12 November 2011

heart on, brain off.

coffee. aloe & wheatgrass. channelling my inner badass. laundry. packing. chasing our girl. dropping everything to soak in a steaming hot bubble bath with epsom salts. utes game in a snowstorm with my love. catching snowflakes on our tongues.

am flight to baltimore. my dear gem of a friend who knows my daily battle with this disease more intimately than everyone else. meeting new shining diamonds in our world. bonds that cannot and will not be broken.

nih. start 24 hour urine. (yes, i said urine. ;)
eye clinic to check the crystals in my eyes.
echocardiogram. more doctors.
shelby. bec. my cheerleaders.
two of my soul mates in this life will finally meet and the world just might implode at the beauty of it.

nih. bloodwork.
ekg. ct scan of head and chest.
renal ultrasound. swallow study.
shelby. bec. girls who have been with me through hell and back.
i will drink up their company and bottle up the laughter that fills the air while the three of us are together.

nih. bloodwork.
pulmonary function test.
results of all this fun stuff with dr. g and team.
rush to airport. fly home.

whole grain blueberry pancakes with organic maple syrup.
cuddles with my girl.
dance parties.
celebrating the magic all around us.
eating up the hope like ice cream

happy weekend!
do something that scares you.
you will learn so much about yourself.


  1. Good luck with everything this week. :)
    "Carpe the hell out of this diem". Heh. I like. :)

  2. Hey there! I started following you recently, so this might be old news, but I just read about your NIH trip. I just finished up a clinical trial there in September, so if I can help with any questions, concerns, logistical worries, etc., please feel free to hit me up! I went into it quite confused, but believe me, you'll be a pro by the end. ;-)

    rainintorainbows at gmail dot com

  3. Hey girl! Good luck with all your stuff at NIH. You aren't by chance connecting through ATL, are you? I'd totally love to say "hi" and give you a big ol good luck hug.

  4. Good luck! Sending a ton of good vibes!

  5. i sure hope that all goes well!

    having great friends to do it all with is just...indescribably necessary!

  6. Just found your site tonight! I hope everything goes well for you. As someone who suffers from chronic illness I know how exhausting all the tests are and how mentally draining it can be. Not to mention how it affects the family!

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