Lupus In Color

HOPE!

2012-02-11T10:40:00.002-05:00

When you struggle with a crippling disease or a long lingering illness, HOPE helps us persevere beyond the pain....

Without HOPE we are nothing. We HOPE for a better tomorrow and HOPE brings tomorrow better than yesterday.... When we fear the worst, we HOPE that the worst will never happen and HOPE reminds us that God is in FULL Control......We HOPE...... When we are overworked and exhausted... We HOPE we find Relief and HOPE provides us renewed energy.....When we are discouraged, we HOPE for encouragement and HOPE lifts our spirits.....When we lose our way and confusion makes the destination unable to be seen, we HOPE for a clearer view and HOPE dulls the wicked sharp edge of panic.....When we are tempted to quit, We HOPE that the goal is near and HOPE keeps us going moving swiftly to the purpose.

Without HOPE we are nothing..... HOPE.... Helps Our Person Evolve to a better us!

Keep HOPING and use that HOPE to preserve beyond the pain!

Don't lose hope, when it's dark the stars come out!

Shoo Fly

2012-02-05T13:23:00.001-05:00

Dear Lupus,

Shoo Fly don't bother me!

For I belong to somebody and that somebody is NOT YOU!

Shoo Lupus I don't need your crap today!

Shooo Fly Don't Bother Me!!!!

So Seriously,

Me!

Sometimes

2012-02-01T09:00:00.005-05:00

Sometimes the one who has been there for everyone else needs someone to be there for them.

Sometimes it is so hard to deal with having Lupus alone. We need people in our lives that are willing to be there when we need them. Even when we don't "look" how we say we feel, we still need support to get through the flares that occur in and out of our bodies. Lupus scars are sometimes unseen, but every Lupus Survivor wants you to know they are still there.

We often help others before we help ourselves to take our mind off the constant pain we are in. But....

Sometimes the one who has been there for everyone else needs someone to be there for them.

Sometimes just a HUG will do!

You Just Know My Name....

2012-01-30T16:50:00.001-05:00

Just because you know my name, doesn't mean you know my story..just because you've heard what I've done, doesn't mean you know what I've been thru and am still going thru..I wonder what a day free of pain would feel like, been so long I've forgotten...BUT I'm still standing!

Seems to be the words of my life as I deal with lupus. Sometimes I just want to be CURED of this disease and be done with it. Oddly enough other times I feel so blessed to have it and be able to help other women that are going through so much more.

I meet people every day that you know their name, but you never really know their story. You miss out when you don't ask about their story because usually it is a story of such strength and love that not only has seen them through to their next breath, but can help you in your very own walk.

You hear about what they have done in their communities for the cause, but sometimes we never really understand what they are currently going through.

Sometimes I feel that in dealing with our own issues we tend to overlook the importance of understanding that someone other than us is fighting a battle of some kind. It could be Lupus.... it could be Diabetes... it could be Cancer... or it could be just Stinking Thinking... but everyone is fighting some sort of battle in their lives.

As survivors of whatever we have suffered and continue to suffer, we should realize that if we are not walking in the person's shoes we will never really know their story to a point of complete understanding... We will never really understand what they are going through until we live it or see it from day to day...

We may know their name, we may even know what they've done but it's the time we take to know their story and empathize, not sympathize, with what a person is going through that really makes the difference.

Sometimes you think you know the person, but you really have no idea....

The Butterfly, We Fly Together!

2012-01-25T12:38:00.000-05:00

The Butterfly

A man found a cocoon for a butterfly. One day a small opening appeared, he sat and watched the butterfly for several hours as it struggled to force its body through the little hole.

Then, it seemed to stop making any progress. It appeared as if it had gotten as far as it could and could go no farther. Then the man decided to help the butterfly.

He took a pair of scissors and snipped the remaining bit of the cocoon. The butterfly then emerged easily. Something was strange. The butterfly had a swollen body and shriveled wings. The man continued to watch the butterfly because he expected at any moment, the wings would enlarge and expand to be able to support the body, which would contract in time.

Neither happened. In fact, the butterfly spent the rest of its life crawling around with a swollen body and deformed wings. It was never able to fly.

What the man, in his kindness and haste did not understand, was that the restricting cocoon and the struggle required for the butterfly to get through the small opening of the cocoon are God's way of forcing fluid from the body of the butterfly into its wings so that it would be ready for flight once it achieved its freedom from the cocoon.

Sometimes struggles are exactly what we need in our life. If God allowed us to go through all our life without any obstacles, that would cripple us. We would not be as strong as what we could have been.

Not only that, we could never fly.

To all my Lupies: Don't let the restricting cocoon and the struggle to squeeze through it get you down. It's a necessary process in order for your butterfly to emerge and fly! In due time, after our needed process, We Will Fly Together!

Fight! Fight! Fight!

2011-12-29T12:31:00.000-05:00

No words need to be spoken really after watching this video. Ben Succumbed to his disease on Christmas day! R.I.P Ben Breedlove!

It's scary having a disease that you know will ultimately be your demise, but it is so important to FIGHT for your life until the very end! This young man did that! I just want to encourage everyone, if you know someone who is battling any disease take a moment just to realize that the fight is not easy. The physical and mental strain that continuously takes a toll on the body of a chronically ill person is heavy. It's not so easy to just do the things that a normal healthy person would do. It's hard sometimes just to mentally prepare for a day.

Those who are in the fight, the battle is not over. FIGHT FIGHT FIGHT UNTIL THE VERY END! The battle is not over.... While you are here in this earthly body Fight with all of your might! UNITE in the FIGHT to LIVE!

You CAN'T!

2011-12-12T09:10:00.003-05:00

Dear Lupus,

You can't come into my life and think you will render me completely helpless. Yesterday.. you took my voice but you could not render be voiceless.... I was able to get the word out about your tricks anyway....Today you have tried to stop me from doing daily tasks like brushing my teeth, combing my hair, rising from the bed to do so, and opening the medicine to remove you from my body.... All I can do is shake my damn head at you. You can't do this to me... You can't because I won't let you.

Guess what... I rose out of the bed.. Yeah it was a bit difficult but I did it!
Guess what ....I made it to the bathroom to brush my teeth.... yeah the toothbrush slipped out of my hand twice but I used my other hand to help guide the one you try to render helpless...
Guess what I then used both those hands to brush and comb my hair... It was hard completing this task... but I did it!
Guess what .... when I went to go downstairs to open my medicine to remove you from my body....It took me five tries to get it open and a bunch of laughing at you from me and my family... but I did it!

Lupus You CAN'T break me... You CAN'T break my spirit....You CAN'T break my soul... You CAN'T!

Why? Because....

I WON'T LET YOU!

Lupus you punk ass sucker!

*POOF*

BE GONE! I'VE GOT MY "S" ON MY CHEST AND I'M STILL STANDING

STRONG!

Lupus Survivors Advice

2011-12-08T07:01:00.000-05:00

When you are newly diagnosed it can be scary, overwhelming and you may feel like there is no one that knows what you are going through....It can help tremendously and it is VERY IMPORTANT to have support and to get some advice from other lupus survivors about how to handle the disease. Sometimes one who has been struggling for a while needs reminders...So here are some lupus survivors' great advice...

Tina -" Listen to what your body is telling you and don't overdo..."

Shannon-"Listen to your body and keep a diary of how you feel. Get your rest if you feel tired."

Jennifer -"Take things SLOWLY, no matter how slow you think you are doing things do it slower than that. Also think positively and take your own advise dont let other people influence how you live your life and how you treat your Lupus because at the end of the day this is your fight. Dont let other people dumb down what you have, you may fight some adversity or ignorance."

Adrienne-"sleep more, eat less, dump the negative ppl, stay close to the positive ones... continue to enjoy what you enjoy, & fuk what you don't...."

Trinity-"Don't let it consume you. It is truly overwhelming."

Diane-"You can never take care of yourself too much. It's not going to be easy. but learn as much as you can about your health and above all things love yourself through the sick times and the healthy...you deserve it.."

Kiela-"It's not the end of the world... Keep ur head up... Enjoy what u can when u can... Get support from those who is walking in ur shoes"

Linda-"listen too your own body and enjoy what you can dont worry over what you cant do"

Juanita-"Dont ever give up. You have a huge lupus family"

Cheryl-"Walters It aint over until God says its over! The drs have told me I was gonna die and I heard so many bad things from them. Follow ur heart and what u believe. Dont be afraid to tell those drs no! Do the research pray and wait. I took myself off chemo and declined so much testing only to find out i was right. My health has turned around where i am no longer disabled and i live a very normal life! Stay positive!"

Tina-"‎1) FIGHT! Lupus will do everything it can to take you down...don't let it. 2) Take your meds!!!!! 3) Enjoy the good days, but don't over do! 4) If someone is wanting to help you...let them!"
Red-"If your treatment is not working don't be afraid to find another doctor...."

Christie-"PLEASE PLEASE DO NOT EVER GIVE UP!!! WHAT YOU ARE FEELING AND GOING THRU WE ALL HAVE AT SOME POINT BEEN IN THOSE SAME SHOES...YES IT'S VERY TIRING AND VERY TRYING & VERY FRUSTRATING TO THE POINT THAT YOU WANT TO SCREAM OR GO CRAWL INTO A HOLE AND NEVER TELL ANYONE WHAT HOLE YOU'RE IN...THOUGH WE DON'T DO THAT BECAUSE THEN THAT MEANS WE WOULD BE A QUITTER AND WELL YOU & THE REST OF US ARE NOT QUITTER'S...AND YES WE WILL FIGHT OUR WAY THRU ANYTHING TO GET THE RIGHT ANSWER AND TO BE FINALLY HEARD MEANING WE WILL FIND AND SEARCH AND KEEP ON DOING UNTIL WE FIND THE RIGHT DOCTOR THAT TRULY CARES AND WILL LISTEN FOR THAT IS THE KIND OF DOCTOR YOU WANT...AND YES THEY ARE HARD TO FIND ...AND IT'S ALSO VERY IMPORTANT THAT THE DOCTOR YOU DO SEE ORDERS THE RIGHT TESTS AND ALSO ORDER THE DETAILED TESTING AND THAT WILL CHECK AND RECHECK THE TESTS SO THAT HE OR SHE WILL BE ABLE TO PRESCRIBE THE RIGHT MEDICINE AND THE RIGHT DOSEAGE FOR WHATEVER KIND OF LUPUS YOU HAVE...WHAT I MEAN BY THAT IS THERE ARE SEVERAL DIFFERENT KINDS OF LUPUS'S....FOR MYSELF I HAVE LUPUS ANTI JO WHICH IS VERY HARD TO DETECT AND IT'S VERY RARE...MY SISTER WHO IS 2 YEARS OLDER THAN ME HAS LUPUS SLE AND SHE ALSO HAS FIBRO AND I ALSO HAVE FIBRO..SHE'S GOT HIGH BLOOD PRESSURE AND I DO TOO...SHE'S HAD STROKES AND HEAT STROKES AND ALSO SHE'S HAD "TIA'S" WHICH ARE SILENT STROKES AND I HAVE HAD STROKES, TIA'S AND HEAT STROKES...AND WE ALSO BOTH HAVE RA WHICH IS RHEUATOID ARTHRISTIS SORRY IF MISSPELLED....IT'S ALSO IMPORTANT TO LIMIT THE STRESS AROUND YOU AND IN YOUR HOUSEHOLD AS MUCH AS POSSIBLE SINCE STRESS CAN EASILY BRING ON A FLARE UP EVEN WITHOUT WARNING...ALSO YOU WILL NEED TO LEARN TO SAY "NO" MEANING I'M NOT ABLE TO GO FOR I WOULD LOVE TOO THOUGH I CANNOT THIS TIME THOUGH PLEASE CHECK WITH ME ANOTHER TIME" ..FOR THERE WILL BE TIMES THAT EVEN THOUGH YOU WANT TO GO YOUR BODY WILL NOT LET YOU DO THAT AND IF YOUR FRIENDS OR LOVED ONES DON'T UNDERSTAND THAT THEN IT'S TIME THEY LEARN A QUICK LESSON ON HOW THINGS WILL BE FROM NOW ON....IT'S VERY IMPORTANT THAT YOU HAVE A STRONG SUPPORT SYSTEM AROUND YOU..RATHER IT'S YOUR FAMILY, FRIENDS, AND OR ALL OF US HERE ON FACEBOOK...HUSBAND BOYFRIEND OR COMPANION IT'S VERY VITAL TO HAVE A STRONG SUPPORT SYSTEM....ALSO GET LOTS AND LOTS OF REST...SLEEP AS MUCH AS NEEDED....MAKE THAT TIME TO REST...FOR YOU DO NOT NEED TO "DO EVERYTHING YOURSELF"..OH I KNOW EASIER SAID THAN DONE...WELL MICHELLE YOU WILL FIND THAT THERE WILL BE TIMES WHEN YOU WILL NOT BE ABLE TO FEEL LIKE EVEN COMBING YOUR HAIR...AND SO WHAT IF IT'S NOT COMBED..THROW ON A SCARF OR BALLCAP AND NOT WORRY ABOUT IT..IT'S THE LITTLE BITTY THINGS THAT COME TO LIGHT THAT WILL TAKE THE LEAST AMOUNT OF ENERGY AND YOU WILL FILL DRAINED AFTERWARDS!!! AND THERE MAY COME A TIME WHEN YOU'RE HAVING A FABULOUS DAY MEANING A GOOD DAY AND YOU DECIDE TO GO TO THE STORE LOOK AROUND AND SUCH OR WHEREVER IT IS THAT YOU LIKE TO GO...YOU'RE GOING ABOUT YOUR BUSINESS AND THEN ALL OF A SUDDEN LIKE STORM WIND HIT YOU HARD AND YOU NEARLY FALL OR YOU DO FALL..OR YOU JUST GET REAL FAINT DIZZY GET AN UPSET TUMMY OR A HEADACHE OR JUST START FEELING YUCKY TO THE POINT YOU HAVE TO GET WHERE YOU CAN LAY DOWN..SO JUST BE AWARE "ALWAYS ALWAYS" BE AWARE OF WHAT'S GOING ON WITH YOUR BODY AND LISTEN TO IT!!! YOU WILL ALSO FIND THAT NO 2 PEOPLE WILL BE HAVING THE VERY SAME HAPPENINGS..OH WE WILL HAVE SOME AND AT TIMES MORE SO THAN OTHERS...THAT'S WHAT MAKES THIS SO HARD TO DETECT TOO IS BECAUSE YES THERE ARE CERTAIN SIGNS AND KEYS THAT A DOCTOR LOOKS FOR AND THEN THERE ARE TIMES WHEN IT'S HARD TO PUT THE FINGER ON "OKAY THIS IS WHAT IT IS"...FOR EACH OF US THAT HAS THIS WE HAVE HAD FOR A VERY VERY LONG TIME....THOUGH IT WILL STAY QUIET WITHIN THE WALLS OF YOUR BODY NEVER SHOWING ANY SIGNS OR TRUE SIGNS AND THEN AT SOME POINT WHAM IT SHOWS IT'S TRUE COLORS AND FINALLY COMES OUT OF HIDING...FOR ME I'VE HAD IT SINCE EARLY CHILDHOOD THOUGH I WAS NEVER EVER TOLD BY A DOCTOR ON WHAT I HAD UNTIL 2007...FOR I HAD ALWAYS TOLD THE DOCTOR THAT SOMETHING JUST WASN'T RIGHT THAT SOMETHING WAS WRONG...OR I WOULDN'T BE THIS ILL...OR FEEL THIS WAY....THEY ALWAYS TOLD ME I WAS IMAGINGING THIS THAT NOTHING WAS WRONG...HERE WE ARE IN 2011 I'M 59 AND ON MARCH 15, 2012 I WILL BE 60...AND NEVER EVER STOP SEARCHING AND GETTING TO THE RIGHT DOCTOR TO HEAR YOU & LISTEN TO YOU...AND I'M SO GLAD THAT IT DIDN'T YOU AS LONG AS IT DID ME...HAD I NOT LISTEN TO MY SISTER WHEN SHE TOLD ME TO ASK THE DOCTOR ABOUT IT AND TO RUN THE TEST I STILL WOULD NOT OR MAYBE I WOULD HAVE THE ANSWER NOT SURE...JUST GLAD I KEPT AT IT....STAND STRONG, BE PROUD, BE THE WARRIOR YOU ARE AND BE THE SURVIVOR THAT YOU ARE AND ALWAYS "BELIEVE"...BECAUSE ONE THING FOR SURE WE MAY ALL HAVE LUPUS, THOUGH LUPUS DOESN'T HAVE ME!!!! FOR WITH EACH FLARE UP ALL THAT DOES IS MAKE YOU STRONGER,,,AND TO HAVE GOTTEN THRU THAT FLARE UP AND GOTTEN ON TO THE OTHER SIDE OF IT WELL THAT JUST MEANS WE WILL BE ABLE TO FACE THE NEXT WHEN EVER IT DECIDES TO FLARE UP AGAIN..AND TRUST ME IT WILL...AND YOU NEED YOUR STRENGTH AND BE STRONG AND BELIEVE AND HAVE THAT STORED UP ENERGY FULL AND READY BECAUSE NO 2 FLARE UPS ARE THE SAME...JUST LIKE NO 2 DAYS ARE ALIKE...SOFT GENTLE HUGS & SMILES TO YA MICHELLE..WE ARE ALL HERE FOR YOU...YOUR TEXAS FRIEND CHRISTIE...PLEASE FORGIVE ME FOR WRITING SUCH A LONG COMMENT...I JUST FELT YOU NEEDED TO KNOW THIS INFORMATION...AND THE REASON FOR MY CAPS IS BECAUSE I HAVE OPTIC NERVE DAMAGE TO BOTH EYES CAUSES FROM THE LACK OF BLOOD SUPPLY TO BOTH EYES CAUSED FROM LUPUS ANTI JO , AND MY STROKES AND BECAUSE OF RA...SO I'M NOT "YELLING" OR "SHOUTING" OR "MAD" ....HOPE YOU UNDERSTAND WHY I HAVE TO USE THEM...IT'S THE ONLY THING THAT HELPS ME READ THE LETTERS BETTER..FOR I'VE TRIED EVERYTHING AND THEN SOME AND CAPS WORK FOR ME...AND AT LEAST I'M STILL ABLE TO BE ON THE COMPUTER AND NET STILL AND FOR THAT I'M THANKFUL AND GRATEFUL.. ONE MORE THING I COULD ADD...IS "LEARN TO PICK YOUR BATTLES"..BIG OR SMALL....DOESN'T MATTER..EITHER ONE COULD TRULY THROW YA A CURVE BALL..MEANING BRING ON FLARE UP AND NO TELLING WHAT SIZE THAT FLARE WILL BE UNTIL YOU FINALLY FIGURE OH GEEZ NOT ANOTHER ONE...MY DOCTOR TOLD ME THIS: YOUR BODY IS AT WAR WITH THE INSIDE YOU AND YOU NEED TO UNDERSTAND THAT AND IT'S THE WORSE KIND OF BATTLE ANYONE CAN IMAGINE...FOR WHEN THE BATTLE IS OVER AND YOU'RE OUT ON THE OTHER SIDE OF IT...THAT'S WHEN IT TRULY REHITS AGAIN WHY? CAUSE THEN THE OUTER YOU MEANING FRESH PART AND SUCH WILL JUST GO LIMP AND YOU WILL FEEL LIKE YOU HAVE BEEN RUN OVER BY A MAC TRUCK THEN THE GUYS AND GALS FROM WWE MOVE IN AND FINISH YOU OFF .... SO AGAIN BETTER GET CAUGHT UP WITH SOME MUCH NEEDED STORED ENERGY FOR YOU'LL NEED IT AND WILL BE GLAD YOU DID..."

