Lupus & Me: My heart

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At present, 1.5 million people in the United States alone have systemic lupus.  A majority, 90%, are women.  And while there are many theories about the next fact, no one really knows for sure– Latinas, Native American, Asian American and African American women will see greater numbers of lupus in their families.   There is a higher incidence rate of lupus among minority groups.

Those are the facts.  While there isn’t much that can be done on avoiding the disease all together– there aren’t any cures or even ways to prevent lupus, there are ways to manage the disease.

I was diagnosed with lupus following major internal organ involvement many years ago.  I’ve probably been living with the symptoms most of my life even before the diagnosis.  That’s common in lupus–  many people get ill and experience different symptoms ranging from fatigue, arthritis and joint pain to unexplained hair loss.  Unless you happen to be seen by a physician during a flare where there are enough symptoms to make a good doctor dig deeper, you could be unaware you have the autoimmune disease for years.

In the picture above, I had been going through a rough time healthwise.  I was still months away from being off of strong medications with side effects that rivaled the damage lupus itself introduced to my body.  I was a patchwork of fuzzy new hair and bald spots under the wig. It was a difficult experience but I recognize that everyone encounters choppy waters in life.  This was my storm.  I am fortunate that it’s something that can be managed and I was able to live and enjoy life beyond lupus.

I fit the bill when lupus came calling.  I was a young woman who could check all the boxes for high risk categories.  Lupus usually begins showing itself in young women as early as 15 years old, the signs can be there even younger.  Latinas experience a higher rate of heart disease and kidney disease than other people with Lupus.  Lupus must have read the news and that’s exactly where it tried to take up permanent residence in me.

I firmly dug my heels in.  I took a stand.  Lupus, you cannot have my heart, it belongs to many.  You cannot have any part of me.  It fought me hard.  Sometimes it won.  Part of my fight is making sure others hear a story that helps them navigate those choppy waters.

My crazy hair came back as wild as ever!

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2 thoughts on “Lupus & Me: My heart”

  1. Reblogged this on 4utu and commented:

    Month 3 milestone for 4utu! Hooray:) I never expected to meet such wonderful people from all around the globe. I’m inspired!
    Gracias,
    Estela— Fluffles aka the Candy Cane Licker from Fake Breaking News sends his thanks to all the followers who have mailed him treats while he remains in custody of the queen for crimes against Christmas trees and houseplants.

    Like

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