Life · Uncategorized

World Lupus Day

Around a week or so ago I stumbled upon a blog that really resonated with me by a person who like me, was dealing with many typical lupus symptoms while still trying to rock on and make the most out of life. She posted an epic selfie of roaring into the camera and it was absolutely captivating. She urged fellow lupies and their family and friends to all do the same, to be fierce or to stand like a warrior (warrior pose in yoga) and to post to social media to bring awareness.

Crushing Lupus is where I learned that today (May 10th) is world lupus day and after reading her post I promised myself I would participate.

I don’t often go public with my personal stuff, heck even Mr. Mango doesn’t read this blog, and the rest of my family and friends don’t even know about it’s existence. Most of the people around me have no idea I have lupus…. or even what it is.

But isn’t that kind of the point of today? To bring awareness? To show the world we want a cure? To have people understand exactly what it is we suffer from (no having an auto-immune disease DOES NOT mean we are contagious with an AIDS type virus, no we DID NOT do this to ourselves, no it won’t just go away with good eats and exercise).

I don’t want to act like I’m ashamed of my disease or how it effects my life. Sure it fucking sucks sometimes and I wish there was a magic cure. Sure I worry about what it means for my future health. While I don’t want to broadcast and publicize my daily struggles, I do want to be a part of bringing awareness to the masses, of educating people on a disease that effects over 5 million people worldwide, probably a lot more… Lupus is notoriously difficult to diagnose and it is estimated many more are living mis-diagnosed or diagnosed entirely because of their mish-mosh of symptoms. I remember being there.

So here it is… my fierce…. my warrior… (sorry I don’t really understand the hashtag thing, I’ll be getting Mr. Mango to help me with that on Facebook later). Please forgive my lack of effort in looking fresh and put together. It’s a no make up, messy hair, be happy I managed to brush my teeth kind of day. Don’t judge!

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One advantage of taking advantage of a very rare no make up photo op is being able to debut to the world what I’ve now learned is my own ‘mild’ case of a malar rash (one of the signature symptoms of my type of lupus).

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Apart from hormonal acne scars, my very pale skin shows off what looks like a sun burn over my cheeks, nose and in between my eye brows. What I thought was just a complexion issue (being so fair skinned leaves no flaw unseen) turns out to be something completely different. Just in time for Lupus Awareness Month.

I am still  learning about the disease itself, my symptoms and how to manage my life around it. I still sometimes cant believe I have lupus and that it will be with me forever…. or maybe not? Who knows if creating awareness, opportunities for knowledge and pushing for a cure will make a huge difference. Here’s hoping!

 

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2 thoughts on “World Lupus Day

  1. Great post! I remember the first year or two I didn’t share with anyone that I had lupus. But once I started sharing, to my surprise there is so many people out there that either have lupus or know someone. I actually felt better about it that secret wasn’t good to keep to just my immediate family. I’ve learn sharing in talking about it does a few things: help others especially someone who was recently diagnosed. This way they can see life doesn’t end. Talking about it will help others to chat with. Bringing awareness will only help better meds in better educated doctors. If everyone who has lupus talk about it, blog about it, tweet about it we could trend on social media. We have to help ourselves if we want others to help us. Please keep blogging in sharing your story. You could be helping another young lady who has more of your symptoms. I’ll be checking on you.

    Liked by 1 person

    1. You are so right! We really have to be our own advocates and along with the advantage of getting the knowledge out there, we end up finding support in the most unlikely places. Thank you for stopping by, take care! xoxo

      Liked by 1 person

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