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Entries in Lupus Style (19)

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.
Saturday
Nov242012

"Lupus Style!" Shonda, please "use lupus".

Laughter is good medicine, but lupus is no joke.  Still, I laugh hard and smile when lupus is used as the punchline in a TV comedy.  I will never forget and still chuckle at the rerun of "Seinfeld" when George Constanza says "Lupus? Is it Lupus?"  Everyone knows that "House" used lupus as a possible diagnosis many times; it was finally lupus in Episode 408, aptly titled "You Don't Want to Know".  Lupus was still used on the show and I am grateful because the show raised awareness.  Lupus is more common than cystic fibrosis, multiple sclerosis, muscular dystrophy, leukemia and cerebral palsy, but suffers more than any of these diseases from lack of awareness.  "Lupus Awareness is Fun!" so let's begin...

I would submit an idea to Shonda Rhimes to do an episode, or even better a story arc, featuring characters with lupus.  The question would be which show--after all, Shonda Rhimes is Executive Producer of three current ABC dramas.  The obvious choice would be to ask her to include lupus on "Grey's Anatomy".  While I know that "Grey's" has "used lupus" previously, I would suggest a few storyline options.  One idea has Dr. Christina Yang meeting a cardiac patient, a young black woman whose positive attitude and lupus diagnosis has encouraged her to create and participate actively in an online community (support group) of lupus patients.  When her online friends travel across the country to have an IRL "MeetUp for Amanda" (shameless plea for the lupus advocate/patient/activist to be named after me!), Christina's usually stoic demeanor is softened and she realizes that healing the heart can be done with more than a scalpel.  Or Bailey could have a lupus patient whose mother is not the "health proxy", as the patient has decided to elect a non-family member to make decisions in the event that she cannot.  The issue is that currently the patient is making EOL and QOL life choices that the parent and family disagree with and the lupus patient just wants to know that her wishes will be fulfilled if and when the time comes.  Another idea for "using lupus" could be that Meredith has a lupus patient who was on a trip to Seattle when the stress of travelling caused the patient to "flare" and there is difficulty attempting to get her patient records--it is a long holiday weekend or legal holiday.  When the patient hears of this, she pulls out her tablet and has her complete EMRs and other health apps online that have monitored her medications and lab results for the last two years.  All of the resources and information are available to Meredith who without this information would have done a "invasive and unnecessary" procedure.  Instead, after IV fluids and rest,the patient is back to normal; well, normal for a lupus patient on vacation in Seattle who spent half her trip in the ER of Seattle Grace!

I had always hoped that Shonda's soon-to-be canceled show "Private Practice" would have had a storyline on the benefits of alternative therapies used to help control and manage the chronic pain associated with lupus (and other conditions).  It would be an educational and entertaining way to raise lupus awareness. The "Private Practice" episode (or story arc) would have demonstrated the benefits of combining acupuncture, "talk therapy" and the use of herbal supplements to control and manage the pain in a patient suffering from mild lupus symptoms  This would have provided a new resource for those that suffer needlessly because their Health Care Provider is unaware of how these treatments can relieve pain and help improve the Quality of Life in patients lives.   Showing how the alternative therapies work on an individual patient on a single episode (or storyline) would have raised awareness for alternative methods of controlling chronic pain.

 

However, I would love it if Shonda found a way to incorporate lupus into my new favorite drama, Scandal. As a lupus patient/advocate/activist and "Warrior", I enjoy being a "Gladiator" (what "Scandal" fans call themselves) and would find incredible joy and satisfaction if Shonda and the team of Scandal writers worked "lupus" into the storyline.  One suggestion I would offer them is to "use lupus" as a way for a member of Congress who is caught "having an affair" with a prominent DC physician by a TMZ-like journalist.   Perhaps the journalist who captured the compromising photos in the hospital conference room has a young daughter who suffers from lupus and Olivia Pope comes to the rescue, telling the slimy paparazzo that both the Congressperson and physician will do more to help the future of lupus research if their reputations are not hurt by the scandal that releasing those photos would cause.  The photographer needs the money to pay for his daughter's rising medical bills and Olivia Pope and her team manage to have the physician and the Congressperson create a foundation for lupus patients who cannot pay for treatment.  The Congress member joins and supports the Congressional Lupus Caucus. If dreams could come true... there is a PSA at the end of the "Scandal" episode, asking all members of Congress to join the Congressional Lupus Caucus and all Gladiators to join the fight to cure lupus by supporting the Alliance for Lupus Research.

