Lupus Awareness & Advocacy

Living with lupus means living with a body that keeps rewriting the rules without your permission.

In 2021 the first onset hit and lasted six weeks straight. Relentless burning and pain from the inside out, no diagnosis, no medication, just unchecked inflammation consuming everything. I was sleeping thirteen hours a day and still waking up destroyed. At night I was screaming unconscious while my husband got up every two hours to swap out the four ice packs strapped to my body. For six weeks. That man deserves a medal, a vacation, and probably therapy.

By the end of year one, my skin was so ravished by lupus induced rash that it  now requires ointment and vaseline around the clock or it stops cooperating. A gothic vampy summer wardrobe because SPF 100 is now a personality. An immune system that treats a brisk walk like a declaration of war. A left TMJ so damaged I speak with a lopsided lisp when tired, like one side of my face clocked out early. Chronic inflammation in my right foot and right index finger that has ignored every medication I have thrown at it for years. And those are just the headlines. I just came out of a nine week saga where a minor surgery triggered spontaneous mast cell activation and nine straight weeks of histamine dumps. Still medicated for that. Lupus does not do anything small.

Oh, and did I mention my corneas got so inflamed I could no longer wear contact lenses, I ended up paying out of pocket for a $8K EVO Clear permanent implant surgery back in 2024.  

I am sharing this because this page exists for anyone living something similar, or loving someone who is. Send it to the friend who keeps being told they look fine. They are not making it up. None of us are. I probably had my first symptoms in my late teens and had no idea. That is the thing about lupus, it hides in plain sight for years before it fully introduces itself. Knowledge is power, and in this case, it is also early intervention.

To learn more: https://www.lupus.org/understanding-lupus