Despite Everything I’ve Lost to Lupus, I’m Still Smiling

Despite Everything I’ve Lost to Lupus, I’m Still Smiling
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It’s funny what we take for granted — including the sound of our voices. For a few years, I took voice lessons and participated in community theater, often auditioning and making it with my singing voice. No, it was not Broadway, but it was fun and I truly enjoyed it.

When I started experiencing lupus symptoms, one of the biggest issues was frequent laryngitis. There were days when I had a voice, but it was husky, hoarse, and unfamiliar-sounding. Fortunately, I was doing plenty of YouTube videos back then.

I would never have thought that I would miss the sound of my own voice and have to revisit it using my old videos. The voice I now speak with is courtesy of lupus. I no longer sing because I sound like a squeaky mess.

Recently, I was invited to join a small group of friends who were singing karaoke. Initially, I said I would just watch, but they were having so much fun that I decided to participate. When it was my turn and I heard what came out of my mouth, singing a song I’d sung a thousand times before, my heart hurt. It was the song I would sing for auditions.

Is it strange to realize I had not attempted to sing since my voice changed? I apologized for the torture that I felt I was causing. My friends reminded me that they are not singers, and karaoke is about fun, not judgment. So, I squeaked out a few more songs.

When I got home, I thought about my personality. I thought about my lost hair, my lost voice, my lost career, my lost savings, my lost health, my lost mobility, my lost weight, and my lost hobbies. I wondered how I have not lost my mind.

I constantly think about the things I love but can no longer do. I live a modified life. But my positive outlook and giant smile have always been consistent. I will be honest — I don’t know where they come from.

I have the same emotions as everyone else. However, there is almost always anger underneath. Still, I make jokes. Once upon a time, I would have hated hearing the saying, “it is what it is.” But I’ve now accepted this in many areas of my life.

I would love to be able to change certain things, but I can’t. I have lupus. I have a squeaky singing voice. I am super skinny. I have no hair. (I did recently buy three hair hats, though). See? Humor — I can’t help myself. Yet, while smiling through the roughest times of my life, I am, in fact, helping myself.

One of my new “hair hats.” (Photo by Kellie McRae)
My curly “hair hat.” (Photo by Kellie McRae)

There have been so many times when I longed to be able to do “simple” tasks, and I have felt sad, angry, helpless, and hopeless about things I have lost. However, I refuse to stay down, and for that, some days I believe I am literally insane. Kidding, just kidding! More humor. I just can’t seem to stay in a low place, and for that, I am very grateful.

I miss all of the things I have lost in my battle with lupus, but the best I can do is the best I can do. I try to find other things that are fulfilling, I try to only focus on things I can directly impact, and most of all, I try not to focus on what is no longer.

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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to lupus.

Kellie is a lupus warrior who spends her time teaching many about the incurable disease she battles with a smile on her face. She travels the world, writes articles, has an active YouTube channel and creates coloring and activity books for both adults and children. She is known as Queen Bubbly Bee because no matter what is going on with her body, she always manages to find the silver lining.
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Kellie is a lupus warrior who spends her time teaching many about the incurable disease she battles with a smile on her face. She travels the world, writes articles, has an active YouTube channel and creates coloring and activity books for both adults and children. She is known as Queen Bubbly Bee because no matter what is going on with her body, she always manages to find the silver lining.

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12 comments

  1. Charlotte says:

    Thanks for the post. Wise words that all of us lupus warriors can relate to. Your hair hats look fab! You have a great style. Sending best wishes. x

  2. Maureen says:

    HI Kellie! yet another awesome post! Thank you! You have made me realize how much I have lost also. I just realized though that although I don’t dwell on it (except on really bad flare days/weeks!) I too manage to be an upbeat positive attitude. I despise feeling lowly, always have.
    But, sometimes it is to my detriment because then family/friends do not take my Lupus seriously, even when I am sicker. Oh well! There’s nothing I can do about them. I can only focus on getting through my days living with SLE.
    I too am famous for saying ‘it is what it is’ and now I’ll borrow your ‘the best I can do, is the best I can do’! Love it! I love your haircuts on beautiful you! Keep strong Warrior! Maureen

    • Kellie McRae says:

      Hi Maureen, I love that you have said there is nothing you can do about them. This is so huge because I think hunting for understanding from those who can’t relate will leave you with an empty feeling. We must do our best to live our best lives even if those around us don’t get it. We are pushing for good when we often feel terrible and that is already a lot. Good for you! I’m glad that you are not into being low! Thank you for sharing your story, it’s encouraging to me.

  3. Em says:

    Hello dear Kellie you have a very beautiful smile, sparkling eyes,the joir de vivre to squeaky sing and wonderful hair hats. I could lament the ‘path of losses’ and very soon I can add my breasts to that list but, like you my spirit will not permit sliding into darkness. It insists I carry on shining and smiling doing what I can, what we must. What is this must? Sharing our spirits gifts be they hats, smiles, the get up and go, your writings and so much more. Thankyou.

    • Kellie McRae says:

      Hi Em, I wish you weren’t losing your breasts, I’m sorry to read that but from the sounds of things, you are resilient and I’m sure that will be quite difficult but as you mentioned, we must still share our spirits. Even the bad things that happen in our lives can help someone else through their difficult times. Doesn’t make it any easier for us to deal with but at least it leaves me feeling that the pains of life are not for nothing. Thank you for commenting and Im sending you comforting vibes.

  4. Katina Nicole Morning says:

    Hi it is very encouraging to read your article I am too a lupus survivor.Thank you for doing what you do.Its a pleasure to get your news letter

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