Thursday, April 28, 2011

A woman is like a tea bag

~ You can't tell how strong she is until you put her in hot water. - Eleanor Roosevel

STOP saying "I can't make it through this trial, I'm not strong enough or why me??" Our trials are what makes us stronger & without them we would not appreciate brighter days. You are never giving more then you can handle so shift your attitude & see what happens. Today Know you CAN & WILL make it through ANYTHING!! 

10 Basic Facts About Lupus


Lupus is a complicated disease. 
Whether it has been suggested you may have lupus, or you have a definitive diagnosis, you should know these 10 basic facts about lupus.

1 - Lupus is an autoimmune, rheumatic disease.
In lupus, the immune system of the body attacks its own cells and tissues. Specifically, the joints, skin, kidneys, lungs, heart, nervous system, and other organs of the body are affected.
2 - There are five types of lupus.
    * Systemic lupus erythematosus - affects joints and organs
    * Discoid lupus - affects the skin
    * Sub-acute cutaneous lupus erythematosus - characterized by a specific, non-scarring skin lesion
    * Drug-induced lupus - develops after a drug reaction
    * Neonatal lupus - affects newborns
3 - Ninety percent of lupus patients are women.
Lupus affects roughly 9/10 times as many women as men. Most often, lupus develops in people 18 to 45 years old. Though lupus is most prevalent among women, it also may affect men and children, as well as people of all ages.
4 - There are 11 American College of Rheumatology criteria for Lupus.
Lupus is differentiated from other connective tissue diseases, based on eleven criteria offered by the American College of Rheumatology for classification purposes.
    * Butterfly-shaped rash across cheeks and nose
    * Scaly disk-shaped rash on face, neck, ears, scalp, chest
    * Sunlight sensitivity
    * Mouth sores, tongue sores, inside nose sores
    * Arthritis pain in joints
    * Pain in chest and side when breathing or moving
    * Kidney problems
    * Neurologic problems
    * Blood problems such as anemia, low white cell count
   * Immune system malfunction
   * Antinuclear antibodies
It is recommended that if you have four or more of the eleven criteria, you should consult with a rheumatologist.
5 - Lupus diagnosis may be difficult.
Lupus is considered an unpredictable disease, with no two cases exactly the same. The unique pattern of symptoms associated with lupus has caused some to say that lupus is like a snowflake. No two are alike. There are several symptoms of lupus which mimic other rheumatic diseases (e.g., severe fatigue), making the diagnostic process difficult.
6 - Lupus treatment depends on symptoms and severity of symptoms.
Conservative treatment with NSAIDs (i.e., nonsteroidal anti-inflammatory drugs like ibuprofen) and plaquenil may be appropriate for lupus patients with non-life threatening symptoms such as joint pain, muscle pain, fatigue, and skin rashes. More aggressive treatment which may include high dose corticosteroids or immunosuppressive drugs is used when there are severe organ complications. The benefits and risks of treatment must be weighed by each patient and their doctor.
    * Lupus Treatment Options
    * Lupus Poses Many Challenges
    * Lupus Medications - What Are My Options?
7 More then 1.6 million people across the nation have lupus.
Approximately 70 percent of lupus cases are systemic. In 50 percent of those cases, it is a major organ which is affected.
8 - Certain races have an increased risk of developing lupus.
lupus is two to three times more prevalent among people of color, including African-Americans, Hispanics, Asians, and Native Americans.
9 - The majority of lupus patients lead normal lives.
With careful monitoring of lupus, and treatment adjustments as needed, most lupus patients lead normal lives. There may be some limitations and the disease may impose restrictions at times but with good disease management quality of life can be sustained. The worst adversary comes from within, when the patient loses hope, loses will, and gives in to frustration and depression.
10 - A rheumatologist is a medical doctor who specializes in treating arthritis and other rheumatic conditions, including lupus.
Your primary care doctor can refer you to a rheumatologist , or you can get an appointment through self-referral if your health insurance allows it. Evaluation by a rheumatologist is important so that a patient can develop a treatment plan.

