December 23, 2010

My Health Comes FIRST!

" How do you deal with people who say you fake illnesses?"

Can you imagine my facial expression while stumbling over this question in my twitter mentions first thing this morning? There is nothing that irks me more than a chronically ill patient who is labeled an exaggerator/liar because one of their friends or family members doesn't understand the illness they are struggling to live with.

As baffled as those of us with a chronic illness may a good friend of mine would say; "It's time to get over how fragile you are!"* And she couldn't be more right. It's time for each of us to lay down the facts and let the believers show themselves, and the non-believers show themselves OUT!

I'm going to share 3 steps to dealing with a lupus diagnosis that have helped me tremendously!

Step 1: Accepting the diagnosis. If we don't accept that we HAVE lupus how can we even begin to explain to someone else what it is. Acknowledging it is the first step towards healing. Having lupus is nothing to be ashamed of; it is not your fault that you have it. Did you know there are about 1.5 million people in the United States currently diagnosed with lupus! We are definitely NOT alone, and there has never been a better time to  be diagnosed than now with all the remarkable discoveries happening with lupus research today. The important thing is to find and embrace other lupus patients and join in on the learning to strengthen your fight against the constant battle that is our health!

Step 2: Research! Take some time to do your own lupus research. It's not enough to leave all of your questions and worries in the hands of your doctor. Be pro-active! Take initiative to become well informed on what lupus is and the latest discoveries happening in research are. This will help when friends or family ask questions, and also to keep you in the loop about what's in the future.

A few of my favorite informational lupus websites are:
Friends Against Lupus
The Lupus Magazine
S.L.E. Lupus Foundation
The Lupus Foundation of America

Step3: Don't be discouraged! You are NOT alone with lupus. There is a whole community of lupus patients online that are here with open arms! I have found so many others just like me; one specific person, a lupus warrior who wrote The Spoon Theory. It's a perfect analogy of what it's like for a person living with lupus. After struggling for weeks, this was the tool that finally opened my mothers eyes to what I was struggling to live with each and every day! Another great article is A Letter to Normals.

Always remember that your health is one of the most important things. Stress being the number one trigger for lupus should be strictly avoided at all costs. Don't be afraid to stand up for yourself and let others know that their behavior is negatively affecting you. If you don't voice your concerns then how will anyone know what they're doing is wrong?

Don't be afraid to say NO! It's healthy, and its far better to respect your limitations than push past them and pay for it with pain later on. If a friend or family member deems you lazy or an exaggerated liar show them the facts. Tell them to Google or YouTube lupus. There are so many fountains of information available on the web, show them The Spoon Theory & A Letter to Normals. Once you've done that the rest is up to them. They can either accept the facts for what they are or remain ignorant in their denial of the truth. Someone who cares deeply would not hurl hurtful names at you.
If you don't tell them, how will they know they're hurting you!?

I personally had a devastating ordeal with who I like to call my biological sperm donor. He refused to accept my diagnosis, despite the fact that he was at my doctors appointments, spoke to my rheumatologist, and even picked up my medications for me. I even tried reading him the Spoon theory and he decided to interpret it differently. According to him; If I could type on the computer for an hour then why couldn't I write his business proposals. If I could set up a lupus awareness booth then why couldn't I work for a week at his catering company, and it went on and on. Nothing I did or said got through to him. I was becoming depressed at home, he made me so uncomfortable and my stress levels rocketed as a result. I became more ill, the dosage of my medicine was increased and my hair wouldn't stop falling out. I cried myself to sleep countless nights until the days blended into weeks and I couldn't even tell what month it was.

How long was I going to allow myself to be a victim of someone who is supposed to care for me? That's when I decided enough was enough!I could no longer subject myself to such abuse. I packed a few bags, gathered all my medicine and went to a friend's house and I haven't looked back since. We have to stop thinking of these situations as losing friends and family and open our eyes to reality. Abusing our health can kill us. Yes, I said it...the dreaded mention of death. Why? Because its the truth and just because it hurts it doesn't mean it not true.

Its time for each and every one of us to stand up, if you're immobilized or in to much pain to stand raise your voice, and be heard. Take a stand for your health because if you don't put yourself first then how can you expect anyone else to? When ever friends or family of mine tend to forget I remind them...and sometimes sprinkle a bit of sarcasm of top for good measure.

