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LUPUS FOR LIFE
Rock / Indie / Alternative

Celebrate LIFE w/Art, Music, and Health!




United States

Profile Views:  6255




Last Login:  11/15/2009
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   LUPUS FOR LIFE: General Info
Member Since1/20/2007
Band Websitewww.LupusForLife.com
Band MembersEveryone affected by the illness whether they have it or not. This means YOU!


Please support the cause!




InfluencesFriends, family, life experiences, art, music, Mercedes (Top Model), Landmark Education and everyone else who ROCKS!

Other personal influences:
Princess Diana, Mother Teresa, Dana and Christopher "Superman" Reeves, and of course my fave phat cat:
Great minds think alike!

It's THE S!!!

Sounds LikeEVERYONE NEEDS TO KNOW!!!

This is going to be A LOT OF FUN! + love, compassion, inspiration, self-expression, and COURAGE!

Record LabelLiL PiCKi
Type of LabelIndie


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   About LUPUS FOR LIFE
My name is Vienna, aka LiL PiCKi and I have Lupus (SLE). I am raising Lupus awareness through a benefit art exhibition with live bands.

   
Here's my story:

Systemic Lupus Erythematosus, "SLE" or "Lupus" for short, is what I call an "autoimmune disorder." In its active state, the body's immune system attacks the body's own vital system (organs, blood, skin, etc.) It is an illness that affects many individuals of all backgrounds, especially women. It is not contagious, but it is a lifelong condition treatable by medication.

I noticed that in sharing the concept of this project and my experience with the illness—a new world opens up with the people I talk to, regardless of their cultural background. In conversations with the people who know of someone ill with Lupus, a sense of confusion is frequently present. They do not fully understand what it is or what is happening with the patients. In other conversations, the people who have it are ashamed of being ill and leading unfulfilling lives. I hope to inspire them to value what they have and (pardon the cliché,) to live life to its fullest—by not being constrained by an illness. If no action is taken, people attempt to hide their illness, continue living in despair with resentment, and feel like an outcast rather than appreciating life and pursuing their dreams. Other individuals will continue to misjudge them without compassion to their health issues from the outside looking in.

I also discovered that one of my friends lost her grandmother to Lupus because she was never correctly diagnosed until it was too late. It destroyed her body system and its ability to function. It is not a lethal illness unless left untreated. Due to the lack of awareness, however, many health care professionals overlook the signs and symptoms which could be detrimental to their patients. That's the tricky thing about Lupus. The symptoms are very similar to other illnesses and even colds. Everyone should be informed and aware of what's possible out there other than cancers and viruses. I hope to inspire the public to pay more attention to their well-being through increased awareness regardless of Lupus, and this project would be my first step.

This project is personal to me because I have been through being misdiagnosed with Lupus since March of 1999 during my junior year at Alhambra High. I became very anemic and my kidneys were under attack. I was very fortunate to have caught it soon enough before and any real damage took place. As a teen about to enter a university setting in a year, my dreams were killed off and the world came crashing down on me. Drastic lifestyle changes were in effect. I had to undergo multiple treatments and rely on medication (with visible side effects). Two of the worst medications I've been on were Prednisone (steroids) for about 4 years (became bloated/"puffy" in unusal places w/the moon face), and on Cytoxan (chemo by IV) for 2 years worth of medication spread out in 3 years (I was nauseated for days with this stuff.) You can only begin to imagine how sick I was!

I spent many years being kept to myself in trying to hide my illness as if I were not “normal” and never will be. I wasn't able to talk about it with my friends or family very much since they couldn’t relate to me. They knew as much as I did on what was going on with me, wasn’t much at the time. I felt that no one understood what I was going through, and there was no room to love myself or others. I was severely depressed and felt incompetent to have an illness where my own body was attacking itself. The illness was simply ridiculous! I was afraid to return school and life because I felt excluded by others, avoided because of my health, and I looked like a monster from the side effects of steroids. Thus it took a heavy toll on me emotionally. I was extremely embarrassed to let others know what I was experiencing, and that I was the first one to have anything like this condition in my family. Thankfully, my family was there for me regardless. One of my aunts encouraged and reintroduced fine art to my life as my expressive outlet, which I developed a sense of self-confidence through. Picking up musical interest only enhanced the journey to where I am today. Now I am ready to bring the three together and share it with the world.

The ultimate goal of my project is to inspire increased awareness of lesser known health issues amongst the public, as well as spotlighting undiscovered artistic and musical talent where there has been a lack of appreciation for. It will definitely motivate an active unity between communities through culture and health.

