From The Pen Of A Survivor

DLE (Discoid Lupus Erythematosus)

I remember the day (several years ago) when I was diagnosed with a disease that affects the skin
Although less serious than SLE it results in the sun not being your friend
For years I’ve tried to ignore it and not claim it as my own
It became evident as the scars became apparent and as time went on the lesions started to grow
I mean how can I ditch the sun which puts a smile upon my face
As it shines on me now those once happy beams have now become deadly rays
The doctor says I need medication to help combat the symptoms
But the affects of the drug are far worse than the disease itself and to make myself sicker to become better to me seems dumb
The days when I am in pain I try to smile a little bit more
Although I move a little slower I keep what I am feeling behind my closed door
I hide the scars, pull my hair back and pray that the symptoms subside
And pack on the sunscreen before I go outside
Grab my big brimmed hat and cover up as if it’s raining so my skin can hide
And pray to God daily for those who are sharing the ride.
~By Chenelle Marshall

Seal's scars are a result of DLE

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LIFE WITH LUPUS ~ How to live it more positively

Truth is, the reality of living & dealing with lupus can be HARD.  But, there are some things you can do to make life easier and more enjoyable for yourself.  SAL wants to remind you to take it one day at a time and enjoy the little things in life.  Some of the strongest people I know live with lupus, they have families, successful careers, are students at university, professors, doctors and the list goes on..... positively

Know that you can live a normal lifestyle and do extraordinary things, you may just have to work a little harder at it, but do so cuz YOU CAN.  

Some KEY elements to being completely strong are to work on your spiritual, mental and physical health. Eliminate the things that cause stress in your life, that includes people, work, bad habits and anything that may add extra stress to your life.  

Do at least one thing that puts a smile on your face or lifts your spirit each and everyday.  

Live each day with purpose, have faith that your situation will get better, and surround your self and life with great people who are supportive and loving.   Life is a journey, although hard, remember to make it a enjoyable one.  Have an FABULOUS day!!

For more encouragement check up out & 'LIKE' our SAL Facebook Page

Brooke's Journey ~ Newly diagnosed with Lupus

Hello Family and Friends! For those of you who may not know the details of my story, here it is from beginning to present.

My journey began one year ago, March 2010. I had recently given birth to a beautiful baby girl and was determined to lose the extra 20 pounds of left over baby weight. My husband, being supportive, suggested we join the local gym. We began exercising 3-4 times per week, eating healthier, losing the pounds, things were going great. Until one evening, while running on the treadmill, I was suddenly light headed, nauseous, my vision was blurred, and I had a tingling sensation in my head and neck. I nearly fainted and I fell off of the exercise machine.  I thought maybe I didn't drink enough or eat enough that day.... But the light headedness and blurred vision continued for several days. We had planned a weekend trip to the ocean with the kids. I ended up in the ER a few hours before we had planned to leave. The ER doc said I had vertigo, gave me some pills and sent me on my way. I spent the entire weekend in the hotel room, sleeping, worrying, and in pain. My general physician suggested that I might be exhausted due to exercising, work, and having a new baby, he sent me on my way. It rapidly progressed and within a week I had a constant tension headache, fevers, chills, constant sweating, balance issues, spontaneous vision loss, and complete numbness of my arms and/or legs on occasion. I made MANY trips to the emergency room for fear of a possible stroke or heart attack, tests were always normal. Lupus affects my central nervous system, which can be devastating if it's not carefully managed and closely monitored. Two months after the initial symptoms began, my joints started to ache and burn severely and I began having trouble holding my hair dryer up for more than a couple of minutes because my muscles were extremely weak. Some days it felt impossible to get out of bed. After 4 months of ER visits, cat scans, EKG's and doctors who wouldn't listen to me... I took matters into my OWN hands. I spent many hours googling symptoms and searching for possible answers. I had never even heard of lupus before last year. I narrowed the possibilities down to three conditions, multiple sclerosis, lupus, or hypothyroidism. I demanded my general physician test me for those things and I received my results within 5 days. Positive for lupus. That was July 18th, 2010, the day EVERYTHING changed. Finally my symptoms had a name, finally I could begin fighting for my life. The many medications I take to control this disease come with their own nasty symptoms. They also have major side effects on my body and my mood. I have developed asthma and other secondary conditions as a result of lupus. My wonderful husband and children have been forced to adjust to a new life as well. They are amazing and I would be so lost without them! I will not say this disease is easily managed, mentally nor physically, but I have learned to LIVE my life with lupus and life is BEAUTIFUL! Thank you for your continued support throughout this journey, thank you for the encouragement and thank you for walking alongside me to create awareness, raise donations, and pray for a cure! 

My Personal ID Number is WAS-720035

You can make a donation to my personal fundraising page by clicking on Donate Now or "Make a Gift." I hope you will join me in my fundraising efforts.   

