Lupus warriors fight disease with hope

Highland Lakes Newspapers office manager Kim Green, a lupus survivor.

By Savanna Gregg

Burnet Bulletin

Every day, more than a million Americans and five million people worldwide spend their lives battling lupus. Lupus, an autoimmune disease that targets men and women from teens to adulthood, leaves its victims with a lifetime of complications many are unaware of until they have walked a mile in the shoes of a “Lupus Warrior.”

May is Lupus Awareness Month, and a few local warriors are on a mission to bring the issue to light, and share their stories with those who might be living with the same disease, or may want to learn more for the sake of a friend or relative.

Highland Lakes Newspapers' business manager Kim Green, who has been living with lupus for 24 years, discussed the complications caused by lupus and expressed the importance of sharing the information in hopes of spreading awareness for herself and others. Green is fighting a long, hard battle with systemic lupus erythematosus, a form of Lupus that targets major organs in the body. 

“What it means to have lupus is that your immune system is amazing,” Green said. “My doctor explained to me that my immune system is an army, but when you have lupus, your army is drunk and they have no idea what they are doing. Your immune system fights off all of the bad stuff, but it can't identify the good from the bad, so it attacks everything.”

Though Green was diagnosed with lupus at age 24, she is thought to have experienced symptoms from age 13, and even suffered seizures when she was five years old. 

“We knew something was wrong, but lupus was not well known back then,” Green said.

As things progressed, more serious events affected her body over time; Green has suffered a heart attack, two strokes, pulmonary embolisms, and three cases of pancreatitis. Green also experienced various kidney problems and lost a baby due to an ectopic pregnancy rupture.

During a more recent stage of her battle in 2013, Green was given three months to live and put into hospice care, but her daughter Cierra Jones, who was three years old when her mother was diagnosed with lupus and is also living with an autoimmune disease, took the reins and became her full-time caretaker.

“My gastrointestinal system was failing,” Green said. “I couldn't eat anything and had to have all of my vitamins and medications injected through a PICC line.”

Green was then put on a drug called Benlysta, moved with her daughter to Texas in September 2013, and in November 2013, she was able to begin eating on her own again; Green credits Benlysta as a life saver.

Today, Green talks about her struggles in the past, and how she learned to cope with her new lifestyle and continue fulfilling her dreams.

“Once I realized it is not fixable, I had to come to terms with it,” Green said. “How do I live with it? How do I raise my children, run a business with this disease? It's all about not letting yourself stop.”

“You know the saying, 'a body in motion stays in motion,'” Green added. “You need to stay positive even when it is hard to work. Keep your mind busy and try not to dwell on the negative or it will take over your life.”

Green now oversees the bookkeeping and circulation department of the Highlander and Burnet Bulletin, and relies on the busy nature of her career to help her cope with the pain and discomfort she feels daily.

“It feels like you have the flu every day of your life,” Green said. “I wake up with a low-grade fever every morning, my joints ache, and I have inflammation. Some days I can't get out of bed to come to work, but most days I get up and keep myself moving to take my mind off of it.”

Green said that people with lupus are the best liars, referring to the millions of people who, like herself, walk the earth with a smile on their face to hide the pain they are feeling in their bodies.

“We learn to live with what we've been given, and we look fine on the outside and don't let others know how badly we feel,” Green said. “People don't realize how much work it takes to stay 'me,' but I stay positive. Many people have a hard time coping with lupus and the symptoms, but God has really protected me from the depression that frequently comes with it.”

Teen warrior

Another “Lupus Warrior” who was recently diagnosed with the disease is in the difficult process of coming to terms with her diagnosis, and Green offered words of wisdom and coping ideas to try and make the process easier. Fourteen-year-old Daviona Castillo of Burnet was diagnosed with lupus in November 2017.

“It was around her birthday time in September when we noticed she was more sluggish,” said Daviona's mother, Patty Castillo-Garcia. “She said she was hurting, having trouble holding things, and when she couldn't open the handle on my car door, I knew something was wrong.”

After her diagnosis a few months later, Castillo has dealt with lupus and the complications that accompany it, including Raynaud's disease, fibromyalgia, and rheumatoid arthritis. She was just recently released from Dell Children's Hospital in Austin after a 2-½-week stay following an infection that got out of control due to her lupus.

Castillo has undergone two chemotherapy infusions since her diagnosis and now takes 15 medications in the morning, four during the day, and 11 at night to help alleviate her pain and discomfort.

Castillo is unable to go to school due to the pain she experiences from constant activity, or a task as simple as holding a backpack. She has spent her eighth grade year in homebound schooling, and experiences loneliness in addition to her discomfort as she is unable to socialize with friends on a regular basis.

“She can't be a normal teenager and that has just been rough,” Castillo-Garcia said. “She has always wanted to be in the Marines, to follow in the footsteps of her sibling. After being diagnosed, her doctor told her that can't happen. It was a really devastating blow.”

Green offered some advice to Daviona, hoping a little insight from someone fighting a similar battle will help her feel more comfortable.

“You're asking why you've been diagnosed with lupus,” Green said. “It is because you are tough enough to take it; you are a warrior. Our life is different now; you have to adapt and overcome.”

Coping with stress and anxiety is another talent Lupus Warriors must become experts at, and Green offered Castillo her method of overcoming those parts of the battle.

“You have to find moments of peace, happiness, and joy to keep the depression from taking over,” Green said.

Being diagnosed with a complex disease like lupus at such an early age can be intimidating and at times disheartening, but after talking about their experiences and exploring ways to fight their demons, Castillo and Green expressed an interest in assembling a support group for those battling lupus and other autoimmune diseases.

After doing some research, Castillo-Garcia realized there is not a support group of any sort in the Highland Lakes area and wishes to get something started.

“If we can get a group together to go to a movie, or just hang out and talk so Daviona just isn't so alone, that would be wonderful,” Castillo-Garcia said.

Green and Castillo-Garcia are asking any Highland Lakes area residents who are suffering or know someone suffering from lupus and any other autoimmune diseases to contact them if they are interested in joining a support group, or have advice they would like to offer.

“We need support,” Green said. “If people could just understand what we go through every day, it can make a difference.”

Kim Green may be reached at kim.green1013@gmail.com and Patty Castillo-Garcia may be contacted at sissymgarcia@gmail.com.

To learn more about the different types of lupus and the millions of people it affects every day, visit resources.lupus.org.