Jacked up on Facecrack

“How social media has impacted your chronic illness experience”

One of the worst realizations I faced, when I was first diagnosed (as in, first first…not after the umpteenth diagnosis since but the first time for any of those)…was that I was alone.  Solo.  That suddenly my world contained not just the “regular” me, but now this “new” me…which was NOT “new & improved”…but, rather, “sick and diseased.”

Damn.

Alone.

A Maverick.

A pissed off, sad, uninformed, crazy-eyed, pain-filled, chronically ill Maverick.

Hold on.

I can’t be the only deranged, cuss-filled Maverick on the planet.  Can I?

Google. Tattoo.  It’s coming.  Soon.

Facebook.  Search.  Little magnifying glass.  Go.

Twitter.  Twitterverse.  Tweeps.  Hashtags.  #lupus.

Google+.  What the hell is it.  Circle.  People.  Got it.

LinkdIn.  Connections.  Networking.  Not-really-so-sure-I-get-it.  Whatever.

Well holy crap on a cracker, Sheldon…if I’ve got access to the Mystic Warlords of Ka’a game on Facebook…the whole WORLD is within my grasp!!!

And, honestly, it has been my saving grace.

People.  Everywhere.  All over the world.  Chronic.  Illness.  Fighters.  Warriors.  Tears.  Laughter.

Better yet?  I’ve found people who take an active and PRO-active role in not just their healthcare, but their lives as a whole.  Their relationships with family…with friends…with employers…

Yup.  I’ve also found the ones who play up the Whine-1-1.  Sometimes? Sometimes people are just lost and confused and feel alone.  I wish they would realize just how Un-Maverick they really are.

What kinds of stuff do I do on all of the forms of “social media”?  Well, that depends what I’ve logged onto as.  @SpoonieVille?  Ya, that would be posts related to links of health-related issues pertaining to any of my eleventy-billion afflictions.  Brynn?  Well, gosh…that’s the made-for-tv-movie of the chaos of my own personal reality of having five kids, two cats and partridge in a freakin’ pear tree while planning a wedding.  VikingBrynn?  Well, I can’t remember.  Seriously.  Sudden case of stupid brain fog. (seriously…what the heck?!?!)  Needless to say, it’s because I kick ass every day by doing what needs to be done.  I don’t like it…pushing through pain like this…but I do it.  I’m my own damned Nike commercial.  ‘Cept with a sword and a black leather corset instead of apparel and sneakers.

What I like best is connecting with people who are sharing personal stories.  Like?  Like their doctors appointments!! Why?? Because there is always a little tidbit of information that either I can use for better communication with my own physicians, or that I can use to dispel certain things that I’ve been told by them.

I also like to find blogs where people share their personal groans.  Why?  Because they’re apt, if you ask nicely, to clarify…I have found out some really awesome suggestions based on the “Holy crap, I have that TOO!!!” followed by, “Now I can try THIS, instead!!”

I also remember that they are not doctors.  I am not a doctor.  Given what many chronically ill feel about doctors, I can’t say that’s a bad thing…

I have opened up a plethora of space in my last four remaining brain cells to shelve these wonderful bits of “try this”…”have you thought about that?”…”please don’t do ‘x’ if ‘y’ is bothering you”…

Bestest part of the everything that makes my social media work for me, are the comments of “Thank you.”

My life is an open book.  Not even Oprah could believe half the shit I endure on the short bus to the crazy train on my way to SpoonieVille…not a chance.  But I share.  I share the good.  I share the bad.  I share the quizzical (I love that word).  By doing so, I am attempting to open up dialogue, conversation…questions…comments…

I am attempting to make sure the rest of the Mavericks out there know that they, in fact, are NOT alone.  The more comments I receive, the more I know it’s working.  The more RT’s, which I’d previously only had to Google not…what…7 months ago?…tells me that it’s working.  The more “Share”‘s are clicked…the more “+1’s”…all tell me that I am not the only one who was given a shitty deck in the game of life, because someone, anyone, can find ONE thing per post that resonates with them, their mother, their daughter or their beloved Uncle Bob.  It also tells me that there are most assuredly other Mavericks out there who are up to the challenge of spreading the word of their fellow chronic badasses.

It tells me that people are up to changing the way they play the game.

And hey, Lupus…don’t you dare think I won’t trump your Enchanted Bunny and play The Dead Meemaw card against you or any of the eleventy-billion afflictions that I have.

Not for one second.

I learned how to play on Facebook.

“Game over, Moonpie.” ;o)

6 responses to “Jacked up on Facecrack

  1. Wow. You. Rock! That was a great post and very helpful as I’ve yet to dive into a lot of social media– It’s always felt like a lot of work without enough time in the day but you make an excellent point about all the help, support and info it brings to the table. Maybe I’ll dip my toe and go a step or two beyond blogging.
    Thanks.
    And PS– You’re a very good writer!

  2. Wow – you do rock, I like your writing style. Yes chronic illness does suck, I have Narcolepsy and my DD has Uveitis. But social media is our saving grace. Amen.

    • Thank you so much for taking a few out of your own day to partake in a little craziness of mine! ;o) I’m glad you’ve also found the interwebs and all it’s goodies helpful as well!! xoxo

  3. Love this! Found you through the Chronically Awesome Bloggers Facebook page.

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