April 20, 2011

A Love Letter to Myself (HAWMC Day 9)

Image from TheHealthyCity via Tumblr
Ever wonder what it would be like to write yourself a love letter? What would you say? I think we all should take some time for "Self Love" (especially those of us who are chronically ill) and write ourselves a love letter. Go ahead & try it and see what unfolds. 

Here begins Day 9 of Wego Health's "Health Activist Writer's Month Challenge". 

Health Activist Choice. Today’s blog post can be about anything you like. Free write! Whether you want to take inspiration from one of your community members or HAWMCers or just recap your April so far – anything and everything is fair game today. Length, topic, style – all up to you!

Dear Tiffany,

It takes immense courage to face your reflection in the mirror and love the person you see. To face the pain hidden behind the smile and unfold the truth that is self. To see each scar as a beauty mark of survival. Each stretch mark as a symbol of growth. A shaved head as a symbol of courage. Every grey hair tells a story of trials won and wisdom earned. Dig deeper still.

Your big feet that once were unable to move now strive to walk in support of others.
Your small hands that ache with pain still reach out to touch, hold, and comfort others in times of need. Your tiny frame which seems to never grow is capable of loving each person you come across. 

You do not have a paid job, nor have you finished school. Yet all of your free days are spent advocating for lupus awareness if you are not bedridden or at a doctor's appointment. You may not be where you want to be, but you are forging a positive path to a place of greater good. You could have wallowed in pain, complained, and screamed about how it isn't fair to be ill but instead you chose to  DO something about it. 

Yes, you have cried many times when the pain was too much. It's okay. Keeping it in isn't healthy. Yes, you have pushed yourself past your limits when you knew it would cause you pain. It's okay. You have learned to respect your health and say NO when pushed past your limits. Yes, you have lost many friends and even family because they could not understand or be bothered by your illness. It's okay. You have met NEW friends and family who are supportive and help you be strong. Yes some days you wish to not go on to another day. It's okay. You have learned that when having these thoughts you must REACH out to another for help.

You do everything you can to go from lupus to living. You educate others. You attempt to break the stigma of ignorance that often surrounds disease. You help strengthen others who are ill to make a stand for their health and make their way towards living with a positive mind. 

Tiffany, it is time for you to realize that you are a warrior. That warriors don't wallow in self pity. Look into that mirror and see the things you have done and what you are still doing. It's time for you to love the person you are. Selfless. Void of pride and full of love.

"Because if you can't love yourself, how in the hell can you love somebody else?"-RuPaul

So Be Strong, Be YOU

Tiffany Marie xoxo

This post was the toughest I ever wrote, and I stared at myself in the mirror thee entire time (balancing a laptop on the bathroom sink is not recommended!) & yes I cried. I guess I haven't been entirely honest with myself for a long time on many touchy topics about myself. It's past time I ripped those bandages off and faced myself scars, flaws, and all.

Look into the mirror, and write yourself a love letter!

A Message to Lupus & Poetry as a question! (Health Activist Writer's Month Challenge) Day 7 & 8

* Today's post will feature Day's 7 and 8 from the Wego Health "HAWMC" challenge! 

Leave your health a text or voicemail. Time to check in with your health! You call, ready to talk, but it turns out that your health isn’t exactly responsive and is probably screening your call. No matter – leave your health a voicemail. What does your health’s voicemail message sound like? And what are you going to tell your health today?
Yesterday I left Lupus a message and sent it via Facebook. I know I'm not the only one who'd like to tell lupus where it can shove it!

If you could send your health/illness a message what would you say? Feel free to share via comment below! 

Onto Day 8 of the HAWMC Challenge...

Write a poem where every line is a health question. Today’s prompt is to write a 5-10 poem where every line is a question. The questions could be ones you have, ones you’ve heard, or ones that are rhetorical. You can make it a Found Poem and use questions you’ve been asked before. Or you can make up new ones.

Poetry as a question is definitely a challenge! Here I go...

What is lupus?
Why are their no known causes?
Why are we judged because we don't LOOK sick?
Where are all the GOOD rheumatologists?
And when will we there be a lupus cure?

Not too bad for my first poetry as a question! How about you? If you wrote a question poem what would it say?

