Guest post: What It’s like Living with Lupus by Florence Tew
The school year of 1996 was a good one for me. I was in grade 8 and was voted class president for my middle school. I played the clarinet in my school’s band, and I was a member of every single sports team that year. Better yet, I was asked to address my graduating class as the valedictorian.
As a gift for a fantastic year, my father bought me a brand new bicycle. I rode that bike through the streets of Toronto nearly every day. That summer was defined by the album “The Score” by The Fugees, which was released months earlier. Every record on that album was our summer’s anthem. I was having the summer of my life but was also looking forward to starting high school. I had no idea that I would go from riding my bike for miles at a time across the city to being too weak to walk from my bed to my ensuite bathroom just three short months later.
Journey to Diagnosis
That November, I began to feel sick, so I stayed home from school. Two days, three days, five days passed. I wasn’t getting better. I was getting worse.
My mom took me to my family doctor, where he did some blood tests and said he would call us at home if anything off came up. So we went home, but I started to get worse. My face, feet, and ankles began to swell. My fatigue was getting worse.
My parents took me to Sick Children’s Hospital, where I received a diagnosis within a few days. I had Lupus.
What Is Lupus?
Lupus is an autoimmune disease in which the body’s immune system becomes hyperactive and attacks normal, healthy tissue. Symptoms may include damage to joints, skin, kidneys, lungs, heart, etc. (source: medicalnewstoday.com – https://www.medicalnewstoday.com/articles/323653.php)
The days and weeks that followed were a blur. My kidneys were failing, so I was placed on dialysis. How did this happen? How did I go from a happy, healthy kid to being connected to a machine three times a week?
Complications Related to Living with Lupus
In the years that followed, I endured many different surgeries and health complications. Many of the health issues stemmed from medication that I had to take to treat my Lupus. Some of these surgeries included cataract removal from both eyes, a hip replacement, a knee replacement, and a kidney transplant. One of the scariest situations was when I had to have emergency surgery after being diagnosed with a perforated bowel. As a result, I had to wear a colostomy bag for six months while my colon healed. I went from feeling ok to suffering major Lupus flares. Lupus symptoms may go from mild to severe at any time. A Lupus flare is when your Lupus is active, as determined by blood tests, as well as feelings of unwellness.
While I managed to make it through all of those situations, I still manage other symptoms like fatigue and joint pain. Managing these symptoms makes it difficult to work, but I do work full-time as an HR Consultant. Thankfully, my employer gives me the latitude to work from home a few times a week. Working from home makes a world of difference for me.
Living with Lupus and Family Relationships
From the date of my first symptom to today, my family has been at my side. They went on this strange journey with me, doing their best to navigate this new and scary illness with me. Five years ago, I was lucky enough to meet a wonderful man who is now my fiance. I told him about my medical condition early in our relationship, and he has been my rock since that day. I’m lucky to have him.
Lupus is a complex disease, as no two cases are alike. There are still questions that I have about the future, including whether or not I’ll be able to have children. I’m thankful that my fiance is supportive of me, whether or not I can have children of my own, and we both know that there are other options available. There is still much to learn and much to experience, and I’m happy that I have a fantastic support system to hold my hand throughout the journey.
Florence Tew is a blogger and HR professional living in Toronto, Ontario, Canada. Her Lupus diagnosis came when she was 14 years of age. Being diagnosed at such an age made attending and completing high school challenging. But Florence went on to finish high school and go on to college, where she earned her HR associate’s degree. When she isn’t working, Florence enjoys shopping, going to the movies, and hanging out with friends and family.