You spend your whole life picturing the day you move into college. There are no words to describe the feeling being told you may not be able to go.
Early August in the summer of 2012, I became really sick. For a week I was at the hospital every day meeting new doctors to try to piece together what was wrong with me; I can’t count on two hands the amount of medical tests I had done. It turns out my lab work showed I had 20 times the amount of protein and red blood cells in my urine than normal! I went to see a nephrologist (a kidney doctor), and before I knew it I was getting my first of two kidney biopsies. Yes, I was lying there wide-awake while the doctor took tissue samples right out of my kidney! Cool, right? (I think so, at least).
My doctor told me I wasn’t allowed to move into college until we got my biopsy results back. This was literally the worst news I’ve ever heard- I was 18 years old and wanted to make my college dorm Pinterest board a reality! I wanted to make new friends and meet boys! The morning of move-in I got my results back. Like Katniss Everdeen, the odds were ever in my favor… I was Lupus free! Instead, I was diagnosed with acute kidney failure and a very rare kidney disease called C3 Glomerulonephritis.
C3 Glomerulonephritis (C3GN for short, let’s make it easier for both of us) is an autoimmune disease that attacks my kidneys, meaning my body thinks there’s an infection in my kidneys when there really isn’t. We all have tiny “knots” of capillaries called glomeruli in our kidneys that filter blood, turn its toxins into urine, and reabsorb essential molecules that our bodies need. My disease makes my glomeruli swollen compared to the usual tiny network of capillaries, so I can’t reabsorb my body’s proteins and red blood cells. Instead, I excrete them in my urine.
As a result, I’ve had a pretty hefty list of medications prescribed in order to manage my disease and keep my body healthy. Although the meds were helping my body, I struggled through terrible side effects every day. One medication I wish upon no one is prednisone, a really helpful but demonic steroid. It made me gain over 30 pounds of water weight- I didn’t fit into my clothes and I couldn’t put boots on because my ankles were so swollen! I had chipmunk cheeks and got enormous, purple stretch marks all over my body that still look like leeches. Also, this drug made me eat as if it were my job. I felt like I could win three hot dog eating contests in a row and still be hungry! Growing up a competitive dancer I was always aware of my body image, so watching my body transform from one tiny pill made me extremely self conscious and disheartened. I became a total introvert my freshman year and I suffered from anxiety and depression. I felt so uncomfortable in my own skin.
Today, I feel as though I’m a completely new person. I’m off a lot of those haunting meds, and my kidney disease is under control. I’ve even worked up the nerve to speak out about my crazy journey. None of this would’ve happened without the help of the fantastic nonprofit organization I’m proud to be a part of, called Bella Soul. Bella Soul allows sick students, just like me, to share their stories. For two years I felt alone on campus, like there was no one to relate to. Through Bella Soul, I’ve learned that I pass students everyday that have their own bumps in the road. It’s hard being in college and not being able to live out the “college experience” you’ve dreamt of your whole life. It’s so rewarding when you meet students who know what you are going through; your craving for normalcy is fulfilled and the loneliness is gone.
Talking about your disease or disability is easier said than done, though. I know how hard it is; it took me two years to open up about myself! But if I hadn’t, I know for a fact I wouldn’t be as happy or healthy as I am today. That’s why I think communication is the key to overcoming physical and mental hardships. I hope that sharing my story inspires others to do so as well. Not only is writing therapeutic, it helps your family, friends, and community understand what it’s like to spend a day in your world.
While scrolling through my twitter feed one day I stumbled upon this quote: “If God brings you to it, He will get you through it.” I know, totally cliché of me to end my post with a quote. But this quote basically describes how I got to where I am today. Because I was diagnosed with C3GN, I know that I want to be a physician assistant working in nephrology. Because I was diagnosed with this rare kidney disease, I was led to a powerful nonprofit org called Bella Soul. I hope that everyone, not just those with chronic illnesses, find this organization as enlightening and beneficial as I do!
