A voice, a walk, a community

Saturday, May 10th, was the Ottawa Walk for Lupus! Coincidentally, also on Lupus Awareness Day.

Go, Go SocialAnxiety Girl here was asked to be a guest speaker…and I can tell you: I didn’t pass out or trip on the way up 😉

I wanted to point out a couple of things about why I wrote what I did:

1. I mentioned “Cosmos”…because it equally throws me snafu’s as it does blessings.

2. Chronically Awesome…because Jules and her foundation are a source of cosmic awesomeness…and shares my belief that you need to own your shit and be a pro-active part of your whole body health care.

3. Llama…because, epic. 😉

4. “My mother had me tested.” …relevance to one of my favourite shows, but also because it’s true. On both counts. *shifty eyes*

5. Keep on keepin’ on…because Rhian should have been there…but her spirit, I’m certain, was. xoxo

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Thank you, Lisa!!
I can assure you all that I’m just as crazy on the inside, my mother had me tested 😀
To speak about living with Lupus would be like trying to explain the Cosmos to someone who has never seen it…the complexity and individual experience is so vast, so different…not just from person to person, but also from day to day…that words couldn’t possibly illustrate the reality.

So, what *is* the reality?

For me, Lupus throws searing joint pain at me one day, then a facial rash the next. Some days, I have cognitive issues…I have no less than three calendars and a scheduling App on my phone…Some days, I have to crawl up the stairs when my Go, Go SpazzyLegs just don’t work.

Depression often hides around the corner and very often peeks out every time I have to cancel a social activity or, as the usual, just won’t commit to them.
Many of us here, afflicted or not, knows that stress often exacerbates our symptoms.

Dude, I have FIVE children, a husband and I run my own business…I am the poster child for stress!

Here’s the thing:
I think that after my diagnosis in 2010, and subsequent secondary affliction diagnoses…I made myself into a “victim”…I might’ve cried, might’ve cussed, might’ve done a little of the Whine-1-1. Heck, I might’ve been a little (read: big) drama llama.

And you know what? Those feelings ARE valid…it’s NOT all in your head and it IS scary beyond all reason. I never let anyone invalidate my experience of having a less-than-stellar day.

BUT:
Here is the epiphany that I came to a couple of years ago…two, actually:

1. I have Lupus. Epiphany? I am NOT Lupus!!

I’m a mother, a wife and a friend. I’m an international blogger, a Chartered Herbalist and a creative arts design team member.

The instant I start to talk in “ill-speak”..saying things like, “I’m chronically ill.”…or, “I’m sick.”…I re-victimize myself all over again and I throw the very essence of who I am to the wind.

Who are “You.”?

Who are “We.”?

We, my dear friends…are chronically awesome. 😀

2. I found my Secret to Life last year by acknowledging, embracing and believing in my second epiphany:

Choice. I have it.

Choice is the kryptonite of Lupus. True story.

I choose to continually find the ‘me’ that is “Me.” by learning new things.

I choose to make self-care a priority in order to have a quality of life while working with my limitations and adapting to my challenges.

I choose to use social media to connect and share my journey, my family’s journey, to speak the words that other Lupus warriors want to say, but may not know how…I write to prove that none of us are ever alone.

Lastly, I choose to acknowledge my inner hero because my reaction to this disease, taking ownership of what I can do to help my body help itself…my ability to keep on keepin’ on…is being watched. By my children, my husband, my family and friends.

What do I want them to see?

What do I want YOU to see?

YOU made a choice…to be here.

“WE”…made a choice to gather together in solidarity to present ourselves to the public as the voices and faces of Lupus…

Well, my friends, that is

Chronically Awesome: Achievement – Unlocked.

Let’s make a choice, then…together…to be proud…to be LOUD…and show the world that we’re fighting for ourselves, for our loved ones, for those who have come and gone before us…and for the future we deserve to have.

Choice…it’s a beautiful thing. Thank you.