Loving you,
Tiffany xoxo

April 18, 2011

Lupus Haiku & Why I Write: (HAWMC Day 5 & 6)

Health Haiku. A haiku is a “miniature Japanese poem consisting of 17 syllables – five syllables in first line, seven in second, and five in the last. No rhyme or meter scheme is employed when writing haiku. The aim of the haiku is to create something greater than the sum of the parts.” Traditionally, haiku poems were written about nature and gently capture the essence of the aspect of nature that is being described.
What is more natural to us than our bodies and our health? 

I don't believe I've ever written a haiku. So this will be my first attempt! Bear with me.
Quiet souls feel pain
Tears hidden behind their smiles
Reaching out for help

Dare I try another...

Through illness one finds
Caring souls and friendship woes
Now open your heart 

Awesome sauce! My first two haiku's EVER! Now on to "Health Activist Writer's Month Challenge" for Day 6!

I write about [my] health because….

...I write about my health because I discovered what lupus was while sitting in my rheumatologist's office while being diagnosed. It was a cold speech which mentioned how lupus had no cure and included a printed handout being pushed across a hardwood desk. After which I was given a large dose of steroids intravenously in my bum. I left the doctor that day feeling numb and alone with no direction to turn to. It took a month and some change for me to roll out of the ditch of self-pity and look for answers. I hated feeling alone and confused. Every lupus patient should KNOW they are not alone in the fight against lupus! After searching online I found many support groups and even came across The Lupus Magazine who asked me this very same question! My response was this.

Thoughts? Please share them! Don't be shy to comment I promise not to bite!
Loving you,
Tiffany xoxo

Quacks Who Claim to Cure Lupus! (HAWMC Day #4)

Today's post is going to be lots of fun!
We're going to play Name that QUACK!

Image from Depleted Cranium.com

The internet can be a valuable source of information for most folks but you have to use it with caution. 

While searching for lupus communities online I have stumbled across peddlers claiming how their lupus was cured by snake oil, or oxygen treatments! Even shady authors who claim to reveal a cure for lupus if you purchase their books, and even going as far as calling it a "lupus bible"! 

If the thousands of esteemed doctors with high credentials, prestigious medical degrees, and funding from the world's leading lupus organizations have missed something; I'm sure it didn't have anything to do with taking a charcoal bath to cure lupus! 

I'll plug some links to the lupus Quacks below. Take a peek to make sure you don't fall victim to their lies, and please share some of your own if you've ever come across any!

"Ludicrous headline or cure. What’s the most absurd thing you’ve heard about your condition? Whether it’s a cure you’re clearly supposed to try or a headline you’ve come across – the internet is rampant with examples of misinformation and quackery.  Let’s share them and have a quick laugh before we get return to our regularly scheduled advocacy."

Name Those Quacks!

1Cure Lupus Naturally!: This site rambles on and on about how they have a natural cure to lupus, and it's full of shady "reviews" from so called patients. Of course they only reveal this "cure" if you pay $29.95 for a book through paypal. Nice try, but we're NOT falling for this one!

2. Natural Lupus Cures: Now this site made me laugh so hard I fell out my chair! First of all why does the headline say they can cure herpes, and second are they really telling patients that INGESTING CHARCOAL or taking a CHARCOAL bath will cure them of lupus???? Where is the report button!!!!!

3. The Lupus Reversing Breakthrough: This site tries to peddle a book claiming it can show you how to reverse lupus, and even goes as far as proclaiming Nobel prize winners and top doctors participated. Supposedly written by a health expert who didn't even pop up in a Google search! Which is impossible because EVERYTHING can be found on Google! Not to mention this self acclaimed expert has NO degrees, and when I searched for the company listed on the bottom there was ZERO mentions. No surprise there, it's obvious Quackery!

4. Le'Vive Dietary Supplement: Interesting enough is WHY a fashion site is trying to recommend a drink as a cure to lupus! Even more ridiculous is the "sales pitch" that you can listen in to. Keep in mind folks if the FDA does not approve it, Don't TRUST it!

5. Wanted: The Chronically ill!: Yes, this site not only claims to cure multiple diseases but outright states that they will PAY chronically ill patients to leave a good review on their products! 

A great way to help you spot whether something is true or full of QUACKERY is this site below called:
QuackWatch Several lupus patients I know have mentioned this site to me. It helps you spot phony advertisements and peddlers claiming to cure a disease or illness.

