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Entries in WEGO Health (46)

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.

Friday
Nov302012

A-Z wrapping up the awesomeness of #NHBPM & "LA Lupus Lady"

Trying to accentuate the positive without seeming arrogant, I decide to instead of using a "Get Out Of Post Free" I would ask my husband to help me and guest write about the Day 30 (the last one!) prompt for WEGO Health's #NHBPM, "why I'm awesome.  So in true "Lupus Style" I asked for the assistance, last night and got it, in the form of this post.  However, because there is usually a "however" in a life of someone who lives with lupus, (or any chronic condition) when I asked for help this morning, while still half-asleep I was jolted awake because a simple task on the "honey do" list was too complex for my husband, apparently as can be seen by his eloquent post below he thinks I am kind of cool and likes me, but when it comes to being a caregiver, there is much to be desired.

"Here's why Amanda "LA Lupus Lady" is Awesome... a guest post written by me, Steve Leblang, her husband aka: LA Lupus Lady's Man!  I think Amanda is awesome for many reasons!   I will list the reasons alphabetically... 

A- Amazing--the perfect description for her passion and energy 
B- Beautiful--inside and out
C- Creative--how else can someone do 29 inspiring posts in 29 days?
D- Distinctive-- the definition of "Lupus Style"
E- Entertaining-- to "watch her watch" something is a joy unto itself
F- Fascinating-- A day doesn't go by that I don't learn or experience something new thanks to her
G- Grateful-- Both for life and the Dead
H- Huggable-- Hey, I'm allowed to be biased in this opinion!
I- Inspiring -- When I see how her words of encouragement and empowerment affect so many every day, I'm reinvigorated myself to be as good as I can be
J- Jumping Jacks -- A great way to stay (somewhat) in shape during football season!
K- Kissable-- See "huggable"
L- (tie) LA, Lupus and Lady --for obvious reasons!
M-Magnanimous.  Webster's definition is "showing or suggesting a lofty and courageous spirit".  Most appropriate!
N- New York.  My hometown, and our favorite city to travel to, especially during baseball or football season!
O- Original.  My wife is truly unique in how she expresses her contagious passions
P- Purple.  Her favorite color (as if the site's frame wasn't a giveaway)--and I have to admit I look pretty good in it myself!
Q- Quick.  She can finish my sentences ahead of me--her mind is THAT fast--and you should see how it helps her score big in Words with Friends!
R- Rich.  In heart and soul, and we're working on the money part together...
S- Social.  As in "media", and especially as it relates to engaging with other people.
T- Twitter.  She makes 140 characters as entertaining as possible with every tweet.
U-Unstoppable.  When she's determined to make something happen, forces of nature and beyond can't slow her down.
V- Victorious.  Not everything is distinctly in the "win" column, but every day we're in there fighting, and that's a victory in its own right.
W- (tie)  Wonderful, Wild and Wacky.  She's all three, often at the same time, and you never know how much of each you're gonna get... 
X-  eXquisite.  This applies to her tastes as well as her heart.  She's made me appreciate the subtleties of fashion and style, and that's quite a leap for a guy who at one time couldn't wash his underwear without it turning pink
Y- Yummy.  Allow me to plead the Fifth on details here...
Z- Zingy!  OK, it's not a real word, but she makes my heartstrings go "Zing!" every morning, so I'll contend that it fits here...
Amanda is awesome in more ways than I can count... from A to Z Amanda is a jigsaw puzzle of awesomeness!
~ back to our regularly scheduled post.
Thank you honey.  This post written to conclude November 2012, WEGO Health's National Health Blog Post Month.
 
To wrap up #NHBPM thought that instead of "tooting my own horn" I would let my hubby @SteveLeblang tell you why he "likes me" (and thinks I am awesome.)  I have written about lupus in a variety of ways, but in true "Lupus Style" I support WEGO Health but am glad November is over.  Now I have to "talk" to my husband about the proper methods of early morning communication with his half-sleeping wife who suffers from lupus, fibro, APS and IMS (a newly discovered condition, I call: Irritable Morning Syndrome).  So the last day of #NHBPM is starting just like it began a mere 30 days ago... I am struggling to shine, despite the factors that want to engulf my fire and "flair" - thank you for reading and have a wonderful day.
Thursday
Nov292012

Accomplishing "Lupus Style" in 2013

How am I supposed to think about plans for 2013, when I am not done with November's National Health Blog Post Month #NHBPM for WEGO Health yet?  If there is anything that John Lennon and Systemic Lupus Erythematosus (SLE) have taught me it is that "Life is what happens while you are making other plans" yet I am making plans.  Looking forward is an important part of my life with lupus.  I look forward and plan.  I know now that in January, Lady Gaga is bringing her Born This Way Ball to Staples Center and I am a "Heavy Metal LOVER" Monster!  I have already started working out so I can dance all night.  I hope that exercise classes (with Richard Simmons, @TheWeightSaint) will help build up my stamina.  Dancing around the living room listening to Lady Gaga's songs so I can sing every word along with her.  (I love the "living room", don't you? The idea of room that is just for living.)

