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I get up every morning. I test my bloodsugar, give a morning dose of insulin. I decide where to place my pump in the outfits I'm considering. Some mornings, I wash away pump stickiness in the shower and insert a new canula. Some mornings, I treat a low bloodsugar, quaking and pale at the kitchen counter. All of this, while feeding the cat and getting ready for work. Drying my hair and putting on lip gloss. Trying to find the right shoes and grabbing a book to read at lunch. Diabetes comes with routines that often fit, tucked quietly, into the other routines my life holds.
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I am snuggled safe in my bed, with my insulin pump tucked up against me, working just fine. I wish I was aware of this.
But I'm not.
I am in the living room of my Aunty Dot's house in Weymouth, MA. The purple seventies style shag carpeting growing up between my toes like grass. I am leaning on a plaid recliner. My brothers are there. We're kids. And we're with my dad. We're eating chinese food. Only my chinese food is pink. If I explained all of the things wrong with the above scenario (for example: my Aunty Dot has been gone a long time and she never actually had a shag carpet), the pink chinese food would seem perfectly fine. .
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With guests in our office, we went to the local Mexican restaurant for lunch on a Thursday. My Novolog pen was tucked nicely in the long, front pocket of my purse, which was sitting on the chair next to me. I had tested prior to leaving for the restaurant, so I felt confident that I didn't need to bring my meter with me. We ordered and started munching on the chips and salsa placed on the table in front of us.
I discreetly pulled the pen from my purse in anticipation of my lunch showing up and held it in my lap under the table. One click for the corn chips, one (maybe two?) for the beans, two for the rice. Sigh, the chimichanga is made with a flour tortilla. And cheese. Lots of cheese. I wildly guessed what I should take for the whole shebang.
Back at the office, I struggled to remember what time I had started eating. We'd been gone for about 90 minutes, but I thought it had only been roughly an hour since I took the Novolog.
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Been having weird dreams... Guess I'm a little anxious about the endo tomorrow... So in honor of odd dreams and anxiety:
Twas the night before my endo appointment, when all through the place
Not a meter was stirring, had my pump at my waist
My gym clothes were tucked in my backpack with care,
And I hoped that my work would show on the scale.
And I was nestled all snug in my bed,
While visions of low A1Cs danced in my head.
And me in my 'kerchief, and Bob in his cap,
Had just settled our brains for an early fall nap.
When in a weird dream there arose such a clatter,
The doctor he told me everything was the matter.
He said that my A1C had risen so fast,
And my weight was through the roof, I was simply aghast.
The moon it showed down as I tossed to and fro
The bad news continued from my dreamland endo.
When, what to my sleeping brain did appear
But a 400 plus cholesterol number, and my control-loss so clear.
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This is
World Diabetes Day, the first annual, and the international community is embracing its message by flying high the striking
blue symbol of the disease. The message is about waking up the world to the growing impact of diabetes on our young and old- this year's theme focusing on children and adolescents. The innocent faces of the disease give a hammering reminder of what we are striving for, worldwide awareness, more scientific breakthroughs, and a much needed cure.
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I am on the floor of my brother's living room. My three year old nephew in my lap. He is reading to me about elephants and tigers, complete with animal sound effects. His body presses against my insulin pump, which in turn presses against my hip. I had almost forgotten that diabetes sits with me, even in these gorgeous, irreplacable moments. An unwelcome resident of my body, my mind, and my heart.
A little later, my nephew comes out of his bedroom and stands in the middle of the kitchen. He has a block tucked into the waistband of his pants. He pulls it out and starts pushing imaginary buttons.
I ask "What are you doing, Milton?"
"Giving my medicine, like Aunty Coley," he responds.
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False hope begins with an article torn out of a magazine, folded up into a neat square and given to me by my friend's mother. A photo of a cute 7-year-old girl with an embroidered pink flower clip in her hair lying on her bed alongside an expressionless Hello Kitty doll tucked behind pink pillows. The girl displays three white pills in one hand and a blue insulin pump in the other. And, of course, a smile. A warm, understated smile.
And my focus turns to words. Words in bold; words that are capitalized; words that are enlarged.
"
From Pump to Pills"
"
LIFE-CHANGING NEWS"
"
First grader with DIABETES can now live her life free of daily insulin injections"
Being cautious about getting too excited, I scan the article for conjunctions such as
however, but or
although floating across the page like dark rain clouds.
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The waiting room in endocrinology was like an assembly line of children with diabetes. Each time one child went in, another appeared. Then another and another and another. Very sad.
I zoomed in on a cute little girl with shoulder-length hair and a top with purple and red hearts as she buried her face into her father's shirt as he talked to the receptionist. Maybe just diagnosed? Don't know for sure. She had a sort of worry that should never be on a child's face.
I leaned over to Susanne to point out the girl, but she said "I know."
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Charlie clutched Baby Doggy, a small puppy with a thin blue collar, and pulled the comforter higher onto his shoulders as we tucked him in. Baby Doggy's age starting to show in its fading gray coat and crusty tail. He also squeezed a small stuffed turtle named Pop as Susanne removed his insulin pump from his waist and gave him a correction for a blood sugar of 530.
Diabetes has spawned many emotions from Charlie. It has made him angry many times, frustrated often and ferociously defiant. On rare occasions, it's even made him happy if you can believe that. Skipping long lines at Disney comes to mind. Oh, and you should see how he dances around the hospital gift shop after an endo appointment.
But, on this night, something new. He was scared of diabetes.
"What if it goes up to 700?"
"What if it goes up to 1100?"
"Does it go up that high?"
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I debated where to wear Toohey today: in my pocket (out of sight) or on my belt as I always do. Prior to this morning, I had been to my new office three times: twice for interviews and once to sign my offer letter.* All three times Toohey was tucked neatly in my pocket, no tubing was visible, I was a normal-looking person.
So I debated for several days and ultimately decided not to hide, to wear Toohey on my belt as always, to be myself. I decided though to not come out and say "Hey, I have diabetes" on my first day. I just wanted it to flow, to just happen naturally. I really thought I would have had some questions since Toohey was so visible.
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