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How I Will Use My Lupus to Give Hope to Kids With Similar Conditions

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I am a full-time college student, part-time nanny, a lover of pets, an unwavering friend, a big dreamer, and I have Lupus. Lupus found me when I was a week past my 14th birthday. It found me in the prime of my teenage years. I was an active middle-school student who loved playing soccer, going to church activities, and was crazy for the kids that I got to nanny.

Lupus affected my life in every possible way. My dreams seemed to be quickly vanishing, and this was only just the beginning. What was to become of me as I grow older? If I grow older?

Friends who had pledged to be “besties forever” fell away fairly quickly, sports were only a memory and school was out of the question for a very long time. My life as I knew it had been taken away from me, and yet I was still alive. I was living a life I didn’t recognize as mine. Monthly hospital stays consumed my time, tubes ran through my arms and nose, and soon I was no longer able to recognize the person I saw in the mirror. I was a stranger in my own body.

Woman with oxygen tube in nose, smiling.

My diagnosis didn’t come quickly, and the constant health crisis I was in turned my life along with my family’s life upside down. How did one life, my own, affect so many people? My mother who also suffers from at least four autoimmune diseases made it her mission to “fix me.” This dedication and determination was great, and we made a great team, still do! But the heartbreaking thing my mother doesn’t understand, is that she will never fix me. This disease is life-long and no matter what my sweet mother does, I will not be cured.

I was never asked to a dance, my dreams of attending prom and homecoming were still there, but they never materialized. I was not invited to parties, or social gatherings, after all I was just the “sick girl.” Rumors and social media swirled with inaccurate and sometimes hateful ideas of what was actually going on with me. I grew up very quickly and became so strong through these trials, I learned to rely on myself and my family and that was it. Thankfully that was all I needed at the time.

There are days when I seem to accept that fact that I will never be cured, and there are other days when I’m determined to cure myself and everyone else who is suffering. But eventually, I fall back into reality and know that it is very unlikely that a cure will be found within my lifetime. I try to stay strong for my family, but I have many doubts about my own abilities. You never know what organ Lupus will attack next, and will that next time be my last time?

Although lupus has taken almost everything from me, it has given me one thing – a new life goal. After countless hospitalizations, I decided I would go to school to become a pediatric nurse anesthetist. I will be hope to kids who have chronic conditions like I have, I will be the person who tells them that, “I get it.” I craved that understanding during my hospital stays and rarely got it. I still crave someone telling me that they get it. It is rare, but such a gift when I do find that person!

I am forging ahead with my dreams, and I am grateful to be in the nursing program at Arizona State University. I moved 1,600 miles away from my safety net, but am happily achieving my goal of a nursing degree while continuing to battle this vicious disease. I have been hospitalized twice while away from home, but proudly finished my freshman year with a better than 4.0 GPA.

I was supposed to return to Arizona in August of 2016 to resume my schooling, but was put on medical leave after suffering countless more hospitalizations, starting chemotherapy and Benlysta infusions. I finished my last undergrad semester online while in the hospital with a 4.0 GPA. My ultimate dream is to return to Arizona in August of 2017 to start my clinical in the hospital. Although the life of a chronically ill nursing student is far different than a healthy nursing student, this is the one dream I will not let lupus take from me. For now I am trusting in my doctors, as well as God’s plan.

I have been given an incredible gift of the realization that my accomplishments and victories are so much sweeter when you are forced to fight for them like I have. Life certainly changed for me with my diagnosis, but the lessons learned have been invaluable.

Thinkstock Image By: ASIFE

Originally published: April 23, 2017
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