CLICK HERE to view our walk invite on Facebook

To join Sisters Against Lupus CLICK HERE & 'LIKE' our Facebook page

WALK FOR A CURE ~ May 14th, 2011

On Saturday, May 14th 2011, Sisters Against Lupus (SAL) will be participating in the Seattle Walk with Us to Cure Lupus Walkathon hosted by the Alliance for Lupus Research (ALR).  We would love to have your support by Walking with US and/or donating.  Every dollar adds up and every dollar counts.  

Click on the link below to register and/or donate:

Walk 4 A CURE: May 14th, 2011

WE CHOSE TO WALK FOR ALL OF THOSE WHO COURAGEOUSLY BATTLE LUPUS EVERYDAY!!

 Unite with US

TOGETHER,WE MAKE A DIFFERENCE!!

* Lupus is a chronic autoimmune disease in which the immune system turns against the body's own cells and tissues, causing inflammation and tissue damage.

* Over 1.4 million Americans suffer from lupus, making Lupus more common than leukemia, muscular dystrophy, cerebral palsy, multiple sclerosis and cystic fibrosis.

* The exact cause of Lupus is unknown

* Lupus has no cure

CLICK HERE to view our walk invite on FB

To join Sisters Against Lupus CLICK HERE & 'LIKE' our Facebook page

Brookes's Journey

Hello Family and Friends! For those of you who may not know the details of my story, here it is from beginning to present.

My journey began one year ago, March 2010. I had recently given birth to a beautiful baby girl and was determined to lose the extra 20 pounds of left over baby weight.  ~Brooke

The rest of Brooke's story will be posted Monday 4/18/2011

Her walk is one that will move, encourage you and bless you. 
Stay tuned.......

TIL DEATH DO US PART ~ Mothers day weekend

Sisters Against Lupus is honored to be apart of this amazing production to spread awareness about Lupus.  SAL is always looking to venture out to places where large crowds are gathered to share what we desperately need people to understand.  Lupus is a silent killer & it's up to US to  educate our community about what lupus is and what the symptoms are.  We share our own testimony to show that there is more to life then Lupus, and in doing so, we are encouraging and giving hope to those courageously living with Lupus.  

	Saturday, May 7 @ 2pm Sunday,  May 8 @ 8pm  Paul Robeson Performing Arts Center    8815 Seward Park Avenue south Seattle, WA

"Till Death Do Us Part", an entertaining modern melodrama written and presented by Anthony Davis, Jason Fredericks, and Kevin Fredericks

Directed by Anthony Davis, the play features an array of independent performing artists from the Seattle/Tacoma area, including Michelle Lang of Michelle Lang and Still Water; Jonathan Phillips of S...olstarr; Tiffany Wilson, and Jennifer Newberry.

The production features entertainment newcomer, Danielle Embry, who will play the lead role of Kendra. Anthony Davis and Kevin Fredericks also star as the always unpredictable, funny, and crazy comedy duo Clayton and Earl.

"Till Death Do Us Part" unfolds as Kendra (Embry) plans the final details of her wedding to Malik (Phillips), a very ambitious journalist who is also the father of her unborn child. The wedding has brought her single, career driven elder sister (Wilson), recently divorced parents Kayla (Lang) and Rueben (J.Fredericks) back in the same room for the first time since the separation.

Taking place in "Fresh Cup", a small business owned and operated by Kayla, the audience will experience as this family struggles through morals, infidelity, engagement, and love.

Get your tickets NOW by clicking on the link below:
http://www.brownpapertickets.com/event/123836

Or CLICK HERE  to view the Facebook invite

Make sure to check out www.thirdlevelevents.com to keep yourself updated on all events.   

Be blessed!

Decide Right NOW!

Hello Lupus Survivors, Advocates & Supporters!!! Hoping your day is FREE from stress, pain & apprehension.  Decide to make it a great day & it will be.  All that to say, decide RIGHT NOW to fuel your day by filling it to the rim with JOY, POSITIVITY & HAPPINESS!!

My Testimony ~ Kawanna Perine

I was told today to never get tired of telling about the goodness of God and what He has done for me.  There's always somebody who hasnt heard my story. So here it is again: I still remember like it was yesterday, I woke up one morning and couldn’t move a muscle. My hands, knees, ankles and feet were swollen. I couldn’t even dress myself or comb my hair to get to the doctor. After being wheeled into Dr’s office, that day was the beginning of my new life with Lupus. And although I had suffered many years of pain and the rollercoaster ride of “you do have it, you don’t have, it’s a possibility”…..it was still very gut wrenching to hear the words “Maam you do in fact have Lupus”. This was the summer of 2006, age 29. The first nine months was the most horrible period of my life!! I endured countless number of doctor’s visits, numerous changes in medications, painful blood tests (sometimes on a weekly basis). And as if several months of this weren't enough, I was then told by my doctor that "we need to take more drastic measures to hit this thing head on". The Lupus had began to overtake my body. Two weeks after my 30th birthday the "drastic measure" was chemotherapy (In some Lupus cases chemo is used as a method to decrease abnormal activity in the immune system). At this point I had so many mixed emotions. I went from being scared to death, to being angry with God for allowing this to happen to me. I successfully completed 5 months of chemo (2-3 months sooner than they had expected). After the chemo I was now facing a new set of challenges, which included extreme weight loss & weight gain, hair loss, low self-esteem etc. A few months later God really began to deal with me......even in my broken state of mind. Just as plain as day God said, "This is bigger than you, I need YOU to pray for those who are not able to get a prayer through, I need YOU to lay hands on those who may not know ME as a healer". I'm no fool; I got busy soon after that!! I told God as long as He gave me movement in my body and gave me the words to say I would be a vessel. Now almost 4 years later I've been speaking out against Lupus at various churches, health fairs, concerts, comedy shows, boys & girls clubs......to anyone who will listen. And just when I got up, got busy, practiced forgiveness, MY MIRACLE CAME!!