Doris-"Read, read and research information about lupus. Take it day by day and keep a daily log of your symptoms . Don't give up!"

Kathy-"Find your passion - be creative. For me I started to paint with watercolors. There are things you won't be able to do or won't feel like doing. But realize that is ok. Find something you love. While I despise lupus - it has also become a blessing. I never would have taken the time to paint. I see life in a whole new light. I photograph children dancing through the air thoroughly enjoying each moment. I paint portraits of their little faces lost in thought. When I feel crummy and can't leave I read and study about painting and photography. Don't live with lupus - make it live with you and learn to enjoy life in a whole new way."

Pamela -"All of these are so good that I can't add anything but I've been so run down since Oct. and I know the reason is because I didn't slow down and take care of myself and try not to worry about the small stuff - best thing you can give yourself!!!!"

Dolly-"Educate yourself"

Cyndi-"Read everything you can about lupus! Eat healthy, lots of rest, NO STRESS!! Exercise.. Get up and out, just don't overdo.. Know your limits!! Get good support team/family ! Prayer!"

Tremia-"Not only do you have to educate yourself but those around you. Listen to your body and REST when it tells you to. Know you are not lazy but it is this disease and you must do what your body requires."

LeeAnn-"Support system is so important....I 2 have fibro and oa no one else in my family has it...its hard when members of ur family think that ur r well...I tell everyone.." walk in my shoes for 24 hrs and see how u would feel" so i have got to the point were I dont talk to my family about my illness..Its so sad..But I have a new family here....God Bless each and everyone of u"

LIVE BIG!

2011-12-07T11:08:00.001-05:00

We get it Lupus makes us sick... but we can't stay in the sickness it brings us. We need to leave the reality where it is and retrain ourselves and find reason to get back to LIVING in spite of.... Life is supposed to be good for us, all we need to do is LIVE and no longer allow Lupus to speak in volumes and distract the LIFE we have been given to LIVE!

Are you ready to LIVE BIG in spite of Lupus? If not get on your living shoes and get ready to live. The time has come to let lupus know who is the boss. I know you are hurting... I am hurting too but whatever part of you is not hurting use it to LIVE BIG. I have being talking Live BIG for a couple of weeks now... Often people ask me what that means. For me it means LIVE Believing In God! It is a statement that gets me through each day. We have not been placed on this earth to live small...or to Live Seeking More And Living Less... We have been placed on earth to LIVE and to LOVE. So when I say LIVE BIG I am using the power of God within me to move forward in spite of how I feel and in spite of how lupus tries to dictate me to live.

So with that are you ready to LIVE BIG? Once you do watch how your life living with lupus will change!

LIVE BIG and Love On Purpose, Put on your living shoes and get on the starting line!

ON YOUR MARK
GET SET
GO!

Dear Lupus 12/5/11

2011-12-05T11:28:00.000-05:00

Dear Lupus,

I am so through with you that I can't even form the words to describe my disgust. You have attempted to steal my joy and the joy of other lupus survivors and I despise you for it. I thought I would let you know that you have not won any battles and have yet to see the power and glory of my father The King. So I am putting you on notice right now, if I ever see your ugly face again it will not be a good thing for you. I refuse to allow you to come in and strike whenever you feel like it. No matter what happens it is not you who is in control but God. You can not control my life or the lives of other lupus survivors. We will gladly take a stand behind the Almighty in order to place you under our feet. Just Stop trying to hurt us and we will surely be happier in our living.

In anger, disgust, not yours and completely dependent on God,

Me

Some Say....

2011-12-05T10:29:00.001-05:00

Some say I am disabled,
But you know that isn't true.
I simply have a challenge
A little different from you.
My slight inconvenience, has taught me
Things they could not know.
Each obstacle is a victory,
Enabling me to grow.
I'm not really any different,
I cry, I laugh, I snore.
I don't want to be treated
As if I'm not a person anymore.
Out of good intentions,
People are afraid to let me try.
But sometimes I have to fall,
And sometimes I need to cry.
God gives me strength and dignity,
And the courage to be all I can be.
For He doesn't see me as disabled,
He just sees me as me.
~Author Unknown~

Many Lupus Survivors are labeled disabled and have to live a life with a disability that many can not understand. Although we walk day to day looking good, it is important to know that a Lupus Survivor is not always feeling good. We struggle day to day to complete daily tasks and sometimes we hurt so much physically and emotionally that we just cry on a whim. It does not mean that we want your sympathy and to be treated differently than the person we really are. We want our loved ones to understand and empathize with our disability and allow us to be who we have always been to them. Too often when a Lupus Survivor divulges their disease to another the sympathy comes out and we are treated differently. Sometimes people get angry because of our disease... other times people try and overcompensate for where we are lacking without realizing the lack is just for a moment... others look at us with sadness saying to themselves what a pitiful life we must lead because of the disability we have....

Most times a Lupus Survivor just want to be understood. We need others to understand that we will not always be able to do all that we used to but we don't want to be put on your pity list. We want you to understand that when we feel good we would like the opportunity to do good and when we feel bad that you understand that and allow us that time to build ourselves back up.

A Lupus Survivor struggles from day to day and we can only make it when those around us view us as who we really are and not as a Lupus Survivor. Loved ones remember we have lupus, lupus does NOT have US. We are still the same person just with a different walk.

Spread the word, See me as me not as the challenges I face day to day.

Racquel
I have Lupus, Lupus does NOT have ME!

Pick Up Your Sword and Fight!

2011-12-01T18:13:00.001-05:00

"Don't allow your illness to dictate the life you want to lead! When you feel good do good for yourself. Don't stay in pity parties after all it's not a party at all b/c it is a party of one. You deserve more than the pain anything causes. Pull yourself up, clean yourself up, wipe your tears, remove your fear,take a deep breath and LIVE BIG!" ~R.Dozier~
It is difficult to live with a chronic illness. An illness that you know one day will be a contributor to the demise of your physical person. Knowing that you have something in you that can kill you can be taxing on your mind, body and soul..... It is important for anyone who deals with chronic illness to deal with it in a way that will be helpful to staying healthy. Stress can speed up any disease and create a monster raging within you. Although we know that we have little pity parties of one... crying whoa is me... why me...what did I do to deserve this..I don't want to live...why can't I just die and be done with it all...I'm angry at God and myself and everyone else sessions... we can't stay in that moment! We all go through them don't get me wrong, but we must be strong enough to pull ourselves out of them. We can drown in the sorrows, whoas and worries of what a disease will do to us and literally allow the disease to overtake us and kill us. We can puff up and not follow doctors orders because we don't feel it is ok for us to be in a sickly way, but who do we hurt when we do this? Yes you got it, ourselves. There is power in realizing that in our weakness our strength rises to the occasion if we just allow it to channel through us. The party is over... It's boring to party by yourself anyway. It's time to channel that inner strength and begin to pull yourself up and live again. I know it may be new... I know you are fearful... I know you feel like nothing has worked to make it better...Remove all negative thoughts and realize the importance of the NOW. What can you do NOW to feel alive again... What can you do NOW to remove the despair you are in...What can you do NOW to make sure that if your next breath was your last, in that last breath you can whisper I lived big, I loved on purpose and I enjoyed every minute of it...

A person with a chronic illness is a strong person. Remember a strong person is the one who knows how to be quiet, shed a tear for a moment, realize their fears and then picks up their sword and fights again.

It's time to pick up your sword...

LET THE FIGHT BEGIN!
Walk in the power that is you!

Racquel

"I have lupus, lupus does NOT have ME!"

http://www.lupusincolor.com

The Irony

2011-11-29T18:21:00.001-05:00

My mind is always racing with thoughts about my battle with Lupus. Most times I am trying to find tranquil thoughts to offset the raging war in my body. As one can imagine this is a constant struggle that is sometimes won with tranquility and other times submitted to the barrage of constant pain. Either way it always has my mind in constant thought. I find myself always trying to find a way to combat negative thoughts about this disease. In that process I have found my mind wandering from my own needs to the needs of those I love and share my life with day to day.

I know many will say Aww what a noble gesture to think of someone other than yourself. But, I believe it is sometimes a trick to bring back excessive negative thoughts about dealing with Lupus. The reason I say this is because at times I get into a mood and in thought about how painful it is for me to see my loved ones hurt and have to deal with me as I deal with this disease. I look at my friends and family and the hardest thing for me is to see my loved ones miss the old me I used to be. I mean really if that is not my mind playing tricks on me trying to allow the negative to slip back into my thought pattern I don't know what is.

The irony of it all, thinking about the feelings of someone else while being thrusted into a plethora of negative feelings and emotions. It's crazy how that negative can creep in and slowly try to poison your mind and soul.

Sometimes I have to just shake myself out of it and remind myself of the good things that come out of having a life altering disease. I have to shake the negatives off in order to truly begin a journey into a tranquil way of life.

I am on a quest to live in tranquility through thoughts that increase my mental health in order to generate a better physical body. There is power in positive thinking and there is healing in tranquility.

I have lupus, Lupus does NOT have ME!

Lupus Warriors Unite!

2011-10-10T13:17:00.000-04:00

A Lupus Survivor just does it. We force ourselves to get up. We force ourselves to put one foot before the other, and damn it, we refuse to let Lupus get to us. We fight. We cry. We curse. Then we go about the business of living. That’s how we live day to day. We can't wallow in the pity that lupus can bring. We just have to keep on living in the power that brings us to another day. There’s no other way!
If you ever see a Lupus Survivor from day to day you will see the epitome of strength. Day to day it is a challenge just to rise from the bed but each day a Lupus Survivor uses the power within to fight the battle in their bodies. Some days are harder than others but each day is a constant struggle.

It's like this... Imagine a war in your body. A war that you can not even throw up a white flag and say I surrender and the battle ends. Imagine an ongoing war that never ends until it kills what it is after. This is what a Lupus Survivor deals with on a daily basis. They cant' throw in the white flag and say I surrender because if they do they will be giving into the war within themselves. So they take up their armor and fight the battle in full gear day to day. A Lupus Survivor never relinquishes the fight to the enemy because if they did it could and would cost them their life.

Day to day you see Lupus Survivors that on the outside look healthy and strong. But, on the inside their bodies are literally fighting for residency in their bodies. Cells are attacking one another for no good reason at all, causing an uproar in the system of a Lupus Survivor. A hidden disease from the eye, Lupus strips and attempts to kill a Lupus Survivor's life from the inside out.

It's not a great feeling for a person to daily have to deal with that war. It's not easy for the Lupus Survivor to put on a pretty face when their body feels like the ugly warthog. But, Day to day......

A Lupus Survivor just does it. We force ourselves to get up. We force ourselves to put one foot before the other, and damn it, we refuse to let Lupus get to us. We fight. We cry. We curse. Then we go about the business of living. That’s how we live day to day. We can't wallow in the pity that lupus can bring. We just have to keep on living in the power that brings us to another day. There’s no other way!
If you know someone who is in the battle with Lupus be sure to remember the battle is fought daily every second of every day. Take the time to realize this and understand that it's not an easy battle.

To all of my fellow Lupus Survivors, KEEP FIGHTING THE FIGHT. THE WAR IS WON DAILY AS YOU WALK POWERFULLY INTO THE DAY DESPITE WHAT YOUR INSIDES ARE DOING. DON'T WAVE THE WHITE FLAG GET YOUR ARMOR ON AND WALK IN THE POWER THAT IS YOU, YOU ARE A LUPUS WARRIOR!

My Lupus Story

2011-09-25T10:25:00.005-04:00

What a story it is....

I was diagnosed officially with Systemic Lupus Erythematosus in 2004 but the onset of the disease started in 2002 with a firm diagnosis of Rheumatoid Arthritis. I was at the prime of my life, I had just moved into my first home, my son was growing up and I was enjoying life to the fullest. But, something just wasn't right.

I began having major problems with extending my arms fully and my wrists were hot and inflammed and painful for months. I just thought it was because I worked on the computer constantly. I purchased some items to ease the pain as I was on the computer thinking it was carpal tunnel syndrome. This did not help the pain. After visiting a hand specialists I was sent to a Rheumatologist that diagnosed me with R.A. I was devastated. Here I was a fully active young woman all of my life, I played every sport you can imagine a girl would play and was good at all of them. I could not believe that I would be hit with, what I thought was, an "old person's disease." Either way I pretty much handled it and went on my way and began treatment for RA.

Well not more than 6 months I was hospitalized with double pneumonia & pleurisy, we still thought it was just b/c of the strong medications I was taking that suppressed my immune system. At that time I was using NASAIDS and methotrexate to help with the RA. Some time passed and I was hospitalized again this time with ascites (fluid build-up in the abdomen). I couldn't walk or eat I was miserable and was hospitalized for about a week. I had about 4 liters of fluid drained from my abdomen, I had a central line in my neck to draw blood and was pretty messed up. At this time I received an Endoscopy and this is when it was determined that it was Lupus. It began to affect my internal organs.

I knew a girl in college that died of LUPUS and always thought it was cancer. I was quickly educated as to what sort of life changes I would need to make as well as how to handle my newly founded disease.

After doing some research and remembering the past, I remembered that my father died from scleroderma, an autoimmune disease of the connective tissue, a closely related disorder of lupus. That cleared it up for me. Here I thought I was just the "special" one to get the disease noone has a clue about. Come to find out it was somewhere in my genes. I began to thank good old dad for the gene in a smart and rude way. After I got over how I got this disease and after my pity party of why me Lord and what do you want me to do with this Lord, I realized why I had been given this great lease on life.

I realized that my story could touch another with the disease and that I could educate others about the disease. I went through a long period of time when even my family didn't believe that I had lupus. They would tell me to get second opinions, third opinions and so forth. They would tell me to eat differently or slow down and really couldn't fathom the idea of me being as sick as I was. Sometimes they still can't.... It wasn't until I submitted to the will of God saying Use ME Lord to touch another that is dealing with what I am dealing with that made the difference. I had to submit to Him to give the realization to my family that this wasn't my dead woman walking papers, but my papers to live life to glorify Him and help others.

Today, My disease is still very active. I have been having many flares and new issues pop up almost daily. But, when my flares are to a minimum it gives me the opportunity to help someone else. I am learning to take time for myself and not to let things stress me out. I personally had to realize how to let some things go in order not to be overwhelmed and go into a flare(ok I am still working on that one :-)

I have a LUPUS Support group for African American and Spanish women. Although it's geared towards African American and Spanish women it is not only for them. I chose this group of women because we are the most affected at this time and we need to support one another in our quest to Live. In my walk in this disease I have seen the difficulty African American and Spanish Women have had in asking and getting the support needed. I believe that with this support we can inspire one another to Live instead of submit to a disease that just so happens to harbor in our body.

That's my story in a short form....

"I have Lupus, Lupus does NOT have me!"

http://www.lupusincolor.com

Got Lupus????

2011-09-16T09:04:00.000-04:00

Lupus isn't a simple disease with an easy answer.Fevers, aching swollen hands and knees, infections, hair loss, pleurisy and more..It's time to fight back and take your life back from Lupus. Life is meant to be lived! When you feel good live life to the fullest. When you feel bad ride out the wave to the shore dust off the sand and hit the ground running. Remember you have lupus, lupus does NOT have YOU!

I have to recite this positive lupus affirmation to myself daily. Although lupus is a part of my life I have to constantly input the importance of living my life to the fullest even in times of pain. Not every day will be roses and butterflies with lovely songs of positiveness. Sometimes it will be hard and it is at those times that I must pick up my cross and walk reciting ...." I have lupus lupus does NOT have Me.... I have lupus lupus does NOT have Me.... I have lupus lupus does NOT have Me.... I have lupus lupus does NOT have Me.... I have lupus lupus does NOT have Me...." I will say it sometimes over 1000 times a day. I know that sounds crazy right? No it really isn't. There is so much power in my tongue that honestly my statement..."I have lupus lupus does NOT have Me...." allows me to move through every pain, every heartache from the pain. It allows me to mentally prepare myself for a journey I did not choose but am taking step by step with a mindset that I will NOT allow anything that comes with lupus to bring me down....to take me out of my character....to wear me to the ground....to beat me up mentally, physically or spiritually....

Someone asked me... oh you Got Lupus?????, first off I looked at them like they had three eyes because who just busts out and ask you that....Anyway, I answered uh yeah I have lupus I've got it right by the balls. Right where I want it strangled in the middle of my hands. They kind of looked at me crooked eye like huh....

I had to explain that my talk to myself and my lupus directly affect the way I go about my day. If I wallow in the pity like I really want to I have allowed lupus to take control of me and become an inherent part of me. I won't allow that to happen. So I change my way of talking in order to curse the demon of lupus out of my body. I believe in God and I know that He is not through with me yet. Since my God is not a God of fear, despair, sickness and sadness I choose to dwell in the spirit of faith and hope and I choose to speak in that manner. Never will I give in to the pity of what lupus can bring. Lupus can destroy your spirit but I refuse to be a part of that pity party and allow it to consume me. So I choose to positively speak it out of my life. When I feel good, I will do. When I feel bad, I will rest. Everyday I WILL curse lupus so that it knows that it is not wanted in my body and the body of others.

Got Lupus????? Yeah, but lupus don't got ME!
SPREAD THE WORD

GO TO HELL!!!!

2011-09-08T06:49:00.001-04:00

I need Lupus to go to HELL and BURN.

You know the song Burn Baby Burn we need to have a lupus inferno!

I am done with my joints being on fire and I want lupus to really feel the burn. That bitch doesn't deserve the heat a fire generates!

Lupus I need you to Go To Hell and sit and wait your turn in the fire....

As a matter of fact just jump into the incinerator and enjoy the ride!

FUCK LUPUS! STUPID BITCH!

I dream...

2011-09-07T11:34:00.001-04:00

I dream of the day when I can wake up to the face that knows the pain and fears I have had and can make me forget they ever existed.

Letter to Family and Friends!

2011-09-04T09:24:00.000-04:00

LETTER TO FAMILY AND FRIENDS (INVISIBLE DISEASES)

I share this letter every year sometimes twice a year. Family and friends please take note to what is being said in the letter it is so true and we need you to understand.

LETTER TO FAMILY AND FRIENDS

(INVISIBLE DISEASES)

Unknown Author

I’m not trying to speak for everyone, but from my own perspective I can tell you what I NEED from my family and friends and so seldom get.

I NEED TO BE SHELTERED dropped off at the curb and told, don't try to do that, let me help you.... There is so much going on in my body that I have no control over and it does get overwhelming and exhausting to my body.

I NEED TO FEEL PROTECTED even though I can't be safe on the inside at least I can feel if ANYONE or ANYBODY wants to "get at me" then they are going to have to "GO THROUGH" my protector.

I NEED TO FEEL CHERISHED as if my family or friends feel they are blessed for each day we have together, LIFE IS SO FRAGILE.

I NEED TO FEEL CARED FOR when I am feeling sick everything is hard to do, even dressing and I WOKE UP WITH ONLY 2 MILES OF ENERGY INSIDE OF ME AND A NORMAL DAY TAKES 25 MILES WORTH. I need someone else to say, "let me empty the dishwasher", or “so what do you need me to do?” I FEEL GUILTY when I can't do the daily inconsequential details that are the GLUE HOLDING THE HOUSEHOLD INTACT.

