November 29, 2010

Case of the "Prednisone Blues"!

 I know it's bad news to be in a funky mood around the holidays, but lets face it! Lupus usually doesn't give a toot whether we've got a lot to be thankful for or even if we've been mostly good this year and Santa has promising treats around the corner.

Last week while I was watching the wedding episode on Glee I burst into a fit of uncontrollable tears! Mostly because the wedding was so full of mushy emotions that lonely lupies tend to dream about. Especially me.

I point blaming fingers at those nefarious lupus medications for most of those tear-jerking reactions! Just peeking at the side effects from one of them is enough to send most people into an epileptic fit!

When I sit back and think about it; some of my scariest moments are when i'm battling the "Prednisone Blues". You know what I mean! Those moments when you feel like nothing will ever go right. When the uttered words "But you don't..." provoke colorful thoughts of violence. Like when you wonder if you're just destined to live alone with 50 cats and even more prescription bottles. Or when you begin to ponder where all those people you used to call "friends" have wandered off to. Yes, THOSE moments. I like to call them the "Prednisone Blues" and as daunting as they may be there IS a way to get RID of them!

Words have the power to heal <3
While wobbling my swollen knees up the stairs to my bedroom my eye caught sight of an envelope in one of the stair corners. A devilish Cheshire cat grin that would put Alice in Wonderland to shame inked its way across my face! It was addressed from one of my lupus sisters that I met while on my self-discovering lupus journey this year.

As I read her Christmas card the hairs on my arm began to rise, my eyes produced storm clouds and I wept. They were happy tears though. Her very words gave me the physical strength I needed to remind myself I WILL see another week. That I WILL make it to see next year. Her words gave me the sweetest comfort that I am NOT alone in my fight against lupus. That she is here fighting with me as I am with her. Who could have thought that words have healing powers!

All it took was a simple letter to remind me that these "prednisone blues" ain't got nothing on my lupus sisters!

So today I challenge you to spread some cheer this holiday season. To take out those dusty writing skills that have been forgotten in the frenzy of the e-world and WRITE a letter, MAIL a card, and send some magical mail through the post to a fellow lupie or any person who you'd like to know that you care about them. You'll be surprised at how much a piece of paper can brighten someones day!

Let's not be slaves to the internet! It's time to take power into our own hands and make a little magic happen this holiday. This is my little way of nudging you on the shoulder & opening your eyes to something beautiful, something so much larger than just you and I. Let's start a chain of care; one that doesn't end with us but continues all around the until everyone has a bit o' magic in the mail! So remember to ask fellow friends whether they be local or on the web for their addresses so you can send them a special something. If you receive some "magical mail" you HAVE to send one out; those are the rules! Let's help heal each other!
There is Magic in the Mail!

Ha! Who says we're alone? Never! Love is right around the corner, sealed in an envelope of Magical Mail! I only hope the post man doesn't think us loony bin for pestering him missing mail!

Well have you written a special someone yet? Get to it! Ready? Set? GO!

xoxo Tiffany Marie

November 12, 2010

Lupus Cheerleaders? RAH RAH RAH!

How are you my sweets? Hope everyone is managing to stay warm as the season gets colder.

I didn't realize just how chilly New York City has become until the frosty morning of November 7th; day of the ING New York City Marathon! In which there were 38 runners supporting the S.L.E. Lupus Foundation; running on team 'Life Without Lupus'!
RAH!I'm cheering in Upper Manhattan! 
I geared up in "lupie winter fashion" & headed out to 92nd street and 5th avenue to cheer on the 38 runners on team 'Life Without Lupus'. It was often hard to catch them in photos because they were SO fast; I could tell they were 100% committed to their cause!

I specifically remember one runner; his name is Drew. As he approached my cheer spot I noticed he looked drained. His eyes a bit unfocused. I sucked in all the air I could manage and bellowed "Come On Drew, you got this! Go Team Life Without Lupus!" and stretched my arm out to clap his hand as he passed me. It was like a million watts lighted up his face as he put slapped my palm and put extra pep in his step!

It was the least I could do, and now I'll forever remember that moment. From lupus patient to "runner for lupus"!

Team 'Life Without Lupus' proudly represents in New York City & across the globe; and the ONLY lupus organization to host a team in the ING New York City Marathon!

Brooklyn Cheer Team
There were several "cheer teams" spread across the city. The first beginning in Brooklyn, several in lower/upper Manhattan, and one in Harlem. All with the goal to cheer, support, and encourage all 38 runners who courageously set off on a chilly NYC morning to run 26.2 miles for a great cause!