Please join me and tweet @ShondaRhimes ask her to "use lupus!"  Please tweet @ScandalWriters and ask them to pitch and "use lupus!"  Whether or not, @ShondaRhimes and the @ScandalWriters "use lupus", you can ask your member of Congress to join the Congressional Lupus Caucus.

  written for Day 24 of WEGO Health's National Health Blog Post Month. 

Tuesday
Nov202012

The path to wellness...

I support whatever works.  If it works for me... The path to wellness and journey to discovering what works doesn't happen overnight.  Finding the right "alternative" practioner and combination of therapies should always be discussed openly with your physician and my claims are just that.  My claims, these three treatment options have worked for me.  This is a look into three things in my medicine cabinet.  Day 20 for WEGO Health 2012's National Health Blog Post Month...

Blockbuster! Boom. Pow! This is a "wonderful" dietary supplement that has changed my daily routine and improved my Quality of Life.  The chronic joint pain isn't completely gone but the days when I experience intractable pain are fewer.  I know how I felt before my alternative pain management physician suggested these and how I feel now... the difference is Blockbuster. http://goodhealthusa.com/products/Blockbuster1C/

Time to breathe and step into the treatment room with Dr. Jill Harrison.  Her website will give you the details but let me share the benefits I've experienced.  After a session of acupuncture, I feel better.  On the pain scale, the numbers go down.  On the mood scale, the numbers go up.  Isn't that all anyone living with a chronic condition wants?  Pain down, mood up.  It is want I wanted and have achieved with the help of Joyful Life Healing.

thumbnail http://www.joyfullifehealing.com/

Dr. Jill gives me much more than needles... her acupuncture sessions often transform and become consciousness-raising workshops.  In addition to using a weekly "session of needles" I also have started taking traditional Chinses medicinal herbs.  Every session is different and address the issues that are present at the time.  So many think it is crazy but millions of healthy Chinese can't be wrong.  All I know is that acupuncture treatments with Dr. Jill Harrison, and taking the Chinese herbs that she prescribes work for me.  My Rhuemie likes it, the results are in.   Believe it or not?  I believe that my acupuncture sessions have helped me find my "flair" while finding a balance with my mental, physical and emotional well-being.

Pain is a part of living with lupus, joint pain is often the most prevalent presenting issue so when my physician suggest I start taking Omega XL I did.  He knows I hate large "horse pill" fish oil pills and the yucky, disgusting "fish burps" but he knows I need my Omega Oils for my health.  The tiny Omega XL capsules are rich in Omega oils from the green-lipped mussel of New Zealand.  There is no fishy after taste and the timy capsules have helped my numbers - on the pain scale and in lab tests, the results are in.  Omega XL works for me, I am so passionate about this tiny formula that I should be featured in one of their infomercials.  Read all about it and decide for yourself.  If you decide to try Omega XL and order, tell them I sent you... (Amanda Greene of Culver City, CA 90230)  Sharing is caring, the best referral is when you refer a friend. http://www.omegaxl.com/Omega 3 Super Oil Supplement - Try OMEGA XL Risk FREE for 90 Days!

Three is a magic number and these three "secrets" of my arsenal have been revealed.  They support me and I support them.  If you want to experience the power of my support team feel free to try and see for yourself.  It is healing to go on a different journey to wellness.  After all, we are each unique individuals, shouldn't our treatment plans be as well. Hocus Pocus! Abracadabra! Whatever works... if it works for you it is a wonder drug.  A wonderful drug... that is.

Friday
Nov162012

Music as Medicine "Lupus Style" Playlist

There is power and magic in the beat of a heart and a drum, the beat of life... Put the metaphors aside and you too will understand what I mean about how I use "music as medicine" medicine that is stronger than the best pharmaceuticals available, there are medicinal benefits that happen while listening and dancing to music.  I am not a scholar or scientist but I know that hearing the right song can change my mood and take me to another place, often one without physical pain.  WEGO Health's National Health Blog Post Month writing prompt for Day 17, Make a playlist for your Health Community.  Here are the songs on my "Lupus Style" playlist for the WEGO Health Community.  Lupus or not, I hope you find power and magic in the songs and music that moves me.