I NEED TO FEEL RESPONSIBLE I know the latest research, I am on the internet each day to learn more, please don't say B-12 might cure me, I’ve tried the miracle cures and read the articles. DON’T YOU KNOW how DISAPPOINTED I GET WITH MY OWN BODY for NOT COOPERATING?

I NEED TO FEEL FORGIVEN for NOT being a full person (in the world's view). You may not hold a grudge, I know it’s hard on you to pick up slack, but I don't FEEL FORGIVEN, I feel guilty.

I NEED TO FEEL LIKE PART OF A TEAM working toward a common goal (our life together) and it is OK if my main contribution is SPIRIT.

I NEED TO FEEL INCREDIBLE I get angry sometimes seeing a tennis mom sachet into lunch with the girls after a manicure. I WISH I had the energy to even have a manicure, let alone waste precious energy on such frivolous pursuits as gossip over lunch and judging other women's clothes and homes and accomplishments.

I NEED TO FEEL AFFIRMED So many people scoff when I can't "Do just this one little activity, and it IS EXPECTED." I get tired of feeling guilty for not BEING ENOUGH to people that I don't care about in the first place. When I rant over the injustice of my illness, don't try to talk me out of it, or encourage me, ust say "I KNOW, IT ISN'T FAIR, YOU DON'T DESERVE THIS"

I NEED A FRIEND who is there for me on the good days and there for me on the bad days, too. I get left out of a lot, because I go for periods of time when I am unable to do much, they think I probably can't participate, so they forget about me, or just don't even invite me. It is LONELY being ill over a long term.

I NEED TO BE ENCOURAGED The thought of being sick like this for the rest of my life INDUCES WAVES OF PANIC. It sometimes seems like a life not worth living, the quality is so poor so much of the time. I’m a Christian, I have great faith, but it can be overwhelming, especially when it’s implied "if your faith were greater, or if you would just DECIDE not to be sick....." We HAVE ALL TRIED THAT - it doesn't work.

I NEED TO BE PRAYED FOR Frankly sometimes in the middle of the night when everyone is sleeping soundly and there are only the creaks of the house for company....I'm SCARED, REALLY SCARED. I wonder who will remember me when I’m gone and if I’m making any sort of impact on the world at all to validate my life. REALITY looms large and feels ominous. It seems like I’m PURSUED NIGHT AND DAY BY A STEALTHY UNSEEN STALKER, who knows my every move. It would feel wonderful to really believe I am actively prayed for.

I NEED TO BE ANTICIPATED if I am sick in bed, know that I am dying inside, because I am neglecting things that need to be done, and the PRESSURE AND STRESS TO GET WELL is VERY GREAT because I know when I do get out of bed THERE WILL BE EVEN MORE RESPONSIBILITY WAITING FOR ME than BEFORE I wore myself down into a state of exhaustion and bedrest. Just come on over and SILENTLY DO SOMETHING/ ANYTHING, and don't even expect gratitude, I may not even realize, but when I get up a lighter load will be blessed.

I NEED TO BE NURTURED I just got an email requesting a group of us to get a nice meal up for someone, because she is down with the flu, poor husband for taking care of her! I LIVE WITH THE FLU EVERYDAY OF MY LIFE! The last time a a meal was brought to us, was a year ago, after I had been extremely sick for 6 weeks. Before that it was years. No one even THINKS of reaching out to a chronically ill person, because they might be EXPECTED to do it monthly or because they are so used to you being sick, they don't even realize sick MEANS SICK. Our families suffer too, and would like a warm meal, as much as the lady who just had a baby or the woman with toe surgery.

I NEED TO BE APPLAUDED give me CREDIT for being a SURVIVOR AND A THRIVER. TO KNOW that there are women out there who have never had more than a broken acrylic nail and an unreliable housekeeper, is infuriating sometimes, especially when it’s implied they must be better than me or I wouldn't be sick all the time and unorganized and uninvolved. I know we don't know what people's lives are like behind closed doors, but I would love, have prayed, to JUST BE SHALLOW FOR A DAY and take every STEP, BREATH AND ACTIVITY FOR GRANTED without deciding WHICH few things I could do today that will make a difference over the next 30 years (it is almost always be a good mom and wife).

I NEED TO BE RESPECTED I am intelligent, I am attractive, I was once beautiful.... It is depressing to swell into a stranger because of meds and to have no clothes that fit attractively. I'm too tired to shop for them, and if I did shop for new clothes, I wouldn't have energy to wear them anywhere anyway. I CAN DO THINGS, I just can't prove it very often. I AM SOMEBODY not a disease, but the disease overshadows my chance TO BE MYSELF.

I NEED TO FEEL NORMAL Sometimes it feels like a BOLT OF REALITY HITS ME, as if I JUST REALIZED I am not a healthy person for the very first time. It doesn't seem real or possible for a minute, almost shocking. I can't do everything, but sometimes it would be fun to just play with no worries. HELP ME ESCAPE for a few hours to a play or comedy club, somewhere different where no one knows and I can forget.

I NEED MY DIGNITY It’s important for me, with so little control over anything else in my life, to at least have my dignity. Please DON'T SPECULATE ABOUT ME with other family members or friends and compare notes about my progress or lack of progress or determination or mindset, or your opinion of what I could, should or ought to be doing differently. It is easy to be smug when you aren't wearing lead ankle weights each day and trying to walk through neck deep water, this is what it really feels like. Everything is ten times harder for me than it is for you.

I NEED TO FEEL ACCEPTED AND INCLUDED not like a project to be SCRUTINIZED for worthiness and validity. I’m not going to doctor after doctor and struggling to survive for ATTENTION. Believe me, if I wanted attention, I’m bright and capable enough to get it in other ways. I’d rather be noticed for my good qualities and accomplishments. Even if I were getting attention, which I’m not, it certainly isn’t worth all this seclusion and suffering. REALLY who WANTS to have medical tests run and spend travel money on medication?

Not every day is like this, there are good days, and that is what makes the bad days even more depressing sometimes, because you realize what you are missing.

DON’T TALK, JUST DO. Actions speak louder than words. You have the freedom to buy a plane ticket and go anywhere in the world and enjoy it. You can take a job, or join a club, or garden or take a hike or run in to a new shop or.............anything you decide to do on a whim. I have to think and plan and strategize. I am afraid to make plans because I really don't know if I will be able to follow through on them. Even planning takes energy, which may not leave enough energy for the actual doing. YOU PLAN SOMETHING and pull me along, with no responsibilities and NO GUILT if I can only do half of the plan...at least we will have done something.

Lupey-itis

2011-09-03T11:01:00.000-04:00

Lupey-itis

by Kay Draper

Lupus, lupus, what a fright is --
What a mess my vascul-it-is.
How I fear the tendon-itis.
Hurts to breathe -- what now, pleuritis?

Sore mouth corners? That’s cheilitis;
In the mouth’s more stomatitis,
dry eyes with conjunctivitis,
heart could get –carditis.

All us Lupies got arthritis;
Lucky Lupies miss nephritis.
Nerves have neuropathy or neuritis.
You and me both get sinusitis.

Though my body not quite right is,
And Lupey’s burden never light is,
Living life with all my might is --
Forging onward worth the fight is!

Dear Lupus 8/28/2011 My God is Bigger!

2011-08-28T23:44:00.000-04:00

Sometimes I have to talk to lupus and let it know I won't stand for its nonsense any longer!

Dear Lupus,

Every mountain that you try to place in my path I will go over it, around it and through it! Lupus you are no match for the God I serve I don't even have to fight you anymore because the battle is already won!

Lupus you don't have anything on the God I serve! Let me introduce you to the one who will fight my battle from now on. He knows you already and is ready to take you down for me.*stepping out of the way* Go on Lord do ya thing I hand it over to you!

Lupus what you need to realize is that my God is bigger than you will ever be! So I am laying you right at the throne for Him to deal with you expeditiously. Be Afraid, Be Very Afraid.

With Conviction & Power,
Me!

Dear Lupus 8/27/11 2:01 Wake up Call

2011-08-27T02:16:00.001-04:00

What The french toast...Really Lupus you wake me up out of my sleep for pain Holy S.ugar H.oney & I.ced T.ea! You son of a biscuit eating bulldog.....you little cootie queen lint licker...You Kumquat....You Hoboken...MICKEY FICKY...YOU MAKE ME SICK STINKY MCSTINK FACE!

You are a feather plucking cheater....Eat Spatula and die spiddle stick...I'm going to pineapple slap your ascot...So bring it on dookie head... Poo Poo face...

I told you you are coming too close to me.. but did you listen... no....you never listen to me....no no no no no.. I mean who does this wakes a person up out of sweet sleep to hit them with a stick of pain...You know what? You make my head numb.....I can't even ugh....

Like a good neighbor a can of whoop ass is here!

****SLAP****

KEEP YOUR HANDS OFF MAMA & KEEP YOUR HANDS OFF MY LIFE!

I AM A SURVIVOR AND I APPROVE THIS MESSAGE!

Dear Lupus 8/24/2011 Tap Out or Tap In

2011-08-24T12:09:00.001-04:00

Dear Lupus,
I was just thinking I wouldn't change having you in my life for the world. You have opened so many opportunities for me to meet & connect with people I would have never met normally. You have also created a stronger me that understands I can always do more even when I feel less. I DON'T like you lupus, I ACTUALLY HATE AND DESPISE YOU, but since you have visited me, I might as well see the positives and not allow your determined negative attitude to rule my life. I can either Tap Out or Tap In.....

I decided not to Tap Out to the wrestling match I constantly play with you lupus. You try and twist me and shake me and flip me and slam me to the ground. But, you never pin me. As a matter fo fact you are really no match for me..... I am never tapping that mat in surrender to your grips on me. I choose to tap into my strength instead of the fear and pain you try to impose on me. When I Tap In I am able to do anything. Your power is rendered useless and I move on with my life and remove myself from the wrestling ring. You begin to tap out on that mat and I am vindicated with that fight.

You know there came a point in my fight with you lupus, where I either allowed you to to destroy me or used you to make me stronger. I chose to use you and abuse you to grow stronger than you could ever be in my life. So I am TAPPING INTO MY STRENGTH AND TAPPING OUT YOUR POWER OVER ME!

Yeah I know that you wish you could get at me, but the reality is I will never allow you to do that. So with that lupus NOW YOU KNOW! I am not standing for your nonsense any longer. This wrestling match is done and I won! Tap out Lupus, there ya go! You knew all along you couldn't get me so act like you know from now on.

I am the winner in ths fight you might as well stay out the ring because the next time I am going to slam you so hard to the mat that you won't know what hit you.

Now that you know act accordingly and move on!

In hatred of you,
Me!

Dear Lupus 8/23/2011 What you looking at SUCKA

2011-08-23T13:21:00.000-04:00

Dear Lupus,

I am contacting you today to let you know that your tricks on me the past couple of days have not worked. You tried to trick me into believing that my body was riddled with pain and that I couldn't do the simplest things. Well once again your hateful tricks did not work on me. I was still able to move and go about my day as normal. I heard you whisper in my ear that I could not do it. I heard you tell another person the same. You tried to bring me down and it didn't work. So like the kids say Na Na Na boo boo you can't get me. So step back what you are spewing is so wack I don't have time for it. Go on get to steppin'... What you looking at SUCKA!

Walk a day

2011-05-28T12:06:00.003-04:00

Many look at me and say wow you look great for having Lupus. Like I should come out looking tore up and ragged. They say this bc they only see the outer shell of me which is the me I want people to see. But evey time you see me you don't have to say wow you look great. I mean I know this already, not in a conceited way but in a strong confidence because I work daily to present that.

What you don't know are the steps I have to take to get there. If you walk a day with me you will see the struggle day to day. Inside my body is battling itself for rights to my organs. Each day my body is struggling to fight off foreigners that try to overtake my land. Each day my body is in the fight for its life. Daily I walk a walk that is a fine line of healthy and sickly. I open my eyes daily praying Lord move me with your mighty hand because I can't move myself. Daily I work to maintain an outer beauty so that you won't see the inner ugliness of me.

That's my walk day to day. Sometimes it is painful other times it's painfree. I really love that someone can look at me and not see what lupus tries to render dead. I appreciate when someone tells me I look good I just want them to not follow up with eventhough you are sick. I don't want to be reminded of that because my walk day to day tells me. So when you see me a simple hi you look fabulous will do. No pity no reminders. I will return that compliment with so do you!

Walk in the power that is you!

Racquel
"I have lupus, lupus does NOT have ME!"

Dear Lupus 5/15/11

2011-05-15T12:50:00.000-04:00

Dear Lupus,

Every mountain that you TRY to place in my path I will go over it, around it and through it! Lupus you are no match for the God I serve I don't even have to fight you anymore because the battle is already won!

I know sometimes you think you got me but I am here today to let you know that you don't have any part of me. I don't recognize you as a force in my life, never did never will. As a matter of fact I refuse to allow you to disrupt my day today and everyday thereafter. You try so hard to hurt me and others that are acquainted with you it is sickening. You get your laughs off of other people's pain and that is wrong and you will be punished for that.

Today I just wanted to drop you a line to say you can't have me. I am already taken and you are crowding my space. So I don't want to talk to you anymore today I just wanted to let you know that my God is bigger than any pain you try, notice I keep saying try, to place on me.

You can't beat me lupus, you can't even take me down so take off your gloves this fight is done!

Not Yours,
Racquel
"I have lupus, lupus does NOT have ME!"

Dear Lupus 5/10/11

2011-05-10T19:54:00.001-04:00

Dear Lupus,

I just want to write you to say thank you. I know I know you are surprised aren't you? I know you thought I was writing you to cuss you and fuss and pick a fight but I am really not writing for that today.

I am writing to say thank you! Thank You for coming into my life. I mean sometimes you are a pain and you get on my nerves but I have to really look past that sometimes. I really don't appreciate or tell you the good that you may give me. Yeah I know most who will read this letter will read it and say this woman is crazy. Yeah sometimes I think I am a little crazy to want to write and thank you. My friend called it Lupus Bipolar... LOL I think I may suffer from that.

So let me start....Thank You Lupus.... Thank You for making me realize that nothing can control me..... Thank You Lupus ..... Thank You for allowing me to see that the no matter how weak I feel I am still strong..... Thank You Lupus.... Thank You for allowing my story to help someone else...Thank You Lupus.... Thank You for showing me that no matter what is thrown at me I am a WARRIOR.... Thank You Lupus... Thank You for messing with me just enough to let me know that living on the edge can actually be a testing but rewarding experience.... Thank You Lupus....Thank You for putting me in touch with so many people that are WARRIORS against a good cause.... Thank You Lupus.... Thank You for showing me all the good people around me that care and are joining in the fight to whip your sorry little ahhhhhhh I was going to go there but I stopped myself..... Thank You Lupus!

I really am happy that we have become so well acquainted it has brought me to a realization that you really aren't worth all the trouble you cause. Our acquaintance has been bitter sweet and this letter is to say Thank You. I know you thought you were going to wreak havoc in my life and countless others but we can't allow you to do that. Instead I think we will work together to forge WAR against you. In the end you will be thanking us!

Not Yours Ever,
Racquel

I have lupus, lupus does NOT have ME!

Dear Lupus 4/23/11

2011-04-23T13:03:00.002-04:00

Dear Lupus

Your ass is getting on my last nerve. For real you make my head numb. Like a good neighbor state farm is there....**With a hammer to beat the shit out of lupus*

You suck! I can't stand your dumb ass!

When I met you I wanted to choke the shit out of you. You made me sick to my stomach literally. I had to have 4 freakin liters of fluid drained from my abdomen b/c you were trying to attack my intestines. Guess what Bitch I beat that! Then you tried to take me out with pleurisy and double pnuemonia. Guess what trick, I beat that too! No matter what you throw at me you can't get me down! Your nasty little tricks to come on slowly and then slap the shit out of me, they don't work. All I do is put on my boxing gloves and get ready to beat your simple ass into the ground.

I just wanted to drop you this little note to remind you that you are the weakest link..... Be gone.

I'M A WARRIOR LUPUS YOU AIN'T GOT NOTHING ON ME!!!!

In Hatred,
Racquel

Get Ready Get Set Go!

2011-04-17T14:20:00.000-04:00

I ask if you have someone in your life that has lupus be aware that although they may look good daily their body is not always good. Be considerate if they tell you they are not feeling well. Your not feeling well is different from that of a lupus survivor. This disease has been overlooked and overshadowed long enough. Spread the Lupus Awareness your way, Just Spread it TODAY!

Every 30 minutes ... someone is diagnosed with lupus.
And most of them will have suffered 4 or more years before receiving the diagnosis.

Awareness of lupus and its symptoms can help people seek appropriate medical evaluation, and ask the question Could I Have Lupus?, so they can receive a timely diagnosis.

You can help minimize suffering by joining the effort to raise awareness and understanding of this devastating disease.

Get Ready Get Set Go! We are getting in the starting blocks to increase Lupus Awareness.

It's time to raise the roof on Lupus Awareness.

Get ready for Lupus Awareness month May 2011

Dear Lupus 4/15/2011

2011-04-15T23:10:00.000-04:00

Dear Lupus
I just want to let you know that I can still type even though you are trying to take control of my hands. Even through the pain I can still do what I need to do and not even be bothered by you. You are a worthless piece of crap and I despise you. They say you are not supposed to hate anything or anyone, but I HATE YOU! Your existence in my life and the life of many of my friends is null and void right now. I can no longer host your kind in my life. I must release you immediately. What is funny is that you think you have me but you don't. You think I will surrender to you but you should know already I am a fighter. You believe that you can make me do anything and yield to the pain you cause me..... Well I'm hear today to let you know it won't happen. You tried I hate your effort now go climb under a rock. It's time you and I part ways!

In Hatred,
Racquel The Lupus WARRIOR

LETTER TO FAMILY AND FRIENDS (INVISIBLE DISEASES)

2011-04-11T17:13:00.000-04:00

I share this letter every year sometimes twice a year. Family and friends please take note to what is being said in the letter it is so true and we need you to understand.

LETTER TO FAMILY AND FRIENDS

(INVISIBLE DISEASES)

Unknown Author

I’m not trying to speak for everyone, but from my own perspective I can tell you what I NEED from my family and friends and so seldom get.

I NEED TO FEEL PROTECTED even though I can't be safe on the inside at least I can feel if ANYONE or ANYBODY wants to "get at me" then they are going to have to "GO THROUGH" my protector.

I NEED TO FEEL CHERISHED as if my family or friends feel they are blessed for each day we have together, LIFE IS SO FRAGILE.

I NEED TO FEEL FORGIVEN for NOT being a full person (in the world's view). You may not hold a grudge, I know it’s hard on you to pick up slack, but I don't FEEL FORGIVEN, I feel guilty.

I NEED TO FEEL LIKE PART OF A TEAM working toward a common goal (our life together) and it is OK if my main contribution is SPIRIT.

Not every day is like this, there are good days, and that is what makes the bad days even more depressing sometimes, because you realize what you are missing.

Dear Lupus 4/7/11

2011-04-07T01:13:00.001-04:00

Dear Lupus,

You little coward. You wait until I must rest to try and talk to me. You use this foul languge that makes my skin crawl then you try and take me out with punches to my mind and body. You are the biggest coward I have ever come in contact with. Not only do you attempt to physically harm me you try to strip me of good sleep. You play with my mind and try to trick it to belive it is not sleepy. You make me sick!

