Mar. 25, 2017

Why We Walk - Stories of Courage and Hope

Vonda Fife and Rasheda Green
Bella Rocchio
Cherri Simmons

Stories from our 2016 Walks

Cheryl Hall
Jowanna Daley
Chyna Everett
Yvonne Taylor
Pamela Alexander
Adam Goldberg
ShiVanda Pebbles


REGISTER TODAY TO WALK WITH US :  ATLANTA | APRIL 29TH  COLUMBUS | MAY 20TH


Vonda Fife and Rasheda Green

In 2005 I was diagnosed with lupus. I had no Idea what lupus was.  The doctors gave me several different pamphlets to read about lupus but I would just toss them in the trash. I was not ready to except the fact that I had this cruel disease. During this time, my youngest daughter Rasheda Green was my rock. Whenever I needed someone to take me to the E.R. or drive me to my many appointments she was always there for me.

In 2013, Rasheda started a new job and working a lot of overtime. She would work as many hours as she could. There was a time when she was working two jobs. She would work all night at one and go straight to the next job. One night after a full day and night at work, Rasheda came to my house. When I looked at her, I told her she needed to go to the ER immediately! I was so upset but I didn’t want to scare Rasheda, so I hid my feelings.. Just looking at her, I knew that something was not right. I was home with a lupus flare and was not able to go with her to the E.R. My middle daughter, Shalethia Green went with her. I am so glad Rasheda had Shalethia with her.

Before the doctor did any testing, he asked her if anyone in her family had lupus and she said “my mother.” When Shalethia called me and told me that they suspected Rasheda had  lupus and that her kidneys may be involved, my heart sank.  I did not want Rasheda to go through what I went through. Once she was diagnosed,  my husband Dennis and I decided it was best if I resigned from my job at the Georgia Department of Labor so I could be there for her.

The past year has been rough for Rasheda – the frequent visits to the ER, the hospital stays lasting weeks. She’s gone from zero medications to about fifteen. She’s gone from a bubbly cheerleader figure to a quarterback because of the steroids, though she still has a since of humor. Rasheda never complains about anything and she tries to be strong and encouraging when I am feeling down or even when I’m upset about what she is going through.

When Rasheda told me she wanted to form a team and participate in the Walk to End Lupus Now this year, I was so drained, but I knew I had to make it happen – for her. I reached out to my husband’s company, Miller/Zell, my family, my co-workers and friends for donations. The love, encouragement and support from everyone has been amazing! Rasheda and I are so happy to be a part of Team P.U.S.H. – Pray Until Something Happens. Something IS happening. We are bringing awareness to lupus! We feel deep down in our hearts that there will be a cure for this cruel disease soon. There has to be.

Bella Rocchio

Enough is Enough!
Lupus came into my life on a fateful day in 2010 when my mom was diagnosed. That day changed my life forever. I was only six years old then, but I still remember when she wasn’t sick. My mom was a busy doctor who loved her job delivering babies, and I would go to her office sometimes. On the way home, we would listen to Madonna in her convertible, top down, of course. I guess that’s why it is so incredibly hard for me. The thought of having a completely normal mom one minute and then a mom who spends her days in bed is unimaginable for a 12-year-old. Yet, that is how it is. One day, after tennis practice, a family friend picked me up. I asked him why. He told me that my mom was in the hospital and my dad was with her. I almost cried in front of him. But I waited until we got to my house. And then I bawled my eyes out. That is just one of the many times when I had to deal with lupus face-to-face and ask myself: Why? Fundraising has helped me with the pain that is caused by lupus. It has also helped my mom. She is able to focus on something other than the pain: she is able to focus on the joy. One of my biggest superheroes is my dad. He is able to do all the stuff that a mother AND a father could do, all while doing his job. It is really incredible that he is able to do this. His love and support has helped me and our family get through the hard times and his joy fills the good times. Last year, I decided, “enough is enough!” I held fundraisers at my elementary and middle school and raised $1,200 in the 2015 Walk, which I only learned of 3 weeks before. In 2016, I started my team early with a $3,000 goal. I held bake sales at my school and reached out to everyone I knew. I am thankful for the support of Sutton Middle School and Britt Hilton. I blew away my goal and raised $5,900! Join me in this fight today and Help us Solve the Cruel Mystery.
 

