Living Beyond Limits

I was recently diagnosed with end stage renal disease. After surgery, I found myself reflecting on my 35-year journey with systemic lupus erythematosus and my 22 years living with lupus nephritis. I began to wonder what I could have done differently to change my current situation. Did I make the right choices about what I ate? Did I exercise enough? Did I follow my doctors’ advice as closely as I should have?

I don’t remember the day I was diagnosed with lupus, but I do remember my first support group. I vividly recall sitting in a room at Piedmont Hospital in Atlanta, Georgia, surrounded by others living with lupus. It was 1990, and I had been released from the hospital a few months earlier after suffering from pericarditis, pleurisy, pleural effusion, a seizure, and a host of other lupus symptoms.

As a 16-year-old, I felt a sense of isolation from the women in the group. At the time, I didn’t fully grasp the severity of my situation. That changed when a man entered the room in a wheelchair. He looked exhausted, hunched over in his chair, with an oxygen tank by his side and a face bloated from steroids. He didn’t look like the women in the group. In that moment, a question ran through my mind: Was this going to be me?

The Importance of Support Systems

I attended the young adult support group for people with lupus until I graduated from high school. My support group leader, Kathleen Lews, was a Godsend! She helped me navigate some of the less severe aspects of lupus—the joint pain, the Raynaud’s Phenomenon. She also helped me understand what a happening to my body. I responded well to prednisone and hydroxychloroquine and the positive reinforcement during those first few years. The fears that I had after that first support group were gone.

So, I left for college 800 miles away in sunny Miami, Florida. Yes, not the best choice, but my life goals were there. My parents always told me to never give up my dreams. For years, my dream was to be a marine biologist, and I was accepted into the program. There was not a lupus organization in the city, so my support system consisted of my friends who slowly learned about lupus. They would give me rides to appointments or to the pharmacy. They also checked on me when I was sick and made sure that I wore sunblock.

I eventually returned home because lupus reared its ugly head. And boy, did that have an impact on my mental health. My mother’s couch and television became my support system for about a year as I fought lupus, depression, and anxiety. Then I went to therapy. My therapist, who knew my parents, reminded me over the course of 4 years to follow my dreams. I eventually accepted that marine biology was not destiny, but the therapist helped me realize the strength in my abilities, my thirst for knowledge, and the gifts of my pedigree. She made me realize that marine biologist is just one label; that there are many more gifts that define me.

Twenty-two years have passed since I graduated from law school. Yes, I know marine biologist now lawyer. I am still trying to justify a connection. l live with more than 6 chronic illnesses that are debilitating to some, but not to me. I work part time and continue to go to therapy once a week. I lead and participate in two support groups. I also rely on my family and friends for support, and I have learned ways to manage my illnesses.

Listen to Your Body

When I’m in pain or feeling weak from lupus, fibromyalgia, or after a hospital stay with a stent, I call my physical therapist. He understands my body—my strengths, my weaknesses, and when I haven’t been exercising at home. He knows when I need to push myself and when I need to slow down. He provides targeted exercises that both prevent pain in one area and treat existing pain in another. Always up to date on my chronic illnesses, he is not just part of my support system—he is my friend.

Being a Foodie with Conflicting Diets

On top of end stage renal disease, I have ulcerative colitis, gout, and GERD. So, it’s important for me and my family to plan meals ahead of time particularly during disease flares. Luckily, my grandmothers taught me to cook not long after my lupus diagnosis. I try and stick with an anti-inflammatory diet and reduce protein at home. I keep a list of my various diet restrictions and use a mobile app to help me navigate grocery stores and restaurants. I also give myself some freedom to cheat because my dietitian tells me to be realistic. I have a weakness for Asian cuisine; so, I have learned how to make many dishes.

Doctor-Patient Relationship

As my rheumatologist likes to say, I have the “gold standard” medical team. What he means is that I have a group of doctors who communicate with each other. They are compassionate, highly knowledgeable, and they listen to me. I am the boss of my care. At every appointment, I am prepared with questions because I keep a log of my symptoms. I also make sure a family member is in the room with me, because I cannot do this alone. Before I leave any appointment, I make sure I am comfortable with the decisions that my physician and I have made together.

Gratitude

Every day I start by thinking of seven new things for which I am grateful. The number seven holds meaning in many religions and philosophical traditions. To me, it represents knowledge and new beginnings. For the past 35 years, lupus has taken me through many difficult battles. At times, I have had to make transitions in my career. I have endured very difficult stints in the hospital, and I have even had to move in with family so that I could receive 24-hour care. Yet with every battle comes a new day, and for that I am grateful. God has given me a purpose, and my hope and vision will not be diminished by these illnesses.