But I have something for you....a swift kick in the ass. I will not take your shit any longer. I am officially putting you on notice that your time in my body has expired. Your lease is up you are ordered to vacate the premises IMMEDIATELY. Don't even bother asking to stay your ass is EVICTED!

I hate you and all that you are. I won't entertain your nonsense any longer....

Fuck you and the corrupted cell you road in on. Peace out Biatch!

In anger,
Lupus Warrior

Dear Lupus 3/13/2011

2011-03-13T22:35:00.000-04:00

Dear Lupus,

You know what I am tired of your crap. How in the hell you are going to try and take control of my middle finger on my right hand. The finger I use to cuss you to the death you deserve. What type of stupid crap is that? So I had to walk around all night at a party not being able to extend my finger because you want to try to take my cursing ability to you away. Damn that is just messed up. I am walking around talking and dancing with a closed fist. That's ok though guess what I still had a good time and although I could not curse you with that finger I had a nice fist to punch you dead in your chest.

***BAM*** Did you feel that? I think you did! I hope it took your breath away.

How dare you try to take my fun? It didn't work! Even the tiredness you attempted to put on me didn't stop me from having a good time. Since I have two hands I was able to curse you with the other. You make me so sick I hate everything about you! The next time you decide to try and attack me I am going to make sure your ass does not get back up to harm another. You are not bad and I have something so much bigger than you are in my corner that you should be cowering in fear. It's ok though keep trying me because this is the day that I am ready for you with a nice can of Whoop Ass, EXTRA STRENGTH!

C'mon Lupus I'm ready to take you down for the count.

****DING DING****

LET THE FIGHT BEGIN!

LET'S GET READY TO RUMBLE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Lupus Foundation of America Applauds FDA's Decision to Approve Benlysta®

2011-03-09T19:48:00.000-05:00

Lupus Foundation of America Applauds FDA's Decision to Approve Benlysta®

First new treatment for lupus in more than 52 years

Watch a message from Sandra C. Raymond, LFA President and CEO.

Watch Gary S. Gilkeson, MD, Chair of LFA Medical-Scientific Advisory Council, and Joan T. Merril, MD, LFA Medical Director, speak about what a new treatment may mean for the future of lupus patients.

Watch Kelly Jean Drury speak about what a new treatment means to her as someone with lupus.

(Washington, DC, March 9, 2011) Today, the U.S. Food and Drug Administration (FDA) approved the drug, BENLYSTA®, for the treatment of lupus, an autoimmune disease.

Sandra C. Raymond, President and Chief Executive Officer of the Lupus Foundation of America (LFA), has issued the following statement regarding the FDA’s decision:

“This is a historic day for the millions of people with lupus and their families around the world who have waited more than 52 years for a treatment breakthrough for lupus. We at the LFA applaud the FDA’s decision to approve BENLYSTA®. BENLYSTA is the first drug ever to be specifically developed to treat lupus, and is a significant first step toward reaching our goal of developing an arsenal of new, safe, effective, and tolerable treatments. Today marks the beginning of a new era of improved diagnosis, prevention, and treatment for the disease.

“The LFA wishes to thank the physicians, researchers, industry leaders, and the many study volunteers who made this day possible. We also extend a special thank you to BENLYSTA®’s developers, the staff of Human Genome Sciences and GlaxoSmithKline, who have long been committed to the research and development process. These efforts will go a long way in elevating the profile of this disease that remains a significant national public health problem.

“There are a number of pioneering biotechnology and pharmaceutical companies, involved in the research and development of new treatments for lupus, and our hope is that today’s decision will further stimulate additional companies to invest in new therapies for lupus. To build on this momentum and encourage the development of new treatments, the LFA has launched new initiatives that help to strengthen clinical trials. These programs include the launch of a Web-based program designed to train clinical investigators on the instruments used in trials. As well, the LFA recently implemented the LFA Lupus Research Registry which enables individuals to be notified about new clinical trials in their geographic area. The Registry is part of the LFA’s Center for Clinical Trials Education.

“The LFA also is partnering with key stakeholders from industry, government, and the scientific community to evaluate data from previous lupus clinical trials with the goal to improve the design of future studies."

Exercise, Fatigue and Photosensitivity

2011-03-06T17:45:00.000-05:00

Exercise, Fatigue and Photosensitivity

Just like everyone else, people with lupus need to exercise regularly or engage in some kind of movement, and most people with lupus can take part in some form of activity. All exercise plans should be discussed with your physician or exercise specialist in order to maximize results and minimize possible harm.

Further Viewing . . .If lupus has you on the sidelines rather than in the middle of the action, this new low-impact exercise program, designed specifically for people with lupus, may be “just right” for you. Guided by a licensed A.C.E. instructor who also has lupus, The Right Moves for Lupus Fitness Program DVDoffers a gentle fitness routine that you can practice in the comfort of your own home.

Activities such as walking, swimming, bicycling, low-impact aerobics, certain types of yoga, Pilates, stretching, or using an elliptical exercise machine will strengthen your bones and tone your muscles without aggravating inflamed joints, while also helping to lower the risk for developing osteoporosis. It’s also a good idea to vary the exercises, so that different muscle groups all get a regular workout.

If you are experiencing swollen joints or muscle pain, you should avoid or at least limit activities that may be demanding on joints and muscles, such as jogging, weightlifting, or high-impact aerobics.

If you find that you tire easily when you exercise, you should pace yourself. The most important thing to remember is to not give up exercising, as muscles that are not used will quickly become weak.

Regular exercise and even simple low-impact movement will:

reduce or minimize stress
help to keep your heart healthy
improve muscle stiffness
increase muscle strength
help prevent osteoporosis
increase your range of motion

Fatigue

As many as 80 percent of people with lupus experience fatigue. For some people with lupus, fatigue is their main symptom and can be debilitating, even to the point of forcing them to stop working. It is unclear why extreme fatigue occurs in so many people with lupus, but disease activity, pain, age, and medicines being taken, as well as poor physical and mental health and lack of good social support, all appear to play a role.

In addition, poor coping strategies, feelings of helplessness, depression or anxiety, smoking, and lack of exercise have all been found to be related to lupus fatigue. Before the physician can conclude that fatigue is related to these factors, any "treatable" causes of fatigue (for example, anemia, kidney failure, or hypothyroidism) need to be ruled out.

Physicians experienced with lupus recognize the harmful and even destructive effects that extreme fatigue can have, and research is underway to learn more about how to treat the problem. Getting regular exercise and being part of a support group have been found to help. By making some adjustments, people with lupus-related fatigue will be less likely to push themselves to exhaustion.

Tips to Help You Manage Fatigue

Alternate activities with periods of rest throughout the day.
Establish good sleep patterns.
Plan ahead; for example, shop for gifts throughout the year.
Prepare meals in advance.
Eat a healthy diet and exercise regularly.
Stop smoking if you smoke.

Rest

Getting the proper amount of rest is extremely important for people with lupus, especially during periods of disease activity (flares). Damaged and inflamed muscles and joints require rest to heal. Rest is also vital in reducing fatigue. Although everyone has his or her own particular sleep requirements, at least seven hours of sleep a night is recommended for people with lupus. It is also important to be aware that too much sleep isn’t healthy, either. Spending all day in bed may make muscles weaker, which can contribute to feelings of fatigue. Napping during the day may be helpful and even necessary when lupus activity is causing a flare. Try to allow extra time in your daily schedule for rest.

Sensitivity to Light

Two-thirds of people with lupus have increased sensitivity to ultraviolet rays, either from sunlight or from artificial inside light, such as fluorescent light, or both. Whether or not you are photosensitive you should limit your exposure to ultraviolet rays, especially outdoors, as excessive exposure to the sun can cause lupus to flare.

Everyone with lupus who is going to be outside for more than a few minutes should use a sunscreen with a sun protection factor (SPF) of at least 30 that blocks both ultraviolet A (UVA) and ultraviolet B (UVB) rays. Sunscreen should be applied thoroughly, especially to your neck, temples, and ears -- areas that are often affected by lupus skin problems.

Wearing proper clothing helps, too, such as broad-brimmed hats, long-sleeved shirts, and long pants. If you spend a large amount of time outdoors, you should wear clothing made of sun-protective fabric. Sunbrellas, which are umbrellas made with sun-protective fabric, are also available.

Since UVB rays are most intense between the hours of 10 a.m. and 4 p.m., you should try to plan your outdoor activities for early in the morning, late in the afternoon, or in the evening. Also be aware that UV rays are stronger at higher altitudes and when they are reflected by snow or water.

Ultraviolet rays are also given off by indoor fluorescent lighting commonly found in offices and stores. Light shields that cover fluorescent bulbs can be ordered from several different manufacturers. If you are affected by light sensitivity, look for light shields that have nanometer readings of 380 to 400. This ensures complete filtering of UVB and UVC (especially damaging to exposed skin cells), and almost all UVA. If you are extremely sensitive to light, you may want to consider wearing a broad-brimmed hat when visiting brightly lit stores or other public places.

Related Information

Lupus Foundation of America

Staying Active Despite Lupus
May 2010 15 Questions with Sean Hanrahan

Dr. Barbara Segal talks about what is abnormal fatigue, and what can be done about itApril 2010 LFA blog entry

Into the Light: How to Deal with Sun SensitivitySummer 2008 issue of Lupus Now magazine

Sun Safety MythsSummer 2005 issue of Lupus Now magazine

UV Light & LupusJuly 2008 webchat transcript with Dr. Victoria Werth

New Year's Resolutions & Lupus: What Are The Best Ways To Stay Healthy & ExerciseJanuary 2008 webchat transcript with Dr. Tammy Utset

Walk a Day in a Lupus Survivor's Shoes Part I

2011-02-06T00:39:00.003-05:00

Walk a Day in a Lupus Survivor's Shoes
Part I

You can never know the way a person is feeling until you have really walked in their shoes. A Lupus Survivor walks in so many different ways to hide the rugged shoes they are walking in day to day.

A Lupus Survivor wakes early in the am after sleeping only 2 hours the night before. He or she is groggy and tired from fighting off the aches and pains of the night. His or her head is aching due to lack of sleep and they are lying in bed wondering what is the best way to get out of bed with the least pain. After several attempts the lupus survivor finally sits up only to be dizzy from rising too from the bed too quickly. They sit at the edge of their bed and attempt to feel the ground. Once the ground is felt and the dizziness wears off the lupus survivor attempts to stand. Only to be knocked back down b/c he/she did not prepare for the pains in their knees. After shaking off that pain the lupus survivor finally stands from the bed and begins to place one foot in front of the other to walk to the bathroom. As the lupus survivor takes what most see as a a long walk to the bathroom they bend in pain just to sit on the toilet. If they are men they painfully stand hoping the urine flow comes quickly. The lupus survivor then goes to wash his/her hands. They try to turn the knobs but it is difficult. So they struggle to do what is usually a simple task and finally get the water on. The lupus survivor washes their hands & decides that since the water is on let's not wait to brush the teeth. As the lupus survivor goes to grasp his/her toothbrush, due to the pain in their hands they drop the toothbrush in the sink. Struggling to get the toothbrush out the sink they finally retrieve it and go to squeeze the toothpaste onto the brush. Carefully placing their hands around the tube to gather enough energy and strength to squeeze it. Once the toothpaste is placed on the brush the lupus survivor works hard to lift their arms to move in a circular motion to brush their teeth for the longest two minutes of their lives.

Just think ...........

the day has only just begun! But, the lupus survivor pushes on "By Any Means Necessary!"

Stay tuned. The lupus survivor struggle continues....

P.M.S 2011

2011-02-02T00:45:00.000-05:00

Online Ticketing for P.M.S 2011 powered by Eventbrite

Lupus Foundation of America Expands Services

2011-01-29T02:26:00.000-05:00

Lupus Foundation of America Expands Services with Launch of New Education Series

January 28, 2011

Program Provides Individuals the Opportunity to Learn from Leading Lupus Experts
(Washington, DC) The Lupus Foundation of America (LFA) has launched a new nationwide education series, Lupus: Learn from the Experts,™ designed to provide people with lupus essential information about living with lupus from some of the world’s leading lupus experts. The program is a series of teleconferences hosted by a lupus expert, and will cover a wide variety of topics important to people with lupus, including disability, kidney involvement, and clinical trials.
“This program will help us meet the growing demand for information and services,” said Sandra C. Raymond, President and CEO of the Lupus Foundation of America. “It is a unique opportunity for individuals to learn from some of the world’s leading experts from the comfort of their home, and it helps reach those individuals who are disabled or ill.”
Lupus: Learn from the Experts
2011 Dates and Topics
Clinical Trials and Lupus
Saturday, February 19, 2011
Presenter: Joan T. Merrill, M.D.
Kidneys and Lupus
Thursday, February 24, 2011
Presenter: Ellen M. Ginzler, M.D., M.P.H.
Central Nervous System (CNS) and Lupus
Saturday, June 11, 2011
Presenter: Betty Diamond, M.D.
Social Security and Disability and Lupus
Saturday, September 17, 2011
Presenter: Sheri R. Abrams, Attorney at Law
Parents Caring for Children with Lupus
Saturday, November 19, 2011
Presenter: Emily von Scheven, M.D.
This program is provided at no cost to participants. To register or for more information, visit www.lupus.org/learn.

Dear Lupus 1/28/2011

2011-01-28T08:50:00.000-05:00

Dear Lupus,

So you thought you had me didn't you? Well think again baby! You only created a bump in the road. I took my powerhouse body, mind & soul and rolled right over you and left tread marks on your back.

How did it feel to be shoved into the ground and left to feel like road kill? You see that is what you attempted to do to me and what you attempt to do to many of my friends but you will never succeed!

You can throw whatever you want at us. Swollen joints and organs, Puhlease..... that is just a hiccup. Unable to walk due to feet larger than boulders, Not to worry that is why they made canes, wheelchairs & shoes that slip on. Hmph you even try and hit us with massive headaches and migranes, toothaches and even hair follicle pain, psst let me holla at you real quick, come a little closer.....closer.....nah even closer. *Screaming in your ears* THAT DIDN'T WORK EITHER. Yeah you may stop me for a minute for a moment but honestly it doesn't last. Your power that you believe you possess over me is not there at all and it is nothing compared to the power that God exhibits in my life from second to second!

So you can take all of your wicked ways and hit the bricks. Your kind is surely not wanted in these parts. I bid you farewell. I do not expect you to show up on my doorstep for a good while. If you do Your beat down will be worse. You just created a stronger more powerful me! I can't thank you enough for that. My energy is in tact, my will is stronger than ever and my spirit is never disturbed or disrupted. Welcome to the NEW ME baby! You remember the movie Kill Bill, well I am on a hunt to KILL LUPUS!

This is the KILL LUPUS REVOLUTION

and believe me

THE REVOLUTION WILL BE TELEVISED!

Never Yours,

Racquel

"This is War!"

Dear Lupus 1/22/11 Chick Interrupted!

2011-01-22T11:05:00.001-05:00

Dear Lupus,

You coward did you think I would allow you steal my breath and render me helpless? How dare you again try to invade my body? I have had enough of your games and I will never allow you to access my body without a fight.

You think you are so slick. You try to attack me and take me down not realizing that I had my guard up and was ready for you. You are a spineless coward trying to attack me when you thought I was at my weakest. You tried to take over my body and just walk away. It doesn't work like that. Why wouldn't you show me your face? Oh that's right you are so hideous that a face would be too humanistic for you.

Countless times you have tried to take me out and suck me into your sick world. Well I refuse to be a part of it and I want you to know that no matter how hard you try, no matter what you throw at me I will not give in to you. I will not allow you to ruin what God has made in His image. I am not your ordinary gal I have the best backer there is and God will not allow you to ever take control of me and my body.

It is a shame you are so lonely and always try to harm others. You are trying to wreak havoc in too many people's lives. I hope you burn in hell for the problems you have caused. You punk! You thought you had me? There is no way I would let you get me down

Stay out of my life! I despise you and your beat down will be 20 times worse if you show your nasty ass around here again!

Lupus Advocacy Day 2011

2011-01-15T07:54:00.001-05:00

BE A VOICE FOR LUPUS TODAY!

Lupus Foundation of America Achieves International Consensus on Definition of a Lupus Flare

2011-01-12T22:48:00.000-05:00

Lupus Foundation of America Achieves International Consensus on Definition of a Lupus Flare

January 10, 2011

LFA-FLARE Definition Will Make Significant Contribution to Lupus Clinical Research
(Washington, DC) The Lupus Foundation of America (LFA) spearheaded a four-year worldwide initiative with more than 120 lupus experts from 11 countries, the pharmaceutical and biotechnology industries, and federal agencies, which resulted in the first-ever global definition of a lupus flare. The development ofLupus Foundation of America Flare Definition (LFA-Flare) helps to overcome long-standing barriers to the development of new, safe, and more tolerable treatments for lupus.
For the past 15 years, many trials of new investigational medicines for lupus have failed to show significant benefits for patients. A consistent and meaningful definition for a lupus flare is critical to evaluating the effectiveness of treatment over time. The new definition will enable more precise outcome measures for future studies, such as the number of flares or the time between flares. This will have a positive impact on the quality and scientific basis of clinical trials, which are required by the U.S. Food and Drug Administration (FDA) to demonstrate the effectiveness of any new therapy before it can be approved for general use in patients.
The consensus definition is: A flare is a measurable increase in disease activity in one or more organ systems involving new or worse clinical signs and symptoms and/or lab measurements. It must be considered clinically significant by the assessor and usually there would be at least consideration of a change or an increase in treatment.“This definition addresses several controversial issues about how we look at flares of disease, which may have been interfering with the accuracy of how we evaluate new treatments,” said Joan T. Merrill, M.D., head of the Clinical Pharmacology Research Program, Oklahoma Medical Research Foundation, and LFA Medical Director.
A paper describing the definition and the consensus process is now available online and will be published in the March or April issue of the medical journal LUPUS. LFA-FLARE has high face validity and now is ready for validation in clinical studies. The Systemic Lupus International Collaborating Clinics (SLICC), a leading international consortium of lupus doctors, is evaluating this definition as a basis for modified outcome measurements of flare to provide an improved scientific basis for clinical trials.

The LFA thanks the lupus researchers from universities and industry who contributed their expertise to this project. A worldwide effort such as this brings hope to millions of people around the world who are living with lupus that new medicines are on the horizon.
The LFA’s National Research Program, Bringing Down the Barriers®, is dedicated to addressing research issues that have for decades obstructed basic biomedical, clinical, epidemiological, behavioral, and translational lupus research. The LFA’s approach to research is unique because it directs its funding to areas of research where gaps exist in the understanding of lupus, and to promising areas of study in which other public and private organizations have not focused their efforts. Using a three-pronged strategy, the LFA and its national network are committed to advancing the science and medicine of lupus by: directly funding research to close the gaps in lupus research; advocating for expanded investment in research from public and private sources; leading special initiatives; and forging collaborative efforts among stakeholders to address critical issues to advancing the science and medicine of lupus. For more information about the LFA’s National Research Program, visitwww.lupus.org/research.

Lupus Fog

2011-01-10T21:52:00.000-05:00

What is Lupus fog?

An estimated 70-90 % of SLE Lupus patients will experience the infamous lupus brain fog. This is the most common form of central nervous system involvement in SLE and can be mild to severe, and vary from person to person

Lupus fog (technically known as cognitive dysfunction) describes the confusion, fatigue, memory loss, and difficulty in expressing their thoughts lupus patients experience.

