Lupus is a chronic, inflammatory autoimmune disease, which affects antibodies. In other words, what should protect you ends up acting against you. And it is with this vulnerability that many patients, including me, live. This text is about my process of living with lupus for 17 years, and about my most recent and dangerous crisis, which affected my heart and both lungs.
The name of this disease comes from Latin and means “wolf”, because the red spot characteristic of patients resembles the spots of some species of wolf.
But the stain ended up becoming better known as “butterfly wings” and, in my opinion, it is much more coherent. Both for its shape, which actually resembles the wings of an open butterfly, and for its symbolism.
The butterfly is a fragile insect. But, at the same time, full of color, of life, and eager to reach higher heights. And many patients define themselves as butterflies.
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My diagnosis was delayed and intense, due to the lack of information related to lupus that existed at the time – we are talking about 2007. I had joint pain, fever, and I saw my life change upside down!
I needed to avoid sunbathing, eat better, exercise. I started taking a dose of corticosteroids that left me quite swollen.
The news about my illness spread throughout the school, and I remember that the first statement came from a classmate, who was direct: “Is it true that you are going to die?”
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At the time, this seemed a bit absurd to me. But after my last crisis (the third in 17 years), I no longer know. When you have lupus, you never know how you will wake up the next day.
On February 22, 2023, exactly four days after my birthday, my breathing failed. I went to the hospital, and an x-ray revealed that I had a pleural and pericardial effusion – my two lungs and heart had accumulated fluid, which prevented breathing and put my heart at risk of stopping working.
It was simply desperate. I was hospitalized shortly afterwards, and had to use oxygen.
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+Read also: What women with lupus need to know before getting pregnant
There were two months of hospitalization, many tests, and a fever every day for a month and a half. I had to drain my lungs and heart and receive a blood transfusion.
Everything I didn’t do came to mind. The management position I have not yet achieved. The pastry with sugarcane juice that I couldn’t eat. The friends I didn’t see. The master’s degree abroad that I never took. The fact that I still haven’t been able to give my family a better life. So many things!
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In the end, the doctors tested a more potent medicine used for lupus in severe cases, and I began to improve little by little, after a month and a half. I abandoned oxygen, removed the drains.
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The tiredness continues, my body has never been the same. But I can’t deny that I was born again.
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In many years of being busy at work, I learned to stop and recognize my progress. I admit it was a bit workaholic: I was always taking the next step and forgetting about the present.
And that’s what I learned most about myself during this “experience”: I did what I could. I always continue to do what I can, and that is enough.
I am a journalist to end the lack of information, I write for the teamrelease feelings, and I dream because I believe. So, I dare to leave some words of motivation for those who face the discreet battle of living with a disease (autoimmune or not): it is possible to take care of yourself and adapt according to your needs, even if this requires self-discipline.
Living is more urgent than any procrastination. And flying is necessary for every butterfly that emerges from the cocoon.
*Fernanda Lagoeiro is a journalist, copywriter and a butterfly obstinate for new flights. She writes primarily about social impact, the environment and women’s empowerment. She has traveled alone to 14 countries, and represented Brazil at several international diplomatic conferences. She was diagnosed with lupus 17 years ago.
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