Cherri Simmons

I walk because I have lupus! I was diagnosed when I was 21. It was a extremely hard time for me - so young and so many things going on in my life...I didn't have time to be sick and hurting! I did have to give up my dream of marching drum corps - I had made the rifle line for Carolina Crown but didn't get to march since I was in the beginning of my lupus journey. I didn't know what was happening at the time...all I knew was my body would not keep up and was swelling, hurting, and locking up in my joints. I was also having crazy reactions to the sun. Well, marching band is an outdoor activity so this was an awful mix. One day after a college rehearsal, I woke up aching. At first, I thought I was just sore from rehearsal. But over the next couple days it didn't go away but instead got worse. My elbows, knees, hands, and feet were swollen and would not function - completely locked up. A dear friend of mine had come by the house, saw my condition and took me to the doctor. They thought is was arthritis. Sent me to a doctor and started meds. Over the next year it didn't get better...I struggled everyday. Decided to change doctors - a couple times! Then I found a doctor who heard my story and tested me for lupus. I was unsure of what this actually meant and what lupus really was. All I knew was that I was by far the youngest patient he was treating. I soon began learning more about it and began treatment. Over the years it has caused me so many problems and there were so many times I wanted to give up but I decided to refuse to let it control me. I almost had to give up guard all together but I fought hard! I have been teaching colorguard and marching band the last 19 years, been an elementary music teacher/chorus director for 16 years and accomplished so many things! But now my body cannot keep up with colorguard anymore. I have swapped over from teaching colorguard to being an assistant band director and focused on starting a family, which has also been a struggle over the last coule years. Lupus has definitely played a role in that too. I've had many ups and downs along the way. I've been through so many flare ups, doctor visits, tests, bloodowork, medications and days that were absolutely miserable! I've cried, prayed, and learned to deal with it over the years. I still struggle, but I feel that I'm one of the lucky ones. So many others have had much worse stories and cases. Many have lost their lives to this disease. I pray for a day when there will be a cure! Until then I fight! Discover your power and join my team, the Lupus League!

Cheryl Hall, Cobb County Supprt Group Facilitator, 2014 Face of Hope

I was diagnosed with Systemic Lupus Erythematosus at the age of thirty-two. What I am sharing with you isn’t what I remember, but rather what I was told and what I have read in my medical report. Apparently when I was thirty-one, I started going to the emergency room complaining of chest pain, being cold all the time and suffering from fatigue. It wasn’t until my first seizure that the doctors discovered my symptoms were that of lupus.

While reading my medical report, I also learned that I was treated with high doses of corticosteroids and a host of other medications just to ease the pain and keep me comfortable. After accepting the reality that I now had lupus, I had to make a complete lifestyle change by improving my diet, getting enough rest, exercising more and living as stress free as possible. I take this disease seriously and make the necessary changes in order for me to live a somewhat “normal” life.

Today, I am still on my medications. I have my good days, but some not so good days still happen from time to time. The more I follow my daily routine, the more good days I have.  These steps are necessary to avoid flare ups. While I have a loving support group of family and friends, I participate in the Walk to End Lupus Now, volunteer at the LFA Georgia Chapter office, and co-facilitate the Cobb County Support Group. I encourage everyone that I encounter who has lupus that the keys to a normal life are maintaining a daily routine and learning how to listen to your body.

 


Meet Jowanna Daley

I spent a lot of time with Tracey when my boys were in elementary school. Our youngest sons were best friends when they were young. Lupus took Tracey’s life in a terroristic fashion. It savaged her body for two years. She passed away Sunday, March 6. It shook me to the core.