How does lupus fog manifest?

Lupus fog manifests as difficulty in concentrating/ focusing, trouble remembering; especially recent events and an inability to process "new" information and learn it. One has difficulty in completing day-to-day & familiar tasks like remembering dates/ important appointments,

Speak to your Rheumatologist about it. He will help you with the coping techniques for lupus fog. He can adjust the doses of drugs if you lupus is active. He can start a few medicines to ease your fog. You may require the help of a counselor/ cognitive therapist to take care of the fog.

Here are a few tips to help you

1) Keep a daily appointment calendar & go through it twice a day.

2) Set reminders for important appointments/ events in your mobile/ pda.

3) Whenever you listen to any new information, repeat it & try to remember. Jot it down if you wish to.

4) Take adequate rest & sleep.

5) Lupus fog is common during a flare & stress. Consult you Rheumatologist for the same.

Entertaining When You Have Lupus? Yes, It Is Possible!

2011-01-09T18:14:00.000-05:00

From the Archives: Fall 2004 Issue of Lupus Now

Entertaining When You Have Lupus? Yes, It Is Possible!
By Kristine Napier, M.P.H., R.D.

It was 15 minutes before 10 guests would arrive for dinner, and I couldn’t cram my dressy shoes onto my swollen, painful feet. No surprise, given that I had raced around since sunrise, scrubbing the bathrooms, cooking the entire meal (from scratch, of course) and cleaning a colossal mess in the kitchen. That physical marathon was preceded by a day of grocery shopping and housecleaning. My only thought was crawling into bed. But I couldn’t cancel the party at the eleventh hour—so I applied another layer of blush to brighten my sallow cheeks, slipped my aching feet into moccasins, and eased myself down the stairs to answer the beckoning doorbell.

The party was a social success, but a medical disaster. I had failed to plan ahead, leaving the bulk of the work for the forty-eight hours before the event. I hadn’t practiced my “rules of optimal health”: pacing myself, resting frequently, and listening to my body. Late that night, as I soaked in a hot bath, I was convinced there must still be a way I could entertain—something I absolutely love to do! Our home had always been the gathering place for friends, and I didn’t want to give up such wonderful moments and memories.

Six Strategies for Planning and Enjoying Your Own Party
That fateful party taught me how to enjoy future ones—with six simple strategies:

1. Time your party to your health. Saturday evenings are preferable to Fridays, if you work outside the home—this choice affords you extra sleep on the day of the party, as well as the next morning. Sunday brunch is also an optimal entertaining time: early in the day when your energy is at its peak, but with time to recover in the evening. If you take a weekly medication (such as methotrexate), you may find that you are more fatigued a day or two later, so plan your event around that predictable fatigue.

2. Revise your standards. Prior to my lupus diagnosis (and a dose of reality!) I was an old-fashioned hostess. I used only china dishes and silver flatware. I couldn’t imagine having company without washing the light fixtures, bleaching the garage floor (what was I thinking?), dusting the blinds and scrubbing the kitchen just hours before my guests arrived. Today, my preparations are drastically relaxed! Here’s what I do now:

Use disposable plates and cups.
Clean the house a couple of days ahead of the event—and then ignore the few pieces of lint that might accumulate.
A sparkling clean garage? No way—not even when my guests enter the house that way.

3. Keep the menu simple. I plan at least two to three items that I can prepare a week or two in advance and freeze. Sometimes, I purchase prepared foods, serving them on a pretty platter and burying the container deep in the trash. I graciously accept offers from guests to bring appetizers, salad, or dessert.

4. Choose clothing to match your most comfortable shoes. Whether your feet are most pampered in tennis shoes or orthopedic tie shoes, indulge them.

5. Whenever possible, hire a helping hand. Whether you need help cleaning the house before the party, serving during the event or tidying up afterwards, treat yourself to some help. When funds are limited, find ways to barter. Is there a young friend who needs tutoring in reading or another subject in which you are well versed? Maybe a pet nearby that needs sitting? Or a vegetable garden that needs watering when the neighbors are away? Take stock of your abilities and find a way to use them to save your physical energy.

6. If you won’t have help after the party is over, promise yourself you will leave the cleanup for the next day. Before lupus I could never imagine going to bed with dirty dishes in my kitchen—but now I do so with a smile on my face. After I’ve enjoyed an evening with friends and/or family, I know I’ll awaken feeling great. Then I put on some favorite music while I clean the remnants of a wonderful party. Sometimes, I spread the cleanup over a day or even two—which gives me even more moments to relive the party memories!

Energy-Saving Menu for Fall Get-Together

Appetizer: Roasted Red Pepper Dip
This aromatic dip is a great way to wake up a boring vegetable tray. Preparation is incredibly easy if you use jarred roasted red peppers. Serves 6.

1 8-ounce package nonfat cream cheese
3 roasted red peppers (or a small jar, in brine, drained)
1 cup packed fresh basil leaves
1/4 teaspoon salt
1/2 cup chopped green onion

1. Combine cheese, pepper, basil, and salt in food processor or blender. Puree until basil and pepper are in tiny pieces.
2. Remove from processor to a bowl. Stir in green onions.
3. Serve with cauliflower, cucumber and baby carrots or fresh vegetables of your choice.

Per serving: 48 calories, 6 g protein, 6 g carbohydrates, 1 g fiber, 0.13 g fat, 0.02 g saturated fat.

Main Course: Pork and Pear Stew
Everyone will think you’re a gourmet cook when you serve this fabulously rich stew—but no one has to know it took you only minutes to prepare. Don’t worry about the alcohol—it cooks off, but the taste remains to make a richer sauce. You can also serve this on mashed potatoes. Serves 4.

2 teaspoons light olive oil
1 pound pork sirloin cubes (purchased already cut up)
4 carrots, peeled and sliced thinly
salt and pepper to taste
1 1/2 cups pear nectar
4 just-ripe pears, cut into 1-inch cubes
1 tablespoon dried thyme
1/4 cup plus 2 tablespoons dry cooking sherry (or brandy)
1/2 cup nonfat sour cream
1 1/3 cups brown rice, cooked

1. Heat olive oil over medium heat in large nonstick skillet; add pork cubes and carrot slices. Season with salt and pepper; stir-fry 3 to 5 minutes, until pork is browned on all sides.
2. Add pear nectar, pears, thyme and cooking sherry. Simmer (mixture should bubble slightly) for 30 minutes uncovered.
3. Stir in sour cream; simmer for an additional 5 minutes. Serve over cooked brown rice.

Per serving: 430 calories, 29 g protein, 54 g carbohydrate, 8 g fiber, 10 g fat, 210 mg sodium.

Dessert: Fruit Pizza
Leftovers from this sweet and colorful “pizza” are good for several days. Have them for breakfast—a double portion with a glass of nonfat milk starts the day off right! Serves 30.

One 18-ounce package sugar cookie dough (from dairy section of the grocery store)
6 ounces nonfat cream cheese
1/2 cup low-fat lemon yogurt
2 tablespoons powdered sugar
2 cups strawberries, sliced
4 kiwis, sliced
1 can mandarin oranges, drained well and patted dry
2 cups blueberries

1. Spread sugar cookie dough in the shape of a rectangle on 9 x 13-inch cookie sheet. Bake in 350° oven for 10 minutes, or until slightly browned.
2. In a small food processor blend cream cheese, yogurt and powdered sugar.
Spread cream cheese mixture over baked cookie dough.
3. Arrange fruit in an interesting pattern. Chill and serve.

Per serving: 112 calories, 2 g protein, 17 g carbohydrate, 1.5 g fiber, 4.1 g fat, 1 g saturated fat, 110 mg sodium.

Spreading Our Wings HELP SPREAD THE AWARENESS

2011-01-09T14:10:00.002-05:00

SPREAD LUPUS AWARENESS TODAY!

2010: Moving Toward a New Era of Hope and Optimism in Lupus Research, Treatment, and Awareness

2010-12-26T23:23:00.000-05:00

2010: Moving Toward a New Era of Hope and Optimism in Lupus Research, Treatment, and Awareness

December 23, 2010

Lupus Foundation of America Highlights the Year’s Top Ten Achievements

(December 23, 2010) WASHINGTON, DC – Events of 2010 represented the beginning of the long anticipated transition to a new era in which the 1.5 million Americans and the more than five million individuals worldwide living with the autoimmune disease lupus can look forward to an improved quality of life. Potential new treatments for lupus passed several milestones on the road toward approval, public and private investment in lupus research continued to grow, awareness of lupus received a boost from celebrity involvement, and several new LFA initiatives fueled efforts to improve future lupus clinical trials. The Lupus Foundation of America (LFA) has compiled a list of the 2010 Top Ten Achievements in Lupus, available on the LFA website.

One of the most anticipated achievements of 2010 was the vote by a U.S. Food and Drug Administration (FDA) advisory committee to recommend approval of the investigational medicine, Benlysta®, for the treatment of systemic lupus. Top achievements this past year also included continued growth of public and private funding for lupus. For example, the Department of Defense (DoD) Medical Research Program and the Centers for Disease Control and Prevention (CDC) provided nearly $7 million in additional research support. Additional pharmaceutical and biotechnology companies announced positive clinical trial data, initiated studies on new compounds, or acquired new technologies to develop potential treatments for lupus.

A growing list of celebrities helped shine a spotlight on lupus by announcing their support or speaking publicly about the disease. In an article in the September issue of Vanity Fairmagazine, entertainer Lady Gaga listed the LFA as one of her ‘two favorite’ charities. Previously, she announced on CNN’s Larry King Live that she had undergone testing for lupus, greatly swelling public interest in the disease. Musician and philanthropist Julian Lennon and singer James Scott Cook generated thousands of dollars for lupus research through sales of their song, “LUCY.” Long-time LFA supporters Will Smith and Jada Pinkett Smith were on hand for the inaugural LFA Butterfly Gala in New York City to honor their aunt, Karen B. Evans, who serves as the executive director of their family foundation and is the former chair of LFA’s National Board of Directors. Eduardo Xol, a landscape designer for ABC’s Extreme Makeover: Home Edition, served as Chair of LFA’s observance of Lupus Awareness Month held annually in May.

Also in 2010, the LFA launched an online portal to train clinical investigators on instruments used to measure lupus disease activity (LFA POINT™), enhanced its web-based Center for Clinical Trials Education™ to better inform people about lupus clinical trials, and established the Lupus Research Registry™ to allow individuals to indicate their interest in participating in future lupus clinical studies. The LFA also began the Collective Data Analysis Initiative (CDAI), the first project of its kind in lupus to mine and analyze data from previously failed trials of potential new lupus treatments in order to determine the impact of background therapies on trial outcomes and improve future trial design. These initiatives are part of the LFA’s National Research Program: Bringing Down the Barriers™, which seeks to advance the science and medicine of lupus.

These 2010 achievements were the result of combined efforts of many people. Through the ongoing support of the lupus community, other stakeholders and the public, the LFA will continue its efforts in 2011 to find the causes of and cure for lupus while providing support, services and hope to all people affected by lupus – From Care to Cure™.

The Top Ten Achievements in Lupus for 2010 are:

1. FDA Advisory Panel voted 13-2 to recommend approval of Benlysta® as the first new treatment for lupus in more than 52 years, and the first potential FDA-approved treatment ever developed specifically for lupus. The FDA announced that it plans to make a final decision on approval of Benlysta by March 10, 2011.

2. Global pharmaceutical and biotechnology companies moved to late stage treatment trials of investigational medicines for lupus. UCB began a Phase III study of epratuzamab in late 2010 after earlier releasing positive data from a small Phase II study that showed a significant reduction in disease activity among patients with moderate to severe active systemic lupus (SLE) who received epratuzamab. Other companies that have either launched or were preparing to launch new clinical trials of potential new lupus therapies include Bristol-Myers Squibb, MedImmune, and Eli Lilly and Company

3. Well-known celebrities bring greater attention and interest to lupus. In an article in the September issue of Vanity Fair magazine, entertainer Lady Gaga listed the LFA as one of her ‘two favorite’ charities. Previously she announced on CNN’s Larry King Live that she had undergone testing for lupus, greatly swelling public interest in the disease. Musician and philanthropist Julian Lennon and singer James Scott Cook generated thousands of dollars for lupus research through sales of their song, “LUCY.” Long-time LFA supporters Will Smith and Jada Pinkett Smith were on hand for the inaugural LFA Butterfly Gala in New York City to honor their aunt, Karen B. Evans, who serves as the executive director of their family foundation and is the former chair of LFA’s National Board of Directors.   Eduardo Xol, a landscape designer for ABC’s Extreme Makeover: Home Edition, served as Chair of LFA’s observance of Lupus Awareness Month held annually in May.

4. LFA spurred nearly $7 million in new federal funding for lupus during 2010. LFA advocacy efforts generated a significant return for lupus research in 2010. The Department of Defense (DoD) Medical Research Program provided another $2.3 million in 2010 to fund studies on lupus and lupus biomarkers, bringing the program’s total support for lupus over the past five years to $9.5 million. The Centers for Disease Control and Prevention (CDC) provided another $4.5 million in 2010, for a total of $16.6 million, to support the first comprehensive study to determine the incidence and prevalence of lupus. Study sites now underway are located in California, Georgia, Michigan, and New York, and also in Alaska through the Indian Health Services.

5. $50 million in donated media helped to elevate awareness of lupus through the National Lupus Public Awareness Campaign, “Could I Have Lupus.” The Ad Council and the U.S. Department of Health and Human Services Office on Women’s Health (OWH) released data that showed the campaign increased awareness of lupus among women ages 18-44. The LFA was the Founding Partner with OWH on the campaign, which began in March 2009 and included lupus messages in print publications and on billboards, broadcast stations, mass transit and the Internet.

6. LFA’s direct funding for research studies on lupus surpassed $23 million.   As part of its national research program, Bringing Down the Barriers™, the LFA provided grants to lupus investigators in 2010 for studies of neuropsychiatric lupus, pediatric lupus, lupus nephritis, male lupus, as well as studies on stem cells for treating lupus, reproductive issues relevant to lupus, and animal models of lupus.

7. New research findings offered potential for improved lupus diagnosis and management. Studies reported in 2010, both in the U.S. and abroad, provided insight into better ways to diagnose and manage different manifestations of lupus. Researchers at the University of Pittsburgh have developed a laboratory test that may enable doctors to more accurately assess lupus disease activity. Investigators from Spain found that cognitive behavioral therapy (CBT), a form of psychotherapy, significantly reduced the degree of psychological disorders associated with lupus and improved patients' quality of life. Researchers in China discovered that disease activity decreased significantly in a small group of lupus patients who received infusions of stem cells taken from umbilical cords. And a team of researchers at Albert Einstein College of Medicine in Bronx, New York found a protein in urine that was able to accurately diagnose lupus nephritis, opening the possibility that one day patients will no longer have to undergo invasive kidney biopsies.

8. 2010 LFA initiatives strengthened clinical trials in lupus. The LFA established theLupus Research Registry™, enabling individuals to indicate their interest in participating in lupus clinical studies in their area. Additionally, the organization launched the LFA POINT™ Program (Professional Online Instrument Training) to provide training and certification to clinical investigators using instruments to monitor disease activity and assess response to treatment in clinical trials of potential new therapies. Also in 2010, the LFA launched the Collective Data Analysis Initiative™ (CDAI), the first project of its kind in lupus, which will mine and analyze data from past failed lupus drug trials to determine the impact that background medicines have on clinical trial outcomes and help improve the design of future clinical studies.

9. The largest lupus walk, LFA’s Walk For Lupus Now®, attracted 35,000 participants and raised $3.5 million. There were 68 LFA-sponsored lupus walks in 2010 to bring additional attention and resources to fund lupus research, education programs, and support services. The LFA walks also provided opportunities for people with lupus to connect with each other and learn more about the disease through presentations made in conjunction with the events.  Walk for Lupus Now® events also helped increase the visibility of lupus and its impact on individuals and families through extensive local media coverage secured about the event and its participants.

10. LFA cosponsored major national and international scientific meetings to further expand lupus research and education. The LFA collaborated with the National Cancer Institute (NCI), National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), National Institute of Allergy and Infectious Diseases (NIAID) and the Office of Research on Women’s Health (ORWH) to conduct a major scientific meeting on mouse models used in lupus research. The program brought together basic, clinical and translational researchers to discuss clinical markers and their use in assessing the relevance of mouse models and the efficacy of treatment. The LFA also co-sponsored the Ninth International Congress on Lupus in Vancouver, Canada, which is conducted every three years for lupus investigators and clinicians from around the world. At the same meeting, the LFA helped organize a parallel program for leaders of international lupus advocacy and support groups to discuss developments in research and ways to enhance awareness and services to people with lupus. Additionally, LFA led international efforts to boost awareness of lupus by coordinating the annual World Lupus Day observance and securing signatures from lupus advocates in 81 countries for an online pledge to Band Together for Lupus™ and raise awareness of the disease.

Holidays = Headaches

2010-12-20T22:08:00.001-05:00

From the Archives: Fall 2007 Lupus Now magazine

Holidays = Headaches by Emily Wojcik

The weeks between Halloween and New Year's Eve are exciting and hectic, full of celebrations and extra errands. But if you suffer from headaches, this time of year can also mean more pain. According to a 2006 survey by the National Headache Foundation, 52 percent of respondents experienced an increase in frequency and severity of their headaches during holidays -- bad news for people with lupus, for whom headaches are a common symptom.

Determining whether your headaches are lupus-related can be difficult. Pain might indicate central nervous system involvement, but it might also result from a new treatment, disrupted dietary and sleep patterns, or stress from extra responsibility.

True lupus headaches often resemble "classic" migraines: intense pain that lasts up to three days and is often accompanied by visual distortion. Lupus headaches usually respond well to over-the-counter medications, but any treatment you're considering should be discussed with your doctor.

But what if your headache really is just a pain in the head? "Regular" tension headaches are common among people with lupus and get worse during times of physical stress, exhaustion, depression, or anxiety -- in other words, especially between November and January.

Although fatigue and muscle tension are often-unavoidable symptoms of lupus, you can lessen the severity and frequency of your headaches. Because over-the-counter drugs can cause "rebound" headaches and might interact with your current medications, think prevention rather than medication. The National Institutes of Health recommends keeping a "headache diary."

When you have a headache, jot down the time of day, what you ate and drank, how long you slept the night before, and any recent stress you've experienced. These notes can identify whether your headaches follow a pattern, and you may be able to modify those behaviors accordingly.

Meanwhile, try to stay moderate. 'Tis the season for overindulgence, but excess -- an extra glass of champagne, thirds on Grandma's stuffing -- is a guaranteed shortcut to a headache. (Also, never take acetaminophen after drinking alcohol, as it increases your risk of liver failure.) Overexposure to smoke- or perfume-filled rooms -- a frequent party hazard -- also can exacerbate pain. Practice restraint; your head will thank you.

As for stress and tension, nip them in the bud by making exercise a priority. No time to hit the gym? Three 10-minute periods of activity per day can mean the difference between pain and productivity. Make this time of year work for you: Recruit a visiting relative for a walk, or do some light stretching while you’re waiting for the pies to cool.

Finally, put yourself first. Relief might just be a matter of finding some peace and quiet. Relaxation exercises such as yoga or meditation can help, or try simply resting with your eyes closed for a brief time. A shoulder massage or heating pad can relieve muscle tension, but use caution if your skin is sensitive. Remember that your health is your first priority. After all, if you're happy and bright, these special times of the year will be, too.

