Wow, I'm such a nerd. Well, you knew that already, but, fun fact- I L-O-V-E the band Chicago, and Peter Cetera rocks my socks. Now you know. The jig is up.
Anywho, I chose this song today, not only because of my love for Peter Cetera, but because as you read this, I'm 30,000 feet or so in the air en route to Chicago. The Windy City! I'm attending a conference, the Adult Congenital Heart Association's 7th National Conference, and fortunate that it happened to land one week post my monthly chemo. That's usually when I feel the best in terms of fatigue and pain. I was hoping I'd be able to escape all things lupus related, but, I have to find a LabCorp near my hotel to get blood work. So close!
Without sounding like I'm tooting my own horn (seriously, I'm not this time), since I've begun going on these speaking gigs and sharing my story with those willing to listen, people are constantly telling me how brave and inspirational it is to do what I do. But the truth is, in the wise words of Peter Cetera, you're the inspiration for my doing what I do. Cheesy and cliche, hell yes. But genuine.
The love, the support, the belief in me and all the "you go girls!" are what keeps me going. From diagnosis in 2008 until going on disability in 2012, I pretended lupus didn't exist. I ignored my body screaming at me to put on the breaks, worked full-time and went to school like a crazy person, I partied away the mental and physical pain, and had not one care that I was literally running myself into the ground.
And then I had my enlightening wake up call, and 2+ years later, I'm just now starting to get some relief from this never ending flare. I'm adamant about living my life and having fun, but I no longer feel like I have to put on a show. I'm comfortable with not hiding behind makeup to cover the rashes and wigs to hide the bald (don't get me wrong, it took awhile to get there!), I just say NO to things when I feel like shit and I don't feel bad about it; this is lupus, it's ugly, it's bloody, and painful, it can tear up relationships, it's expensive, exhausting, depressing, but it's part of ME, and if you can't handle the brutal honesty I bring then you better just check yo'self before you wreck yo'self.
Um. Did I just say that?
I sure did, and I'm not taking it back.
Where was I? Oh, yeah, doing what I do. As awful as it is, I still get out of bed everyday. OK, sometimes I roll to the edge and hobble to the bathroom. Sometimes taking my morning meds is so tiring that I'm back in bed the rest of the day. Sometimes I use the Pimp Cane to help me walk, and sometimes the cart at the grocery store is better used for holding me up than holding my groceries. But, my point is, I still get up, and I can still do my thang. Believe me when I say, I treasure the good days.
Damn, I'm wordy. I guess I'll never write the Great American novel. So, I continue with what I'm good at. Raising awareness. Being funny and making people laugh with my brutally honest tales of the lupus life. Demanding that important people in the health care industry listen to me and make some changes already!
Yeah, this is the part where I ask you to donate…. you knew that was coming.
A friend from college has offered to donate proceeds from his trilogy of books (yeah, he's an author. Flipping cool!), Keeper of the Water, for the month of September to Team Lupalicious, my team for the annual Philadelphia Lupus Loop. I know a bunch of you are big readers, so I ask that you purchase his books, support Kevin AND support little ole' me at the same time! A win-win! They are Kindle editions on Amazon (you don't even need a Kindle, just download the app), so get to downloading, reading and donating to a great cause!
Book 1- Drinking Life http://www.amazon.com/Drinking-Life-Keeper-Water-Book-ebook/dp/B005DSA1T4/ref=sr_1_2?s=books&ie=UTF8&qid=1409274458&sr=1-2&keywords=Keeper+of+the+water
Book 2- Recruits http://www.amazon.com/Recruits-Keeper-Water-Book-2-ebook/dp/B006VUYO3C/ref=sr_1_1?s=books&ie=UTF8&qid=1409274540&sr=1-1&keywords=Keeper+of+the+water
Book 3- The Water Queens http://www.amazon.com/The-Water-Queens-Keeper-Book-ebook/product-reviews/B009JGLZ7I/ref=dp_top_cm_cr_acr_txt?ie=UTF8&showViewpoints=1
You can also donate directly to Team Lupalicious, but you don't get anything cool to read…
Donate to Team Lupalicious!
And if you want to decorate you car and show lupus support, you can still buy the Luck Fupus #Team Marla car decal from Fluttering Creations
Car decals are COOL!
This post was far longer than I anticipated. Love you all <3