Thursday, 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

Thursday, 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?

Thursday, 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

Monday, August 18, 2014

Lupus & Theme Parks - Part 1: Walt Disney World


Only FOUR days and counting til my wobbly legs land in Walt Disney World! YES, that magical land full of glamorous princesses, perfect princes, dastardly villains, and mystical creatures spun from imagination! I'm pretty sure it's going to be absolutely spectacular but there's just one little wrench that has a tendency to kick all our gears in thee very worst way...LUPUS!

I can't think of how many times I've unknowingly set out for a day of greatness only to have lupus tear it down into tiny little shreds of soul-sucking pain. THIS time will be different though, I can feel it! I'm not exactly feeling my best health-wise at the moment so I know I will have to take extra precautions and numerous steps to ensure I enjoy my vacation to the fullest with minimal kickbacks from Sir lupus.

Thee awesome thing about social media is the power of communication! You can literally talk to just about anyone with a few clicks of a button. That is how I met thee fantabulous lupus brother of mine, Sean Hodgdon all thanks to Twitter! Although we both share the same disease, we learned that we have many other fantastic things in common...one of which is our undying love for all things DISNEY! He loves quirky Donald Duck while my all time favorite is none other than thee diva-licious Ursula!

Since I haven't been to Walt Disney World since I was thirteen, Sean offered to share his 'Lupus Disney Survival Guide' with me, and I in turn am sharing it with you! So grab your mouse ears, and hold on tight, cause here we go!
Here's Sean in Lupus Warrior
action serving Mickey Mouse realness!

Tip #1: Use Sunblock! Sunblock and sunscreen are two entirely different things so make sure you choose whichever one that works best for your skin, is high in spf AND has a good uva/uvb rating. I like Neutrogena Ultra Sport Sunscreen because it has an spf of 100+ as well as a wide spectrum of uva/uvb protection! The sun is often a horrible culprit causing rashes, burns, fatigue, and can actually increase the lupus activity in our bodies! Make sure to pack extra sunblock in your backpack and reapply every 2-4 hours. Wearing a wide brimmed hat and protective clothing is also a huge must for sun protection. Try wearing light cotton apparel, it attracts less sun rays and allows your skin to breathe during the summer season. If necessary there are also companies like Uniqlo that offer affordable UV protective clothing!
*Remember Walt Disney World is in sunny Florida! You're going to need all the sun protection possible to avoid serious lupus casualties. Extra tip: Bring an umbrella/parasol to help keep harmful sun rays away from your skin!

Tip #2: Hydrate! While traveling, especially during the summer season it is easy to forget the importance of drinking water. We often forget that while having a soda or juice our bodies are not getting the necessary fuel that it needs to keep from dehydration. It's super important to remember to have our mandatory 8+ glasses of water a day! If it helps, get a snazzy water bottle that you can refill. Throw some fresh fruit slices/mint in for a fresh twist, or pop it in the freezer overnight to enjoy it chilled throughout the day. If you notice yourself feeling faint, slightly sluggish, or having frequent headaches ask yourself if you've had enough water for the day! Trust me, you don't want to be caught fainting at a theme park due to dehydration! Notice the signs and HYDRATE often.
*All food kiosks will give you a cup of ice water for free when asked, be sure to bring your water bottle so you can refill it throughout the day as necessary. Extra tip: Keep an electric/handheld fan and a spritzer bottle full of water to help keep your temperature nice and cool!