The one thing is that I would continue from 2012 into 2013 is to lead my team "Lupus Awareness is Fun!" as we walk at MetLife Stadium in New Jersey and along the beach in Santa Monica, California and in 2013, I want to lead a team of walkers in New York City!  I wanted to lead three walk teams to support the Alliance for Lupus Research "Walk with Us to Cure Lupus" in 2012, but I only led two.  I want to do more for the lupus community and in 2013, I will accomplish my goals.  Because like the Alliance for Lupus Research say "Together, we can cure lupus."  I may not be a researcher or scientist but as an advocate for awareness and research maybe the contributions of someone who supports the "Lupus Awareness is Fun!" team will be the crucial funding to discover the next innovative therapy.  Since I don't know whose dollar is going to be the one, the crucial one dollar that helps take lupus research one step closer to a cure.  I walk and if I walk in three cities in 2013, I will walk in four cities in 2014. Until there is a cure for lupus, I will walk.

Pictured here with Tiffany Peterson on the field at MetLife Stadium (New Jersey) in May!

 

On stage at the State of Now 2012 "Lupus Chat, Lupus Style." at the 92nd Street Y, New York in June.

Kicking it with the Los Angeles "Lupus Awareness is Fun!" team in Santa Monica, California in November! Wearing my purple boots, tights, sequin skirt, and the cape attached to my purple jacket!  You might think that I am addicted to sharing that 100% of all donations to the Alliance for Lupus Research directly fund Lupus Research but until there is a cure, there is the ALR.  http://lupusresearch.org/

One step at a time for the Alliance for Lupus Research. Other plans for 2013 that should have "passion coliision" warning signs... I booked lunch reservations at Joanne's Trattoria for World Lupus Day, I am so glad that Travis is looking forward to hosting us again.  I hope that I will be chosen by @jeffpulver to share (speak) at the State of Now 2013 on stage at the 92nd Street Y in June.  I can't wait for these and other chances to share my story at conferences, online and on TV.

Now it is time to take a breath and a drink of water, ramping up to share how my "passions will collide" in 2013 is fun and making me thirsty!

Wednesday
Nov282012

Dealing with negativity

As someone who strives to accentuate the positive.  I am going to put all my cards on the table to let you (gentle reader) know how I "deal" with negativity.  Whether the meanness comes from a single bully or an entire organization, like the Tom Petty song says "I won't back down".  I will not change who I am or stop sharing how I thrive as a woman who lives with lupus.  If my blog posts, tweets or Facebook status give one person a reason to keep smiling or keep fighting then I am doing my job as a patient/advocate/activist.

(Sandra Oh picture/Christine Yang "Grey's Anatomy quote from Entertainment Weekly)

Earlier this year, my goal was to demonstrate the unity in the lupus community.  While my goal has not changed, I soon realized that the lesson I (still) had to learn is that when people show your their true colors believe them.  Demonstrating my support for the lupus community, is something I do because it is who I am.  I am not looking for recognition or accolades... I offer my time, energy and support when I can, this year I have experienced that they (either certain individuals or an organization) seem more than willing to accept my (and your) assistance to help their cause on their terms.  In 2012, I have learned to be clear and precise in my communication.  I have been hurt and frustrated by lupus.  I will not allow others to have a negative impact on my life, writing or work.  Apparently, it isn't enough that the disease wrecks havoc on my body and in my life.  Some facets of the lupus community have shown that they do not care about focusing on the positive.  I am going to keep shining a spotlight on how I find the "flair' while not focusing on the flare.

I am a strong woman who voices her passion for sharing Lupus Awareness and the need to fund Lupus Research.  I am not a utensil.  If I was a utensil, I would not be a spoon, I would be a purple knife.  If you have a problem with that, let's talk about and deal with it.  Together, we are on the same team.  Let's collaborate on a solution instead of creating more conflict.

 

  Day 28 of WEGO Health's National Health Blog Post Month.