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

April 1, 2012

Health Time Capsule

"Health Time Capsule: Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?"- WegoHealth

A time capsule is like a magical box of important things you'd want someone to find sometime in the future. A sort of treasure chest that's full of gizmos and gadgets galore, thingamabobs if you're feeling extra spiffy! Throw "health" into that mixture and you've got yourself a mixing pot full of awesome wellness goodies. That is, if you've stumbled upon my hiding place *evil grin*

Want to know what's in my Health Time Capsule? (Listed in order of importance of course!)
lupus fighting glittery bits!

  • GLITTER (Any respectable lupus activist always has large handfuls in stock in case of the blues!)
  • Assorted Wigs (To stay spunky just in case hair loss becomes troublesome)
  • Lupus Symptom Tracker Checklist (To monitor your daily issues so you can have personal records to show your doctor in case of brain fog during your Dr visits)
  • Assorted Lupus books/guides for the newly diagnosed
  • Photos of past Lupus Warriors (Inspiring individuals who advocated for past, present, and future lupus patients to come)
  • A public curated list of amazing doctors educated on lupus for reference
  • A "In case of Prednisone" Snack Attack Box (Full of all of my favorite munchies to keep Sir Prednisone at bay...though I seriously hope it's one drug that is banished off the planet in 2112!)
  • A Doctor/Patient Conversation Handbook (Here's hoping bedside manner is also no longer an issue in 2112 and that Doctors are involved in participatory medicine with their patients!)
  • My Lupie Love Mail Stash (Never underestimate the magical power of regular non-bill post)
  • Fight Lupus Playlist (All my favorite arse-kicking songs that put me in a 'fight lupus' feel good mood!)

I'd like to think that whoever finds my 'Lupus Health Time Capsule' believes it to be full of magical bits capable of fighting lupus for every lupus warrior out there! What about you? If you could create a time capsule what would yours include?

Till next time!
Tiffany Peterson