How One Working Mom is Moving through Her Life with Lupus

From finding a diagnosis in a maze of seemingly invisible symptoms, this New York powerhouse found her way forward.

Lupus is the type of illness that comes with more questions than answers; the only certain thing is a new normal. Meet Kelly L., a former Global Talent Manager turned Vice President at a national financial planning company, and new mother who has spent nearly two decades navigating that new normal.

Looking at the 39-year-old New York success story, the last thing you would think of is illness. It is early morning; she is fit, tall, and arguably stunning, walking her dog and her son through a river-side park. She has already had her coffee, checked her email, and swallowed the steroids she takes every morning to manage her symptoms.

 

Lupus symptoms can be invisible.Kelly L on front stoop of her home.

Ten years after being diagnosed with Lupus, Kelly has learned to live with her illness. “I just keep moving forward,” she tells me, matter-of-factly. In five years of friendship, it’s the first time I’ve asked her about what it’s like to have the disease. “I would be in Brussels or somewhere, and I couldn’t breathe, but the doctors knew I didn’t have a pulmonary embolism, so I thought ‘OK, well I’m not going to die,’” she told me. “You just sort of go on with your life. I had responsibilities.” 

 

The Maze Toward a Diagnosis

Kelly’s breathing problems led to a pleurisy diagnosis, which led doctors to suspect Lupus. A chronic autoimmune disease, Lupus triggers inflammation in different tissues throughout the body, affecting different people in different ways; symptoms can range from mild to life-threatening. The most common type of Lupus is Systematic Lupus Erythematosus (SLE), in which the immune system attacks its own tissues. SLE can affect the skin, joints, lungs, kidneys, blood vessels, and brain. Other types include: Chronic Cutaneous Lupus Erythematosus (CCLE, also known as Discoid Lupus Erythematosus or DLE), subacute cutaneous lupus erythematosus (SCLE), and Tumid Lupus. While there is no cure for Lupus, medical and lifestyle intervention can help to control the disease, which affects 1.5 million Americans, primarily women of child-bearing age, according to the Lupus Foundation of America.

For Kelly, the official diagnosis came seven years after she began to feel sick. She spent most of her 20s moving through what she refers to as cycles of fevers, night sweats, aching joints, exhaustion, and difficulty breathing. Lupus is a bit like cancer in the sense that there are different types, but unlike cancer, doctors don’t yet have a specific way to test for it or to differentiate the types; there’s a lot of trial and error. So after an arsenal of medical tests came back negative, Kelly battled with the frustrating feeling that maybe she was just crazy. 

But she wasn’t crazy, she was sick. Like other autoimmune disorders, Lupus can seem invisible and vague symptoms, such as fatigue, can be easily dismissed if you aren’t vigilant with yourself and with your doctor. “You have to be your own advocate,” Kelly tells me. “And if you can’t be your own advocate, find someone to advocate for you. Don’t be afraid to ask questions and if your doctor doesn’t answer them, find a different doctor. Ask all the questions and get multiple opinions.” 

 

Managing work and family with Lupus can be challenging.Kelly L on the beach with her dogs.

Work & Family Life with Lupus

Lupus can be invisible to the people in your life, especially if you are someone, who, just keeps moving forward. “It ruined the relationship I was in,” Kelly tells me with the same even tone, “He was completely supportive, he just couldn’t give me what I needed. The person I was pre-lupus and the person I was post-lupus was very different.” She called off her engagement and began to withdraw from most of her friends as well. “I just felt very lost.” 

   

Early after her diagnosis, Kelly met with doctors to find a treatment plan that worked best for her. She began with the least severe approaches, relying primarily on steroids that had side effects mainly limited to weight gain. Work became a sort of life-raft, she describes. Gradually, who she was and what she did became totally entangled. “I probably worked harder at my job than ever before; I just needed something. My work became my identity.” Trying to get a grip, she ending up hiding from her personal life. 

“Everything about Lupus is ‘There are no answers,’” she explains. “Doctors will say, ‘We don’t know what’s going to happen to you. We don’t know how sick you are going to be. We don’t know what treatments to give you. We don’t know if your kidneys are going to fail. We don’t know if you will be able to have a baby. We don’t know if you will ever feel better.”

Remission, Pregnancy, and Finding Hope

Fortunately, for Kelly, she did start to feel better. Four years after her diagnosis, the immunosuppressive drug Benlysta (belimubab) targeting Lupus became available; the medication is typically taken via self-injection or through an IV infusion administered by a medical professional. “For some reason, it worked really well for me and most likely because it works for whatever type of lupus I have,” says Kelly, who went into remission.  

For the next four years, she visited her doctor for regular infusions to remain in the medical-induced remission state. She was 37 when she got pregnant with her son. “Lupus can make pregnancy more difficult and riskier, but not necessarily impossible,” she tells me, while still insisting that each woman should consult with her doctor. Kelly is adamant about the need for a high-risk OB and a rheumatologist who you feel comfortable with.

“Be in the best health possible and, be prepared for the unexpected. It may not be an easy journey,” Kelly advises to those with Lupus who may be considering pregnancy. For instance, her pregnancy included worsened Lupus symptoms, bleeding problems, and preeclampsia. While pregnancy may be easier during remission, always check with your doctor if you have Lupus and are considering getting pregnant.

 

Keep Moving Forward

 Following her son’s birth, Kelly’s symptoms lessened, and she remained in remission. Currently, she takes only steroids and anti-malaria medication to manage her symptoms, which include severe fatigue and joint pain. She remains committed to a healthy lifestyle that includes stress management, proper sleep, a healthy diet, and exercise. “When I start to feel bad, I need to get sleep and adjust my steroids,” she explains. “ Lupus is sort of like a fire, once it gets out of control it takes a while to stamp it out again.” For this reason, she surrounds herself with the best medical care possible, including a pulmonologist, cardiologist, ophthalmologist, dermatologist, and rheumatologist. “Every six months, I pee in a cup,” she tells me, laughing. 

“When you first get Lupus, it is really scary and it’s this unknown, but eventually, you learn how to build a life with an illness,” Kelly tells me. “I think it has made me a more empathetic human.”

Kelly has been fortunate to have access to some of the best care available for Lupus patients. For many others struggling with the disease, proper care may feel out of reach. But remember the importance of advocacy and keep in mind that there are many resources available to you, including the: 

In addition, keep in mind that research is ongoing and treatment options are constantly evolving. Ten years ago, Kelly avoided telling her team at work about her Lupus. “I didn’t want to seem weak. But, it didn’t make me weak; it made me stronger.” By the time she transitioned to her new job, Kelly learned not to hide her Lupus. “There were times that I couldn’t go to work and people needed to understand that. I think it gave people a newfound respect for me.” Every day has its own set of challenges and its own lessons, Kelly says, but she continues to navigate her new normal.

 

     

 

Updated on: 09/25/18
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