How would you describe your life? Has it turned out as you expected? Has life taught you some lessons along the way? These thoughts often cross my mind.
The diagnosis of lupus came in 1988 during my junior year of college. I was only 20. Systemic lupus is an autoimmune disease that causes the body’s immune system to go a bit haywire, harming its own cells. Lupus can attack any of the vital organs. In my case, it attacked my kidneys.
The Battle to Save My Kidneys
My diagnosis wasn’t the easiest pill to swallow (no pun intended), but quite honestly, ignorance is bliss. I knew very little about lupus and kidney disease, so I had no preconceived notions or fears about my future. I just plowed ahead to complete my college degree, a goal I achieved in 1990.
Unlike other forms of kidney disease, a lot is going on in the body of a lupus patient. Still new to the disease, I was learning and accepting that not all kidney patients had their body attacking itself. The doctors and I tried to save my kidneys for 10 years. This battle went on from 1988 to 1998.
“The Little Engine That Could”
Throughout those years, though some days were tough, I still managed to have a lot of fun. I traveled quite a bit, visiting new and familiar places. Yet at times, my day-to-day life took a detour while I caught my breath and received medical treatment. My goal in my 20s was always to try and just be a “normal” girl.
As the years passed, my body kept going–like “The Little Engine That Could.” Medication after medication, including chemotherapy, was administered to reduce the flare-ups of lupus. Periods of inflammation wreaked havoc on my body. Doctors attempted to slow down the progression of my kidney disease. Unfortunately my body was not cooperating, but it sure put up a good fight through the years. “I think I can, I think I can…”
A Battle of Champions
During year 10, my body fought the battle of champions, a fight worthy of a gold medal. As my kidneys failed and I started dialysis, my lupus went into “attack mode.” Arthritis, exhaustion, an enlarged spleen, internal bleeding, high fevers, extreme fluid overload, very high blood pressure, and the loss of my hair were just a few things I experienced. However, even through the darkest times, the funny moments kept me laughing.
On a chilly overcast day–the best kind of day at Disney World because the lines are short–my friend and I decide to ride Space Mountain (a roller coaster). It’s one of my favorite rides because all the fast, jarring movements happen in the dark.
A Space Mountain “Wig-Out”
As I approach the ride, I suddenly remember my wig. Will this thing fall off in the ride? Since the line is short, I’m already next. I can’t back out now! I sit down, strap myself in, and put my hand on my wig.
The ride is great, and so is the wig. We zigzag all over–going up, down, and around. Before I know it, I do not feel the wig in my hand anymore! I reach for my head and it is gone… no wig. Panic! My friend and I laugh hysterically, but we’re also worried. In the darkness, we feel all over the seat, the floor, and our laps.
Finally my friend feels something brushing up against her leg. Thinking it’s a mosquito, she swats at it, but still feels it. As she gropes around in the dark, she realizes she found the wig! I shake the wig and back on my head it goes, just as the ride ends and we see daylight again.
Life With a Transplant
I eventually received a kidney transplant in December of 1999, and it continues to function quite well. However the underlying cause of my kidney failure, lupus, continues day-by-day, page-by-page, and chapter-by-chapter.
I have asked myself: “What have I gained from a life of chronic illness? What keeps me going?”
To me, giving back is a must. Joining kidney organizations has kept me educated and involved. Staying connected to people that have shared my experience is so helpful. I really enjoy mentoring new patients, letting them know that “I have walked in your shoes.”
Visiting a senator to change a law, mentoring new patients, or having a story to share were never things I had expected to experience as a teen leaving for college. I know how fortunate I am to be sitting here with a functioning transplant that is seven-and-a-half years young! Each day brings something different for my body and me. No pattern, no rhyme… just a crazy immune system.
So how would I describe my life? Interesting, fun, challenging, and educational. And that “little engine that could” continues to chug along!
About the Author
Julie Glennon was diagnosed with lupus and chronic kidney disease in 1988. After a year of hemodialysis, she received a successful kidney transplant in 1999. She keeps active volunteering with her local Palm Beach chapter of the American Association of Kidney Patients, sitting on their board of directors, mentoring newly diagnosed patients, and is her chapter’s fundraising chairperson. Julie is currently renovating a 1920s historic house with her architect husband.
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