They even share 25 ways to spot quacks and vitamin pushers, as well as "How to spot a Quack Website" and more! Hope you've learned how to spot those infamous Quacks and feel free to share some you've come across.

loving you,
Tiffany Marie xoxo

April 17, 2011

My Lupus Q&A: Health Activist Writer's Challenge Day 3

Woohoo! We're on day number three of the "HAWMC" (Health Activist Writer's Challenge Month) and it's going to be a fun one! Take a look below for the details:

Write your own health Q&A. Inspired by the popular (and often outrageous) Yahoo Answers (see here) and the more strategically categorized Q&A format of Quora – today’s prompt is simple: write a health question and answer it. Your question can be a real, genuine one about your condition or you can make it a strange, humorous, or satirical health question. Once you’ve asked the question – answer it however you want to. (Note: You don’t have to ask or answer as yourself – you can pre
tend to be anyone you like.)

Here we goooooooooo! My very own Lupus Q & A!

Question#1: How did you get lupus?
Photo from Staples.com

Answer: After billions of dollars in research, the worlds leading rheumatologist's held a conference to figure out what causes lupus in patient's across the globe. After doing testing, prodding, and clinical trials on thousands of patients they have come to a conclusion! They took a field trip to the nearest Staples and pressed "The EASY button" and POOF! With the help of the "Staples easy button" they have come to the conclusion that lupus is caused by evil aliens who live on the surface of the sun in outer space. Thus being why we must wear sunscreen with high SPF/uvb block protection because obviously NASA isn't doing their job properly! Gosh, if only I hadn't gone sunbathing at the beach all those years!

Question#2: What does a rheumatologist do?

Answer: Word is they are the specialists who are supposed to treat patients with lupus! I haven't yet found one who doesn't have a twisted love affair with prednisone and a hankering for the methorexate but surely I will find the doctor of my lupus treating dreams one day. Something tells me those steroid loving doctors might half related to those evil aliens NASA hasn't detected yet!

Question#3: But you don't look sick, are you SURE you have lupus?

 Answer: Gee, I don't know! You don't look like a dummy, but I could be wrong! No seriously, how does a person's appearance define how they feel on thee inside? Not NEVER!

I don't know about you but this post was tons of fun! It was supposed to be full of satire and sillyness. Kind of like those weird and sill questions you find online on Yahoo Answers! Hope you enjoyed it as much as I did. On to HAWMC Day four!

Loving you,
Tiffany Marie xoxo

Humor Me Sundays!

Hello again lovies! 

Which day of the week is the one you dread the most? Mines is always the Monday's! So I like to take some time on Sunday and prep myself for the wear and tear of the new week.

Helping us get through this week with lupus giggles and grins is Mark Magee; a man of many talents who resides in Portland, Maine. He was featured in this month's April edition of The Lupus Magazine where he shares how his mom is the inspiration behind his "lupus cartoons". If you haven't read it be sure to take a peek, it also features two more of his latest cartoons he drew especially for The Lupus Magazine!

Enough talking! It's time for giggles and grins!

Bwahahaahahah! Anyone else have "episodes of la fog" as I love to call mines! Share some of your fog stories, and please share your thoughts about Mark's awesome cartoons below!

April 13, 2011

WOTD: Health Activist Writer's Challenge Month Day 2

Excited to continue this journey of health and learning with WEGO Health!

Today is Day two of the "Health Activist Writer's Challenge Month" also known as #HAWCM.

Day 2's challenge is:

New Word of the Day Post! When we write, it’s natural to fall into a pattern, using the same set of words that found their way into our vocabulary over time. Maybe we use words we love or maybe we use words we say often. Well, let’s diversify! Today’s post prompt is: Go to Dictionary.com and check out their their extensive archive and pick any 1-3 WOTD (one from your birthday, perhaps?) that you didn’t know beforehand and write inspired by the new word(s). Your post can be as short or as long as you like.
According to Dictionary.com today's Word Of The Day is:
OPPUGN- To assail by criticism, argument, or action.
This month I decided to request all of my medical records so I could keep up to date with the happenings regarding my health. My  general practitioner was extremely accommodating and directed me towards the offices which would do just that. After putting a thick manila envelope in my bag I made my way over to the office of my rheumatologist. I explained to her that I needed a copy of my medical records and asked if she could have her receptionist print out copies for me. I was terribly surprised with her response. Not only did she tell me she would charge me per page; she also refused to print out every record. She told me she select the most important and print them out. As I watched her select which records she thought I needed to have; I noticed her typing away furiously in between selections. Once I left her office I opened the folder containing my selected rheumatology files and began reading through my medical history.
It is not my intention to oppugn my rheumatologist's medical knowledge or practice; however it suddenly became clear to me why she kept shutting me down every time I attempted to retrieve my medical records. It turns out that she hasn't been recording ANY notes whatsoever during the majority of my visits, which I find preposterous since I've been seeing her for lupus treatment a little over a year now. She recorded that I the patient denied having many symptoms that I remember explaining to her n depth over the course of a year. I'm so terribly upset! Why did she fail to record notes about my treatment! When I change doctors what information will they compare to for my future treatment regarding lupus? Has she been blindly treating me all this time? I am making notes to bring this to her attention during my next appointment. If she refuses to comply perhaps my next "Word's of the Day" will be MEDICAL MALPRACTICE! 

Stay tuned for Day 3 of #HAWMC (Health Activist Writer's Challenge Month). The challenge being to write your own health Q & A which I'll be posting later this evening! 

As always stay strong my loves and remember you are NOT alone in the fight against lupus!
Loving you,
Tiffany xoxo

April 12, 2011

My Lupus Acroustic: Health Activist Writer's Challenge Month Day #1

Hey lovies! I've decided to join the WEGO " Health Activist Writer's Challenge Month" also known as #HAWCM 

They are currently up to day twelve so I'll do my best to post several a day that way I can catch up and keep you all enlightened and hopefully educated as we both learn together during my WEGO experience!

Feel free to share your thoughts by commenting below as well as sharing the post if you love it with friends/family online.

 Here we go!

Write a health acrostic! Use your condition’s name or the word HEALTH to make the acrostic or initialism. Just write your condition or HEALTH vertically then make up a line for each one of the letters. (If your condition is a really long word – you’re in for a challenge! You can also choose any word that relates to your condition if you’d prefer.) 
I chose Lupus of course since that is the illness I've been learning to manage for a little over a year now! This is an acronym/acrostic I've created which defines one way I see lupus today. I've met so many spirited individuals living with lupus who inspire me to keep fighting each day, take a look!


Keep on the lookout for The WEGO "Health Activist Writer's Month Challenge" for Day number 2  posting tomorrow morning at 11am!

Loving you, 

Tiffany xoxo

April 10, 2011

Humor Me Sundays!

There is so much more to living than just dealing with lupus.The best way to prepare for those dreaded Mondays is by stocking up on extra grins and giggles!

What is it about Mondays that cause us to moan and groan? It could be the fact that we have a brand new hill to climb or maybe it's just not your favorite day of the week. Either way we're going to start making Sundays extra special so we can start the week to come with grins instead of frowns!

Welcome to Humor Me Sundays!

Ursula, strutting her moonface!
Disney has always been a child obsession of mines that I'm reluctant to let go even in my adult years. While watching The Little Mermaid for the umpteenth time; I started to notice something about Ursula the sea witch. Maybe it was her soul-less rendition of "You Poooooooooooooooooooooooor Unfortunate Souuuuuuuuuuuuuuuuuuuls!" Or her persistence in trying to get Ariel to "sample some wares".....so was Ursula just a sea witch or more of a witch DOCTOR! Ha, got the chills did you? MMmmmmmhmmmm upon closer examination it seems Ms. Seawitch Doctor has a severely puffy round face and her spunky attitude could very likely be a symptom. 

Oh just what could Ursula be trying to force Ariel to take!? Some weird concoction whose side-effects involve manipulation of the body? By golly her hair has even gone white from stress in her ridiculous efforts to keep her new medication secret! My dears I'm frightened to say that the mystery concoction just might be PREDNISONE! *insert giggles & snorts here* 

Dare say I had a jolly good time stalking 'The Little Mermaid' videos on youtube! So if you've got it on DVD pop it in and see if you can point out all of the symptoms that Ursula the Seawitch "doctor" seems to be showing! Just goes to show even Disney characters get lupus!

Giggles & Grins, 
Tiffany Xoxo