For Example: (I've had this actual conversation!)
Wipes the "know-it-all" smirk right off!

Remember that if we don't take initiative in telling our friends and family how their comments affect us how will they know they are hurting us? If they give you sassy remarks, toss them right back and load each response with knowledge. They aren't doctors so who are they to tell you your pain isn't real. Let them look up the side effects of some of your medications; I've had friends turn various shades of green just researching on prednisone!

Try leaving post-its in various places; like "you never know how hard one's path is until you walk a mile in their shoes" and " My illness may seem invisible to you but I feel it every day of my life". If you want to get snarky, go right ahead! I've even written posts that raise eyebrows like, "If you had lupus for a week, you wouldn't make it past a day!" and "Take prednisone for a month and tell me how you like those side-effects"! Be pro-active in educating others on your health battle, especially friends and family.

If they still refuse to understand then it's time to make a decision. If someone doesn't have respect for your illness what does that say about their character and how they feel about you? Leave the drama and stress behind you and make the effort to start the new year living for YOU! Your health depends on it.

Always remember you are NOT alone in this journey no matter where you live. I'm always just a click away! Never hesitate to reach out! There are over 1.5 million Americans living with lupus, if someone in your circle won't love have a lupus family that WILL.

Stay strong lovies, NOTHING is going to stop us from living life to the fullest!
 the constant battle of our heal
xoxo, Tiffany Marie

December 14, 2010

Fatigue Fightin' Smoothies!

A perfect way to eat healthy for anytime of the day!
Hello Lovies! This post is a special request from the Friends Against Lupus Facebook page.

Every morning I try to have a healthy breakfast that includes lots of citrus, fruits, and a power veggie to keep me energized throughout the day. I usually include spinach. Why you ask; because it is full of energy producing enzymes, it's 100% fat-free, AND it's a natural anti-inflammatory food! All of those things are essential in the diet of someone who has an auto-immune illness!

It's extremely important to incorporate anti-inflammatory foods into our every day diets especially for those with auto-immune illnesses like lupus, fibromyalgia, and chronic fatigue syndrome.

So today I'll be sharing my own personal smoothie recipe that I use to fight fatigue daily! If you have any questions please feel free to post them. All feedback is appreciated! Okay, lets get ready to make some smoothies!

*If you like you can freeze your fruits ahead of time so that way you don't have to add ice to your recipe!
Blackberries, Oranges, Raspberries!

Fatigue Fightin' Smoothies
-A 6oz container of yogurt (whichever kind you prefer is fine)
-3 splashes of Orange Juice (About 1/2 to 1 cup)
-Spinach (About 1/2 cup)
-A handful of ice

Baby Spinach, Mangoes, Yogurt, Pineapples, and Strawberries!
You don't need to measure anything out, I just like to add however much I like. Also the spinach doesn't contribute to the taste of the smoothie so no worries on the taste factor. Throw everything into the blender, blend, pour into a cup and store the extra in a container.

If you're not going to drink the extra in 24 hours, freeze it to enjoy another time.
Toss into blender, and blend!

*You'll notice some fruits & spinach below are highlighted. This is because I've included links where you can learn just how beneficial they are to your health, especially the anti-inflammatory factor! I'll share a few fun facts about a few that will inspire you to add these power foods to your everyday diets!

*Spinach rates a whopping 78% on the Anti-inflammatory scale & the serving size recommended is one cup!
*Pineapple is rated at 71% on the Anti-inflammatory scale &

Health begins with what we eat, so take care to notice what you put into your body. Choosing the right foods is the first step in pain management. When we learn what helps our body to feel good its a step in the right direction to healing! Knowledge is power lovies,
but if you don't use it; then what good is it in knowing!

Loving you! xoxo
-Tiffany Marie

November 29, 2010

Case of the "Prednisone Blues"!

 I know it's bad news to be in a funky mood around the holidays, but lets face it! Lupus usually doesn't give a toot whether we've got a lot to be thankful for or even if we've been mostly good this year and Santa has promising treats around the corner.

Last week while I was watching the wedding episode on Glee I burst into a fit of uncontrollable tears! Mostly because the wedding was so full of mushy emotions that lonely lupies tend to dream about. Especially me.

I point blaming fingers at those nefarious lupus medications for most of those tear-jerking reactions! Just peeking at the side effects from one of them is enough to send most people into an epileptic fit!

