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!