The Life of Me, Smile Magee :)

I came into 2017 with a twinkle in my eye, and the knowledge that I wasn’t currently actively dying in my heart. Thanks to a Miracle ( the accidental discovery that my body and all it’s faulty parts LOVE and NEED prednisone ) I was finally off IV nutrition. I was gaining weight ( I was starting to resemble a women with actual curves, instead of an alien that desperately needed a cheeseburger) My body was attempting to digest food. ( I looked extremely pregnant.. but hey my urine wasn’t full of ketones. So I counted that as a major success!) I had a team of doctors that I deeply trusted. And I thought 2018 was going to be MY YEAR. Maybe the year I start school, Go on a grand adventure. And leave hospitals, IVs, and appointments in the past where they belonged. Me and my best friend have a tradition We started about when we were like 8 years old. that whatever song we hear at midnight on New Year’s Day is our theme song for the year.. And when it was “ The Greatest” by Sia I was just CE...

Dear August, Here we are again. I nearly forgot about your existence. And then Your arrival looms over me like a dark cloud. When back-to-school commercials start infecting the television And pictures of yellow school busses, and happy healthy children are plastered all over every store. I know that just days after you arrive everyone’s world will be out of “pause” And mine still will be. While the bright-eyed college kids I dream of being enter their dorms, prepared to unleash their potential to the world. I will continue to enter doctors’ offices. I will continue to fight a war with my health that may never end. I will be in the exact same place I was four years ago Where I felt I literally needed to put my job description on Facebook as “trying not to die.” Because after you come, August, People will stare, like I’ve grown a third head. Like no 21-year-old belongs in a non-college town. And continually ask me “how school is going.” And when I smile and say “I’m...

Last summer, I had a TERRIBLE, painful,  awful  cough that just wouldn't go away. At first my pulmonologists  guessed it was my windpipes collapsing, or possibly incredibly bad asthma. But through scans and testing, and treatments none  of the diagnosis's seemed to be right, and the cough just wouldn't go away. I ended up having to get a bronchoscope.   Which is a procedure where they shove this giant tube with a little camera on it. either down your nose, or throat, and feed it into your lungs. And do an array of test that involve, watter, coughing, and a bunch of other unpleasant things. This procedure is typically done under "twilight sedation".  Which means you are "awake" during the procedure. But so drugged and out of it you aren't really aware, don't feel pain or discomfort, and don't remember an ounce of the procedure when you "wake up".   But since my life apparently runs by "Murphy's law. " My par...

  When I was at the Mayo Clinic for 7 weeks last year. I went determined that I was going to meet an adorable guy who was also riddled with life threating illness, and  that was going to be my silver lining to my...  "Travel out of state for medical care because I'm litterally dying hospital stay" But when I got to the Mayo Clinic I was pretty sure I was the only person under the age of 70 that was being treated there.   I felt like I may be the only young adult in this faculty, possibly even in My side of the hemisphere that was dealing with my type of health issues. That was until one faithful day in the infusion waiting room I met Rachael She had a big brown eyes, an even bigger smile, She was 2 years younger than me.  Super spunky  Loved dogs And was a fellow IV dependent medical mystery. From the moment we met an instant friendship was formed. We would schedule our IVs on the same day, ask to share a hospital room  and jus...