When I sit back and think about it; some of my scariest moments are when i'm battling the "Prednisone Blues". You know what I mean! Those moments when you feel like nothing will ever go right. When the uttered words "But you don't..." provoke colorful thoughts of violence. Like when you wonder if you're just destined to live alone with 50 cats and even more prescription bottles. Or when you begin to ponder where all those people you used to call "friends" have wandered off to. Yes, THOSE moments. I like to call them the "Prednisone Blues" and as daunting as they may be there IS a way to get RID of them!

Words have the power to heal <3
While wobbling my swollen knees up the stairs to my bedroom my eye caught sight of an envelope in one of the stair corners. A devilish Cheshire cat grin that would put Alice in Wonderland to shame inked its way across my face! It was addressed from one of my lupus sisters that I met while on my self-discovering lupus journey this year.

As I read her Christmas card the hairs on my arm began to rise, my eyes produced storm clouds and I wept. They were happy tears though. Her very words gave me the physical strength I needed to remind myself I WILL see another week. That I WILL make it to see next year. Her words gave me the sweetest comfort that I am NOT alone in my fight against lupus. That she is here fighting with me as I am with her. Who could have thought that words have healing powers!

All it took was a simple letter to remind me that these "prednisone blues" ain't got nothing on my lupus sisters!

So today I challenge you to spread some cheer this holiday season. To take out those dusty writing skills that have been forgotten in the frenzy of the e-world and WRITE a letter, MAIL a card, and send some magical mail through the post to a fellow lupie or any person who you'd like to know that you care about them. You'll be surprised at how much a piece of paper can brighten someones day!

Let's not be slaves to the internet! It's time to take power into our own hands and make a little magic happen this holiday. This is my little way of nudging you on the shoulder & opening your eyes to something beautiful, something so much larger than just you and I. Let's start a chain of care; one that doesn't end with us but continues all around the until everyone has a bit o' magic in the mail! So remember to ask fellow friends whether they be local or on the web for their addresses so you can send them a special something. If you receive some "magical mail" you HAVE to send one out; those are the rules! Let's help heal each other!
There is Magic in the Mail!

Ha! Who says we're alone? Never! Love is right around the corner, sealed in an envelope of Magical Mail! I only hope the post man doesn't think us loony bin for pestering him missing mail!

Well have you written a special someone yet? Get to it! Ready? Set? GO!

xoxo Tiffany Marie

November 12, 2010

Lupus Cheerleaders? RAH RAH RAH!

How are you my sweets? Hope everyone is managing to stay warm as the season gets colder.

I didn't realize just how chilly New York City has become until the frosty morning of November 7th; day of the ING New York City Marathon! In which there were 38 runners supporting the S.L.E. Lupus Foundation; running on team 'Life Without Lupus'!
RAH!I'm cheering in Upper Manhattan! 
I geared up in "lupie winter fashion" & headed out to 92nd street and 5th avenue to cheer on the 38 runners on team 'Life Without Lupus'. It was often hard to catch them in photos because they were SO fast; I could tell they were 100% committed to their cause!

I specifically remember one runner; his name is Drew. As he approached my cheer spot I noticed he looked drained. His eyes a bit unfocused. I sucked in all the air I could manage and bellowed "Come On Drew, you got this! Go Team Life Without Lupus!" and stretched my arm out to clap his hand as he passed me. It was like a million watts lighted up his face as he put slapped my palm and put extra pep in his step!

It was the least I could do, and now I'll forever remember that moment. From lupus patient to "runner for lupus"!

Team 'Life Without Lupus' proudly represents in New York City & across the globe; and the ONLY lupus organization to host a team in the ING New York City Marathon!

Brooklyn Cheer Team
There were several "cheer teams" spread across the city. The first beginning in Brooklyn, several in lower/upper Manhattan, and one in Harlem. All with the goal to cheer, support, and encourage all 38 runners who courageously set off on a chilly NYC morning to run 26.2 miles for a great cause!

Together they raised an amazing total of  $130,000 in support of patient services & research to find a cure!

When I'm having a particularly crummy day news like this helps to smile another day. I may not be healthy enough to run a marathon for my illness; but there are lots of people out there who are doing it FOR us, and thats a blessing in itself!