Tip #3Accessibility! To wheelchair or not to wheelchair? That is the question! It's estimated that one will spend about 10-15 walking miles a day at Walt Disney World. For a lupus patient, that can be a serious complication. First things first, make sure you are wearing comfortable shoes WITH cushioned insoles and arch support. Insoles can easily be found in your local drugstore. It is completely okay if you feel the need to rent a wheelchair or mobility scooter. Traveling within a theme park requires immense amounts of energy which for most of us is quite challenging. Having a wheelchair/scooter will help to lessen the chances of being overwhelmed by fatigue or over-exertion. You do NOT want to come to a point where you collapse because you were too "proud" to accept help when needed! It's better to be over-prepared than found lacking. We already know the repercussions of doing too much. Let's listen to our bodies and treat ourselves with kindness. Wheelchairs/mobility scooters can be rented directly from your Disney theme park ($12 daily, $10 multi-day. For excess info, see here). Availability usually runs out by midday so make sure to get one as early as possible. There are no reservations allowed, all chairs are first come first serve.
*If you don't want to chance finding an available rental wheelchair/scooter from the Disney theme park, a great company that has exceptional accommodations is Walker Mobility, at only $30 for the 1st day and just $5 every additional day it's extremely affordable AND they drop it off at your resort and pick it back up once you're done! Walt Disney World has a DAS (Disability Access Service card), however this does not allow line-skipping. If in a wheelchair/scooter, personnel located at guest services lobby can direct you as to how to acquire one. Extra Tip: Non-disability Fast Pass+ is free so make sure to register for it prior to your trip. Disney World Water Parks allow free rental of wheelchairs, Valid ID is required.


Tip #4: Know Thyself! Not only is it a famous quote from Socrates, it's also a necessary rule for us lupus patients. No one can judge your body better than YOU! Know your limits, what your body is capable of, and respect it! Don't "push past the pain." That will only result in more pain! Which is likely to result in a lupus flare or worse. Before embarking on a trip to a theme park such as Walt Disney World, discuss your upcoming trip with your doctor/rheumatologist. Do some research to make sure the featured rides will not aggravate your joints.
Sean says, "Walt Disney World is a very disabled friendly theme park which is designed to provide family entertainment and fun for all ages, it is not an amusement park full of crazy scary rides most likely banned by any rheumatologist with a pulse!
A huge part of knowing thyself is to recognize when you need to rest! Take breaks often. Don't be afraid to let your family/friends know when you're feeling tired and need to recover. Be honest! They're not mind readers. They won't know you need to stop for a moment if you don't speak up and tell them. During the summer park hours are longer.
Sean says, "If you start your day at Walt Disney World in the morning then it's best to head back to your hotel/resting place around noon for lunch. Take as much time as you need to recover, you can head back to the theme park if you're up to it after lunch and then around dinnertime return to your hotel to recuperate for the next day. If intending to experience nighttime entertainment, it's best to have breakfast in/near your hotel then head out around midday."
*Take each day one step at a time. Find out what method works best for you and stick to it! Remember, each of us experiences lupus differently. What works for one may not work for all. So take bits & pieces and learn what helps you most! Extra tip: I like to carry long lasting medicated spray by IcyHot/medicated pain bandages with me at all times while traveling just in case I get some muscle/joint pain that's tough to relieve. This way I don't have to worry about the drowsy side-effects from taking prescribed pain medications while on-the-go!

Tip #5: You Are What You Eat! I know we're on vacation and indulgence is often encouraged, but let's also be smart about the food we are putting inside of our bodies. It's all about balance! It's okay to have a pizza here, a burger there, so long as we are also eating healthy amounts of fresh fruit, veggies, and hydrating with water. Look for foods that have naturally high anti-inflammatory percentages like pineapples, blueberries, carrots, most dark leafy greens/baby spinach, salmon (also spices like garlic, cayenne, ginger, turmeric. Eating generous portions of foods in this category can help to alleviate inflammation in the body which is often caused by lupus activity. To discover the anti-inflammatory rate of your food, see here.) Walt Disney World also allows you to bring your own food inside the park so if you have special dietary needs don't fret! You will find a variety of dining options depending on your personal preference.
* For special dietary needs/allergy information please see here. If it helps, try packing a few light snacks in your backpack for moments when you need an energy boost. Trail mix, nuts are great for that!

Bonus Tip: Here is a printable Disability Accessibility Map for tips, tricks, and visual pointers on how to make your way around the Magic Kingdom park according to your needs.
THIS can be YOU too! Bahahaha!

