June 29, 2015

Tiffany's Back, ALRIGHT!

*tosses glitter*

Huzzah! Yes, the title of this post should be screeched at ridiculously high pitched volumes in the style of the famous Backstreet Boys song from my tween days. How have YOU been!? I've been so busy lately but I can't wait to share what I've been up to with you.

2015 has been such a great year for Lupus. Clinical trials are on the rise. Studies focusing on how Benlysta affects people of color are currently in effect so if that applies to you please speak to your doctors about participating in a clinical trial and help provide accurate research that can lead to a cure! You can find more information about this clinical trial here.

Lupus Patient Advocates at the #GSKsummit

In May I attended the 1st Lupus Summit held by Pharmaceutical company GlaxosmithKline (GSK). It was an amazing experience! I was surrounded by so many familiar faces from the online Lupus community. Shanelle Gabriel (@ShanelleG), Amanda Greene (@LaLupusLady), Sara Gorman (@DespiteLupus) and many others. Together we sat down with GSK and discussed how they can help improve the lives of the 1.5 million Americans who are affected by Lupus. I'll be sharing a full transcript of the event later this week so keep your eyes peeled for that!

Representative Daniel Donovan Jr & I at Capitol Hill in DC
This June The Lupus Foundation of America brought patients to Capitol Hill in Washington, DC to speak to their state representatives and senators about approving NIH funding for Lupus research, approving the 21st Century Cures (H.R.6), and joining the Congressional Lupus Caucus.
Representing New York City I attended meetings and spoke with Senator Charles Schumer, Senator Kirsten Gillibrand, and Representative Daniel Donovan Jr. Each of them expressed heartfelt commitment to supporting lupus advocacy and research. I look forward to connecting with my local representative Daniel Donovan Jr. since we're in the same borough of Staten Island! He was very patient and asked so many questions that I truly felt that his concern was genuine. You can see all the wonderful people who joined the LFA Advocacy Summit via YouTube here.

Being able to share my experience of living with lupus with the hope of improving patient lives globally truly drives me each and everyday as an advocate. Speaking up and showing the world what daily life is like can be scary! There will always be "trolls" who will try to judge, ridicule, and push you into a dark corner. Just remember that your voice DOES matter and each time you speak up, a lupus sister/brother feels less alone!

Are you also an advocate for Lupus? Did you raise awareness this year? Tell me how in the comments!

Glittery Hugs,
Tiffany Marie


October 23, 2014

Do You Even KAWAII? | Get Messy Art Journal: Week 3

BOOM SHAKA LAKAAAAAAAAAAAAAAAA!!!!! (In thee words of T.O.P. from Korean Phenomenon and my ultimate favorite "Boy Band" Big Bang)
Lupie Love! (Sean (right) & I (left)
I'm on week THREE of #GetMessyArtJournal and I have to say I just absolutely LOVE what the creativity it inspires in my life. Since I've met Caylee I literally GET SH!T DONE & with EXTRA glitter, can you imagine what "extra" glitter looks like in my world!? A cascading shower of endless varieties of never-ending glitter WATERFALLS! 

So I was up late one night talking to my lupus brother Sean Hodgdon, (insomniac thanks to lupus AND prednisone) and he just happens to mention that he'll be in New York City for a few hours to see a Broadway show. I heard none of the other 5 minutes of his conversation, I literally stopped breathing as soon as he said, "Oh yeah, I'll be in the city for a few hours because..."
Get Messy Crafting Supplies!

We decided to meet at Starbucks because it has free wifi, tables, and COFFEE also I love them long time for over 10+ years now. Worked there for almost four years but that's a story for another day! As soon as we snagged a cushioned table on a blustery New York City day right near thee outlets at 52nd and Eighth Avenue (unheard of I know!) Before he uttered a singe word, I leaned in super creepily close and whispered, "Let's GET MESSY! We're going to have crafting time!"

Plopped two blank and boring surgical masks and a horse-load of sparkle infested stickers on top of a Starbucks napkin lived table because GERMS and seconds later we were two magically inspired lupies having a #LupusStyle moment of KAWAII SURGICAL FACE MASK Glitterati Epic-ness! I haven't the words to tell you just how AMAZEBALLS meeting Sean for the first time after we've been chatting on every social media platform known to man for over two years. It felt like we were family, and we are! I've never let anyone tell me that "my friends in the box (computer)" aren't real. At times they are more supportive, understanding, and caring than my own blood and bones. Our friends are the family we CHOOSE. Remember that! Never discount or under-appreciate your online relationships because they transcend and do exist in REAL life.


Kawaii Surgical Masks in Progress!
(Bottom Left (Sean's Mask) & Bottom Right (My Mask)
Get Messy is a remarkable community of magical women, created by two epic GIRLBOSSES by the names of Lauren and Caylee! I'm so honored and happy to be invited into the fold of creativity. I hope you are too. Be inspired, get creative, dabble in glitter, DANCE in it! Let it consume you and take away your pain, sadness, and loneliness. Then SHARE it with us, use the tag: #GetMessyArtJournal on your social media sites. I want to see what YOU'VE created! Ready? Set? GO!

