“I’m Stronger Than Lupus”- ft. Jaelyn Green

Personal Experience & Diagnosis

I remember the day of my diagnosis as if it were yesterday. On March 6, 2015, after a long and exhausting year of trying to convince multiple military doctors that something was seriously wrong with me, one compassionate physician finally listened. She ordered a thorough set of tests and delved deep into my medical history. A few days later, my test results returned and my mother called with the life-altering news: I had been diagnosed with Lupus Nephritis.

In that instant, my mind raced to the worst-case scenario—I even asked her, “Do I have cancer?” She discussed with me that although I had an autoimmune disorder that was 100% treatable, it was not curable. I felt a sudden flood of emotions as I struggled to navigate this devastating news. Soon after, I was referred to Mclane’s Children’s Specialty Clinic in Temple, Texas. There, I underwent a kidney biopsy to determine the severity of my condition and assess how much kidney function remained. Facing my first hospitalization and a major procedure under anesthesia was terrifying, but it also marked the beginning of a long journey toward understanding and managing a disease that would change my life forever.

Living with Lupus

In the early days, my body sent clear signals that something was terribly wrong. I wasn’t myself—I barely ate, and when I did, nausea took over so much that I couldn’t keep food down. I lost a significant amount of weight, and my once-thick hair began falling out in patches. Activities that once brought joy, like playing basketball, became impossible as even the simplest physical exercise would leave me absolutely drained.

The physical toll was overwhelming, but the emotional burden was equally heavy. The constant fatigue, the unpredictability of flare-ups, and the isolation that came with not feeling “normal” pushed me into a deep depression. I felt abandoned by the world, and for a long time, every day was a battle just to keep going. I felt overwhelmed that my once normal life would now be changed. I was comfortable, But how do I navigate now? 

Navigating Daily Life & Medical Management

Learning to live with lupus has been a process of trial and error. The cornerstone of my management strategy has been consistency—taking my prescribed medications at the same time each day, even when my body decides to rebel. Despite these efforts, flare-ups are inevitable. Some hit for just a few hours; others are so severe they land me in the hospital for days. On tough days, I’ve learned that the only option is to slow down, listen to my body, and give myself permission to rest. With Predneszone and Celcep being the most common medications for Lupus, I found myself in a constant battle of managing the side effects of both. I would gain and then lose weight which affected my appetite; develop skin rashes, and try to manage the swelling in my hands, face, and feet. But eventually, I was able to work with doctors and learn what triggers me and how to manage. I never thought I would have to learn my body all over again.

As my condition progressed to end-stage renal disease (ESRD), my life was redefined by dialysis. ESRD is a severe and irreversible condition where the kidneys have lost most of their function and can no longer adequately filter waste products and excess fluid from the blood. Due to the intense need for treatment, my weekly schedule now revolves around dialysis treatment sessions 3 times a week for four hours each treatment. My days consist of mornings of work followed by afternoons and evenings on dialysis. This routine has forced me to rethink how I balance health, work, and relationships.

In the beginning, the physical changes and weight fluctuations made me retreat from friends and family because I truly didn’t recognize myself and who I was now becoming. However, overtime, I’ve rebuilt those connections through communication and self-acceptance; realizing that I cannot fight this battle alone. Today, I’m fortunate to have a supportive network and a flexible, almost full-time job that accommodates my treatment schedule, allowing me to work from home and pursue further education.

Mental Health & Emotional Impact

The emotional roller coaster that accompanies lupus is as unpredictable as the physical symptoms. There were moments when depression seemed to be fueled by insecurities about my appearance, the constant pain, and the relentless fatigue. A favorite teacher in middle school, who took me under her wing, became an early source of comfort. Later, my school guidance counselor filled a similar role, offering the understanding and care I desperately needed during those formative years.

Over time, I discovered that talking about my experiences—whether with trusted family members or friends—was crucial to managing the anxiety and isolation that lupus sometimes brings. These conversations have not only helped me cope but have also reinforced the importance of a strong, supportive community.

Medical Treatment & Advocacy

Since my diagnosis, I have consulted a diverse team of specialists—nephrologists to manage my kidney health and rheumatologists for my joint and overall autoimmune care. Navigating this network of care required me to learn how to advocate for myself, a skill that didn’t come naturally at first. It was only when I began to insist on being heard that I found doctors who listened, addressed my concerns, and included me in every decision regarding my treatment. 

Managing side effects and flare-ups is an ongoing challenge. Whether it’s the relentless heat that triggers a painful butterfly rash or the cold that stiffens my joints, I have learned that no two days are the same. Sometimes, I preemptively take medication and Tylenol to moderate symptoms, but there are times when even the best precautions aren’t enough. In those moments, I simply rest—often to the point of exhaustion—until my body signals that it can continue the fight another day.

I also keep a close eye on lifestyle factors. With ESRD in the picture, I’ve had to become very mindful of my fluid intake, salt, phosphorus, and potassium levels. This means saying goodbye to some of my favorite foods, like potatoes and bananas, and adapting to a new dietary regimen that supports my kidney health.

Raising Awareness & Fighting Misconceptions

Lupus is often misunderstood. Many assume it’s contagious, or that if you don’t “look sick,” you aren’t really suffering. There’s also a misconception that lupus is curable. The reality is that lupus is a chronic condition—one that we manage with treatments and lifestyle adjustments. but it is not curable. My personal experience has shown that while lupus can affect multiple organs, in my case, it primarily targets my kidneys.

Through sharing my story, I aim to dispel these myths and educate others about the true nature of this condition. I encourage listeners and readers to recognize that while lupus may be an ever-present challenge, it does not have to define who we are or limit the lives we lead.

Hope, Resilience, and Looking Ahead

Faith and family have been my pillars of strength throughout this journey. In moments of despair, I remind myself that I am blessed—blessed with access to the treatments I need, blessed with a network of loved ones who stand by me, and blessed with the inner strength to keep fighting. Today, as I approach a decade since my lupus diagnosis and five years on dialysis, I find new hope for the future.

I have recently re-enrolled in school to pursue a Bachelor of Business Administration, discovered a passion for cooking, and even welcomed my grandfather into our home to share in our family’s journey. Perhaps most importantly, I’ve begun the transplant evaluation process. While a kidney transplant isn’t a cure for lupus, it represents a chance to live a life less burdened by the constraints of dialysis—a life where I can travel freely and enjoy everyday pleasures without constant medical interruptions.

For those interested in kidney donation, here’s a brief overview:

• Living Donor Transplants: These offer several advantages. The entire process—from surgery to recovery (typically 3–4 weeks)—is more controlled, with all expenses usually covered by the hospital/ insurance. Living donor kidneys often work faster and last longer.

• Deceased Donor Transplants: Once approved, patients are placed on a waiting list. Factors like blood type, antibody compatibility, and the length of time on dialysis determine one’s position on the list. Generally, the wait can range from 3 to 5 years.

Where Am I Now?

As I reflect on the past ten years, I see not just a history of struggle but also one of remarkable personal growth. My life now is a blend of work, studies, dialysis treatments, and cherished time with family. I no longer view lupus solely as an adversary; instead, I see it as part of my story—a story of survival, adaptation, and continuous evolution.

Every day, I strive to live fully and to encourage others facing similar battles. My journey has taught me that while lupus challenges every part of my life, it does not diminish my spirit. With support, self-advocacy, and a commitment to hope, it’s possible to still have a meaningful, joyful existence—even in the shadow of this chronic illness. 

Signed,

Jaelyn Green

A Lupus Warrior