Listed Alphabetically...

Ain't No Mountain High Enough ~ Marvin Gaye & Tammi Terrell

Beautiful, Loved & Blessed ~ Tamar (Featuring Prince)

Bittersweet Symphony ~ The Verve

Born This Way ~ Lady Gaga

Could You Be Loved ~ Bob Marley

The Edge of Glory ~ Lady Gaga

Get Up, Stand Up ~ Bob Marley

Glamazon ~ RuPaul

Goin' Down The Road Feeling Bad ~ Grateful Dead

Good Riddance ~ Green Day

Here Comes The Sun ~ Nina Simone

I Am Woman ~ Helen Reddy

If My Friends Could See Me Now ~ "Sweet Charity" Soundtrack from the Musical

Let Love Rule ~ Lenny Kravitz

Love Is All Around ~ Sonny Curtis (Theme from "The Mary Tyler Moore Show")

Lovin', Touchin', Squeezin' ~ Journey

Mi Shebeirach ~ Debbie Friedman

Never Lost My Way ~ Ginjah

Orange Colored Sky ~ Lady Gaga

Paper Bag ~ Fiona Apple

The Queen ~ Lady Gaga

Reflections ~ Diana Ross & The Supremes

The Scientist ~ Coldplay

Sisters Are Doing It for Themselves ~ Aretha Franklin & Eurthymics

Stoned Soul Picnic ~ Laura Nyro

Tell Me Something Good ~ Chaka Khan & Rufus

Theme from Mahogany (Do You Know Where You're Going To?) ~ Diana Ross

This Little Light of Mine ~ Julie Silver

Try Jah Love ~ Third World

Warrior ~ Matisyahu

We Went As Far As We Felt Like Going ~ The Pussycat Dolls (from "Shark Tale" Soundtrack)

What I'm Fighting For ~ Matisyahu

Wonder Woman ~ Super Hero Invasion 

Without hearing the music or lyrics, simply reading the song titles out loud is empowering add the magic of the talented musicians and enjoy the healing power of the music of the "Lupus Style" playlist.  

*The "Lupus Style" playlist is now available on iTunes, and in true "Lupus Style" not every song is available for purchase so you will have to dig a little deeper for the entire collection.  

Wednesday
Nov142012

Just say no to negativity.

There's a saying that goes "Never Complain.  Never Explain.  Never Give Advice."  Yet today's prompt is asking me to give advice for dealing with negative feedback in my community so "Never, say never."  Welcome to Day 14 of WEGO Health's National Health Blog Post Month...

As someone who has recently faced adversity for my method of sharing and advocating for Lupus Awareness, I feel compelled to share what I have learned with others.  The hardest thing is writing this post... in fact, I had planned a complete detailed post for the alternatte prompt "My life is reality show." in order to avoid addressing the issue of negativity in the community.  While I was participating in yesterday's WEGO Health weekly #HAchat on Twitter, I decided to scrap the reality show, which happens a lot in the TV business and start thinking about the tough stuff.

Whether your negative feedback comes from an individual or an organization, my advice is the same.  Stay focused on your goals.  Stay true to your heart.  Don't let anyone silence your voice.  Perhaps the person is having a hard day, or in a lot of pain.  I strive to feel empathy.  Having had my share of "bad days" and pain, I understand.  The most difficult negativity for me is when the attacks are in the form of passive aggressive tweets.  If you have something to say about me, you should have the courage to say it, honestly.   My goal is to rise above it.  To soar and find my wings of "flair" - it is not easy.

All I want to do is share that "Lupus Awareness is fun, lupus is not."  A few people have complained that I am too positive.  I am not, ask my husband.  I simply like to share and celebrate what I can, when I can, how I can.  I choose to focus on "Lupus Style".  I am often get empowered when I read or hear stories of other lupus patients or conditions through WEGO Health's #NHBPM or #HAchat.  My advice would be to participate in a #HAchat, there you will find support and a community of friends.  When the so called "haters" show up; stand up and rise above it.  Just say no to negativity.

The stress of negativity isn't good for anyone, especially those with chronic conditions.  I am bewildered when someone who has the condition and knows this intentionally puts negativity out there (on the internet).  My bouts with negativity have made me stronger.  I know that some people want to put duct tape on my mouth and unplug my connection.  I won't back down.  I am who I am - a lupus patient whose voice will not be silenced.