Facing Lupus Fatigue

2010-12-09T14:24:00.001-05:00

The fatigue of lupus can’t be ignored. It’s much more than just feeling tired. It can make getting out of bed every morning seem like climbing a mountain. Ordinary tasks, like cooking dinner or doing the laundry, can seem impossible.

Fatigue is a symptom that others can’t see, which means they may not understand how bad you feel. Even worse, you may feel like no matter how much rest you do get, the fatigue will never go away.

If you have this kind of fatigue, talk to your doctor to find out if there is an exact cause, and if it can be treated. What you eat, your exercise routine, and your ability to cope with stress are all things that can worsen—or reduce—fatigue.

With lupus, medical conditions such as chronic inflammation, anemia (a blood disorder), and certain medicines often make fatigue even worse.

Your nurse or doctor will suggest ways to better manage fatigue. And here are a few extra tips from us. Call us if you have any questions.

Get Rest
Sleep is crucial for a person with lupus. Aim for 10 hours a night, and see if you feel better. A 15-minute nap during the day can also help, but longer naps may make you feel sluggish when you wake up, and can make it harder to fall asleep at night.

Exercise!
It seems like the opposite would be true, but exercise that gets your muscles moving and makes you sweaty can actually lessen fatigue. Studies show that people with lupus who exercise often feel more energetic as well as more hopeful and happy about life. Stronger muscles and bones are an added benefit.

Work Can Work For You
If you are used to working long hours, or getting up early for work, you may need to change your schedule. Fatigue can be worse at the beginning and end of the day, so think about working part-time, or coming in later and leaving later in the day. If possible, mix mini-breaks in to your work day rather than taking one long lunch hour.

Easier at Home
Talk to your spouse, children, or roommate about sharing chores around the house in ways that split things fairly, but give you the jobs that don’t add to your fatigue.

Pace Yourself
At the start of each week, make a schedule to be sure you’ll have a balance of rest and activity. Each morning, go over what you have to do for the day. If you think you’ll be too tired, try to reschedule. It’s better to be rested and enjoy your time out, rather than over doing it and feeling worse.

De-Stress
Stress makes it even harder for your body to heal itself. Stress-relievers such as massage, yoga, and acupuncture can reduce fatigue in some people with lupus.

Reach Out
Feeling alone or depressed can make lupus fatigue even worse. Reach out to your friends or spouse. Studies have shown that people with lupus that communicate well with their spouse, and feel in control and good about themselves, are less likely to feel fatigued. If you’d like help in finding new ways to talk to your spouse or friends and family, call the Cooperatives. An outreach coordinator can help you in many ways.

From Lupus of NY

Lupus In Color Interview

2010-11-24T21:29:00.001-05:00

It is so important to get the word out about Lupus.
It is such a hidden disease so when I am provided with an opportunity to educate & inform I am delighted to participate. As a guest on the Ananda Leeke Online Radio Show I enjoyed sharing a part of me with her audience.

Please listen and share.

Listen to internet radio with Ananda Leeke Show on Blog Talk Radio

Lupus Insensitivity

2010-10-22T08:35:00.000-04:00

So I was at a function and overheard some people talking. They were of course talking about me & the fact that I had lupus. I stood to the side where they could not see me and just listened. So one woman says, " yes she is a nice woman. She doesn't act like she is sick."..... The other woman chimes in, " Yeah I know sometimes I think it is all in her head.".... First woman, "Yeah you are probably right, I mean she does everything that we do and more." Other woman..." She does, I just hope she doesn't talk about this so called disease all the time. I don't want to hear all of that."

ARE YOU FREAKING KIDDING ME

Can you imagine how my attitude changed and how I made myself known to them? I mean really what complete insensitivity to a disease that is so prevalent in their community. So I proceeded to make myself seen and said, " hmmm it is so funny how you both have found the time to stand here and talk about a disease you do not suffer with. Not only are you standing out in the open, but you have the nerve to say that it is a so called disease. " ***both looked at me like Oh Snap she heard all that?*** I then stated, "Yeah I heard every word and I just want to let you both know how disappointed I am in you. Without having full knowledge about this disease you have talked about me & all that I do through my pain & then alluded to the disease not being real. Did you know that Lupus affects 1.5 million people across the nation, lupus is two to three times more prevalent among people of color, including African-Americans, Hispanics, Asians, and Native Americans, and although it is a disease that does not get the attention of other disease it is still affecting more people than AIDS & other prevalent diseases. Before you begin to comment on anything that anyone may suffer from please have all of your facts straight. Also, don't assume that the person you are speaking about is not close by and will hear what you say." I then walked away while they stood their with their mouths open, probably not even stunned by what I stated but by getting caught talking about me.

What a disgusting experience that was. It is a sad shame that people have become so insensitive due to lack of knowledge. Even when educated they still find the time to question and act as if things do not exist. I have had people call me and ask me how's that lupus thing going? I have had people say to me oh lupus is all in your head? Yeah lupus I've heard of that isn't that like just a bad form of arthritis, oh wait no it's cancer isn't it? I've heard of lupus that is contagious my child can't come to your house. Lupus, oh you know if you change your eating habits it goes away? I could go on and on with the things that I have heard.

I tell most of the people that have said these things that you really need to be educated and not allow misconceptions and myths to rule how you view this very debiliatating disease. In the next few months I will be posting pertinent information that I would love for each of you to share with just ONE person. I want to raise awareness and educate fully so that no other lupus survivor has to go through lupus insensitivity.

Help me spread the word. Invite one person to my blog & ask them to invite one. Education is the key to understanding the lupus survivor & all they go through.

I have lupus, lupus does NOT have ME!

Do You Know?

2010-10-21T08:40:00.000-04:00

Do you know what it feels like not to be able to walk?

Do you know what it feels like not to be able to wake with pain in your body?

Do you know what it feels like to get dressed without struggle?

Do you know what it feels like to be medication free?

Do you know what it feels like to look good on the outside, but feel like you are dying on the inside?

Do you know? Do you Know?

A lupus survivor fights a battle to complete daily tasks. When you see them they look GREAT. You walk up to them and say "oh you look Great, are you losing weight?" They politely say thank you and smile for your "compliment" when all the while they are hurting inside. They know your statement is meant in the most loving way but can't help to think that the reason why they are losing weight is because they are on Anti Cancer drugs for the Lupus they suffer from because there hasn't been a new drug placed on the market in 50 years to help their disease. They look in the mirror and see the pain they live with from day to day.

Do you know? Do you know?

A lupus survivor can go days even months without the use of limbs. Any little bit of stress can cause a flare inside thier bodies causing countless hospitalization stays for transfusions or medical treatments to prevent their body from killing itself.

Do you know?

Lupus is a tale untold. It is one of America's least recognized major diseases. While lupus is widespread, awareness and accurate knowledge about it lag behind many other illnesses. Lupus is on the rise, and scientists don't know exactly why.

I am a lupus survivor and I have HOPE that provides me the strength to see another day!

Do you know?

I need your support like I have never needed it before. It doesn't have to be monetary I would prefer it to be understanding and love. I look forward to receiving that from anyone and everyone who knows me.

Flu and Pneumonia Vaccines

2010-10-18T22:52:00.000-04:00

Flu and Pneumonia Vaccines

As the old saying goes, “an ounce of prevention is worth a pound of cure.” This section has information on the seasonal influenza (flu) and pneumonia vaccines, as well as current and updated information on the H1N1 flu vaccine.

2010-2011 Flu Vaccine Update

Officials at the Lupus Foundation of America (LFA) are aware of the concern that people with lupus have had about the 2009 outbreak of the H1N1 (Swine) Flu. Please know that the members of the LFA Medical-Scientific Advisory Council are continuing to monitor the possible impact of the 2010 flu virus on people with lupus. Any updated information will be posted on the lupus.org website as soon as it becomes available. More information is available in the Related Information section, below.

The influenza vaccine formulation is updated every year to combat the flu virus strains that are most likely to cause illness during the upcoming season. The 2010-2011 flu vaccine is being made in the same way as seasonal vaccines have been made for decades. It will protect against the 2009 H1N1 virus that caused so much illness last season, as well as offering protection against two other influenza viruses (an H3N2 virus and an influenza B virus).

Even if you received the 2009 H1N1 vaccine or last year’s seasonal vaccine, you need to be vaccinated with this year’s 2010 seasonal flu vaccine. This season’s vaccine provides protection against influenza virus strains that were not in either the seasonal or the 2009 H1N1 vaccine last season. Also, the protective effect of a vaccine can lessen over time.

Seasonal Flu Vaccine

The influenza vaccine (flu shot) is a highly effective vaccine made from an inactivated (killed) virus. It is given once a year to people who are at risk for complications of influenza infection. About two weeks after vaccination, the body develops antibodies that provide protection against the influenza virus infection.

Sometimes a vaccine against a particular infectious agent (such as a germ, bacteria, or virus) can trigger autoimmune flares, but people with lupus generally do not have any side effects from the flu vaccine. When they do, their symptoms are usually mild, such as a few days of fever and muscle aches. Overall, the influenza vaccine is considered to be safe and effective for people with lupus, and it is recommended that lupus patients receive the flu vaccine every year.

Is There a Flu Vaccine that is NOT Recommended for those with lupus?

The inhaled flu prevention treatment (Flu-Mist®) is not recommended for people with lupus, or for their family or anyone with whom they come into close contact, because it contains a form of attenuated (weakened, but still live) virus; therefore it is not considered safe for people with any immune-compromising disorder, or anyone taking an immunosuppressant medications (prednisone or cyclophosphamide, for example).

Pneumonia Vaccine

The pneumonia vaccine (pneumonia shot) is also recommended for people with lupus, and a second dose should be given five years after the first dose. This vaccine can help to prevent most (but not all) kinds of pneumonia.

How effective are the Flu and Pneumonia Vaccines for People with Lupus?

Several research studies showed that the flu vaccine caused a protective antibody response in people with lupus, although the antibody levels tended to be lower than in the healthy control group. Because incidences of illness and death related to influenza and pneumonia are higher in immunocompromised individuals, it is recommended that everyone with lupus receives the annual flu and pneumonia vaccines.

People with lupus should always talk with their doctor before receiving any vaccine, especially if they are pregnant or have had allergic reactions to medications in the past.

Protecting Yourself from the Flu and Pneumonia

Below are simple steps that people with lupus and their family members can take to lessen the likelihood of contracting influenza, pneumonia, and other germs.

Avoid anyone—including family members—who has symptoms of fever (over 100º F), nausea, vomiting, or diarrhea. Specifically, you should avoid close, personal contact, such as hugging, kissing, and shaking hands.
Wash your hands (tops, palms, and fingers) frequently with hot soapy water for at least 15 seconds.
Remember that surfaces—especially in bathrooms, on shared office equipment, on store countertops, and in restaurants—can retain the H1N1 virus. Keep alcohol-based gel or wipes handy, both out in public and at home.
Avoid touching your eyes, nose, or mouth. Germs spread this way.
Use the crook of your arm to shield coughs and sneezing. Do not use your hands or handkerchiefs as they carry moisture that spread viruses.
Stay home from work or school if you are sick.
Please remember that you should never discontinue medications used to treat your lupus without first consulting with your doctor.

LFA Awards New Grants to Fund Critical Areas of Lupus Research

2010-10-18T22:46:00.000-04:00

LFA Awards New Grants to Fund Critical Areas of Lupus Research

October 13, 2010

The Lupus Foundation of America addresses the gaps in understanding of pediatric lupus, neuropsychiatric lupus, lupus nephritis, and reproductive health Issues.

The Lupus Foundation of America, Inc. (LFA) announced the awarding of six new research grants to address gaps in the science and understanding of key areas of lupus research, including pediatric lupus, reproductive health issues in people with lupus, lupus nephritis (kidney involvement), and neuropsychiatric lupus, which affects the brain and nervous system. Advancements in these areas of lupus research are crucial to improving a patient’s quality of life, yet remain poorly understood, and have been inadequately funded by the federal government, industry, and other organizations.

“The research funded this year tackles some of the most complex and challenging areas of lupus research,” said Sandra C. Raymond, President and CEO of the Lupus Foundation of America. “Issues related to reproductive health, the kidneys, and the nervous system affect so many of those living with lupus, yet these areas of research have suffered from a lack of resources, and in some cases have seen little advancement.”

Areas of study supported by Lupus Foundation of America’s (LFA) National Research Program have included epidemiology, biomarkers, cardiovascular disease, and adult stem cell transplantation. A key area of funding this year is reproductive health issues in people with lupus, which can affect both men and women. Reproductive health issues can include miscarriages, pre-term birth, and complications such as preeclampsia. There also is a need to develop programs to educate doctors and patients on issues related to the treatment of lupus during pregnancy, a better understanding of the risk factors for pregnancy-related complications and miscarriages, and the impact on the development of the fetus.

The LFA’s National Research Program is dedicated to Bringing Down the Barriers that have obstructed basic biomedical, clinical, epidemiological, behavioral, and translational lupus research for decades. The LFA’s National Research Program is unique because it directs LFA funding to areas of research where gaps exist in the understanding of lupus and promising areas of study in which other public and private organizations have not focused their efforts.

Using a national three-pronged strategy, the LFA and its national network are committed to advancing the science and medicine of lupus by: funding investigators through a peer-reviewed grant program; directly conducting special research initiatives; and advocating for increased investment by federal and state governments, as well as the nation's pharmaceutical and biotechnology industries. For more information about the LFA’s National Research program, visit www.lupus.org/research.

2010-2011 Lupus Foundation of America National Research Program Awards

Michael Jon Barlin Pediatric Lupus Research Program

Kathleen M. O’Neil, M.D.

Associate Professor of Pediatrics

University of Oklahoma College of Medicine

“Effect of Pubertal Hormone Changes on Systemic Lupus Erythematosus”

This grant award is made possible through support of the Wallace H. Coulter Foundation in memory of Michael Jon Barlin.

Male Lupus Research

Bruce C. Richardson, M.D., Ph.D.

Professor of Internal Medicine

University of Michigan School of Medicine

“Genetic/Epigenetic Modeling of Male Lupus Risk”

This grant award is made possible through support of the Wallace H. Coulter Foundation in memory of Michael Jon Barlin.

Stem Cell Research

Richard K. Burt, M.D.

Professor of Immunotherapy

Northwestern University School of Medicine

“Hematopoietic Stem Cell Transplantation Induces Remission in Lupus”

This grant award is made possible with funds contributed by the LFA, Illinois Chapter.

Lupus Nephritis

Richard J. Quigg, M.D.

Professor of Medicine

The University of Chicago Medical Center

“Therapeutic Complement Manipulation in a Novel Murine Lupus Nephritis Model”

This grant award is made possible through support of the Louis Berkowitz Family Foundation and with funds contributed by the LFA, Illinois Chapter.

Neuropsychiatric Lupus

Martin G. Pomper, M.D., Ph.D.

Professor of Radiology

Johns Hopkins Medical Institutions

“Imaging Microglial Activation in Neuropsychiatric Lupus”

This grant award is presented in memory of Kassie McMullin Biglow and with funds contributed by the LFA, Akron Area Chapter and the LFA, DC/ Maryland/ Virginia Chapter.

Reproductive Issues in Lupus

Michelle A. Petri, M.D., M.P.H.

Professor of Medicine

Johns Hopkins Medical Institutions

“Double-Blind Placebo Controlled Trial of Levothyroxine in SLE Pregnancy”

This award is provided through a trust created in memory of Stephen and Catherine Pida and with funds contributed by the LFA, DC/ Maryland/ Virginia Chapter.

About the LFA

The LFA is the foremost national nonprofit health organization dedicated to finding the causes of and cure for lupus, and providing support, services, and hope to all people affected by lupus. The LFA and its national network of chapters, branches, and support groups conduct programs of research, education, and advocacy. For more information, visit www.lupus.org.

About the Wallace H. Coulter Foundation

Wallace Henry Coulter was an engineer, inventor, entrepreneur, and visionary. He was co-founder and Chairman of Coulter® Corporation, a worldwide medical diagnostics company, and through his discovery of the Coulter® Principle, is responsible for the current practice of hematology laboratory medicine.

Named for Coulter, the Foundation is dedicated to the advancement of translational research in biomedical engineering with the goal of accelerating the introduction of new technologies into patient care. The Foundation received its first funding in 1999 and since then has worked with colleges, universities, and professional associations that Wallace Coulter was associated with during his lifetime. His values of endless curiosity, continuous learning, teamwork, consideration, and respect for the individual, coupled with the highest level of ethics and integrity, are the cornerstone values of the Wallace H. Coulter Foundation.

LFA Chapters that have provided contributions in support of the LFA’s National Research Program:

Alaska Chapter

Akron Area Chapter

DC/MD/VA Chapter

Eastern Virginia Chapter

Illinois Chapter

Memphis Area Chapter

Philadelphia Tri-State Chapter

Piedmont Chapter

Vermont Chapter

Winston-Triad Chapter

Staying Active and Eating Healthy

2010-09-27T12:14:00.000-04:00

Staying Active and Eating Healthy

Steps to Get You Moving

Get Moving!

With all the things that you have to do each day, finding the time and motivation to get moving can be challenging. Here are 20 ideas for getting started and keeping it going:

1.If you can't set aside one block of time, do short activities throughout the day, such as three 10-minute walks.

2.Choose activities that are fun.

3.Vary your activities, so you don't get bored. For instance, use different jogging, walking, or biking paths to vary your routine. Or bike one day, and jog the next.

4.Join a hiking or running club.

5.Wear a pedometer (a small tool worn on your belt) that counts the number of steps you take. Try to walk a little more each day or week.

6.Create opportunities for activity, such as parking your car some distance from your destination and walking.

7.Use stairs instead of the elevator.

8.Walk or bike to work or to the store.

9.Be physically active at lunch with coworkers, family, or friends.

10.Join an office or community sports league.

11.Take a break at work to stretch or take a quick walk.

12.Don't let cold weather keep you on the couch! You can find activities to do in the winter, such as exercising to a workout video.

13.If you have children, make time to play with them outside. Set a good example!

14.Go dancing with your partner or friends..

15.Turn activities into social occasions—for example, go to a movie after you and a friend work out.

16.Plan active vacations that will keep you moving, such as taking tours and site-seeing on foot.

17.Set specific, short-term goals, and reward yourself when you achieve them.

18.Don't expect to notice body changes right away. It can take weeks or months before you notice some of the changes from being physically active, such as weight loss.

19.If you live in a neighborhood where it is unsafe to be physically active outdoors, contact your local recreational center or church to see if they have any indoor activity programs that you can join.

20.Make physical activity a regular part of your day, so that it becomes a habit—and perhaps something you look forward to!

Additional resources found http://www.womenshealth.gov/FitnessNutrition/getmoving/

Sleep Easy - Why Sleep Is Critical When You Have Lupus

2010-09-08T15:17:00.000-04:00

Sleep Easy - Why Sleep Is Critical When You Have Lupus

By Jenny Thorn Palter

Autoimmune diseases, including lupus, run in Karen Avery’s family. “My brother has discoid lupus, and I lost my cousin to lupus three years ago. She was only 42—the age I am now,” she says.

