Lupus Awareness

Today is World Lupus Day 

Ironic how there’s a day recognized for #Lupus but most people still have no idea what it is…

I had this really great post planned for today… but then my friends surprised me last night with birthday shenanigans and well… my body tasted like death and regret this morning.

So… I had planned on doing #All Purple Everything today because well as part of World Lupus Day you’re supposed to Put on Purple… but as I sat there holding the purple nail polish in my hand… I just couldn’t bring myself to do it. I didn’t realize just how much I don’t like purple… 

But I clearly do. So much that I didn’t even want to invest in time painting my nails that need it badly. #Because I needed those spoons today… 

Spoons? I thought we were talking about Lupus and purple? 

I present to you #The spoon theory. A visual aide to help those without a chronic illness and or pain better understand just how much energy it takes for us “Spoonies” to get through the day.

Most people have no idea the daily struggle. We have to carefully plan out things. A luxury I used to take for granted. And last night, I dipped into my spoon count for today *only part of me regrets it, because it was much needed* which is why today I couldn’t bring myself to do something as simple as painting my nails. The color was only an additional excuse not too…

Obviously 12 spoons or “packs of energy” is just a number thrown out there, but it does help visually understand. So if you do ever meet someone who has a chronic illness, or perhaps you already do, and you can’t understand why they seem to flake a lot, especially at the last minute… don’t take it personally 94% of the time it’s nothing personal. We want to go out and do things but sometimes the energy just isn’t there. Believe me when I say we hate it twice as much as you do… 

Right so I had a point with the whole painting nails bit. I’m getting to it I promise… I’m holding the bottle of polish in my hand and I’m just staring at my fingers.

My cuticles are pretty bad. Even after going to the nail salon. The skin around my nails peels and breaks off more often than it should. My thumbs, have little valleys of cracks in the middle of them– from two different occasions of having them slammed in doors or windows in my childhood, THAT HAVE NEVER REGROWN. All these little things I never paid attention to growing up, were all actually indicators of Lupus. Or so my rheumatologist says but I don’t know how reliable she really is because she only saw me for maybe 15 minutes before basically re-confirming what my kidney specialist already told me. “Yes you have Lupus… that will be $60.” 

Basically my body has/had been showing signs of distress and Lupus my whole life. The nail stuff. The bruising. The body aches… and I just ignored it because overall I felt healthy and the doctors never gave me a reason to suspect otherwise.

And again, I’m not saying that if these symptoms sound familiar that it means you have Lupus. Each case is different, and I’m just sharing MY experience. I’m no Doctor… but my relationship with Web MD might say different. 😉

Ps… I will probably never ever do this again. But since it is World Lupus Day, I feel like I must. If any of you are interested in donating towards The Lupus Foundation of America , I and other people would greatly appreciate it. I know it sounds super sketch some weirdo asking on her blog… but I will include the link to the official website and you can take a look. And like most donations, it can be tax deductible. And I’m not even asking you to send me the money, like I said I’ll include the link and you go can to the site directly. 

Again. No obligation to since you read this post… but if you’re feeling generous or interested, and it can be any amount, all of us with Lupus would appreciate it.

Here is the official link to the Lupus Foundation of America donation page.


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