Listen to how I got my healing by clicking on the link below:

My story on You Tube 

Join me and thousands of my SALs on

MAY 14th, 2011 as we walk for a cure

By simply clicking on the link below:  

Walk 4 A CURE: May 14th, 2011 

Team Koopie Walking 4 A Cure May 2010

Or CLICK HERE 

to view our walk invite on FB

 To join Sisters Against Lupus  CLICK HERE & 'LIKE' our Facebook page

Unite with US & Join the Quest for a Cure! WALK 4 A CURE ~ MAY 14th, 2011

Many of you already know that Team Selam & Team Koopie merged to birth Team SAL (Sisters Against Lupus) and the rest is history.  SAL is committed to educating communities about lupus, raising funds for research and restoring hope in the lives of those who battle this illness.

On Saturday, May 14th 2011, Sisters Against Lupus will be participating in the Seattle Walk with Us to Cure Lupus Walkathon hosted by the Alliance for Lupus Research. We would love to have your support by Walking with US and/or donations from your friends and family in support of this great cause.

WE CHOSE TO WALK FOR ALL OF THOSE WHO COURAGEOUSLY BATTLE LUPUS EVERYDAY!!

Unite with US on MAY 14th, 2011 as we walk for a cure

Click on the link below to register and/or donate: 

Walk 4 A CURE: May 14th, 2011 

Team Koopie Walking 4 A Cure May 2010

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Team Selam Walking 4 A Cure May 2010

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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SISTERS AGAINST LUPUS

  CLICK HERE to view our walk invite on FB

 To join Sisters Against Lupus  CLICK HERE & 'LIKE' our Facebook page



* Lupus is a chronic autoimmune disease in which the immune system turns against the body's own cells and tissues, causing inflammation and tissue damage.

* Over 1.4 million Americans suffer from lupus, making Lupus more common than leukemia, muscular dystrophy, cerebral palsy, multiple sclerosis and cystic fibrosis.

* The exact cause of Lupus is unknown

* Lupus has no cure

Spreading Lupus awareness to women who are NOT EASILY BROKEN!!

We are not only looking forward to spreading lupus awareness tomorrow to all the women who are attending this "Big Hat Affair" who are NOT EASILY BROKEN but is looking to get blessed by it.  We are so thankful and honored to be apart of Gamma Pi 1st Annual "Big Hat Affair".  

April 9, 2011 1-4PM

If you need or want to attend this uplifting luncheon click on the link below for more information.

Big Hat Affair ~ A powerful uplifting luncheon!

What are the Sysmtoms of Lupus?

Lupus is a chronic inflammatory disease that can affect various parts of the body, especially the skin, joints, blood, and kidneys.

What are the Symptoms of Lupus:

Because lupus can affect so many different organs, a wide range of symptoms can occur. These symptoms may come and go, and different symptoms may appear at different times during the course of the disease.

The most common symptoms of lupus, which are the same for females and males, are:

* extreme fatigue (tiredness)

* headaches

* painful or swollen joints

* fever

* anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)

* swelling (edema) in feet, legs, hands, and/or around eyes

* pain in chest on deep breathing (pleurisy)

* butterfly-shaped rash across cheeks and nose

* sun- or light-sensitivity (photosensitivity)

* hair loss

* abnormal blood clotting

* fingers turning white and/or blue when cold (Raynaud’s phenomenon)

* mouth or nose ulcers

Many of these symptoms occur in other illnesses besides lupus. In fact, lupus is sometimes called "the great imitator" because its symptoms are often like the symptoms of rheumatoid arthritis, blood disorders, fibromyalgia, diabetes, thyroid problems, Lyme disease, and a number of heart, lung, muscle, and bone diseases.

Source: Lupus Foundation of America

Big news today!

click HERE to read the BIG news

 

"With wings of Faith, you can rise and soar." by Angela Martinez  

Stay encouraged and be blessed!!

DIFFERENT FORMS OF LUPUS

Lupus is a chronic inflammatory disease that can affect various parts of the body, to learn more about the different forms of lupus click the link below.

CLICK HERE

Source:  http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnunderstanding.aspx?articleid=2234&zoneid=523

Living Happy with Lupus

To live a happy life with lupus, you need to embrace the "new normal."  Lupus isn't all of who WE are.  We need to continue to live our lives fully.

                                                   Cindy Coney, M. Ed. - Diagnosed with Lupus in 1980