May. 22, 2014

Lupus Awareness Month: A Testimonial Story

(Tosha Phillips - middle)

 

Written by: Katelyn Slaughter, Development Coordinator 


The month of May marks a special time of year for those affected with lupus. May is the official Lupus Awareness Month.  Whether you have fallen victim to this mysterious disease, know someone, or are a family member, you have a story that can change lives and helps us one step closer to a cure.

Over two million Americans have been diagnosed with lupus, and more than 83,000 of those are living in the Mid-South area (Tennessee, Alabama & Kentucky). Currently, only one FDA drug has been approved that specifically targets the disease, and not just its symptoms.  Most lupus patients have shared that they have been prescribed several medications to cope with the symptoms of lupus, such as muscle aches, skin complications and internal organ function, amongst many others.  As of today, there is no treatment that can cure the lupus disease.

We here at the Lupus Foundation, Mid-South Chapter have made it our mission to serve our community by bringing awareness about the disease, raising funds for a cure and providing educational services to those affected.

Since May is Lupus Awareness Month, we wanted to reach out to our community with a story that touched our hearts, the story of the daily life living with lupus.

La’Tosha Phillips called the Mid-South Chapter a few weeks ago to simply ask for information concerning the 2014 Walk to End Lupus Now in Nashville. Being the Development Coordinator, this is a common call that I receive daily about all of our five walks across our tri-state region.

But, what I thought was an ordinary call turned into something extraordinary.  At the end of our conversation, I felt that her story needed to be told. 

La’Tosha, or Tosha for short, seems like the average 36-year-old mother living in Nashville, Tennessee.  But, behind her mask, she is living with lupus. 

In 2001, Tosha was attending Volunteer State in Nashville with a goal of achieving a degree in Interdisciplinary Education when she experienced her first lupus complication. She began to experience extreme pain and constant weakness. 

When lupus patients experience a flare, it can range from mild to sever pain. And it can last one day, one week or up to one year.  No research study has been able to confirm why it is more severe is some cases and mild in others.

Tosha scheduled a doctor’s visit analyze her symptoms further.  Tosha’s doctor claimed that she was completely healthy and that she was only experiencing constipation.

Soon after finishing her final exams at Volunteer State, the symptoms returned. The pain was so severe that she immediately sought medical help.  The doctors ran a full-body cat scan and discovered a blood clot in her kidney due to renal vein thrombosis.  She was immediately rushed to the hospital. 

“It was at that moment I realized I could have died. If they had not found the clot, this [lupus] could have taken me,” says Tosha

After over a week of hospitalization, she was diagnosed with Systemic Lupus.  She was prescribed blood thinners and the lupus treatment drug, Plaquenil.

Miraculously, after the three months of being on the medications, the symptoms vanished.  How could this be? As we all know, this is one of the many mysteries of lupus. 

For seven years, Tosha’s lupus went into remission.  She established a family and has a beautiful daughter who is the light of her life.

As lupus often does, it returned to Tosha’s life, affecting more than she could ever imagine. In 2004, she was in the process of receiving her Masters from Lipscomb University to finalize her education for her teaching career.  The flares came back and were more frequent than before.

In 2010, the flares increased in pain, frequency and duration.  Tosha began to do more research on this disease she was coping with and began experimenting with different lupus medications, such as Benlysta, Lyrica and even chemotherapy.

She had to resign from her position as a teacher in 2012, only a few short years into her teaching career at Madison Middle School in Nashville. Tosha spent over ten years in Nashville’s education community.

“It was very hard to walk away from your passion, especially when I was shaping young lives and had so many eyes looking up to you. It was so rewarding,” says Tosha.

Lupus stole away Tosha’s reward in life, her passion and her career.  But, by a saving grace, she is here today to tell her story, in hopes that people, young and old will learn about lupus.

Today, she struggles with the height of lupus with symptoms such as scabbing finger tips, achy muscles and internal complications.  Her mother and her 9 ½ year-old daughter take care of her daily needs and tasks, such as housekeeping, laundry and cooking.

“I cannot use any cleaning supplies in my house and I cannot cook for my daughter anymore.  The slightest touch could make my fingers bleed in an instant, “says Tosha, “No one can understand what that is like unless you go through it. My daughter is my lifesaver at this point.”

But, there is always good news. Tosha’s kidneys are now in excellent condition and she receives a high-dose chemotherapy treatment for her lupus once a month. She simply wants to bring awareness to the national community because she is a survivor.

“I get five to ten good days now,” says Tosha about her lupus, “I’d rather have that than none.”

Tosha is only one of the thousands that live through these struggles every day.  You do not really realize what the struggles are unless you really listen to someone struggling with this disease.  The thought of simply not being able to do the dishes because of a skin reaction or not being able to drive for weeks because of muscle pain is appalling to think about. We take so much for granted in our daily lives.

I am so fortunate to have had to opportunity to sit down with Tosha so I can pass her story along to you.  She is strong, you are all strong and even stronger is the fight against this disease that we have together.  Thank you for all of your support and courage every day.

If you or someone you know is in need of assistance, please do not hesitate to call our toll free number at 877-865-8787 or email us at .(JavaScript must be enabled to view this email address).  Our trained and dedicated staff is here to guide you towards the help you need. 

Don’t forget that we hold five walks a year (Nashville, Lexington, Louisville, Birmingham and Huntsville) that allow us all to come together to walk for a cure to end lupus now!  Find the one nearest you at www.lupusmidsouth.org and register today!