Avery was diagnosed with lupus in 1989 while in college. “I remember vividly the day I got sick; I fell asleep in class, and when I woke up my hands were blue. I stood up from my desk, and I was in so much pain, I thought, ‘I must have the flu.’ I have always had sleep issues and great difficulty sleeping at night. Plus, I wasn’t eating right, I wasn’t exercising; I was running myself into the ground,” she says.

Today, Avery is a managing director for Marsh & McLennan Companies, an insurance brokerage and consulting firm based in New York City; she runs a global consulting firm for the company. As if that were not enough, she is a new single mother of one-year-old fraternal twin girls, Erika and Eden.

Although Avery has, for the most part, been successfully managing her disease for years, she has been hospitalized four times since 1989 with lupus flares. She believes every flare was caused by a significant and prolonged lack of sleep. For her, getting the right amount of sleep is essential.

What’s in a Zzzz …?

Until the 1950s, most people thought of sleep as a passive, dormant part of daily life. We now know sleep affects our daily functioning and our physical and mental health in many ways we are just beginning to understand.

According to the National Institutes of Health (NIH), approximately 70 million people in the U.S. are affected by a chronic sleep disorder or intermittent sleep problem. NIH reports that women suffer from lack of sleep more than men do; these sleep problems increase in frequency as women age.

The 2009 Sleep in America™ poll, conducted by the National Sleep Foundation (NSF), found that compared with those in poor health, people in good health are two to three times more likely to work efficiently, exercise, and eat healthfully because they are getting enough sleep.

Add lupus to the mix, and the importance of good sleep takes on an even more important role.

Is Sleep Related to Disease?

Sleep deprivation can be harmful to the immune system. Research done through the National Institute of Neurological Disorders and Stroke has shown that neurons that control sleep interact closely with the immune system. For example, as anyone who has had the flu knows, infectious diseases tend to make us feel sleepy. This probably happens because cyto-kines—chemicals that the immune system produces while fighting an infection—are powerful sleep-inducing chemicals. Sleep may help the body conserve energy and other resources that the immune system needs to mount an attack.

Daniel McNally, M.D., a pulmonologist and director of the University of Connecticut’s Sleep Disorders Center, agrees that people with a chronic illness, especially those who live with chronic pain and must deal with sleep-disrupting effects of medications, are likely to have more sleep problems on average. “Being able to help these people with ways to sleep better may give them a bit of relief,” he says. “Here at UConn, we try to train our medical students and residents to make sleep part of their health review with the patient.”

McNally says the university’s medical school curriculum includes four class hours on sleep. “That puts the university in the top 20 percent of medical schools in the country for the amount of time spent teaching about sleep,” he says.

The NSF poll also found that only about 40 percent of Americans feel sleep is as important as exercise or eating well to overall health and well-being. Only 32 percent of those who reported having sleep problems discussed it with their physician. McNally is not surprised.

"Many of the problems with sleep come about because people take it for granted and skip on sleep so they can do ‘x’ or ‘y,’ and then wonder why they feel poorly. I’m always frustrated when someone who should be getting adequate sleep says, ‘Can’t I just take more vitamins?’ ”

How Much Sleep Do We Need?
How much sleep we need depends on many factors, including age. While teenagers need about nine hours of sleep, seven to eight hours of sleep a night appears to be the best amount for most adults. The amount of sleep a person needs also increases if he or she has been deprived of sleep in previous days. Getting too little sleep creates a “sleep debt,” which is much like being overdrawn at a bank. Eventually, your body will demand that the debt be repaid.

We don’t seem to adapt to getting inadequate sleep, either; we may get accustomed to a sleep-depriving schedule, but our judgment, reaction time, and other functions are still impaired.

What’s worse, the practice of “burning the candle at both ends” that is common—and even respected—in Western industrialized societies has created so much sleep deprivation that what is really abnormal sleepiness has become the norm.

But sleep deprivation is dangerous: Sleep-deprived people who are tested by using a driving simulator, or by performing a hand-eye coordination task, perform as badly as or worse than those who are intoxicated.

Are You Making Sure of Sleep?

When Avery decided to have her children, she vowed to take control of both her work hours and her sleep hours. To be sure to get enough sleep to prevent her lupus from flaring, Avery has implemented a variety of strategies. Read her tips for better sleep at lupusnow.org/sleep.

“Without sleep I will have a lupus flare, so sleep is critical for my overall health and well-being,” Avery says. “The quality of my life has really improved over the last six, seven, eight years, because I really took control,” she says. “I said, ‘I’m going to get more sleep, I’m going to exercise, I’m not going to be too dependent on medication, although I have to take it sometimes; I’m really going to force myself to do these things,’ and it’s made a huge difference.”

Tips for a Good Night’s Sleep

Set a schedule. Go to bed at a set time each night and get up at the same time each morning. Disrupting this schedule may lead to insomnia. “Sleeping in” on weekends also makes it harder to wake up early on Monday morning because it resets your sleep cycles for a later awakening.

Exercise. Try to exercise 20 to 30 minutes a day. Daily exercise often helps people sleep, although a workout soon before bedtime may interfere with sleep. For maximum benefit, try to get your exercise about 5 to 6 hours before going to bed.

Avoid caffeine, nicotine, and alcohol. Avoid drinks that contain caffeine, which acts as a stimulant and keeps people awake. Sources of caffeine include coffee, chocolate, soft drinks, non-herbal teas, diet drugs, and some pain relievers. Smokers tend to sleep very lightly and often wake up in the early morning due to nicotine withdrawal. Alcohol robs people of deep sleep and REM sleep and keeps them in the lighter stages of sleep.

Relax before bed. A warm bath, reading, or another relaxing routine can make it easier to fall sleep. You can train yourself to associate certain restful activities with sleep and make them part of your bedtime ritual.

Sleep until sunlight. If possible, wake up with the sun or use very bright lights in the morning. Sunlight helps the body’s internal biological clock reset itself each day.

Don’t lie in bed awake. If you can’t get to sleep, don’t just lie in bed. Get out of bed and do something else, such as reading, watching television, or listening to music, until you feel tired. The anxiety of being unable to fall asleep can actually contribute to insomnia.
Control your room temperature. Maintain a comfortable temperature in the bedroom. Extreme temperatures may disrupt sleep or prevent you from falling asleep.
See a doctor if your sleeping problem continues. If you have trouble falling asleep night after night, or if you always feel tired the next day, then you may have a sleep disorder and should see a physician. Your primary care physician may be able to help you; if not, you can probably find a sleep specialist at a major hospital near you. Most sleep disorders can be treated effectively, so you can finally get that good night’s sleep you need.

(Adapted from When You Can’t Sleep: The ABCs of ZZZs, by the National Sleep Foundation, courtesy of the National Institute of Neurological Disorders and Stroke)

--------------------------------------------------------------------------------

Lupus Now(R) magazine is published three times per year by the Lupus Foundation of America. Your subscription not only brings to your mailbox the only national magazine dedicated exclusively to lupus, funds generated from subscription sales also help support other LFA programs, such as research, education, awareness, advocacy, and patient services. Consider purchasing a subscription now and help support programs that benefit all people affect by lupus. A subscription also is included as a member benefit when you join an LFA chapter.

Will and Jada Smith, Julian Lennon, Robin Thicke, and Eduardo Xol Among the Star-Studded Line-Up Supporting the Lupus Foundation of America’s Inaugural New York City Butterfly Gala

2010-08-23T10:15:00.002-04:00

Will and Jada Smith, Julian Lennon, Robin Thicke, and Eduardo Xol Among the Star-Studded Line-Up Supporting the Lupus Foundation of America’s Inaugural New York City Butterfly Gala

August 16, 2010

The Butterfly Gala will strengthen the LFA’s research program, Bringing Down the Barriers, and further expand local education and support services in the greater New York area

(Washington, D.C.) LFA – The Lupus Foundation of America (LFA) announced a star-studded line-up of honorees, special guests, and entertainment for the LFA’s inaugural New York City Butterfly Gala on Tuesday, September 14, 2010. The LFA will honor: musician and philanthropist Julian Lennon; Peggy Conlon, President and Chief Executive Officer, The Advertising Council; and the Will and Jada Smith Family Foundation. Supporting the estimated 1.5 million Americans and nearly 100,000 individuals in New York living with lupus is a personal mission for the LFA’s outstanding honorees and special guests, nearly all of whom have been touched by lupus through a family member or friend.
“Family and friends are on the frontlines of this disease, and during The Butterfly Gala we will highlight the critical role they play in increasing public understanding of this disease and generating support for lupus research, and extend our gratitude and appreciation for their continued partnership,” said Sandra C. Raymond, Lupus Foundation of America President and CEO. “All of the proceeds will be used to strengthen our research program, Bringing Down the Barriers, and provide expanded services and support to the thousands of people with lupus and their families who comprise an ever-growing LFA family in New York.”
The 2010 Inaugural LFA’s New York City Butterfly Gala will recognize:
• Julian Lennon for his efforts to bring lupus to the forefront of popular culture, raise critically important dollars for research, and inspire those living with lupus and their loved ones around the world to band together and advocate for safer, more effective treatments and a cure.
• Peggy Conlon, President and CEO of The Advertising Council for shedding light on some of the most pressing issues of our time, and raising awareness to inspire action and save lives. The LFA will also recognize The Ad Council’s partnership and collaboration with the LFA, the U.S. Department of Health and Human Services’ Office on Women’s Health, and other major stakeholders on the “Could I have lupus?” campaign, which has brought national attention and resources to this often overlooked and underappreciated disease.
• Will and Jada Smith Family Foundation for their support of the LFA mission throughout the years, raising public awareness of lupus, and long-standing interest and support of lupus research. Karen B. Evans, Executive Director of the Will and Jada Smith Family Foundation, Immediate Past LFA National Board Chair, will accept the award on the Foundation’s behalf.
Will and Jada Smith are the LFA’s special invited guests for the evening. GRAMMY® award-winning recording artist Robin Thicke will provide the entertainment, and Eduardo Xol from ABC’s Extreme Makeover: Home Edition will serve as the Master of Ceremonies.
The LFA New York City Butterfly Gala is the sister event to LFA’s National Butterfly Gala in Washington, DC. The Butterfly Gala raises the profile of lupus, generates critically important LFA program funding, and encourages greater public and private investments in life-saving research, education, advocacy, and support services.
For more information about the LFA’s New York City Butterfly Gala, please visit, www.lupus.org/gala, email gala@lupus.org, or call 202-349-1171.

Human Genome Sciences and GlaxoSmithKline Announce FDA Priority Review Designation for Benlysta

2010-08-23T10:14:00.002-04:00

Human Genome Sciences and GlaxoSmithKline Announce FDA Priority Review Designation for Benlysta® (Belimumab) as a Potential Treatment for Systemic Lupus Erythematosus

August 19, 2010

Human Genome Sciences, Inc. (Nasdaq: HGSI) and GlaxoSmithKline PLC (GSK) today announced that the U.S. Food and Drug Administration (FDA) has granted a priority review designation to BENLYSTA® (belimumab) as a potential treatment for systemic lupus erythematosus (SLE). A priority review designation is granted to drugs that, if approved, offer major advances in treatment or provide a treatment where no adequate therapy exists. The FDA has assigned belimumab a Prescription Drug User Fee Act (PDUFA) target date of December 9, 2010.
Click here to read the company release

Dear Lupus 8/5/10

2010-08-05T08:33:00.000-04:00

Dear Lupus,

I am NOT your FRIEND so stop acting like you know me. You can't just drop by at a moment's notice & think I would welcome you with open arms. {{{Slamming door in your face}}}} You need to vacate the body IMMEDIATELY you are NOT WELCOME here.

First of all your attitude sucks & all you bring is negativity to the table. I don't need friends like you. You are ugly & you have nothing at all to offer me or anybody else. All you do is take take take from me and I am tired of it. You only give heartache and pain and you just annoy the hell out of me. I usually am a very nice person and treat everyone with respect. Well that goes out the window with you. If you feel I am being nasty and disrespectful to you then you got the freakin' message. I don't like your stupid ass. Yep I cursed at you, I curse you. What? did you say something? Yeah I heard that ****POW*** did you feel that punch dead in your throat? ***POP*** Take that kick in your stomach... Aww do you need help up? ******STOMP***** Take that stomp into the ground. Yeah, what? You still talking? Oh my you swinging from the ground on me? ***DUCK*** Ha you missed SUCKA, I float like a butterfly and sting like a bee baby, **POW, HIYA, BOP** Take that. Oh snap I busted out your fronts and broke both your legs. DANG my bad, sometimes even I underestimate my super powers. Don't get back up, because I am NOT in the freakin' mood to fight and you made me break a nail. ***SLAP*** oooo heifer dang now I gotta go get a manicure, hmm well thanks for that one because I need one anyway. **SLAP** that one was just for the hell of it. Stay on the ground bitch, stay crying in the mud, don't say another damn word. What? Huh? You need a medic. Baby please my cell phone is dead I can't possibly do that.

{{{Leaning down whispering in your ear}}} " Guess what? NO MATTER how hard you try to beat me, I'm STILL BLESSED, I'm STILL ENCOURAGED & I WILL STILL BE A BLESSING! ***poof** You are GONE.

{{{{Walking away fixing my hair and clothes. Mumbling broke my damn nail, I shoulda made that chick eat it}}}

{{{{SCREAMING AS I WALK AWAY}}}}

"BITCH DON'T COME AROUND HERE NO MORE TRYING TO MAKE ME LOSE MY RELIGION & MAKING ME BREAK A SWEAT, I'LL BEAT YOU DOWN WORSE THAN I DID TODAY!"

NOT YOURS,

RACQUEL

Senate Appropriations Committee Recommends More Funding for Lupus Research and Education Initiatives

2010-08-04T19:20:00.000-04:00

Senate Appropriations Committee Recommends More Funding for Lupus Research and Education Initiatives

August 3, 2010

On Thursday, July 29, 2010, the United States Senate Appropriations Committee approved their version of the Labor-Health and Human Services-and Education Appropriations bill, which funds the U.S. Department of Health and Human Services and other federal agencies that conduct programs important to people with lupus, including research, public awareness, professional education, and support programs.

The LFA is pleased to report that the legislation funds a number of initiatives supported by LFA lupus advocates whom in March made more than 2,000 contacts with Members of Congress and their staff aides to call for increased appropriations for lupus programs.

One of the LFA’s legislative priorities has been to secure expanded funding for epidemiology studies to determine the true incidence and prevalence of lupus in the United States. The LFA is pleased to report that the Senate Appropriations Committee included $4.5 million in funding for the National Lupus Patient Registry at the Centers for Disease Control and Prevention (CDC) in the Fiscal Year 2011 Senate Labor-Health and Human Services-and Education Appropriations bill.

In 2003, the CDC received $1 million to establish lupus registries in Georgia and Michigan. LFA has advocated expanding the program to include additional sites in other parts of the U.S. to ensure the study includes all forms of lupus and all populations affected by lupus, particularly African Americans, Hispanics/Latinos, Asian Americans, and Native Americans who are disproportionately at-risk for lupus. Thanks to all of the hard work of LFA advocates, this additional funding brings the total program amount to $20 million.

In 2006, the LFA secured Congressional support for the Lupus Research, Education, Awareness, Communications and Healthcare (REACH) Act. Among its provisions, the legislation called for funding programs to Increase public awareness and improve health professional education. LFA advocates each year have urged the Congress to fund initiatives aimed at improving understanding of lupus, especially among individuals at highest risk for developing the disease. Many of the programs proposed in the REACH legislation have been implemented or are in progress, including an Ad Council national lupus public awareness campaign launched in 2009 and sponsored by the US Department of Health and Human Services Office on Women's Health (OWH). The LFA was the Founding Partner with OWH on this campaign.

The LFA is pleased to report that the Senate Labor-Health and Human Services Appropriations bill just approved by the Senate Appropriations Committee also provides funds to continue a national health provider education program on lupus. Congress provided $1 million for this program, to be operated jointly by the Department of Health and Human Services Office of Minority Health, Office on Women’s Health, and the US Surgeon General.

The education program addresses a key goal for the LFA’s advocacy efforts to improve early diagnosis and treatment of lupus. According to an LFA survey, more than half of the people with lupus reported they suffered symptoms of the disease for four or more years and visited three or more doctors before obtaining a diagnosis of lupus.

LFA advocacy efforts have been very effective in generating additional dollars for lupus research and education programs. In fact, for every dollar contributed to the LFA over the last five years, LFA-led efforts on Capitol Hill have resulted in $7 in federal funding for lupus research and awareness programs.

The LFA applauds the Senate Appropriations Committee for their support of people with lupus. The Appropriations bill still has to be voted on by the full Senate. The House of Representatives will also have to vote on their own version of the Labor-Health and Human Services-and Education bill before this funding is fully approved. The LFA will continue to follow the appropriations process closely.
Review Senate Report 111-243 on the Library of Congress website.

Explaining Lupus to Others

2010-08-01T11:16:00.000-04:00

Explaining Lupus to Others

Perhaps a good way to start to explain lupus is to make clear what lupus is not.

Lupus is not contagious. You cannot "catch" lupus from someone or "give" lupus to someone.

Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues.

Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS, the immune system is under-active; in lupus, the immune system is overactive.

You can then talk about what lupus is.

Lupus is an autoimmune disease. In some ways, lupus represents a kind of allergic reaction by the body, in which the immune system sees the body’s own healthy tissues and cells as foreign.

Lupus is a chronic disease. This means that anyone who develops lupus will have lupus for the rest of his or her life. As with other chronic illnesses such as diabetes or asthma, there is no cure for lupus yet. However, there are medications and lifestyle adjustments that help most people live active and productive lives in spite of these illnesses.

Lupus has many different symptoms, and because of that, affects each person differently. Lupus can cause a mild skin rash or achy joints, or can involve the kidneys, heart, lungs, brain, or other internal organs. What most people do not realize, however, is how much effort it may take you to function day-to-day when you have to cope with extreme fatigue, chronic pain, memory loss, medication side effects, and/or visible skin lesions.

Lupus is unpredictable because it is a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Knowing that lupus is unpredictable may help other people understand your physical and emotional ups and downs as well as the changes that you may have to make to schedules, plans, and commitments.

Source: http://www.lupus.org/webmodules/webarticlesnet/templates/new_learncoping.aspx?articleid=2259&zoneid=528

Ode to Lupus-an original reflection by Heather Joy Ali

2010-07-27T09:12:00.000-04:00

Ode to Lupus-an original reflection

by Heather Joy Ali

It hurts to laugh.

It hurts to sneeze.

It hurts to stand

or bend my knees.

My toes are screaming out in pain.

My bones can tell it's gonna rain.

I move so slow.

I can't walk straight.

I feel like I am 88.

I'm tired even in my bed.

I can't remember what I said.

Right now I'm not

the most polite-est.

You can thank

my toe arthritis.

I have a rash upon my face

that comes and goes without a trace.

My legs are weak-

they feel so rickety!

Excuse me if

I seem persnickety.

These steroids make me feel so grumpy.

Why are my patellas lumpy?

My thumb meat's swollen hot, and tender.

Did someone throw me in a blender?

The aches and pains;

they hurt so bad

(in parts I never

knew I had).

It's hard to go out and have fun

when you're allergic to the sun.

At times, it's hard

to poop and such.

But other times,

I poop too much!

My vision's blurry-a real hysteria!

(Thanks to my pills meant for malaria).

I get a pain

with each deep breath

that almost scared me

half to death!

Did someone hit me with a mallot?

Why's there a sore on my hard palate?

Oh well. For now

I've had enough

of poorly

diagnosing stuff.

