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!

Xoxo, 
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


















Sunday, 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!
Xoxo,
Tiffany Peterson




Wednesday, March 7, 2012

The Glory Days

It may be taboo for me to say change is hard to accept; but either way the cookie crumbles most can agree that it's usually Facebook that often tests our limits when it comes to accepting new adjustments. As far as I'm concerned if it ain't broke it doesn't need fixing!

Recognize your strength!
Today's thoughts were fueled by the most recent change to occur on Facebook; the timeline. It's a nifty tool which will roll out later this month that allows you to view your entire profile page dating all the way back from when you first joined many years ago.

Now for some this would be a joyous adventure ride to their younger years; for me it's more like a sharp serrated knife stabbed five inches into my face...of my much healthier glory days.

See; I thought I had come to terms with being diagnosed with systemic lupus. I have told myself countless times that two years of enjoying friends, parties, and travelling were more than enough for me. I've reasoned that since I have had such great experiences that I needn't be upset about my diagnosis because I lived a helluva lot in my short amount of years.

So why then did a few clicks through old status updates, pictures, and parties leave me feeling barren, cold, lonely, forgotten and cheated out of a life that has yet to be lived fully.

Why do I now second guess myself when I believed I had come to terms with the different sort of happiness of my current self? Sadly I cannot claim to be all alone in my wretched emotions; there are countless others who feel as if they too were robbed of life, dreams, and years that have yet to be fulfilled. Am I wrong?

The Facebook timeline may have shoved me onto the torturous rocky shores that is reliving my past but somehow I feel this "issue" was always lurking in the midst of my subconscious like a forgotten chapter of a book I thought I had already read, and I'm freaking scared! Boot shaking, face whitening, don't look in that dark corner cause there's a ghost in your closet scared.

Perhaps this is all just a part of my healthcare journey with lupus. I keep forgetting I'm only two years post diagnosis and I've a long way to go before my time is done. Really, I'm just a "baby" in lupus terms.
A loving reminder that I'm glorious and that glitter can still be found even on gloomy days by my lupie sister Melinda helped poke me in the right direction. My sister Nicole tells me that I'm looking for my pre-diagnosis friends to accept the new me as confirmation that lupus hasn't taken my luminous shine which will also be validation to me that my glory days aren't over yet. Truth.

I think they're both godsend and I'm blessed to be in their presence. Truly.

I'm yet reminded that life with lupus won't be full of endless clear skies and sunshine. There will be plenty of storm clouds, rainy moments, frigid blizzards, and scorching dryness on the lupus life forecast. However, I must continue to remind myself that every cloud has a silver lining if only we continued to get back up after we've fallen; for that is what defines us as warriors. Each tear we shed tears is a mark of strength because we had the courage to express our emotions!

The fact is you are not alone and neither am I. Together we each experience life at our own speed; illness may be the roller-coaster which we ride continuously, but we do NOT ride it alone. The relationships we forge online in our patient communities like Twitter and Facebook are REAL. They are true tangible friendships that have more than just lupus in common. We share compassion, kindness, empathy, trust, love, and more importantly genuine support.

I have traveled a long way in the last two years and I refuse to let my pre-diagnosis days and/or lupus make a mockery out of the person I am today. I am strong; a warrior who when fallen gets back on her feet and eventually tries again. The fact that we refuse to remain fallen is what transforms each of our scars into medals of strength. So dust off those shoulders loves; bare those teeth and clench those fists in the air and claim your power. There is no need to relive the past because our GLORY DAYS are now and it's up to us to make sure they are freaking glorious!

So if you find yourself falling into a familiar pit of self loathing and questioning your strength perhaps it's time to check your gauges and adjust your sparkle level. It simply means you're running low on glitter; time to restock!

Xoxo,

Tiffany


Wednesday, February 8, 2012

It's My Lupiversary!

*croons softly* "Dooooooooo you know what todayyyyyy is? It's my Lupiversary! It's my Lupiversary!"


These are the infectious words that I sung to myself this past Monday once I had awakened from my deep slumber. What is a "lupiversary" you ask? Don't worry I'll tell you!

Approximately two years ago on February 6th, 2010 I was diagnosed with Systemic Lupus Erythematosus; commonly known as Lupus or SLE by my rheumatologist.
Lupus is a chronic autoimmune disease that can damage any part of the human body. The immune system becomes overactive and develops autoantibodies which attack the bodies own tissues causing inflammation, pain, and damage in multiple areas of the body. There is no known cure. (Adapted from the LFA)
 Since my diagnosis my body would subconsciously began to toss itself into a downward spiral slump of sadness as soon as January approached and I couldn't figure out why. I was talking to my lupie sister Jeannie on the phone when she pointed out that my lupus diagnosis anniversary was approaching and the negative vibe I was feeling was probably my body's natural response to that life-changing moment.

I must admit that I was quite speechless; not only about the fact that my body recognized what was a dark time for me two years ago but also that someone other than myself remembered my diagnosis day! Lupus IS a serious and often complicated disease to live with but I CANNOT ignore the fact that it has indeed brought wonderful people into my life that I would otherwise never have met! Don't underestimate the value, quality, and authenticity of e-relationships. They are beautiful, and I like to think of them as one of the silver linings of living with a chronic illness.

What is a Lupiversary? A Lupiversary is the celebration of LIFE after lupus. It is the evolution process of taking a sad day in our lives and re-creating it into a day of strength, hope, and happiness. It is a lupus patients' way of saying: I am a warrior! It is not a celebration of disease nor does it mean we are "letting our illness define us." It's quite the opposite! 


If I were to make a pros and cons list of what lupus has brought to my life; I daresay the pros would far outweigh the cons. Yes, I have days where I can't walk far or eat much. There are times when the pain is overbearing and sleep is an unfulfilled wish. But on those days I am glad to find friends online who can talk me through the pain; who give me advice on what I can try if food is hard to keep down, what OTC medicine to try when prescriptions are unavailable. If I need comfort an e-hug is just as cherished as one in person; especially if it involves glitter and confetti :)


So, next time the anniversary of your lupus diagnosis comes about shake off the sadness by re-creating this day into a remembrance of your strength as a warrior. Remember that you survived 365 days of a NEW year! Think of all the new faces and personalities who have helped you along the way & don't forget that you helped them in return. Forge a new path of happiness into your lupus journey. You're a freaking warrior and gosh darn-it there needs to be some glitter tossing, cake eating, and warrior chest beating going on when your lupiversary comes around!

Here's a little video from my lupiversary tea party to share how I celebrated life after lupus this year!




  Kisses and glitter,
Tiffany <3