The New York Daily News wrote a moving story about a Team Life Without Lupus runner: “Shawn Gates won't let lupus catch up with her; she plans to use Marathon as fund-raiser to find cure”  You can read about Shawn's story HERE!
Shawn Gates "Life Without Lupus Runner"

You can even view footage of the runners on the Team Life Without  Lupus Facebook page!

Wonder where all the funds are going? Take a peek over at S.L.E. Lupus Foundation to see the latest lupus news & all the amazing support services they offer lupus patients and their families. Learn different ways YOU can help in the fight against lupus!

The important thing to remember is that we are NOT alone in our battle. So reach out & let someone know you're fighting with them <3

November 10, 2010

LRI: On The Road To Success

Hello lovies!

Many of you may already know several foundations and organizations that are doing things to spread lupus awareness. However, I'd like to share how one phenomenal organization goes above and beyond to provide REAL support and proven success while searching for a lupus cure!

The Lupus Research Insitute is the world's leading private supporter of ground breaking research in lupus, the LRI encourages scientific risk-taking leading the way to solutions for the sometimes confusing and dangerous autoimmune disease called lupus.

I was absolutely honored to attend an informative press briefing which occurred on October 18th at the Marriott Marquis Hotel in New York City as a representative for The Lupus Magazine.

With an awesome headline like, "Driving Discovery Through Innovation"; A Decade of Impact in Lupus Awareness" its a wonder I was able to sit still in my seat!

A key point from the LRI research report are:

  • Within 10 years of research they have a success rate of 80%!
This means that 80% of the LRI-funded investigators were successful; as well as having their discoveries published, featured in top journals, and received major funding to follow-up their studies!

Want to know who the "queen of lupus research" is? Who is behind the possibility of a "inflammation turn-off switch"? Or just how much money the LRI has generated in millions for lupus research? 

You can read my full article explaining the "Driving Discovery Through Innovation" LRI report featured in the The Lupus Magazine's new November issue HERE!

Or you can read the complete report by the Lupus Research Institute at their website HERE.

Feel free to learn a bit more about the amazing people behind the success of the LRI and their ground breaking discoveries in lupus research!

"Watch the story of the Lupus Research Insitute (LRI) and its national network of patients, family members, scientists, physicans and advocates as they work together to put an end to this devasting disease.

Also please help the LRI spread this message of hope! If we work together towards prevention, a lupus cure is sure to be in sight one day!

Stay Strong lovies! Together we are strong!
*& hearts*

November 9, 2010

New Movie in Review: Love Simple

Hello Lovies!  

I'm overflowing with excitement about a NEW film that is now available internationally today November 9th! 

Love Simple (Not Rated)

In one sentence I'd describe it as: A Breath of Fresh Air!- Finally, a movie definitely worth seeing! 

Mark Von Sternberg's film "Love Simple" is the one of a kind, a love story with a lupus theme! 
Adam (Francisco Solorzano) & Seta (Patrizia Hernandez)

A story about two people who discover whether their love is real enough to hold them together just when everything else seems to fall apart. 

Adam (played by Francisco Solorzano) feels trapped at home caring for his asthmatic father while Seta (played by Patrizia Hernandez) finds herself hiding behind her embarrassment of having lupus. Both weave a web of lies in their attempts to impress each other for the sake of LOVE! 

"Love Simple" paints a story that each one of us can relate to. From the colorful lies we paint to make us seem more "impressive", to the awesome best friends who sometimes give us the "not-so best" dating advice. 

Prepare for a sprinkle of laughs, mouth-dropping scenarios, and even some tears all mixed together to tell a story; and when the credits roll prepare to be a strong believer that love is simple even when we complicate it!

This is a film you can't say no to; and why would you when 10% of the film's sales will go to the S.L.E. Lupus Foundation to help fund lupus research! You can find "Love Simple" for purchase at these following retailers: Amazon, Walmart, Target, Bestbuy, and iTunes

To view a sneak peek of the film "Love Simple" check out the trailer below & don't forget to read all the latest happenings in the NEW November "Love Simple" edition of The Lupus Magazine this month!

Loving you always, Stay strong lovies!
Tiffany Marie *lupie kisses* 

October 29, 2010

A Day With Shante... & Snoop!

Oh! Where to begin? Yes, I'm SO behind in sharing all the happenings going on with me. Well lets get to the good stuff, because we're gonna talk about how fighting lupus...

