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Entries in HAWMC (34)

Tuesday
Apr172012

Limitation Lesson Day 17 #HAWMC

I am pretty sure that WEGO Health did not have the somewhat awful movie "The Hard Way" in mind when they were creating the Day 17 #HAWMC post.  However, I have spent over 5 of the 15 mintues I should be writing doing nothing but thinking about it; in fact I can not stop thinking about the film that "starred" Michael J. Fox and James Woods.

The Hard Way Poster

There have been many lessons that I have learned as a 44 year old woman living with Lupus.  A lesson that I learned that hard way was acknowledging and accepting the limitations (aka: realities) that my chronic illness creates for me.  An example would be that I am limited due to my Lupus because I am photosensitive- I may not be able to "bake" in the sun to get essential Vitamin D directly from worshipping the sun but I have found a way to enjoy my time in the shade.  I no longer feel like I am missing out.  Aside from taking Vitamin D supplements, I get an airbrushed tan when I truly need to have a bronzed glow.  There is nothing healthy about wrinkled skin- forget about the increased chances for skin cancer and premature aging.  This is an example of how I take a limit from Lupus and transform it into a blessing.  I am avoiding the risk of skin cancer and I look good without weathering my fragile skin.

Another lesson, though it does not realte to my health focus: don't waste your time on the movie "The Hard Way".  If you want to see Michael J. Fox in a train wreck of a movie,. watch him and Joan Jett in "Light of Day".  The title may seem inspiring and the title song and soundtrack capture the essence of bad late 80's rock.  This is coming from a true and devoted fan of Michael J. Fox and most of his work. (Overshare alert: I even have a pair of purple Calvin Klein underwear autographed by him framed on the wall of my office.)

Light of Day Poster

To be fair, Michael J. Fox was not the only actor from "The Hard Way" who has made bad movie choices. James Woods was in a movie called "True Believer" and since I am using movie titles to help me convey the lessons I have learned in today's post, one lesson I have learned is that no one will believe in you unless you believe in yourself.  Believing in myself was close to impossible for me when I was first diagnosed.  It was easy to believe what I was told at the so-called support groups.  I chose to believe that I would find a way to create a life with Lupus.  So here I am writing a snarky post hoping to share a lesson with you.  I believe that whether you believe you are going to find your path to wellness or whether you believe that your condition will suffocate your life away.  What you believe will find a way to become your reality.  I am not a doctor, nor do I claim that this "believing thing" will guarantee you a healthy life, but I can tell you that it is working for me.

True Believer Poster

Whether you learn The Hard Way I hope you know that by being a True Believer you can find the Light of Day in your daily challenges!

I suppose I got a bit snarky in this post.  One post at a time, conquering the challenge.  Today's WEGO Health #HAWMC Prompt: Learned the Hard Way.  What's a lesson you learned the hard way? Write about if for 15 today.

Monday
Apr162012

Pinning It Together. Day 16 #HAWMC

I have different bulletin boards in my house.  I enjoy pinning something on them whether it is an invitation to an upcoming party or an inspiring quote from a magazine.  Pinning something on Pinterest is much like sharing my bulletin board.  I have been having a lot of fun creating my various Pinterest boards.  I do have passion for somethings other than Lupus Awareness.  This is the Pinboard I created called "Lupus Awareness is Fun!" http://pinterest.com/lalupuslady/lupus-awareness-is-fun/ 
I have chosen these three images from it for today's WEGO Health Health Activist Writer's Month Challenge. "Pinboard. Create a pinterest board for your health focus.  Pin 3 things.  What did you pin? Share the images in a post and explain why you chose them."
 
Lupus Awareness is fun, but it is not pretty.
I chose this image because it is a depiction of some of the ways Lupus can manifest itself within the body.  Every Lupus patient is unique, as the image says symptoms vary within the individual.  After living with Lupus for 28 years I am passionate about sharing Lupus Awareness because I have experienced the symptoms personally.  My body and I have come to an understanding with Lupus, if we don't aggrevate it, it won't aggrevate us.  There is no scientific evidence that this method works. but I find it helps me feel a sense of control, when a diagnosis with Lupus made me feel like I had no control.
* Image original source from the U.S. National Library of Medicine  http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001471/
The Lupus Initiative ~ eliminating health disparities in lupus
I chose this image because one of the reasons I advocate for Lupus Research is because 9 out of 10 Lupus patients are female.  Lupus is 2 to 3 times more common in women of color (African Americans, Hispanic Americans/Latinas, Asian Americans and Native Americans) than women of European descent.  The sexual and racial disparities in Lupus must be addressed, it is my hope that through the Lupus Initiative medical professionals will have access to the tools they need to properly serve the Lupus patient community with speedy diagnosis, proactive treatment and innovative research.
* Image original source from The Lupus Initiative http://www.thelupusinitiative.org/content/medical-health-educators
The Alliance for Lupus Research is amazing, 100% of every donation directly supports Lupus Research!
I chose the image above because it is the mission statement of the Alliance for Lupus Research.  I support every organization whose goal is to support the Lupus community and eradicate Lupus.  The ALR is my favorite.  The Alliance for Lupus Research is unique because 100% of every donation made directly supports the most promising Lupus researchers across the globe.  Together, we will cure Lupus.
*Image original source from the Alliance for Lupus Research  http://www.lupusresearch.org/about/together-we-will-find-a-cure.html
Have a Pinteresting Day!
Sunday
Apr152012

Dream a little Dream... Day 14 #HAWMC Post

Dream a little Dream... Today's post is short and sweet.

My DREAM Day would be one where I wake up without pain.

The day would start simple and be filled with the simple joys of a pain-free day.

Whether I was home in LA or on a trip to NYC.

