
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 š
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. š
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 Iām just as crazy on the inside, my mother had me tested š
To speak about living with Lupus would be like trying to explain the Cosmos to someone who has never seen itā¦the complexity and individual experience is so vast, so differentā¦not just from person to person, but also from day to dayā¦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 issuesā¦I have no less than three calendars and a scheduling App on my phoneā¦Some days, I have to crawl up the stairs when my Go, Go SpazzyLegs just donāt 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 wonāt 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 businessā¦I am the poster child for stress!
Hereās the thing:
I think that after my diagnosis in 2010, and subsequent secondary affliction diagnosesā¦I made myself into a āvictimāā¦I mightāve cried, mightāve cussed, mightāve done a little of the Whine-1-1. Heck, I mightāve been a little (read: big) drama llama.
And you know what? Those feelings ARE validā¦itās 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 agoā¦two, actually:
1. I have Lupus. Epiphany? I am NOT Lupus!!
Iām a mother, a wife and a friend. Iām an international blogger, a Chartered Herbalist and a creative arts design team member.
The instant I start to talk in āill-speakā..saying things like, āIām chronically ill.āā¦or, āIām sick.āā¦I re-victimize myself all over again and I throw the very essence of who I am to the wind.
Who are āYou.ā?
Who are āWe.ā?
We, my dear friendsā¦are chronically awesome. š
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 āmeā that is āMe.ā 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 familyās journey, to speak the words that other Lupus warriors want to say, but may not know howā¦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 itselfā¦my ability to keep on keepinā onā¦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 choiceā¦to be here.
āWEāā¦made a choice to gather together in solidarity to present ourselves to the public as the voices and faces of Lupusā¦
Well, my friends, that is
Chronically Awesome: Achievement ā Unlocked.
Letās make a choice, thenā¦togetherā¦to be proudā¦to be LOUDā¦and show the world that weāre fighting for ourselves, for our loved ones, for those who have come and gone before usā¦and for the future we deserve to have.
Choiceā¦itās a beautiful thing. Thank you.

Lady-friend, you rocked the poop out of that speech! Nicely done.
“drama llama” …. luv it!
Way to go, Pattie!