The month of August was a whirlwind of new lupus discoveries for me! New diets, medication increases, bold haircuts, and even experiencing my very first malar lupus butterfly rash. As juicy as all that seems to sound, none can compare to my twenty-fifth birthday. Yes, can you imagine? My pouty baby face is actually a "half-way up the hill" twenty-five! Lol!

I'm not sure what other "twenty-fives" do for their birthdays, although I'm predicting it involves mass amounts of liquor, ear-splitting music, and non-stop dancing. All of which are NOT currently allowed in my lupie-life! So what exactly does a lupus patient DO to celebrate their birthday? Can you guess? No? Well I'll just have to tell you! 

I counted out my precious "spoons" for the day, picked out my favorite comfortable dress from American Apparel, clipped a flower in my hair, packed my "Lupus Emergency Pouch", and headed out to the S.L.E. Lupus Foundation Midtown NYC office! Yes, I went to the Lupus office for my birthday. I received a message earlier that week asking if I was free on August 28th to meet an awesome Lupus Warrior and represent the S.L.E. Lupus Foundation as a support group member and livid lupus awareness advocate. I was absolutely thrilled, and practically drowning in suspense of who this awesome lupus warrior would be. I ignored the confused blank faces of several of my friends and family when I told them I would be at the Lupus office on my birthday. Lol! I didn't even want to attempt to explain what they wouldn't understand.
Sharing my lupus journey with Shante Broadus

I arrived at the S.L.E. Lupus Foundation at about 3pm, rode to the 17th floor and who do I see? Shante Broadus! For those who aren't familiar with her; Shante is the phenomenal wife of Cordozar Calvin Broadus also known as Snoop Dogg. They have three wonderful children together; Corde, Cordell, and Cori. 

For those who don't know little Cori Broadus has lupus and was first diagnosed at the young age of SIX! Can you believe that!?

Adrienne, Shante, and I 
At the S.L.E. Lupus Foundation I sat down with Shante Broadus, as well as Liane (an awesome SLE Lupus Foundation employee), Adrienne Lynch (Fellow Lupie), and discussed our latest lupus happenings while VIBE Magazine captured photos to tell our story. 

I learned so much about Shante as well as the entire Broadus family. Shante is NOT just the wife of the amazing lyricist Snoop Dogg; she is so much MORE! Despite the fact of owning her own entertainment company she is a board member for Lupus LA! I have read so much about her efforts to raise lupus awareness not only for Cori but for all lupus patients worldwide. 

She let me know that Cori is doing great, playing softball, and even recorded a lupus inspired song with her dad Snoop! I definitely cannot wait till that hits the airwaves; I could definitely use some new lupus arse kicking music!

Now Shante didn't know it was my birthday until a little birdie named Liane told her *giggles*! After which she wagged her finger at me because I hadn't plan on doing anything....well! Shante was NOT trying to hear none of it. 

Up close at the 'Rock The Bells 2010 Concert!
She made this lupie heart burst to smithereens by sending me to the 'Rock The Bells 2010' concert at Governor's Island to see Snoop Dogg perform! I took one of my best friends Tanika Thomas with me, took awesome photos, and was ecstatic to be ON STAGE with Shante, Snoop, and the entire Doggy Dogg crew. 
VIP tickets!

My favorite thing was catching glimpses of Snoop, Shante, Warren G, and others wearing bright orange 'Life Without Lupus' awareness wristbands because I never take mines off, EVER! Made my heart squeeze to see so many individuals doing what they can to help spread awareness.

After the concert was over, I trekked back home with the best and rubbed icy-hot all over before climbing into bed.
I was able to get in contact with Shante and her publicist to schedule an interview so she could share the latest happenings with her and Cori's lupus journey.

You can read all the amazing things she had to share in the October's edition of The Lupus Magazine!

And view the awesome footage VIBE Magazine captured of our day Here!

When I asked Shante if she had any parting words of encouragement she said, "Like Cori and Snoop sing in their upcoming song 'Never Give Up!'"

Shante & I 
How's THAT for inspiration? Shante and the Broadus family continue to inspire me. I hope each of you catch this contagious emotion and use it to fuel the awesomeness that is YOU!

Stay Strong lovies! Loving each of you,

Tiffany Marie <3

September 20, 2010

Lupie Love!!!