THANK YOU for reading the insight on my experience. I love you guys.
-V



   
My first event:


THANK YOU FOR CELEBRATING LIFE W/US ON SUNDAY, FEBRUARY 25, 2007 at AMBIENTE in ALHAMBRA, CA! I HOPE YOU ENJOYED IT!!!




   LUPUS FOR LIFE's Friend Space (Top 12)
LUPUS FOR LIFE has 248 friends.
 LiL PiCKi 


 Mercedes 


 MONTE NEGRO 


 Monica =) 


 D 


 JOHN 


 Love and Plaster 


 Los Caprichos de Goya 


 Pr3ciosa 


 Cari|ssa 


 Leslie Ann 


 ~*mUfF!n*~ 





LUPUS FOR LIFE's Friends Comments
Displaying 25 of 32 comments  ( View All | Add Comment )
~*mUfF!n*~

~*mUfF!n*~



Sep 8 2009 7:22 AM

i have a question for all lupus patients out there... many of you may have problems with your kidney organ. hearing from the doctor saying "you have too much protein".. now the question is.. is there any other way of lowering down my protien in my urine? i don't want to hear anymore from my doctor to take more medications and "just because you have lupus".. its hard to understand.. i just wanna get better in a healthy way not relying on drugs.. :( can someone please help me? it help also with other poeple who has the same problem.. thank you...
LUPUS ~ FIBROMYALGIA ~ & ME ~

JAyde Staying positive



Aug 27 2009 9:07 PM

Thank you for the friendship add,

As a sufferer of Lupus Anticoagulant I appreciate it
And also want to get the word out there about this disease,
That too many people here in Australia do not know about

Thanks again
HUGS
Jayde
R.I.P MOM 4/8/61 - 6/29/09 ELLEN MATHIS

JAmes MAthIs



Jul 29 2009 5:58 PM

Category: Goals, Plans, Hopes


i want to have the largest lupus fund raiser ever!


i need everyones help to spread the word and there is so many things i am goin to need help with. i need to get as many lupus sites and groups to come together for this once a year fund raiser in memory of my mom (ELLEN MATHIS) she fought lupus for almost 15 years. and she still did what ever it took to take care of me my brother and sister on her own.

I WANT TO GET RED CROSS TO HELP. EVERYONE ANY ANYONE PLEASE!!


WE WILL ALWAYS LOVE AND MISS YOU MOM
R.I.P ELLEN MATHIS
04/08/61 - 06/29/09

I WANT TO DO THIS FUND RAISER EVERY YEAR ON APRIL 8TH HER BIRTHDAY.

I NEED EVERYONE TO GET EVERY BUSINESS WE CAN TO JOIN IN ON THIS LUPUS FUND RAISER! GET FOOD PLACES LIKE ROUND TABLE TO RAISE FUNDS FOR THIS ONE DAY A YEAR FUND RAISER. AND THEY COULD SELL FOOD THERE TO RAISE MORE MONEY.

I NEED EVERYONE TO SEND E MAILS BULLETINS BLOGS WHAT EVER YOU CAN THINK OF TO GET THE WORD OUT ABOUT THE LARGEST LUPUS FUND RAISER EVER!!!!!!!!!!!!!!!!!!!!!!!


IF YOU CAN HELP IN ANY WAY PLEASE LET ME KNOW I HAVE A LOT OF STUFF TO THINK ABOUT AND PLAN!

YOU CAN REACH ME ON HERE OR MY CELL IS (707)207-9044 JAMES
I WILL KEEP ADDIN TO THIS AS I COME UP WITH MORE INFO. IF YOU HAVE ANY IDEALS PLEASE LET ME KNOW

TO REPOST REPLY THEN COPY ALL AND RESEND PLEASE
Terri

Terri



May 16 2009 6:29 AM

Give this heart [♥] to every person you care about including me if you care. Try to collect 12.

It's not easy...
kathy

kathy



May 14 2009 3:46 PM

Give this heart [♥] to every person you care about including me if you care. Try to collect 12.

It's not easy...
~CYNTHIA CECILLE MARSHALL~

~CYNTHIA CECILLE MARSHALL~



Apr 22 2009 6:13 AM

Just floating by to say Hi!
Love,
~Cynthia~
www.godsfavornews.blogspot.com

www.godsfavornews.blogspot.com



Apr 17 2009 1:45 PM

I have partnered with the Cleveland Chapter and doing my first Lupus Awareness event next month in Cincinnati,Ohio. Please contact me if anyone would like to share their Lupus story in the Lupus booklet that I am putting together! Thanks Sham
chaidez

Christina Chaidez



Mar 16 2009 4:45 PM

ooh! let me know if there's anything i can do to help!
Praising God In Advance For A Cure....