Wednesday, April 20, 2011

THIS IS MY STORY ~Selam Bereket


I was diagnosed with SLE ~Systemic Lupus Erythematosus as a young adult at the age of 15.  Prior to being diagnosed I underwent a verity of different tests to determine what it was that I had.  I was constantly in and out of hospitals.  Every day was a challenge because I was so weak and unable to do much for myself.  I was extremely fatigue and couldn’t understand why my body was swelling when I didn’t have much of an appetite, I felt like a balloon ready to explode at any given moment.  After several months of testing, they determined that I had a severe case of Lupus.  The Lupus attacked my kidneys and I was face with two choices: to do chemo therapy for three years or to start dialysis right away three times a week.  It was hard to accept all that was happening to me but I decided to do chemo therapy instead of kidney dialysis.   
Emotionally I was drained having to go through this at such a young age; I was unable to go to school so I took time off.  I did home school until I was able to feel better, once I felt a little better I began going back to school part time.  Once I completed my treatment, my kidneys returned back to full function and I was able to live a more normal life, but with medications of course.  I was able to finish high school, attend Portland State University and complete a BS in Health Science with a concentration in Community Health and minor in Communications.   Growing up, I had a lot of ups and downs.  I remember countless times where I was unable to get out of bed, even the thought of lifting a finger was painful; every joint in my body ached extremely bad, it felt like needles and pins stabbing me (the pain was unbearable).
During December 2008, I started feeling ill; I woke up one morning unable to barley open my eyes because my entire face was swollen.  My sisters rushed me to the emergency room in which I stayed there for over two weeks.  I felt as if I was re-living my childhood experience again, when I find out that my kidneys were being attacked by Lupus.  I came home after being discharged only to come back the next week with my whole entire body being swollen yet again, I gained over 20 pounds in fluid.  A few months down the road, I started chemo therapy once again, this time only for six months.  Unfortunately this time, the chemo therapy was unsuccessful.  The next step was just to try high doses of immunosuppressive mediation (which I have been on many years), which led me to be more sick and left me going in and out of hospitals.  My kidneys were failing fast; in November 2009 my kidneys shut down and I immediately was put on emergency dialysis where a catheter was surgically implanted in my neck and ran to my heart to dialysis with.  With this catheter, you are not able to get it wet as you are easily able to get an infection and die from doing so.  I have had to surgeries to get a fistula in place (one to connect my artery and vein together, the other to bring it up to the surface).
Lupus has affected me in MANY ways, it is holding me back from living my life fully.  I am in constant pain each and every day.  I have been on prednisone (a type of steroids) for ten years, this mediation was what made my bones brittle and weak.  Taking prednisone for so long is how I had three compression fractures on my spine, which left me in inconceivable pain and at bed rest for months on end.  I am still currently on dialysis three times a week for four hours each visit.  I wish that there was an organization that directly could have helped and other lupus patients with any financial needs, support and education awareness.  While growing up, having an organization like Sisters Against Lupus would have positively impacted my life in a lot of ways.  By Selam Bereket

Click on the link below to register and/or donate:
  
CLICK HERE & 'LIKE' our SAL Facebook page

Tuesday, April 19, 2011

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:

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

Did you know??

That over 1.5 million people have Lupus?  
Its more prevalent in African Americans, Hispanics & Asians?? 
Symptoms range from mild to life threatening. Thousands die from complications each year. Join Sisters Against Lupus as we Walk To Cure Lupus! Click on the link below to Walk or make a donation on our behalf.

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









'LIKE' our SAL Facebook Page





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

Monday, April 18, 2011

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

Thursday, April 14, 2011

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:

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

Wednesday, April 13, 2011

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!

Monday, April 11, 2011

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!!

Friday, April 8, 2011

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:  
Team Koopie Walking 4 A Cure May 2010


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: 
Team Koopie Walking 4 A Cure May 2010
+
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!