Hello friends. My name is Nicki and I'm Tiffany's sister and I have been given the privilege of being a guest blogger here on the site. I've been thinking about the struggles that you guys have to face daily. The friends that you have to lose and the family as well. So this blog was written just as a word on encouragement to all of you. Get a lupie love plant!!!

This plant made me think of all my lupies, especially the "mostest speciallist" one Tiffany "Spanish" Batista!!! I'm hoping to start a HUGE movement of lupie love plants all over to remind you of your worth, dignity and contribution to life!!! My life has been touched by a lupie in an in-exchangeable way. And all of you are responsible in some form or shape, for the world that I live in being a better place!!! LET'S SPREAD LUPIE LOVE!!!!

"The name 'Lupine' derives from the Latin word 'lupus' (meaning wolf), because the plants were once thought to deplete (or wolf) soil nutrients. The peas, which appear after the flowering period were also said to be fit only for the consumption of wolves. The yellow legume seeds of lupins, commonly called lupin beans, were popular with the Romans . Lupin beans are commonly sold in a salty solution in jars (like olives and pickles) and can be eaten with or without the skin. Lupins are also cultivated as forage and grain legumes. "

There will be people all over who will not understand your disease. Some will be close, as close as flesh and blood. Some will be perfect strangers. When it comes down to it, we're all affected by each other and the pain that others will inflict on you because of their misunderstanding says NOTHING AT ALL about the value that you have to more people than you know.
"Like most members of their family, lupins can fix nitrogen from the atmosphere into ammonia via a rhizobium-root nodule symbiosis, fertilizing the soil for other plants, this adaption allows lupins to be tolerant of infertile soils and capable of pioneering change in barren and poor quality soils. So it was found that they actually INCREASE soil fertility!!!"

You touch lives everyday. There will be times that you will want to quit, there will be times when you will get tired and frustrated and tired of trying to explain yourself to others. Have a lupie love plant as a visual reminder to keep pushing because you give life!!

I love you guys,
Nicole "Spanish" Batista

September 19, 2010

My 'Each One Can Reach One' Campaign!

Hi lovies! 

I'm excited to share my latest venture with each of you! Now some of you may be familiar with "Invisible Illness Week" from my last post, but for those who aren't; National Invisible Illness Awareness Week 

was created by Lisa Copen in 2002. 

She has chosen THIS year, 2010 for her "Each One Can Reach One" campaign. Which demonstrates how just one person can help another, its completely anonymous unless the "do-er" chooses not to be. The beauty of it is that complete strangers are making a difference in the lives of those living with chronic pain! 

All you need is some magic markers or sharpies and post-its (I used a note pad, markers, and tape) ! Next just write inspirational messages and be sure to include "" on the bottom of each note. Next embark outside and prepare for a fun and mischievous journey! Stick your notes in places people will see them, like on the mailbox, on a bus stop sign, in a book at the library, in the pew at church, etc! 

I'm sure the finder of each note will be touched that someone out there feels the same way they do, and ended the day with a smile at the kindness of others. I've enclosed a video from Lisa Copen explaining the "Sticky Note" campaign for Invisible Illness week! 

Each One can definitely Reach One!

September 16, 2010

30 Things About My Invisible Illness You May Not Know (for Invisible Illness Awareness Week)

Hello Lovies! 
I've been itching to write a post for "Invisible Illness week" ! Finally feeling up to the task after some rough days with Lupus! Now, first let me explain just what "Invisible Illness Week" is all about!
National Invisible Chronic Awareness week was created by Lisa Copen in 2002. She has chosen THIS year, 2010 for her "Each One Can Reach One" campaign. Which demonstrates how just one person can help another, its completely anonymous unless the "do-er" chooses not to be. The beauty of it is that complete strangers are making a difference in the lives of those living with chronic pain!

Of course I have to do my part! & blogging for Invisible Illness is just one of them! I want to share some things about my own invisible illness with you all. Knowledge is power lovies, and thats just one reason why we should all help spread it!

Take a peek at my own personal "30 Things About My Invisible Illness You May Not Know" featured on a post I've written for the Official Fight Like a Girl Club & don't forget to leave a comment, so I can know what you think about it!

Always Remember, we ARE stronger than our illness! Lupus will never win & you are NOT alone in your fight against it! <3

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at .