Xo,

Tiffany Marie Batista Peterson

October 16, 2014

I Have A Dream | Get Messy Art Journal: Week 2

Sooooooo.....it's my second week of committing to the Get Messy Art Journal challenge and I must say I'm completely obsessed! 




There's something magical about crafting and creating something from piles of bits and bobbins. Maybe it's just me always being in touch with my inner glitter girl, but if this resonates with you let me know I'm not a mad woman with a penchant for things that sparkle!

On this particular crafting day I was in Washington DC on business. I'm not just a Lupus Warrior; I'm also a ePatient Healthcare Advocate! What does THAT mean you ask? I'll tell you! Being an "ePatient" means that you've decided to stop being a passive patient and make a strong commitment to yourself to be encouraged, engaged, enlightened, and if need be electronic about your own health! I mean why wouldn't you? If you don't take the initiative to be informed about your health then how can you expect anyone else to? It's your life, you've only got ONE! So take charge and go from passive to ePatient!

I had thee amazing opportunity to stay with my ePatient sister Jess Jacobs in Washington DC for National Health IT week. I'd been asked by the ONC (Office of the National Coordinator for Health Information) to give a presentation on the importance of patients having access to their health data online, I called it "Let The Patients Help!"

I never thought in a billion years that I would be asked to represent the patient voice for over 5 million people worldwide, especially in the capitol of America! While having funtastic "Get Messy" crafting time with my ePatient sister Jess, I began to think about all of thee remarkable pioneers who campaigned and raised their voices for worldwide change right in Washington DC. There are so many to choose from, but the one who resonated with my soul the most was Martin Luther King Jr. with his 'I Have A Dream' speech. In spite of all the trials and tribulations he had endured as a Arican-American man living in America he had STILL dreamed of great things to come! I'm inspired by him every single day, hence my statement for this weeks Get Messy Art Journal pages, " I have a Dream, to Inspire." I absolutely LOVE my birthday Polaroid camera from one of my darling cousins, snapped some stills of The Little Mermaid 3, tossed some glitter and BOOM, I got MESSY!

I hope to inspire not only those living with lupus, but also doctors, hospitals, organizations, and countless others. It is my dream that every good deed I put out into the universe blesses someone with the will to go out and do good things in the world. From a young age, my mother always taught me to do the right thing. My favorite quote I live by was passed onto her from my abuelita. She said, "If there is something missing, BUILD IT. If there is a void, FILL IT. Or else YOU become a part of the problem."

What are your dreams and aspirations in life! Share them with me! Speaking them into existence is the first step in believing in oneself. So tell me, do you have a dream?

October 2, 2014

Get Messy Art Journal: Week 1

It's me Tiffany!
& I'm getting MESSY!
Ta-daaaaaaaaaaaaah! *throws handful of glitter*

Today is unlike any other day. Today is thee day I share one of my new-found crafting obsessions!
You can see my #GetMessyArtJournal pages here or on my IG.










The Get Messy Art Journal Project!
What's that you ask? Don't worry! I'm going to tell you. One iridescent piece of glitter at a time!

The Get Messy Art Journal challenge created by two fabulous lady friends of mine named Lauren Hooper and Caylee Grey.

It's a creative space where a gang of crafty vixens are sharing art journal pages we have created to practice our skills and push past our creative limits with hopes to inspire. We share our pages without restraint every week, and once a month we create around a prompt. Go check out these crazy talented ladies who are creating pages who each have a unique perspective and style. We will be sharing our work around social media so follow the hashtag #getmessyartjournal

Without further ado I introduce my first #GETMESSY pages...




 I was inspired by Olya and her amazing watercolor art journal pages. I ran to my local Walgreens drugstore and bought a Crayola watercolor kit (the basic one with 8 colors).

Unearthing my acrylic paint brushes, a drawing pad, and some foam letter/symbol stamps that I purchased years ago from my favorite crafting store Michaels, I took my small mountain of crafting supplies out to my backyard. It was just the right amount of sun per cloud ratio where I could feel toasty but not be burnt to a crisp! I sat on my patio under the umbrella so as not to aggravate a lupus flare/or malar rash due to sun exposure. 

I took my Canson drawing pad and decided to recreate it "Get Messy" style! & ta daaaaahhh! There you have it. I used watercolors for the background and acrylic paints for the stamps. My favorite part is the watercolor splashes across the page giving it that "messy" vibe.


This quote has always resonated with me. To find that person who accepts you just as you are...flaws and all. It's not just a Beyonce song, it's REAL. There are people on this earth who will  love YOU for you. Individuals who see your imperfections as magically crafted snowflakes, as extra frosting on a cake, or extra fries at the bottom of their Happy Meal. It is my wish and hope that YOU find people like this in your life. Don't despair, it will come when you least expect it. So don't go searching, let them find you. Be patient. Enjoy life as it comes, relish each moment. Live in the NOW. Then one day, like a deer in headlights, you WILL FIND your people & they will caress each imperfection as a gift bestowed upon them, goddess like.


Hugs & Glitter,

Tiffany Marie