Together they raised an amazing total of  $130,000 in support of patient services & research to find a cure!

When I'm having a particularly crummy day news like this helps to smile another day. I may not be healthy enough to run a marathon for my illness; but there are lots of people out there who are doing it FOR us, and thats a blessing in itself!

The New York Daily News wrote a moving story about a Team Life Without Lupus runner: “Shawn Gates won't let lupus catch up with her; she plans to use Marathon as fund-raiser to find cure”  You can read about Shawn's story HERE!
Shawn Gates "Life Without Lupus Runner"

You can even view footage of the runners on the Team Life Without  Lupus Facebook page!

Wonder where all the funds are going? Take a peek over at S.L.E. Lupus Foundation to see the latest lupus news & all the amazing support services they offer lupus patients and their families. Learn different ways YOU can help in the fight against lupus!

The important thing to remember is that we are NOT alone in our battle. So reach out & let someone know you're fighting with them <3

November 10, 2010

LRI: On The Road To Success

Hello lovies!

Many of you may already know several foundations and organizations that are doing things to spread lupus awareness. However, I'd like to share how one phenomenal organization goes above and beyond to provide REAL support and proven success while searching for a lupus cure!

The Lupus Research Insitute is the world's leading private supporter of ground breaking research in lupus, the LRI encourages scientific risk-taking leading the way to solutions for the sometimes confusing and dangerous autoimmune disease called lupus.

I was absolutely honored to attend an informative press briefing which occurred on October 18th at the Marriott Marquis Hotel in New York City as a representative for The Lupus Magazine.

With an awesome headline like, "Driving Discovery Through Innovation"; A Decade of Impact in Lupus Awareness" its a wonder I was able to sit still in my seat!

A key point from the LRI research report are:

  • Within 10 years of research they have a success rate of 80%!
This means that 80% of the LRI-funded investigators were successful; as well as having their discoveries published, featured in top journals, and received major funding to follow-up their studies!

Want to know who the "queen of lupus research" is? Who is behind the possibility of a "inflammation turn-off switch"? Or just how much money the LRI has generated in millions for lupus research? 

You can read my full article explaining the "Driving Discovery Through Innovation" LRI report featured in the The Lupus Magazine's new November issue HERE!

Or you can read the complete report by the Lupus Research Institute at their website HERE.

Feel free to learn a bit more about the amazing people behind the success of the LRI and their ground breaking discoveries in lupus research!

"Watch the story of the Lupus Research Insitute (LRI) and its national network of patients, family members, scientists, physicans and advocates as they work together to put an end to this devasting disease.

Also please help the LRI spread this message of hope! If we work together towards prevention, a lupus cure is sure to be in sight one day!

Stay Strong lovies! Together we are strong!
*& hearts*

November 9, 2010

New Movie in Review: Love Simple

Hello Lovies!  

I'm overflowing with excitement about a NEW film that is now available internationally today November 9th! 

Love Simple (Not Rated)

In one sentence I'd describe it as: A Breath of Fresh Air!- Finally, a movie definitely worth seeing! 

Mark Von Sternberg's film "Love Simple" is the one of a kind, a love story with a lupus theme! 
Adam (Francisco Solorzano) & Seta (Patrizia Hernandez)

A story about two people who discover whether their love is real enough to hold them together just when everything else seems to fall apart. 

Adam (played by Francisco Solorzano) feels trapped at home caring for his asthmatic father while Seta (played by Patrizia Hernandez) finds herself hiding behind her embarrassment of having lupus. Both weave a web of lies in their attempts to impress each other for the sake of LOVE! 

"Love Simple" paints a story that each one of us can relate to. From the colorful lies we paint to make us seem more "impressive", to the awesome best friends who sometimes give us the "not-so best" dating advice. 

Prepare for a sprinkle of laughs, mouth-dropping scenarios, and even some tears all mixed together to tell a story; and when the credits roll prepare to be a strong believer that love is simple even when we complicate it!

This is a film you can't say no to; and why would you when 10% of the film's sales will go to the S.L.E. Lupus Foundation to help fund lupus research! You can find "Love Simple" for purchase at these following retailers: Amazon, Walmart, Target, Bestbuy, and iTunes

To view a sneak peek of the film "Love Simple" check out the trailer below & don't forget to read all the latest happenings in the NEW November "Love Simple" edition of The Lupus Magazine this month!

Loving you always, Stay strong lovies!
Tiffany Marie *lupie kisses*