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 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!

Thursday, May 3, 2012

The Patients Will Tweet You Now

Let's bring our lupus voices together and chat!

In honor of Lupus Awareness Month this month of May, WEGO Health is bringing together active members of the online lupus community to discuss important community issues, myths & misconceptions from the community, and the needs of lupus patients online.  

I hope you will join me in helping to raise awareness about lupus and educate other Health Activists and patients living worldwide with our condition.

This online Twitter chat hosted by Wego Health will take place this Friday worldwide at 2pm-3pm Eastern Time in this online chat room using the hashtag #HaRoundtable ~> Chat Here!

Here are a few details about how to join the Health Activist Roundtable on Lupus:
  • If you don't have a Twitter account; make one! It's free to sign up & "tweet."
  • Log into your Twitter account 10 minutes before the scheduled chat time.
  • Make sure you're following @WegoHealth on Twitter.
  • Open up a new tab, and log into the designated Tweetchat room.
  • Then join in on the conversation & make sure to include #HaRoundtable in your tweets.
The great thing about joining an online chat room to talk about lupus myths, misconceptions, and how we can raise awareness about our illness is that each of us help to educate and inform others within our online communities. So feel free to share this event with your friends, followers, and community members to help raise lupus awareness!

If you have any questions or concerns about how to make a twitter account, join in on the Wego Health #HaRoundtable discussion on lupus please let me know; I'd be more than happy to help assist you!

Ahhhh can't wait to chat with you this Friday at 2pm Est ~> HERE!

Tiffany Marie Peterson

Monday, April 2, 2012

The Batista "Health" Rights

How I Envision Lupus Warriors
"Superpower Day. If you had a superpower – what would it be? How would you use it?" - Wego Health

As fascinated as I am with the wide world of Marvel and DC Comic superheros; I can't seem to decide on a single superpower.

While pondering I flustered over whether I'd have super flying strength, but what good is that if someone throws a piece of kryptonite at you? I could have been uber rich with snazzy gadgets, equipped with my own butler but I think it's mandatory to have a dark raspy seductive voice to go with the whole package and I'm fresh out of testosterone!

So what if it's fictional; USE THEM!
Frankly, I feel much more at home with the spunky villains prone to poisonous forestry and jewelry clad cat-napping. Each of them have sparkling characteristics. Superpowers in their own right, who do exactly as they please.

Is there some rule which proclaims it mandatory to dress up in a skin-tight suit and parade around town claiming to save the city? If so sign me up!

I'll take the small electric purple catsuit complete with detachable incandescent wings, permanent body shimmer, and fluorescent hair extensions in every color of the rainbow and while you're at it could you please throw in the cure for lupus! What was that!? There's no cure you say? What's my life expectancy you ask? Why, gee golly gosh darn!

If this is the case, it's time for me to read you THE BATISTA HEALTH RIGHTS.

You have the right to remain silent until the duration of these rights are complete. I have the right to remain silent and refuse to comply shall you inflict any harm upon my health. Do you understand? 
Anything you negatively do or say may be hazardous towards me and my health. Do you understand? 
You have the right to consult Dr. Google before speaking/approaching me with ignorance about my condition/and or health. If need be I can refer you to an Epatient advocate and have them present during questioning now or in the future. Do you understand? 
If you cannot conduct a Google search, information will be selected for you before any uneducated responses or questioning. Do you understand? 
If you decide to answer questions now prior to consulting Dr. Google and/or an Epatient advocate I have the right to stop communication with you at any time until you talk to an Epatient advocate or consult with Dr. Google. Do you understand? 
Knowing and understanding these rights as I have explained them to you, are you willing to accept that knowledge is power and commit to acquiring that information which pertains to my health before approaching me?  (These rights are fictional; a creation of mine which I adapted from the US Constitution Miranda Rights- Tiffany Marie Peterson)

These Batista Health Rights are my superpowers! 

From now on; should I be offered unsolicited advice ranging from: 
It's my fault that I have lupus, how a miracle herb can cure my disease, if only I just ate 10 vegetables a day lupus would disappear, how I should just quit while I'm ahead because there's no cure, or any other ridiculous uneducated notion relevant to my illness I WILL READ THESE BATISTA HEALTH RIGHTS out loud!

It may take courage, but it's a necessity!
I will exercise my right to say NO to any situation that negatively affects my health regardless of what/who the offending party is. I only have one life; If I don't value it then who will? If I don't have respect for my own health then how can I expect someone else to? It is MY responsibility to take charge of my health care. 

This may mean keeping a health journal to track my daily life with illness, sharing my questions and concerns discovered in my journal with my doctor. Asking my physician whether a medicine is right for me? Asking about alternative options, setting reminders to follow my treatment as prescribed. Getting copies of my medical records and reaching out to an offline/online health community when I need support. The list goes on.

There is no excuse for taking a back row seat on your healthcare journey. This is YOUR life, and you only have one chance to live it fully.

love and glitter,
Epatient Tiffany Marie Peterson

Change Your Perspective

"Quotation Inspiration. Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes." Wego Health

"In the midst of a calamity, is there something you can do? If not, at least by your serenity you can make others more serene." - Swami Satchidananda 

Yesterday this pearl of wisdom popped onto my twitter timeline from The Integral Yoga Institute and I discovered it reflects throughout my every day life while living with lupus. Calamity is another word for trouble, complications, stress and issues.

In our daily lives; what do we do when facing an issue?
Honestly; I find it takes a remarkable amount of self control to not unloose the hell-hounds the instant something buggers us! Once we become bothered by whatever issue ails us it's common for some of us to throw up our hands, and rag on about how much life seems to suck at that moment. Every smiling person we encounter becomes an irritating happy-go-lucky camper, and we exude a Dr. House "misery becomes me" demeanor. Sound familiar?

The fact is; it's okay to feel down and out about having lupus. It is a complicated illness that does not yet have a cure.

So how are we to somehow manage to pull up our britches and still be happy about life? Puzzled? I was too at first. Depression was my twin sister and misery my middle name, and all I did was wallow in a pit of self-loathing for months. I felt alone, all by myself in the scary world of autoimmune madness!

Then one day I mustered up the courage to enter "lupus" into a Google search...The rest is history!

I discovered how far I truly was from being alone with systemic lupus erythematosus. In an effort to find new friends I created a community where lupus "brothers and sisters" could reach out to one another using pre-established sites like Facebook and Twitter.

Together, we share our health stories as we embark on our journey to wellness.

We soothe each others anger, pain, sadness and encourage laughter, strength, and support. We are each others "SILVER LINING"! At least, that is what each of you have become to me.

I still have days when my pain reaches unbearable heights, but it becomes a lighter burden to bear when I reach out to the huge lupus community to help lead me through my pain and remind me that there is still joy to be found in every day.

I may not be able to run, but I can walk short distances. I may not be allowed to bask in the sun, but if I wear high spf sunblock and protective clothing I can frolic in the daylight. I may have an embarrassing red rash on my face, but at least I can save money on blush. I may be balding from hair loss/scalp irritation, but I can use it as an excuse to sport purple-ishious wigs!

It's all about your perspective lovies. A lesson I've learned is this: If you can't change an issue that troubles you; change the way you approach and/or think about that issue. It may seem a challenge at first, but with practice it works like a charm. Conquer your issues!

love and glitter,

Tiffany Peterson