and I am writing a blog asking you to support my team again.  Because I am participating in the "Virtual Walk" on December 8th, this Saturday.  My team name is "Lupus Style!" wherever you are on Saturday, you can be a part of the team.
http://walk.lupusresearch.org/site/TR/WalkwithUs/NationalVirtualWalk?team_id=74440&pg=team&fr_id=2950
In case you are unaware 100% of every donation to the Alliance for Lupus Research, directly supports Lupus Research thanks to the incredibly supportive and amazing Board of Directors.  Because the Board supports the ALR team by paying for all operating expenses, your donation directly supports and funds lupus research.  You gotta support the team.  When you support the Alliance for Lupus Research, you support the team on the path to discovering the cure.