I was able to see what it would look like for my family if I were to die prematurely. Her husband was in the hospital for over two weeks immediately after she was pronounced dead. They had her funeral after he was released.

I was impacted by the picture her son had of her on his Facebook. It was one he took with her not too long before she died. She was in ICU on a ventilator. He wanted to hang on to the last memory of her living.

Her husband, still unwell, courageously greeted people for two hours. I could imagine he was trying to hang on to every moment before the final goodbye. During the funeral the boys looked so bewildered and their dad lost. Even the pastor was impacted. It was the first time I’ve ever heard a preacher say what I thought … Tracey was taken too soon.

I am walking in memory of Tracey Glazener and so that no other family has to go through this.

Like a terrorist, Lupus attacks out of the blue. No organ is safe. Sometimes I get anxious and sometimes sad. This disease plays dirty little tricks on me to let me know that it is ever present and doing damage. Yet I am blessed because I am living (out loud) despite this disease.

 


Chyna Everett - Why I Walk

Why I walk, because In the beginning, it was hard to except having lupus, but over the years I have overcome it. The more positive I think the better I am with lupus and the love and support from my family friends and coworkers is amazing, which makes me strive so hard. All I want everyone with lupus, that you can not beat lupus by yourself, it takes a team of supporters! Purple heart Strong!


Meet Yvonne Taylor

Starting in 2008 my world changed forever. I started the day as normal day at work, but by the afternoon I was in severe pain. Being a healthy young adult I thought it was something I ate or potentially a bad case of heartburn. By the next day I was doubled over in agony and had to go to the ER for testing and sent home with pain pills and no diagnosis. This continued for weeks, making trips back and forth to the ER just to be sent home with more pills and no closer to understanding what was wrong with my body. After a month of debilitating pain, vomiting, and fatigue I was admitted into the hospital where they discovered that I have Lupus.

What followed was weekly visits to specialists, doctors, and an intense regimen of corticosteroids. Not only was I having trouble figuring out my body, but I also had to explain to my friends, family, and colleagues that while I looked like a “normal healthy person”, I was really in constant pain and exhausted at every type of physical activity. Just a trip to the grocery store was enough to wipe me out for an entire day.  Imagine having the body aches and pains of the Flu, the fatigue of Mono, and the nausea of a pregnant woman all wrapped into one awesome Lupus package.

While researching I found a great story that helps to explain some of the troubles of living with an autoimmune disorder. Christine Miserandino came up with a wonderful “Spoon Theory” that helps to explain how every physical activity (bathing, dressing, checking the mail, etc.) uses up your limited amount of daily energy or “spoons”. Where a healthy person can easily get out of bed and set out to conquer the world, those with Lupus have to be very aware of how much we push our bodies and how much energy we exert per activity on a daily basis.

It has been 8 years since my diagnosis and I still struggle on a daily basis with limitations, but I am a fighter and will not let this disease control my life.  I still experience setbacks and “episodes”, but with the love, support, and encouragement from family and friends I keep pushing forward. Please help to support the fight against Lupus and join our Battle of the Butterflies to put a stop to this debilitating disease!
 


PAMELA ALEXANDER - I HAVE LUPUS - LUPUS DOESN'T HAVE ME!
        
On November 8, 2012, I was diagnosed with lupus. I’d heard the word, but I knew nothing about lupus and had no idea how it would affect me and my family. I went from Pam who had already been to four stores by 10 o'clock on Saturday mornings to Pam who had to abandon my shopping cart after just five minutes of walking around Walmart.  On November 22, 2012 (around 10:30 on Thanksgiving night) God sent an angel to my hospital room in the body of Dr. Gary Myerson.  Dr. Myerson educated me and my sister about lupus and promised that he would get me back to normal.  He even overlooked the fact that I'm a New Orleans Saints fan (Who Dat!) and he's an Atlanta Falcons fan.

