I Am a Lupus Warrior

Ines Martins, PhD avatar

by Ines Martins, PhD |

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Lupus Warrior

Being that this is my first blog post with y’all, I’ll start out by introducing myself with a warm hello and a virtual hug.

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I know at some point we all end up adding labels to people because it can be the easiest way to get a feel for someone’s personality and their character. Me? Well, I guess some would say: Adventurer, Passionate Activist, Single Mother, Survivor … Survivor? Wait, where the heck did that one come from?

The word survivor implies an end date to an experience, like “I survived the 2010 flood” or “I survived cancer.” I am not done with any of this crap and most people can’t tell the difference between when I am actually feeling my best or when I have sunk down to my worst. I’ve gotten really good at being able to do a Skype meeting from my bathroom floor while in fetal position from the pain. I win small battles but make no mistake, I will never win the war. So maybe Lupus Warrior, if we were really going to label me, would be the best one yet.

Every day I wake up knowing that what I have has no end date, and it has no cure.

Over five million people worldwide suffer from lupus, and unless you have it or know someone directly who has it, you probably have no idea what I am talking about. Let that sink in for a minute … it will never go away, there is no vaccine, and treatments vary from steroids and opiate painkillers to some crazy scary stuff like chemotherapy and other biological immunosuppressant therapies. Treatment options and their costs are constantly weighing down on someone like me. A Lupus Warrior has to wade through a complicated series of options and processes in this life or death battle for, quite simply put, more time.

Traditionally, with lupus you aren’t treating the disease, you are treating the symptoms.

Up until about the last 10 years, there really hasn’t been a single treatment for a Lupus Warrior at all. At least not one that has proven effective for even a small percentage of the patients who suffer from it. It’s crazy.

I could seriously go on venting for hours, but I say we save that for when I am having one of my “crap” days, and we enjoy the good day that is today. A few good days can make for a good week. A few good weeks can make for a good month, and so on and so forth. That’s how I try to live my life and that’s how I am finding way back to loving it.

Looking back, I can see that I was and still am going through the five stages of grief when it came to my old pre-lupus life. I like to think maybe the Universe, God, whatever you believe in, thinks I am a pretty touch chick, and I can handle this. I also like to think,

“Hey, if the Universe knows I’ve got this, then I’ve got the UNIVERSE behind me!”

This week, I am not only starting a new column for Lupus News Today, but a new chapter in my own life. I’ve just recently returned back to earth from what I can only call the best summer of my life. I’ll tell you all about it in good time, but this summer changed me. Like some for-real, on-the-level shiznit, changed me to my core.

Very, very long story short, I had lost my passion … my fire … my mojo … and what made it worse was that I knew it. You know that old saying “Ignorance is bliss?” Well, it’s without a doubt 100 percent true. I knew I wasn’t going to get better and that no one could pull me out of the spiral I was going down but me. I had to ask myself, If I don’t care, then who does?

I remember that moment of realization that the answer would be no one. So I set off on a month-long sabbatical, and I created a pilgrimage away from my home that completely revolved around my illness, and what I saw as my newfound limitations. I set off to prove to myself that if I really wanted something, I could do it on my own. What I found was that if I wanted something bad enough, then yes, I could go out and get it. I also learned I would need to ask for help along the way. My name is Bridget, I am a Lupus Warrior, and this is my journey.

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 Services, and are intended to spark discussion about issues pertaining to Lupus.