NOW you are ready for Walt Disney World! Don't overwhelm yourselves with the need to SEE everything. Relish the moment, relax often, and enjoy yourselves. Make a checklist of the things you want to see most, plan to succeed and check your list twice! Was there something you didn't see mentioned here? Have tips of your own you'd like to share? Please post them below, I've got FOUR days to learn all I can before the big day! Remember, sharing is caring. By sharing our experiences with one another, we can help others to succeed. Life with lupus CAN be enjoyable, preparation is key!


P.S. Special thanks to Sean Hodgdon for providing me with all these super helpful Walt Disney World tips, information, and links. Stay tuned for the next #LupusChat, taking place on Sunday, August 24th at 3pm eastern time. I'll be live-tweeting straight from Disney World!

Friday, August 8, 2014

Knowledge is Power: KSS2014

At the KIPP School Summit 2014 in Houston.
I wish I could say that eighth grade was a magical time in my life, but the truth of the matter is that it wasn't. Let's rewind time for a moment and picture 13 year old Tiffany. Peeking through the cob-webs of my mind was a pixie-stick skinny brown girl with multi-colored braces, over-sized glasses, and acne that wouldn't quit. NOT a recipe for popularity I ensure you.

My mother thought it would be a great idea for me to attend a new charter school called KIPP Academy which stands for 'Knowledge Is Power Program.' Unlike any public school in New York City, KIPP held classes from 7:30am til 5pm daily. Friday was our only early day where classes ended at 3:30pm, however it was also mandatory career day which meant we had to dress business professional. Saturday school was mandatory (except for me, because at the time I was a Seventh-Day Adventist). I know you're thinking this is intense but trust me it gets even better! Summer school is also mandatory. They lovingly "bribed" us with McDonalds after our weekend and summer classes, I don't know any child who would say no to a happy meal! HA!
In the eighth grade at KIPP Academy in the Bronx,
year 1999 with Mr. Frank Corcoran.

I didn't get in trouble often, but when I did it was with a capitol T. To this day I can still envision my principal, David Levin's beet red face only 2 inches away rattling off all my errors in this bellowing voice that echoed down the hallways. His lip would do this little quiver if he was especially irritated. Back then as punishment we had to write the lines of the KIPP Commandments (I'm SO not kidding!) I spent hours writing them over 500 times...and do you know what happened when I turned them in? Mr. Levin ripped them into a million confetti pieces and told me to DO IT AGAIN! HAHAHA! Ahhhh those were the days!

Now don't get me wrong, it may sound like every child's worse nightmare but I have NEVER EVER regretted my time at KIPP Academy. I didn't grow up with a father in my life. My positive strong male role models were my TEACHERS. Mr. Levin, Mr. Corcoran, Mr. Tanco, Mr. Martinez, Mr. Myers, Mr. Randall were my father figures. They taught me to exceed the expectations of my surroundings. They taught me to BE NICE and WORK HARD always. To ask for help whenever I need it, and give help whenever it was asked of my fellow KIPPsters. They took us on school trips to Washington DC, Utah, Pennsylvania, California! They showed us the world beyond our barrios in New York City.

Right to Left: (Upper) Mr. Dave Levin & I,
(Lower) Mr. Frank Corcoran and Mr. Hugh Chen & I.
When I went off to High School they stalked...kept in touch to make sure I had all the college prep help I needed. There I met the remarkable Mr. Hugh Chen who now works for the KIPP College Prep High School. I will never forget the day I sat stranded on my first day of college because I didn't have the proper forms, and my mom (mother of six) wasn't able to help me. It was Mr. Dave Levin who made sure I wasn't stranded in the street somewhere in Tampa. All of these selfless men have given their hearts and soul to help children in need rise above the status quo and accomplish dreams we didn't even know were possible.