My initial lupus flare was long, hard, and scary. I was out of work for six months, hospitalized multiple times, and stuck with more needles than a pin cushion, but I survived! I was blessed with the love and support of my son, my extended family, friends, neighbors and co-workers. I was also blessed to have a supportive employer, great health insurance, disability coverage and an outstanding team of doctors who worked together to get me to my new “normal”. 

I fought through my fear of the scary stories about lupus and decided to get involved in the fight so that we can have a future with NO scary lupus stories.  I'm walking because I know that everyone living with lupus is not as fortunate as I was in 2012 and 2013.  I’m walking because ALL lupus patients deserve proper medical care with qualified specialists, adequate health insurance, disability coverage, job security, and compassion while we deal with the devastating effects of our illness.

It’s not too late to make a difference – personalize your page with a picture and your story of how lupus affects you and those you love.

Tell everyone – ask everyone – you never know who wants to help - people will give.

Fund a cure!

Pam


Adam Goldberg - Why We Walk


In November 2015, I was honored to receive the Tomica Gill Courage Award at the Georgia Chapter's Annual Night of Hope Gala. Take a moment to watch the 2015 Gala video featuring me and my duaghter Lilly. Since the first Walk in 2007, My team, Team ARCO, has hosted one of the highest fundraising Walk teams every year, raising more than $118,000. My wife Yvonne and our family understand the devastating burden of lupus all too well.

We must find a cure for this devastating disease! I am challenging each and every walker to dig deep and finish strong. People living with lupus deserve our best effort!! As one of the original 10-year walkers, my allegiance to the Georgia Chapter grows stronger with each Walk.

My first wife, Rachel, passed away from complications from lupus at age 32. We lost Rachel only three years after diagnosis to this terrible disease. Yvonne's Aunt Jackie sadly passed away 3 weeks before the 2010 Walk from complications from Lupus. Lupus has struck again by affecting Rachel's step-mother, Cathy.

Rachel had chronic medical issues starting in her teens and was ultimately diagnosed with Lupus at age 27. She was a loving, vibrant young wife and the mother of 17-month-old Lilly, when at a moment's notice she became terribly ill. After a 12-hour roller coaster day at the hospital, she tragically passed away at the age of 32 on May 12, 2006.

Yvonne's 45 year old Aunt Jackie battled lupus for several years. She struggled with seizures and other complications with little to no responsiveness to medications. She tragically passed away on April 19, 2010 and is survived by her husband, son and six brothers and sisters.

Cathy was diagnosed in 2010.  She has been struggling with the ups and downs that come with a Lupus diagnosis to get her symptoms under control.  Her strength is inspiring!

Since we can't bring Rachel or Jackie back and as we try and support Cathy as much as possible, we are hoping we can bring awareness to the public about this devastating disease. We must honor Rachel & Jackie's memory, honor Cathy's struggle and hopefully keep this story from repeating itself.

Please join my family and Team ARCO in our fight!

Adam Goldberg


ShiVanda Peebles- Why I Walk

My name is ShiVanda Peebles. I'm 42 years old, and I'm a 21 year survivor of lupus. I was diagnosed with SLE lupus in 1995 at the age of 21. Early in my diagnosis, I had a lot of swelling and joint pain, extreme fatigue, and hair loss. I underwent extreme weight loss, eventually dropping to just 78 pounds. I suffered through total organ failure, during which my heart failed twice. I now have permanent kidney and bone damage and underwent two  I recently had both of my hips replaced. But the hardest things I had to deal with were the miscarriages. I was unable to have children but I did carry one and gave birth to Shiman Peebles.

I've had a lot of struggles but I'm truly blessed. God continues to keep and bless me. My faith in God has brought me through everything I had to endure and strengthens me every step of the way. I have a great support system in my parents, sisters, family, friends, and most important my husband, my high school sweetheart. I'm so thankful for life and I'm going to live it to the fullest. Live, love and be happy!!!

I walk because we must find a cure for this devastating disease! I am challenging each and every walker to dig deep and finish strong. People living with lupus deserve our best effort!

Please join my family and Shi's Butterflies in our fight!
- ShiVanda Peebles


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