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Mae’s Story (Lupus)

Purple RibbonI go by Mae. I was 11 in middle school. One day, I was doing a backstroke when suddenly the concrete step in the pool cut me. I love swimming and playing tennis, so getting a cut wasn’t a big deal in my thoughts. It was just a cut. I didn’t think much of it and washed it off later. Then the rashes started forming around my cut. I put on some cream and still didn’t think much of it. Then the rashes and splotches started creeping up my arm and appearing on my legs. A week went by, and I saw a few pimples forming on my cheeks. Oh, it was probably just from the stress that everyone gets. A few days later, it became what is known as the butterfly rash. It was far from being pretty like a butterfly. My parents, worried, took me to the doctor, and after a few visits, had me take the ANA test. It came back positive. Could it have been drug-induced? I was taking other medication to fight my epilepsy, so it was a possibility. Under close monitoring, I was officially diagnosed. It was lupus.

I am 16 now, a senior girl in high school, getting ready for college and spending the last years with my friends before we go our separate ways. I take blood tests every 6 months, and some extras in between, so many times I can look at the needle go in without even blinking or flinching. My eyes are checked annually to make sure Plaquenil isn’t getting rid of my peripheral vision. On extremely stressful days, and trust me, there are plenty of days where it’s stress overload, my cheeks start flaming a little, and it takes more than a week to get them to calm down. I wear hats (which I have come to love since I used to despise hats for blocking my vision) and always apply extra sunscreen. I still love sports, and for all the levels of sun-sensitivity I have, still love playing on the tennis team. Other than all the visits to the hospital for blood tests, screening, and to pick up medication, I look like any old senior getting ready to go for my dreams.

Honestly, I’m scared that it can take a turn for the worse, since I currently have only cutaneous lupus and I’ve been allowed to stop taking my epilepsy meds. But I have some bigger dreams to run after, and I can’t let any fear of something I can’t control hold me back. I love science, and I especially love people. I have a big interest in pursuing medicine. Maybe it was sparked by so many visits to the hospital and seeing all the amazing work that comes from everyone there. Who knows? I love the outdoors, singing, writing poetry, baking, reading, drawing, and have a fear of college applications.

Where will my story take me next, I wonder? I’m not sure, but to everyone I say that you should never be intimidated by fear and should put it into perspective. We are not only survivors, but we are also warriors.
I hope everyone who reads this realizes that power comes from within, and we all are able to write our own stories because we, not the illness, choose whose point of view it comes from.

Lots of love,

Mae
California
Submitted 11/10/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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3 comments

  1. Hi Mae,
    You are a breathe of fresh air that we need , you are so cute when you write , your poetries must be well written ! Keep up your beautiful happy writing and remember you are 100 per cent right about the power within , we all are strong people and proud fighters , so you keep on fighting like a girl and fight strong and never ever stop writing !! Share your gift of words , best medecine ever !♡♥
    For your stress there is a breathing technique , I forgot the name but you follow the ball and it calms you down soooo relaxing ! If you like I can get the name for you !!♥♡

    with love , hugs from Québec Canada,
    Brigitte Estelle xxxx
    I wrote a story about my sister Diane Gaudreault in the non hodgkins lymphoma section under my name please join in our conversations , if you like ! (Great recipe book check it out on internet,” oh how she glows ” )

  2. Cindy Smith-Jordan

    Thanks Mae for sharing your awesome testimony with all of us. As I read your story I can feel your passion for life and I agree our healing comes from within. I am glad you find happiness in writing poetry as well as I do. What an awesome way to become stress free by releasing your feelings in words of poetry. My prayers of continued healing of you. I also suffered from seizures and now I am a breast cancer survivor. #FAITHDRIVEN #FIGHTLIKEAGIRL

  3. It’s great to hear your attitude, Mae. I have Lupus too, but SLY. I’m 18 now, been doing this for 4 years, I still hate needles, really hate them. I’m not sure I’ll even get over it. (at least I don’t pass out anymore, but it was only that one time…) I think it’s really cool that you’re thinking about going into health studies.

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