I'll look to better days ahead.

Til then, I'm going back to bed!

Dear Lupus 7/25/10

2010-07-25T15:51:00.000-04:00

Dear Lupus,

I am so through with you that I can't even form the words to describe my disgust. You have attempted to steal my joy and the joy of other lupus survivors & I despise you for it. I thought I would let you know that you have not won any battles & have yet to see the power and glory of my father The King. So I am putting you on notice right now, if I ever see your ugly face again it will not be a good thing for you. I refuse to allow you to come in and strike whenever you feel like it. No matter what happens it is not you who is in control but God. You can not control my life or the lives of other lupus survivors. We will gladly take a stand behind the Almighty in order to place you under our feet. Just Stop trying to hurt us and we will surely be happier in our living.

Never Yours,

Racquel

Yesterday, I lost a friend to the complications that lupus can present in your body. Cicely was a wonderful woman with the sweetest spirit. She fought the good fight until the end. She left me with a message right before she went on to be with the Lord, "I can't focus on our negatives because it just creates more negative energy between us. I'd rather focus on our good and love on that for a lifetime. Life is too short to be angry so be happy no matter what your circumstances" I know she would have wanted me to share that with each of you. I know she is resting in peace with no pain or worries.

To all my lupus survivors, keep fighting and always remember "I have lupus, lupus does NOT have ME!"

Be Blessed, Be Encouraged, & Be a Blessing

Lupus Warning

2010-07-10T22:46:00.000-04:00

WARNING

I have lupus and if I hear one more person say:

But you don't look sick
Everybody gets tired
You're just getting older
If you'd get out more
If you'd get more excercise
Maybe you should change your diet
Oh I knew someone who had that you know it's cancer
It can't be that bad
You should try this herbal pill it will make it go away
You should get a second opinion
How's that lupus thing going

or offer me any unsolicited medical advice whatsoever....

I WILL NOT BE RESPONSIBLE

FOR MY ACTIONS!

YOU HAVE BEEN WARNED!!!!!

Diagnosing Lupus from the Lupus Foundation of America

2010-07-10T09:09:00.000-04:00

Diagnosing Lupus

Unlike other chronic illnesses, trying to reach a diagnosis of lupus isn’t always easy. However, today’s physicians have more precise techniques and tests to detect signs of disease. You also play a critical role in discussing and managing your health: listen to your body, ask questions, and stay involved!

How Is Lupus Diagnosed?
Because many symptoms of systemic lupus erythematosus (SLE) mimic those of other illnesses, lupus can be a difficult disease to diagnose. The diagnosis of lupus is based off of a combination of physical symptoms and laboratory results and for most people is not a one time diagnosis. More often than not it is a diagnosis that evolves over time either towards more certainty that a person does or does not meet the criteria for a diagnosis of lupus. So what is your doctor looking for to help determine if you may have lupus?

Common Symptoms of LupusIt is important to know the symptoms of lupus and to know if you are at risk for this disease. This section will cover the most common symptoms of lupus and the criteria established by the American College of Rheumatology to help establish a diagnosis of lupus.

Check out our new interactive "Could you have lupus?" symptom checklist!
This interactive tool was designed to help you better understand the many ways that lupus can affect your body. Each highlighted section features a text box which provides a brief description of how lupus can damage a particular organ or system, from the brain to the blood vessels. You will also be able to go further into the Website for more detailed information. Included is a set of health questions for you to answer that will help your doctor know if you may be at risk for lupus.

Laboratory Tests for LupusLupus is characterized by abnormalities in many laboratory test results. These abnormalities are different for every patient and they vary significantly during the course of a patient’s disease. The serial evaluation of an individual’s tests along with the physician’s observations and the patient’s history determine the diagnosis of systemic lupus erythematosus (SLE), its course, and the treatment regimen. All laboratory values must be interpreted in light of the patient’s present status, other correlating laboratory test results, and coexisting illnesses. This section briefly describes the major tests used to diagnose and evaluate SLE and provides information on their rationale and clinical usefulness.

What Do These Test Results Mean?
Understanding these tests and what the test results mean can be difficult. In many cases, it can take months or even years for doctors to put together all of the information that is required to make a firm diagnosis of lupus. It is important to have thorough and ongoing communication with your doctors so that the proper diagnosis, whether of lupus or some other condition, can be made as early and accurately as possible.

How to Prepare for a Doctor’s AppointmentIn today's managed care environment, the time you spend face-to-face with your physician is limited. To get the most from your health care providers (HCPs) you'll need to meet them halfway, and preparation is the key. If you come prepared with the details and history of your problem, anticipate questions, know your medications, and bring medical records you increase the likelihood of an accurate diagnosis. And if you are anxious about doctor appointments, good preparation will go a long way to alleviate that anxiety. The following tips can help you make the most of your appointment.

Prognosis and Hopeful Future
We now know more about lupus than ever before. Dedicated researchers are on the brink of significant breakthroughs in the underlying science of the immune system, while public awareness and understanding continue to grow. Improvements in diagnosis, a greater understanding of how medications can work together to control symptoms, and increased knowledge of the effects of the disease have allowed better management of lupus over time. Today people with lupus are leading healthier lives and living longer than at any time in history.

Sign up to receive LFA's free enewsletterStay in touch with the LFA's latest news, by signing up to receive this enewsletter.

Dear Lupus 7/8/2010

2010-07-08T12:20:00.000-04:00

7/8/2010
Dear Lupus,

Well I just wanted to touch bases with you to let you know that I can't stand you! I think that you are trying to get some of my friends and I really don't like it. You know to mess with me is one thing, to mess with my friends is something I just can't take anymore. They don't want you around and they surely will not answer the call when you ring-a-ling-a-ling. You know you have invaded my life and the life of many others way too long and I am sick of it.

I wanted to let you know we have something special for you. It is called the hem of His garment. I have touched it and fully relinquished your hold on me to the only one that can obliterate you from existence. I serve a mighty God & He doesn't stand for this nonsense. My God won't allow you to place fear in my heart or pain in my body any longer. My God will not allow you to give me a poor attitude and let you steal my joy. My God will not allow you to harbor like a house guest in my body.

I think you get the message loud and clear. If not, don't worry a prayer has already been sent and the "A" team, that's "A" for Angels, are already here watching over all who you try and harm. In due time your existence will be nonexistent in our lives.

Never Yours,

Racquel

Lupus Patient Pain Poem

2010-07-07T21:31:00.001-04:00

LUPUS PATIENT PAIN

Today was not a good day
Tomorrow may be the same way
But I must pray and pray
and hope for a better day
The pain I feel is so very real
I wish no one had to go through this ordeal
This is the life I must live
With God on my side
I know all my dreams may still be fulfilled
I must keep the faith, hope and dreams alive
And this to I will survive
I will remain calm and God will work it through
As he always do

By: Kim Graham
Lupus Survivor

Dear God

2010-07-06T09:32:00.000-04:00

Dear God,

I am sick and tired of being sick and tired. I reach forward today, touch the hem of Your garment, and receive my healing. Yes, I want to get well. I believe that this wretched lupus is removed from my body & I leave my healing fully in your hands. Give me the faith to walk in freedom and victory.

Amen

Living With Lupus

2010-07-05T09:08:00.000-04:00

Living With Lupus

When you are first diagnosed with lupus, you will probably go through a range of emotions; relief, that you finally have a name for your symptoms; worry, is lupus fatal, can it be cured, do I have to live like this all of my life?; anger, why me? All of these emotions are normal & you will probably go through many more during the course of the disease.

It can take a long time to come to terms with having lupus, knowing that there is no cure. It can have a big effect on your life & the lives of those around you. But there is hope you can live well with lupus.

It is important to accept that you have a chronic illness, that your life has changed. You will have to accept help from other people, both emotional & physical help, don't feel guilty about accepting help, you cannot expect to do everything yourself.

You will have good days & bad days, remember to take each day as it comes, if you feel tired & in pain, then rest, if you feel well enough, then you can be more active, but don't overdo things. You might not realise at the time that you have done too much, but it will catch you up later on. If necessary, lower your housekeeping standards, many chores can be done every other day or week, rather than daily weekly. Delegate - don't think that you have to do everything, other people will be only to glad to help. After all if you overdo things you will feel much worse afterwards, & less able to carry on as normal.

You may start to feel that you are not well enough to carry on with your job, either because of the pain & fatigue, or because of psychological problems such as difficulty concentrating, or depression. You may feel that you don't want to give up your job, but it is important to remember that your health comes first, & to carry on working when you are unwell can make things worse. If the situation arises, try talking to your boss, you may be able to come up with another solution, such as working less hours. Even if you do have to give up your job, it needn't be the end of the world. If money is a problem, there are state benefits available. Another option may be to look for a less demanding job, or work from home. You could look at turning a hobby into a small business. If you lose your job, don't see it as the end, see it as a new beginning, an opportunity to turn things to your advantage.

Don't turn away from your family & friends, remember that they will be worried about you, & want to help. They can be a wonderful source of support, talk to them & tell them how you feel. You may find that you gradually lose contact with friends during the course of your illness, this can be because you are too tired to participate in social activities. To avoid this from happening try to explain to them how you feel, that you are too tired to go out, suggest an alternative such as them coming round to your house. If you do lose contact with friends, you can meet new people who are in the same boat as you at support group meetings (see below).

Join a national lupus charity (Lupus Foundation of America), they will provide you with support (often locally) from people who know exactly what you are going through, and can also provide literature & books on lupus. A little knowledge is a great thing, learning about lupus can help enormously in understanding & coping with the disease. There will be support groups that you can attend to talk things over with other sufferers, talking to strangers can sometimes be easier than talking to family members.

Avoid using alcohol or tranquilisers as 'problem solvers'. They don't solve problems, & turning to drugs or alcohol can lead to addiction, as well as the very real dangers of alcohol/drug interaction.

Identify your fears. Make a list of them, & discuss with your family or friends. Together you can look for ways to deal with them, after all 'a problem shared is a problem halved'.

Lupus can affect a person's appearance, & therefore affect self-confidence, but there are many ways of solving these problems. There are many good coverup cosmetics available (also available on prescription) which can cover up rashes. Choose clothing which helps disguise or distract the eye from the effects of fluid retention & swelling. If hair loss is a problem, these days there are a lot a natural looking wigs available. If you look better, you will be less self-conscious, & consequently, feel better.

The most important thing is learn to live with lupus one day at a time.

Human Genome Sciences and GlaxoSmithKline Present Additional Data on Trials of Benlysta at European Medical Conference

2010-07-04T15:39:00.001-04:00

Human Genome Sciences and GlaxoSmithKline Present Additional Data on Trials of Benlysta at European Medical Conference

June 17, 2010

Human Genome Sciences and GlaxoSmithKline have released additional data from BLISS-52 and BLISS-76, two pivotal Phase 3 trials of BENLYSTA® (belimumab) in seropositive patients with systemic lupus (SLE). The data was presented in Rome during the 2010 Congress of the European League Against Rheumatism (EULAR). Preliminary top line data from both studies were previously reported.

Belimumab is an investigational drug and the first in a new class of drugs called BLyS-specific inhibitors. Applications to market Benlysta have been submitted in Europe and the United States. No new drug for lupus has been approved by regulatory authorities in more than 50 years.
Read the company press release about BLISS-52 additional data.
Read the company press release about BLISS-76 additional data.

Research Presented at the 9th International Lupus Congress Provides Hope and Encouragement for the Future Treatment and Management of Lupus

2010-07-04T15:37:00.003-04:00

From the Lupus Foundation of America

Research Presented at the 9th International Lupus Congress Provides Hope and Encouragement for the Future Treatment and Management of Lupus

June 24, 2010

Research presented during the 9th International Lupus Congress held in Vancouver, Canada from June 24-27, 2010 should give hope and encouragement for the future of the treatment and management of lupus to the 1.5 million Americans and 5 million people worldwide living with lupus. In recent years, there have been significant advances made in many areas of lupus research including the development of new treatments, adult stem cell transplantation, genetics, lupus-related cardiovascular disease, and quality of life issues for people with lupus.

It has been more than 51 years since the U.S. Food and Drug Administration (FDA) approved a new drug for lupus. The number of pharmaceutical and biotechnology companies that have recently reported positive results for clinical trials evaluating new treatments for lupus is a demonstration of the progress that has been made in lupus research and the development of new treatments. GlaxoSmithKline and Human Genome Sciences, ViforPharma, and UCB and Immunomedics, Inc. all recently reported promising results for potential new treatments for lupus. This is a significant step forward for lupus, which until last year never had a successfully completed Phase III clinical trial of a potential new therapy for the disease.

“We are beginning to move toward a new era for people with lupus, where lupus is a chronic, but manageable condition, and people with the disease will have the ability to maintain a good quality of life,” said Sandra C. Raymond, President and CEO of the Lupus Foundation of America (LFA). “Through its National Research Program, Bringing Down the Barriers, the LFA will continue to address the unmet need of individuals living with lupus, by working to advance the science and medicine of lupus, and focusing its support on areas of research where gaps exist in the understanding of lupus and where other public and private organizations are not focusing their efforts.”

Highlights from other areas of lupus research presented during the International Lupus Congress include:

Clinical Trial Design: Due to the heterogeneity and complexity of lupus, clinical trial design has been one of the major challenges in the development of new therapies for lupus. Some lessons learned include: the length of the trial must be considered, as some drugs may require up to five years to demonstrate efficacy; the use of cytoxan created a standard of care that is hard to surpass; the speed of drug effectiveness needs to be compared; and the trial needs to distinguish whether it is targeting mild or severe disease. Further studies are also needed on clinical trial design.

Genetics: Lupus is a genetically complex disease, which means that multiple genes as well as non-genetic factors contribute to a person’s risk for the disease. Recently, more than 20 genes have been identified that influence a person’s risk for lupus. Further research will provide targets for the development of new therapies. Eventually, genes may also be able to help predict whether a person might develop lupus later in life.

Quality of Life: The impact of lupus on a person’s quality of life and how a physician can help a patient manage their disease and maintain a quality of life has been poorly understood and under-researched. However, researchers are beginning to look at how depression, stress, and body image all affect health outcomes and a person’s quality of life. The goal of this line of study is to develop a tool that will measure a person’s quality of life, and develop targeted interventions and strategies to assist patients in managing their lupus and improve their quality of life.

Adult Stem Cell Transplantation: Adult stem cell transplantation has showed promise in research as a potential treatment for lupus, particularly for those with severe disease and major organ involvement. Data from a pilot study indicates that certain patients have achieved a sustained remission without any drugs for up to five years.

Lupus-Related Cardiovascular Disease: Individuals with lupus have significantly higher rates of cardiovascular disease. Ongoing studies are examining the role of Type 1 Interferon in causing cardiovascular disease in individuals with lupus. Type 1 Interferon is a protein that binds to certain cell receptors.

Lupus Survivors Caring for Yourself and Reducing the Stress

2010-07-04T11:49:00.000-04:00

Caring for Yourself and Reducing the Stress

Recognizing when your symptoms are getting worse and knowing how to treat them can reduce your chance of permanent tissue or organ damage. Early treatment can also reduce the time you spend on higher doses of medications, which can cause serious side effects. Working with your doctor and taking medications only as prescribed is important.

Because ultraviolet light can trigger a flare, use sunscreens with a sun protection factor (SPF) of at least 15 and avoid tanning beds even if your symptoms don't include skin problems. You should avoid being in the sun when it is at its strongest, 10 a.m. to 3 p.m.

In addition, managing lupus means taking good general care of yourself. You can take the following steps to improve the function of your immune system:

Get adequate rest and regular exercise.
Don't smoke. Smoking increases your risk for cardiovascular disease and can worsen the effects of lupus on your heart and blood vessels.
Limit alcohol. Alcohol can affect your liver, kidneys, heart and muscles, and may interact with your medications.
Eat a healthy, low salt, low saturated fat balanced diet.
Take vitamin and mineral supplements after consulting with your doctor.
If you're a woman with lupus and are considering pregnancy, seek medical counseling to determine what steps you can take to ensure the safest possible pregnancy. Planning and preparing for pregnancy can help reduce risks to you and your baby.
Regular aerobic exercise to build up endurance, and rest as needed.
Avoidance of both physical and emotional stress which may cause flare-ups.
Get enough sleep. You may be able to get by on 8 hours a night, or you may need more.
Plan for additional rest periods throughout the day, as needed.
Do not exhaust yourself.
Getting enough rest does not mean no activity at all. A well designed exercise program is important to maintaining strength, endurance, and overall fitness.
Every week, make a simple plan of your work and activities. The plan can help you organize the events of your life and ensure that you have a good balance of rest and activity.
Each day, review your plan and decide if you are physically up to the activities for that day. Be flexible; if you don't have the strength to do an activity today, do it another time.
Don't try to complete a large task or project all at one time; divide it into several steps.
Dealing with stressful issues and problems takes a lot of energy. If you feel stressed out, talk with your doctor or nurse. They may be able to provide you with help for your problem or direct you to someone else who can.
Join a Lupus Support Group .. You are not alone in this disease and the support you will receive from fellow Lupus survivors will keep your stress level to a minimum.

Immune Responses to Flu Vaccine Diminished in People with Lupus - However Vaccinations Still Recommended

2010-06-30T13:06:00.001-04:00

Immune Responses to Flu Vaccine Diminished in People with Lupus - However Vaccinations Still Recommended
July 31, 2009
Full Report Here

A new study published in the August issue of Arthritis and Rheumatism found that immune responses to the seasonal flu vaccine are diminished in people with lupus. The study was conducted by a team of researchers from The Netherlands.

According to members of the Lupus Foundation of America Medical-Scientific Advisory Council, the information provided in the article is a replication and validation of previous studies done in this area. Previous studies have shown that antibody production following flu vaccination is lower in lupus patients than in the general population. What is new about this study is that the researchers also found diminished activity among specific T-cells which are required for immunization against the flu virus. The researchers said this lower response was likely due to the medications that people with lupus take to control the disease.

Because morbidity and mortality related to influenza are increased in immunocompromised patients, it is recommended that patients with lupus get annual flu shots, which are safe and do not increase disease activity. Most people with lupus respond well enough to vaccines to provide them with protection from infection. Therefore, people with lupus should receive all vaccines that are safe (any that contain killed viruses or bacteria or proteins from infectious agent).

For people who are taking more than 10 mg of prednisone a day, or who are on Cellcept, Myfortic, Imuran, Cytoxan, methotrexate, and Arava, they should follow the advice of their physician before taking any vaccine that contains live, attenuated viruses or bacteria, such as FluMist or the shingles vaccines.

LUPUS LINKS

2010-06-30T13:05:00.000-04:00

The Lupus in Color Network has not made any determination about quality or accuracy, and does not endorse any information, service, product or company represented by these links. We are not responsible for the material at other sites to which we have established links. The information displayed by the sites listed is no substitute for expert medical care. We recommend that you discuss your condition and any information you may obtain about it with your physician.

Please view the links below for a wealth of information and support.
If you know of a site that you would like to add please let us know.

Lupus In Color
Purple Healers
Despite Lupus
Lupus Center of Excellence
Lupus Foundation of America
Lupus of Canada
Lupus Foundation of New York
Medline
Plus Lupus Information
Lupus Research Institute
Lupus Advocacy
Web MD Lupus Information
But You Don't Look Sick
Cure for Lupus
Korika L. Johnson Author
Could I have Lupus New Campaign
Lupus Tool - Could I Have Lupus?