Kawanna Perine -



Mar 31 2008 5:25 AM

Keep up the great work of spreading the word!!
Blessings
Kawanna
EarthHugger

EarthHugger



Mar 25 2008 8:25 PM

My deepest thanks for the friendship and for the positive impact your making upon the World...Peace Love and Respect :)
Baby steps

Julie Miller



Feb 27 2008 4:51 AM

Thanks for the add and for sharing your story and for all your support with lupus. Your experience hit home because I went through something very similar... on the same drugs... felt the same way... thanks again for the music and inspiration!!!!
Trance-Lite

Nancy Reyes



Jan 17 2008 10:01 AM

they said i had lupus, but I stand for what i believe .. I have no Lupus // my thoughts are more important .. think positive .. U make U ..

Trance-Lite
The Peach

The Peach



Jul 22 2007 11:11 PM

Sending some love for the week!! I hope you're doing incredible.
xoxoxo - Yta
**~LAINY JADE/SHADYS LADY!!!~** ??LUPUS 4EVER

**~LAINY JADE/SHADYS LADY!!!~** ??LUPUS 4EVER



May 13 2007 6:35 AM

Image Hosted by ImageShack.us

I HAVE FIBROMYALGIA 2, AS WELL AS MANY OTHER DISEASES THAT COME W/ LUPUS SO I JUST WANTED 2 SHOW MY SUPPORT!!!
THANK U 4 ALL U DO!!!
:)!!!
**~LAINY JADE/SHADYS LADY!!!~** ??LUPUS 4EVER

**~LAINY JADE/SHADYS LADY!!!~** ??LUPUS 4EVER



May 11 2007 6:56 AM

Image Hosted by ImageShack.us

HAPPY LUPUS DAY!!! I SURE WISH PPL IN THE OUTSIDE WORLD KNEW WHAT 2DAY WAS!!! I WAS BARLEY ABLE 2 MAKE IT OUT 2DAY & WAS ASKED 4 A DONATION 4 BREST CANCER & IT'S MAY!!! I AM BROKE 7 DO THEY REALLY NOT KNOW ABOUT US, OR DO THEY JUST NOT CARE!!!??? IT'S SO SAD 4 MY SITUATION BECAUSE I HAVE 2 16 YR OLD BOYS 2 TRY 2 LIVE 4 & 1 ALREADY SICK & DIAGNOSING THE LUPUS THOUGH WILL PROBABLY COME 2 LATE AS IT DID 4 ME, THEY JSUT WRITE US OFF AS CRAZY & LAZY!!! THANK U 4 ALL U DO 4 US!!!
David Baumgarten

David Baumgarten



May 4 2007 5:06 AM

A poem for your day:
.
.
Rest In All Love Is
------------------
I love you like this...
dark, i can barely see your eyes...
so dark my eyes are useless. My
heart opens wide its light on you
and your face brightens like the
static on a TV screen, or like the moment
we die and things begin to go all white
and
then
you're an angel laying before me...
the same one that has been there all along,
the one my eyes turned into something else and I
am ashamed I was deceived.
Then,
I see you, I see you like the energy that flows through my limbs,
now, like the breath that takes the universe and
gently creates another, now, like my feet walking
on glass, now, like I was never there.

I love you like I was never there. So gently, never there. In the dark
where I can barely see, and, rest in all that love is.

~ ©2007 D. Baumgarten.
.
David Baumgarten

David Baumgarten



Apr 17 2007 6:22 PM

A poem for your day:
.
.
My Friend

I look at you my Friend and I see a child at play
frolicking in muddy streams, splashing rivers into
oceans and carrying each molecule gently
to the sky for another round like a child handing water to his Father
for the first time.

You are neither boastful nor meek.
You are not shy nor are you seeking attention
There is simply abundance and grace with you my Friend
and you ask nothing of me...save I am my self...fully...always... and
you ask without asking...lead without
leading...cause...effortlessly.

My Friend, it is simple with You.
.
.

Songwriters Page

Bus in Hong Kong
..
..
*Michelle*

Michelle Underdown



Apr 3 2007 7:43 AM

HEY JUST WANTED TO SAY THANKS FOR THE SUPPORT COMING FROM A LUPUS SURVIVOR, HOPE ALL YA'LL HAVE A WONDERFUL EASTER, MICHELLE FROM NC!!!
[[[Pocasontas]]]

[[[Pocasontas]]]



Mar 14 2007 2:25 AM

ooooOOoooo
Jonezetta
have fun at the concert!
[[[Pocasontas]]]

[[[Pocasontas]]]



Mar 11 2007 7:39 AM

if u have an extra ticket...
well ....
u know u can invite me
haha
kidding
but yeah
i really love that ur actually doing something about the whole lupus thing and mixing art and music to it.
last time i checked this profile the percentage was about 10% and now its like almost there..haha
if ever u need help or something
my sister and i would love to help out.
*Michelle*

