I’ve been keeping a secret from you.
It’s a good secret, but a lot of work needed to happen before I could share this…
To admit that I’m scared that this will be a colossal fail and that no one will want to come would be true.
I hope that I’m wrong.
I hope that this will be everything that our community needs and wants and that this will be the beginning of something amazing.
This has been a long time coming.
The original idea was simply a wish that I frequently uttered quietly (often to myself) at the end of diabetes conferences or meetings:
“I wish that we could just sit and talk about living with diabetes and how we feel about living with it. Share with each other. Learn from each other.”
I articulated this wish at the Medtronic Diabetes Advocacy Summit in January during a brainstorming session about what each of us wanted to accomplish for the diabetes community.
“No tracks to choose. No keynote sessions. No separation of people by category or type. Real discussions in a safe place about the psychosocial aspects of our lives with diabetes with others who get it. We decide what we want to talk about - and then we talk about it.”
There were nods in that room (and one or two exclamations of “Hell, yes!”). I left that meeting with a head full of ideas about this… but I couldn’t do it by myself.
That’s what a community does. It helps, supports, and celebrates. With some gentle prodding from some advocates and the amazing emotional backing of my husband, I quietly created The Diabetes Collective, Inc., a Florida non-profit corporation (currently waiting for the IRS to bestow that 501 (c)(3) designation) and signed a contract with Caesar’s.
It’s on. It’s begun.
Please read below - and share the excitement with me for The Diabetes UnConference.
If you are an adult with diabetes, come join me (and others just like me and you) in… Las Vegas from March 12 to 15, 2015.
I would love to meet you and learn from you and others about living well with diabetes.
Here’s the official announcement.
The Diabetes Collective, Inc. is pleased to announce The Diabetes UnConference, the first peer-to-peer support conference for all adults with diabetes.
The Diabetes UnConference will be held at the Flamingo Las Vegas from March 12 - 15, 2015.
The first of its kind, The Diabetes UnConference follows the “unconference” concept of peer-to-peer idea exchange made popular by the tech community. The actual agenda is set the first morning of the conference, drawing from the needs and desires of the attendees and discussions will focus on the psychosocial aspects of living with diabetes.
Manny Hernadez, co-founder of TuDiabetes.org and winner of the Community Spirit Award from the American Diabetes Association, states: “Life with diabetes is challenging enough to go about it on your own. Peer support is essential to thrive for people with diabetes. It is also critical to help us build the kind of movement we need to have around this condition that affects more than 26 million people in the US and 400 million people worldwide.”
Founded by Christel Marchand Aprigliano, The Diabetes UnConference is facilitated by volunteers well known to the diabetes community: Bennet Dunlap, Heather Gabel, Manny Hernandez, Scott K. Johnson, George Simmons, and Kerri Sparling. These diabetes community leaders are familiar with the topics that will be covered; each live with diabetes.
Topics may include dealing with depression and diabetes, countering burnout, diabetes “life hacks”, dating, parenting with diabetes, revealing your diabetes to others, and much more.
Peer to peer support has been shown to be highly beneficial to those living with diabetes. The report, “Peer Support in Health – Evidence to Action,” summarizing findings from the first National Peer Support Collaborative Learning Network shared that: “Among 20 studies of diabetes management, 19 showed statistically significant evidence of benefits of peer support.”
For more information and to register, visit www.diabetesunconference.com.
I’ve never heard anyone describe injecting insulin as graceful or gentle.
The needle bears down onto unblemished skin that begs to not be pierced. Nerves scream in anticipation as the metal bores underneath, invading the sacred temple of the body and pushes the very cells that give me corporal nourishment. It sears and brands the skin around it, leaving a physical scar behind as a permanent reminder of what I must do to stay alive.
If I told a stranger that I hurt myself on purpose daily, they would recommend psychological counseling immediately.
Not every needle insertion is a hot branding, but when you must, without fail, do this tortured dance for the rest of your life, knowing that you have endured over three decades of this, it begins to ache deeply. Even with smaller needle gauges and shorter lengths, no one has ever gleefully clapped hands and asked to be mutilated for their health.
Over and over, a lancet finds its target somewhere on a finger, slicing into the same tender skin that strokes my daughter’s hair as she drifts off to sleep. It’s become rote at this point, a slight turn of the head at the same nanosecond that the button is pushed to draw blood. A sting, temporary, to decide on the dosage of the drug that will keep me alive but could also render me unconscious or dead. That sting, several times a day, over time, is a weight that drags me to the bottom of the ocean, gasping desperately in my dreams.
Too much insulin and diabetes hurts. It starves brain cells and prevents me from making rational choices. The throbbing between my eyes competes with the violent contractions of my limbs to squeeze out the last vestiges of glucose within my muscles. My throat constricts, choking on the words needed for help.
Too little insulin and diabetes hurts. Toxic sludge sloshes through my veins, spewing poison into every organ and damaging the beautiful body my soul holds, shutting down the potential of a long life and health. The complications build an ugly monument where the delicate framework of what I am once stood.
The guilt crushes you, despite your best efforts of controlling what is uncontrollable. The questions of why build to a deafening roar. Labs slam your body into a corner, even when the results are expected. It infiltrates and infects those around you who love you and can’t live in your body or take the burden from you.
You may accept this disease. You learn to live with it, try to tame it, keep it in check and at bay. You talk about it, claim it, share your thoughts with those who understand. But it bites and scratches and never relents. It will sink its viper fangs into you and not.let.go.
No one said it would be easy. I knew it would be hard.
But no one told me when I was diagnosed that diabetes hurts.