The New Kid on an Old Block…

hello-my-name-is1#HAWMC Day 2: Introductions – Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?

 

So, you’re wondering why there’s been a shift in the celebrity scene with respect to Lupus? Seal, the musician. Toni Braxton. Maurissa Tancharoen (you can find her blog here: It’s So Not Sexy). Venus Williams, tennis star. Nick Cannon. Hell, even Lady GaGa is suspected to have either Lupus, or an autoimmune condition of a similar nature. Shall I continue? It’s becoming more prevalent, because healthcare teams are becoming a wee more “associated” with it’s impact. They’re learning how to better identify it’s factors, it’s ANA, it’s symptoms…

Lupus is the disease of a thousand faces.

Mimicry is not the sincerest form of flattery. It can have devastating consequences on the health of an individual. Lupus can be diagnosed with clinical testing, yes…but it also takes a helluva lot of deductive reasoning and ruling out a thousand other issues. And by already over-time-taxed physicians or, worse, those that need to “see it to believe it.”

Bone-crushingly fatigued? I have five kids.

Uber-rash across your face? I have sensitive skin. Should probably wash my makeup off better.

Hounds-of-hell joint pain? I’ve spent years hopping over baby gates, managing as a single mother (of said five kids) for two years, doing, doing, doing……

Every single symptom I have ever had can be explained away in an instant.

There are a few different forms of Lupus.

Discoid Lupus Erythematosus (DLE and Subacute Cutaneous Erythematosus: skin form of Lupus, with or without systemic involvement.

Neonatal Lupus: uncommon, but affects a newborn.

Systemic Lupus Erythematosus (SLE): The badass of all lupus…it’s an ass-hat. It can either affect you mildly, or progress to total organ failure. I have this one. Because…of course I’d have this one.

Lupus is not contagious.

Smiles are. I like smiles. Hugs are cool, too…but gently, as many lupus patients have secondary syndromes (like fibromyalgia) that makes it hurt to be touched.

There is no cure for Lupus.

There are “managements.” Benlysta has been the first lupus-specific pharmaceutical to be approved in Canada over the last 50 years. But, hope nonetheless. There are other drugs prescribed. Anti-malarials. Anti-epileptics. Drugs that are meant for other diseases, but kinda-sorta-maybe might alleviate lupus symptoms. (o.O)

There is no cure for Lupus.

I’ve said it once, I’ll say it again. There is no one tablet, prescription, food, prayer, whatever that cures lupus. You can provide to yourself whole-body care that will lead to REMISSION…That’s totally tubular. No, I don’t know how.

Yes, I’m totally trying.

But to click links that promise to hold the end of all that this nasty, mo-fo disease has in store…that’s not just cruel, but in a health community afflicted with very desperate people trying to find relief…it can be downright dangerous.

I advocate for the “Real-ity.”

I’m not a purple painted ponies pooping butterflies jacked up on SugarSmacks kind’o’gal. I call it as I see it. That being said, I also don’t commit to playing the “Whine-1-1” game, either.

Balance.

Real life, by a real woman with real challenges raising five children, working and managing my mo-fo disease and it’s plethora of secondary afflictions in a made-for-tv-movie kind’o’life. I have good days and less-than-stellar days. And you’re going to hear about it.

You’re also going to hear about my addiction to nose spray and scrapbooking. That I love Steampunk. That I found shoes for my lower lumbar that alleviate the hounds-of-hell pain of post-lumbar vertebral rupture. That I love my blind rescue Cocker Spaniel, Rosie. That I despise the gym with a love-hate relationship to the depths of my being….

I digress…

That I strive to do the best that I can with what I’ve been given. It is my hope that readers can pull what they need to in order to find their #gladitude…a little inspiration…a little bit of reality not unlike their own.

Your Friendly Neighbourhood Canadian Chronic Badass.

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One response to “The New Kid on an Old Block…

  1. “I have good days and less-than-stellar days. And you’re going to hear about it.”

    Shout, Sister. xo

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