September 10, 2010

Pain...To Share? Or Not to Share?

...It has come to my attention that I have not once truly shared my pain with you. I have done my best to create place of light, happiness despite the darkness of lupus. Which most of us know can get pretty darn dark! I here on vow to share it ALL, dilute none, my laughs, giggles, leaps, but also my tears, breakdowns, struggles, PAIN.

I am learning that it is okay to share my pain of living with lupus, so long as not to dwell on it with negativity. Our pain makes us stronger, thicker, with each step we take. I'm going to share one of my dark days with you. You are NOT alone in your moments of darkness, many of us feel similar pangs. 

I am going to bleed my pain onto paper for you lovies. Hold my hand as I hold yours. <3

*This poem of sorts was provoked by too many hours of being left alone one day. We all have our moments when we feel alone. We can be completely surrounded by friends/family, and yet the littlest thing can throw us off balance and make us feel as if we are forgotten or unwanted. We KNOW this to be untrue, but cannot help our emotions which are triggered by lupus and sometimes our medications. This poem was inspired by a fellow lupie of mine @DrSnit who always speaks honestly about her life with chronic pain. Teaching me that it is okay to express my pain in order to heal from it and help others heal as well. Love you Snitty <3 *

Pain Bled Unto Paper

...Pain, frustration, tears. Does it end?
I look around and feel alone.
No one to hold me, remind me its okay, that i'm safe.
That the pain will pass.
Seconds tick, minutes tock, hours form days that dig ditches of emptyness.

My mind is in constant turmoil, I can no longer understand my thoughts.
Are they even my own? What the FCUK am I feeling!?
My thoughts feel tarnished by prednisone, polluted by methotrexate,
and influenced by lupus.

I feel helpless, dependent on others. Where is my backbone?
Where is the 'me' BEFORE the diagnosis?

Each pill I swallow rips a piece, poisons a part of me.
Why can't I remember a day once its passed? Why is
it so hard to recall my favorite memories, where has it all gone?

Then there is the truth; I have become a burden.
How long will it last? When will they tire of me?
Are the smiles even real, I want to know their true thoughts.
They say it doesn't matter how long a person has been a friend,
that it only matters that they never leave, that thats how you know
a true friend...

Yes, I've lost some from the very beginning. But how long will the
rest last? It's only been eight months and I'm overwhelmed myself!

I cannot even fathom living entire YEARS like this. Constantly feeling
like a burden to everyone I cross paths with. None but my lupies can
truly feel me, know, understand my pain in all its complexity.

My thoughts are NOT my own.
I want to remember, but I forget.
Happiness? Yes, that! Where is it?

What does a lupie have to do to receive such a blessing?
Where art thou happiness?

Then comes anger. How can anyone disregard lupus? Or dismiss it
as something that isn't serious? Are you so ignorant that you won't educate yourself?

For an entire MONTH I could NOT walk.
I could not move an inch without feeling as if my mind would shatter
from the pain. My tears were endless. I had become an invalid. Incapable
of doing for myself. I could not get to the bathroom, let alone use it without help.
How many hours I weeped because someone had forgotten I hadn't eaten lunch;
or that I had not yet been taken to the bathroom...


NO ONE can tell me lupus isn't real, or that something i'm feeling isn't happening.
That a symptom i'm experiencing isn't from lupus.
I can't even begin to eununciate exactly how I feel, pain, frustration, stress.
Over a disease that has NO CURE, doctors have NO idea where it even comes from.
& I have to figure out how to live WITH it.

To paste a smile on my face so that all the "normal healthy" people can feel comfortable
around the "sick girl". I alone have to find the strength each day to be happy despite my feelings of darkness.

and secretly, after hours of attempting sleep. right before my lids finally close I wish for it all to end.

I'm tired. Tired of trying to be strong. I don't have endless strength.
I want to fade into the darkness, release you from my burden. Release me.

Is there no onewho can make me a promise?
Promise, to never let go, to hold on when I want to give up.
To wipe my tears when I can't keep them in. To never leave
me alone in the darkness. Ever.

...I didn't think so.

Even amongst the darkness there can be light, hold my hand lovies & lets face it together. Sharing our pain may not be easy but it is necessary in order to heal. <3 Stay Strong, we may stumble, shed tears, but we must NEVER give in!