Ideally, moving my body doesn't hurt.

Ideally, the smile on my face is genuine and not "planted" on.

Ideally, I would be in New York and head to MetLife Stadium for a Jets game.

Ideally, I would be in New York and I would have the energy to shop.

Ideally, I would not have to stop the fun and have to take a hotel nap break.

Ideally, I would have the strength to raise my arms because today I feel like I have beat Lupus.

Friday
Apr132012

My "IT" List #HAWMC Day 13

There is no substitute for love, this is my "IT" List.  Ten things I love...

1 My Cat, Rex - If you have ever had a pet, you know the unconditional love that I share with Rex Ryan, my tuxedo cat.  The unspoken bond I share with my “fur baby” is one that often has me wondering “who rescued who?”

2 My Garden – The work and pleasure I receive from tending the plants and flowers in my garden is a results-based endeavor, they don’t talk back and they need me to survive, and when the flowers bloom they are naturally beautiful.

3 My Team - No one living with chronic illness can do it alone.  I love my family, who had no choice, my husband and friends who are members of my team by choice.  Thanks to them, I feel that I can wage the battle and win my war against Lupus.  They keep me grounded while I reach for the sky.

4 My Teams - Everyone needs a team or two to root for and support.  As someone living with Lupus, I am no different.  I am grateful for my love of sports and my passion for the teams I support.  My teams are the New York Jets, the New York Yankees and Team USA.  (I can't wait for the Olympics!)

5 Music - Listening to Lady Gaga, the Grateful Dead, The Doors and Aimee Mann, it doesn't matter if I get up and dance, sway in bed or "rock out" with the car radio blaring, I find there is a magical healing that happens when I hear music that moves me.

6 My TV - Like My Teams and Music, whether comedy or drama I need "my shows" to assist me when my mind starts to work overtime.  Nothing works better than escaping into the world of familiar characters to distract me from the realities of my life with Lupus.  My DVR currently has a variety of shows including: The Big Bang Theory, Two Broke Girls, The Good Wife, Leverage, The Unit, Mad Men, New Girl, Mary Tyler Moore and The Bob (Hi, Bob!) Newhart Show.

7 My "Bag of Tricks" - as a "crusader" and "Lupus Warrior", I have a bag of tricks.  Most women, carry purses but the contents of my bag make it a necessity.  Inside the bag is a "make up bag' so I can put on a happy face whether I feel like it or not, usually a little gloss acts as a "mood elevator" as well as lip covering.  My purple boots are in there as well, so I can kick Lupus to the ground.  My bag also contains my cell phone and iPad essentials the keep me connected.

8 Meds - from Asprin to Xanax and what seems like everything in between... My arsenal includes a wide array of pills and remedies from traditional Eastern and modern Western medicines.

9 Acupuncture - This ancient Chinese wellness helps keep my body a "flare-free" zone.  I love how I feel during and after the treatment.  I strive to get "needled" once a week.

10 Community - I love my Lupus sisters and friends.  I feel that my community has become an extension of myself.  There is a true sense of unity in our community and the strength we share empowers us all.

That's my "IT List" for WEGO Health's Health Activist Writer's Month Challenge Day 13!

Wednesday
Apr112012

My Theme Song ~ Day 11 #HAWMC

I love "the Serendipity of Twitter".  The words of Jeff Pulver (founder of the 140 Character Conference and the State of Now @JeffPulver) ring in my head and embrace my heart as I begin this post for @wegohealth Day 11.  Some of the prompts for #HAWMC have given me trouble while others have been easy to write.  I would like to thank the #RVSX team who helped me with this post while they were on their way to South by Southwest last month.  While on the journey (aka: road trip!) from Chicago to Austin via an RV my friends on #RVSX had a Twitter contest.  The first person to call into a special 1(800) phone number would win a song written for them by Jason Curry https://twitter.com/#!/jsncurry a professional musician and awesome banjo player.

By the time I saw the tweet from Melissa Pierce https://twitter.com/#!/melissapierce (a friend that I met through Jeff Pulver's 140 Conference), it was about 10 minutes old.  I figured there was no way I would be the first person to call but when Melissa answered and I asked "Am I the first caller?" it turned out I was.  The RV was outside of Memphis.  After a quick conversation with Melissa about how the trip was going she passed the phone to Jason who asked all kinds of questions about me and what I liked.  He even went on to my facebook page to get some further insight.

The resulting song makes me smile from the depths of my "big ole heart".  Though it was written with me in mind, I feel Jason captured what any woman/lady/girl who lives with a chronic illness goes through every day.

There are no words that can fully express my gratitude to the RVSX Team of Melissa Pierce, Jason Curry, Jon Andreyo https://twitter.com/#!/jonandreyo (he plays great trash can/bongos), Molly Cantrell-Kraig https://twitter.com/#!/mckra1g and Roger  https://twitter.com/#!/irunfromknives who shot and edited the video of the song for taking the time to make me feel incredibly special.  Roger's other videos can be seen via http://www.youtube.com/irunfromknives

The @wegohealth prompt for today is THEME SONG.  Imagine your health focus or blog is getting its own theme song.  What would the lyrics be?  What type of music would it be played to?

http://www.youtube.com/watch?v=bwMLYd6crQU

http://blog.rvsx.tv/

The lyrics to Amanda's Song written and performed by Jason Curry

Get up and get on moving.

You're alright, you're good and groovin'.

You're a good girl

that works so hard changing peoples lives

with your big ole heart.

 

It's a new day to dig your feet in

and clap your hands and keep repeatin'

and you're a sweet girl

that know how to fight as best you can, to make things right.

 

Get up and keep on moving.

You're alright

You're good and groovin'

You're a good girl

that works so hard changing peoples lives

with your big ole heart.