Last month on July 31st I set off to Houston, Texas for the KIPP School Summit 2014 to celebrate the 20th anniversary of KIPP! What began as two small schools, one in Texas and the other in the South Bronx grew so large that now we have thousands of students, teachers, alumni nationwide! As a student of the 1st original KIPP NYC founding class I can say I am proud to have been given this chance to be a part of something bigger than myself. I am honored to have helped pave the road where hundreds of children will come to learn that they too are destined for GREATNESS.

Allyson Elizondo speaking at KSS2014
Photo credit: KIPP Foundation
Allyson Elizondo, a young KIPPster in the 6th grade got on stage at the summit and blew me away! With over 10,000 people in thee audience she stood up and spoke with courage about her lupus diagnosis, battling kidney disease in the hospital, and exclaimed she would NOT take shortcuts for less homework even though intense fatigue often makes

it difficult for her to finish her work. Then she said these words, which I will always remember:
"Some people think I can't do the same things, but I'm proving them WRONG! I'm going beyond what's possible" ~Allyson Elizondo"
With knowledge comes power! I was taught this long ago and it is the strongest belief that resonates with me to this very day thanks to the KIPP Academy. Four years ago I had NO idea what lupus was until it was slid across the top of my doctor's office on an information pamphlet as I was being diagnosed! Things have changed! Now fellow patients are blogging their stories, doctors are live-tweeting their rheumatology conferences, health organizations are having open conversations on Facebook, and I host a live Twitter chat every other Sunday at 3pm eastern time using the hashtag ~> #LupusChat as well moderating the Friends Against Lupus page on Facebook. Know that you are NOT alone with lupus. If you have questions or need help, ASK. There is always someone to talk to, if I can't help odds are I may know someone who can. Don't give up hope, never discard your dreams. Like Allyson said, GO BEYOND WHAT'S POSSIBLE!

Love & glitter,

Tiffany Marie Peterson (@Tiffanyandlupus)

Tuesday, July 8, 2014

Down The Lupus Rabbit Hole!

Photo Credit: Michelle Claessens
It's been a long time since I picked up my writing pen, but here I am back at it again. So much has transpired since we last spoke...I almost don't even know where to begin. It's as if I have been swirling down a rabbit-hole of health care and boy has it been a scary road to walk....or tumble in.

In 2012 I struggled through four months of being in and out of the hospital during Hurricane Sandy were brutal. I am thankful that the power of social media helped me receive safe passage to my family hospital. I remember being in a E.R. where all of the nurses on the floor had no clue what lupus was! What kept me safe was having a health care proxy that was well informed about what to do should I be unable to make health care decisions on my own. No treatment was done until it got past mama bear!

Lupus can be a cruel mistress. An un-spotted UTI gone sepsis in my blood stream led to failing organs and mental health issues. MRIs, brain scans, spinal taps, blood transfusions were some of the many procedures prescribed for me. I almost didn't make it out the health care system alive. I remember asking for DNRs (Do Not Resuscitate) forms in case my quality of life became a vegetative state. I remember having to re-learn how to become accustomed to daily living and caring for myself.

My awesome family being supportive during my 2012 hospital stay.
Everyday I strove to do better, and wondered how the outside world was doing. My family was very closed via social media on my condition. I now have instructions on who is to be informed about my health while I am away and unable to be online. So many of you were worried sick and (heaven forbid) if there is a next time I fall ill, my family will know how to communicate better so that my online lupus/health family are in the know.


It's been almost 2 whole years since my major hospitalization and I'm only just recently during these past few months feeling back to my normal glitterati self. There were days when I looked in the mirror and didn't recognize myself. Steroids had ravaged my body. Psych medicine had tormented my mind. There needs to be more discussion on lupus life for those of us who are living with it. Which medications affect how dangerous sun rays damage our skin? When is it time to seek a therapist? What foods can help ease inflammation? What are the top 10 questions to ask your rheumatologist? There is so much we NEED to know and not enough current information on how we can have a better quality of life.

So I ask you this now, what burning questions do YOU have about life with lupus? What do YOU wish there was more of for us patients? Let me know!