We continue to feature the 10 excellent Diabetes Community members chosen as winners of our 2015 DiabetesMine Patient Voices Contest -- who of course will all be attending our Innovation Summit at Stanford University on scholarship this November.
Today, we're thrilled to share the story of a longtime type 1 in Utah named Amy Green. She's a former professional dancer and performer with a serious poetic itch -- who is now a stay-at-home mom with three kids. From that unique perspective, she has some interesting thoughts to share about improving diabetes technology and care.
DM) Amy, first tell us about your relationship to diabetes...
AG) I’ve had type 1 diabetes for 26 years. I also live with a mishmash of other autoimmune disease spinoffs. Some of them vague still. Overwhelming! But, put me in a room full of diabetics, and I can surely seize the moment -- talking, laughing and bewildering about ourselves for hours.
What's your day job at the moment?
I’m currently living in Utah and working as a stay at home mom to 3 rotten kids that I love very much. I worked as a professional dancer and performer before retiring to raise my children. I still dabble in the arts, volunteering in public elementary schools as a specialist teaching art history, and giving lessons on drawing, painting, and composition techniques. I love to write poetry and do watercolors standing at my easel (with a cute naughty toddler stepping on my sore diabetic feet).
You were a professional dancer? How cool!
My dance career was a dream job! It took me to many interesting art venues and theaters in Arizona, where I lived at the time. I worked with uber-talented people from around the globe -- even two other diabetic pumpers!! It was surprising to me, knowing no other T1Ds as a child, to end up working with other athletes who are!
Retired now, and on to raising small children, I am aware of how our youth need more opportunities to explore the scope of creativity at school. I enjoy volunteering as an art teacher to aid educators, and to help kids experience how the reading, writing, and mathematics they learn all day extends into their imaginative thoughts and inventions. It is definitely tough to choose and follow a career in the arts.
As a dancer, I often made only enough money to cover fuel to commute around the city. But I hope to help the youth I teach never to be afraid -- to at least explore, develop, and try. Art is really just techniques mixed with chance experiments. It’s a fun distraction from diabetes! I am glad to have a life that has been immersed in the arts, continuing on in different ways. It ignites a passion in me for trying new and difficult things.
dance is such a physically demanding job, with long /
unpredictable hours. How did you handle your glucose control during
It's a common assumption that diabetic athletes involved in fitness probably have better blood sugar control. That was not my case. I have always had EXTREME difficulties with insulin resistance, and the stress of strenuous exercise causing high blood sugar. I had to be very vigilant with finger pricks through rehearsals. I had to eat a lot of proteins and fats to combat diabetic fatigue so that my body could endure.
hours of such strenuous movement was tricky. I had to take good care of
my feet, soaking them frequently, and often dosing higher through my
pump on show days, when performance anxiety was high! I did not try out
a CGM until I retired to bear children and maintain an even lower
target A1C. That extra monitoring system could have been beneficial if
it had been available then.
Did you have any special tricks for keeping glucose on hand, or other 'hacks' to keep yourself safe while dancing?
I kept A LOT of juice packs backstage and in the dancer's dressing room. I had many quick costume changes, when time for testing was not an option before returning into the curtains. I always worried about 'bottoming out,' so I often staged my blood sugar at slightly higher numbers so that there would be no passing out. But that was a challenge, as higher blood sugar interferes with equilibrium and balance. I had to learn to focus my mind and be steady on my toes so precisely, even when I felt nauseous with my head spinning, and the typical DKA symptom poor feelings. I'm pretty sure I required more mental and emotional strength than muscle. This repeated endurance test was something that I look back on now, and wonder how I accomplished. Maybe just because I am getting older now, more tired, and worn out from the rigors of T1D -- agghhh!
And we understand you’re a poet, too?
Yes, I love to write poetry. Mostly silly, humorous or satirical. Not always diabetic themed, but I am often inspired by the T1D lifestyle, and I write a lot about our keen perspective, yet misunderstood behaviors. Here's one to jiggle your giggle:
Just Don't Eat
Pre-meal check -- then calculate.
Pump numbers then -- re-iterate.
'Bolus Wizard'! do your magic.
Add this 'n that -- a habit. Logic.
Why then? Aft' concise computing?
Eating smart. With NO EXCUSING!
I don't believe the false suggestion --
"fractions, ratios--make perfection."
The math... I've mastered.
But the BG check?
What the heck?!!
Fun! So what's been the most encouraging thing you've seen change in the diabetes world since your diagnosis?
Having an insulin pump has allowed me more freedoms, like magical diet privileges (say, maybe an impulsive doughnut at the grocery store?) I have mealtime flexibility, and more pinpointed dosage control. For my particular lifestyle, a constant insulin infusion has made each day and night more manageable, except for those random days when I yell and cuss out my mal-absorbing infusion site -- every ‘pumper’ knows what I mean :).
What would you say is missing as far as diabetes tech tools?
I don’t frown very often… but I’m a pouty-lip Sad Panda over the continuous glucose monitor I have. I was not prepared to have such difficulty with sensor calibration and constant data errors. It has not been the success story I was so jazzed over. And if they would last longer than the flavor in Juicy Fruit gum, it would be awesome. Sensor alarms are also not loud enough to alert me, having some slight hearing loss. I have more volume options on my $200 cell phone than I have on my $2,000 CGM -- lol! I'm sad over it’s unreliability -- especially since I had to sell my first pancreas to get one.
What would you name as the most important next steps in diabetes innovation?
High on the priority list of reliable technology, as is our need for more proactive and passionate doctors who want to dive deeper into solving patient mysteries. What is this great domino effect of diabetes and the onset of subsequent autoimmune disasters as we age? I spent a decade suffering from undiagnosed hypothyroidism -- a tired, rundown zombie going from health clinic to clinic, almost believing maybe I was a hypochondriac? I was constantly being told to just take better care of my ‘sugars’ and exercise.
Finally, one great paying-attention doctor thought to check my thyroid levels. I advocate for more thorough patient testing, and analytical patient-doctor team thinking. Tracing hormone levels, and checking patient gut health, etc., is as important as A1C scores, in the total health picture. Diabetes is ruthless and unforgiving. More assertive care and attention, sprinkled with REAL LISTENING… is BY FAR, the best innovation!
Why did you decide to enter the Patient Voices Contest?
I feel I am a confident voice who can speak up to relate, collaborate, spread concern, share optimism, and be open-minded to hear out and test new insights.
Tell us a bit more about the life hack (or hacks) you submitted as part of your contest entry?
Having many glucometers for quick, easy access all around the house/workplace. Meters littered in the places you frequent most, is key to keeping encouraged to test often and on time. My glucometers are like the Kardashians of diabetic machines -- in extravagance, in excess, and annoyingly everywhere. If only the cases came in cheetah print...
Also, I submitted an idea to help achieve a secure tape-down for your CGM sensor, since everyone complains about them coming unstuck. I just apply a Breathe Right strip, and then a favorite tape product over the top. This gives the needed push-down-into-skin tension to keep my CGM sensor comfortably in place.
What are you looking forward to at the Innovation Summit?
Meeting with improvement-driven people who develop diabetes technology and modern therapies. Sharing with them some of the challenges of living diabetic long-term. 'Chewing the fat' over how diabetes impacts choices in the health provider community. And most fun of all, figuring out… what can I do to help?
Thanks for sharing your story, Amy! Excited to meet you in November, and see what you can do on this "diabetes advocacy dance floor" of ours... :)