Michelle Underdown



Mar 9 2007 5:21 AM

HELLO THANKS FOR ADDING ME I AM LOOKING FOR ANYONE TO HAVE ON MYSPACE AS A FRIEND WHO HAS OR KNOWS SOMEONE WHO HAS LUPUS, IM 26 NOW WAS DIAGNOISED WHEN I WAS 16 WITH LUPUS LUCKILY IT ONLY TOOK MY DOCTOR 3 MONTHS TO FIND IT. I HAD NO PROBLEMS UNTIL 2002 WHEN I HAD MY SON HE 5 YR OLD NOW AND FINE BUT SINCE THEN IVE BEEN THROUGH IT ALL. WE JUST GOTTA KEEP STRONG ITS INFECTED MY HEART AND I'VE HAD OPEN HEART VALVE REPLACEMENT ALREADY AND I AM ON THE PREDNISONE ALL THE TIME FEEL SO USELESS AND FAT, BUT AS YOU SAID I HAVE MY FAMILY THAT SUPPORTS AND IS THERE FOR ME THANK YOU TO FOR BEING HERE!!!!
LUPUS SURVIVOR,
MICHELLE
Cure4Lupus.org

Cure4Lupus.org



Mar 1 2007 8:42 AM

Hope everyone is having a good week! We have a new Lupus Awareness MySpace Layout. You can get it at: http://cure4lupus.org/myspace.htm#profile
*Jess* May is now national lupus awareness month!

Jess Smith



Feb 27 2007 9:40 PM

Today on "The Insider"
ANNA NICOLE REPORTED TO HAVE DIED DUE TO COMPLICATIONS INVOLVING LUPUS
http://www.theinsideronline.com/celeb/5410/


February 27, 2007

Anna's Secret Disease?

The circumstances surrounding the tragic death of ANNA NICOLE SMITH still remain a mystery, but now, in an exclusive interview, a longtime friend of the former Playboy Playmate is coming forward with claims that she may have died due to complications from the autoimmune disease, lupus.

"I never told anyone this," FRANK RODRIGUEZ tells "The Insider." "She asked me to swear I would never, ever ever tell anybody."

But Frank is speaking out because he says he doesn't "want people to remember her for what they say that she was -- a drug addict."

"She had a very serious condition and I think people are entitled to know the truth," he insists. "I mean she's gone and I don't like what I hear about her."

According to Frank, the two met in 1996 when Anna Nicole brought her late son, DANIEL, to Disneyland for his 10th birthday.

"I was working for guest relations and I was her tour guide," Frank recalls. "So every time she came in, I got to take her around the park."

As time went on, Frank says he and Anna Nicole became increasingly close.

"We had a very special friendship, very unconditional. She was a great person and we trusted each other," says Frank.

And it was that trust that Frank claims led Anna Nicole to reveal to him in 1998 that she had lupus, an affliction that most often affects the joints, skin, kidneys, heart, lungs, blood or brain. It can result in achy joints, fever, prolonged fatigue and seizures.

"Her whole body would ache," says Frank. "She would just shut down basically, she would sleep for days on. It was frightening at times, the seizures. She went into seizures a lot. She'd black out a lot of the time. She pulled me aside and she told me that she was on medication for it. She told me her condition."

But Anna Nicole's partner, HOWARD K. STERN, admits to being somewhat skeptical of Frank's claims.

"I've been told what Frankie said and he may have believed it," Howard tells "The Insider." "But I don't think it would be entirely accurate."

But despite the skepticism, Howard does acknowledge Frank as being part of Anna Nicole's inner circle.

"Frankie was Anna's friend," says Howard. "I want him to be at the funeral."

As for Frank, he says Anna Nicole didn't want anyone to know of her condition, notably her fans.

"She didn't want to be remembered that way," says Frank. "She didn't want people to feel sorry for her. It's not who she was."

So just how would Anna Nicole want to be remembered?

"As a very playful, nurturing, mother-like human being," says Frank. "She was an incredible person. An incredible, sweet person who had a lot of love to give."

For more of our exclusive interview with Frank Rodriguez, watch tonight's "Insider"!
iYessy

yesenia holguin



Feb 26 2007 5:12 PM

i can only start by saying that i am extremely proud of you. You are a beautiful intelligent woman and i know your dreams of getting this information out to the public will pay off.
im sure that you have changed the way some people think about their health.
we should all be thanking you.
-Yessy
Jayne

Jayne Lenderink



Feb 18 2007 9:29 PM

Photobucket - Video and Image Hosting
and for making this site!
Hugs,
Jayne
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