These individuals help to make our lives… livable. My current CDE is amazing (shout out to Michele!) and without my favorite “teaching nurse” (which was what Joslin Center called them; they’re diabetes educators…) Cindy, I would have been
a mess more of a mess in my teens and twenties.
If you have the honor of knowing a CDE, take a moment to thank them. I plan on doing a lot of that for the next few days.
How excited are my blood sugars?
Very. In the wrong way.
I feel like I should yell “We Are Sparta!” as I rage bolus.
In between the DOC-centric presentations (Cherise of DSMA is speaking today and Bennet, Kerri, Jeff Hitchcock and Dr. Block are speaking on Friday), I’ll be talking with exhibitors about the latest products on the market and with diabetes educators doing some amazing things with… diabetes education.
So, this is just a quick post to say:
“Please buckle your seat belts and place your tray tables in the upright and locked position. We are ready for takeoff.”
In less than twenty-four hours, I will be surrounded by my tribe.
Friends for Life, the premier conference for families with Type 1 children (and some of us Type 1s who are children at heart), is going on in Orlando for the next few days. It’s the one conference that no one will ask you if you can eat that, look at your pump and wonder aloud if it’s a pager, or want you arrested if you say you’re high and pull out a needle.
The tribe grows larger this year. I’m honored to be on a morning panel for the first ever Diabetes Advocates MasterLab - a full day session discussing the importance of advocacy and how everyone touched by diabetes can be an advocate. What’s special about this is that we’ll have Type 1 and Type 2s together, along with the parents and grandparents of Type 1s (with some of them being Type 2s themselves). The more encompassing the tribe is, the more powerful it becomes.
For as horrible as this disease is, there is comfort in the solidarity of the tribe. Complete strangers give knowing nods in passing, acknowledging green bracelets signifying Type 1 diabetes on each others’ wrists. When a Dexcom trill goes off in a room, twenty people look down to see if it’s theirs. Someone has a low blood sugar? A torrent of glucose tabs rains down upon them.
There is such comfort in being with others who understand the silent wish as a meter counts down to a number. There is such joy in celebrating the new, squishy babies of T1 moms. There is even such pain as the tears flow when a fellow T1 speaks aloud your innermost fears. We are bound together by blood. And nonfunctioning pancreases.
The dream of The Diabetes UnConference came out of last year’s attendance at Friends For Life. I learned so much, but it was the moments of “life discussions” outside of the meeting rooms that sparked so much of what has now become a part of me. This year’s Friends For Life will continue to be a catalyst in how I live and be an inspiration of who I want to be.
I am eagerly awaiting the open arms of the tribe that no one ever wanted to join.
Wanna know what gets me all fired up? I’ll get to that. First, I want to tell you how I got here to get fired up.
Thank this guy.
Without John, I would have never found the Diabetes Online Community. It was his “What are you going to do about that?” to my lament over the lack of podcasts about diabetes way back when that began me on this journey. Before him, I was a person with Type 1 diabetes who didn’t know anyone else living day-to-day like me.
He and I created diabeticfeed, the first podcast about diabetes. It was a mélange of research news, interviews, and resources and a way to connect with people who have become like family to me.
One of my first interviews was with this woman who was Type 1 and had just started a blog. We clicked and connected over a love of all things snarky and the bond created by diabetes. You might know her. Kerri Sparling.
Thank this woman. Kerri began working at dLife, and through her, I penned a column about living and celebrating who we are. Kerri and I might both have diabetes, but I have a feeling that even without this disease, we’d still be making inappropriate comments to each other.
Over time, the little group of ragtag renegades who talk about diabetes on the Internet became closer. Friends. Some of us became like family. Thank these people. Kerri, Scott K. Johnson, and George Simmons have been my rocks and my confidantes and I love them.
As the small group grew larger, it became known as the Diabetes Online Community, and it encompasses thousands of people all across the world. I got busy with things outside of my diabetes and drifted off into obscurity. I kept in touch with many people I had met, but did nothing “formal”. And it was that way for a while.
But the Diabetes Online Community is like the mafia. Blood in, blood out, blood on the test strip…
“Just when I thought I was out, they pull me back in…”
This blog began over a year ago in response to something that irked me, and it was appropriately titled: “In Retrospect, I Should Thank Him…” So thank that guy.
And then… you should thank this guy. Heartily thank him.
Bennet Dunlap and I forged a friendship at the first Roche Blogger Summit in 2009 and he’s my Don Corleone. We both think alike when it comes to sharing what we find not cool in the world and speaking freely about it. (See the sign above? Yeah….) And because of him, I’ve realized that I have the ability to make a difference… and a little trouble.
All of these people helped me find a voice, connect with others, and share my ideas about living well with diabetes.
- I advocate for all people with diabetes (discriminating between Type 1 and Type 2 is a waste of time and effort) and blood glucose test strip accuracy.
- I advocate for data access so that I can better manage my diabetes.
- I advocate for access to the medications and tools for everyone with diabetes, regardless of location or financial situations.
I advocate for myself, my family, my friends, and for every single person with diabetes and their friends and family.
I know that I can’t do it alone and I’m thankful for those who have built an amazing community and continue to make it stronger.
I’m fired up for my community. So, thank my community.
This is how I thank my community. Join us.
This is my post for Monday’s Diabetes Blog Week. We were asked this:
Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you.
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.
Usher, a music celebrity and judge on The Voice, revealed yesterday that one of his sons had been diagnosed with Type 1 diabetes in the last year. The Diabetes Online Community was all a-twitter at the news and my news feeds on FB were clogged with “Hey, look at this interview!”
Everyone thinks they know what it’s all about, but unless you’re part of a family impacted by this disease, it’s a soundbite and an “Oh, I’m so sorry to hear that,” before moving on to the next news story. Thank you for sharing an intimate part of your life with the general public and talking about making sure your child eats healthy meals.
You will, I have absolutely no doubt, be contacted by more than one diabetes organization asking to be a spokesperson for the cause. A famous person is always good for a wave and a smile on the stage, and a famous person with a connection to diabetes? Booya. They will want to you rally around diabetes research and a cure and raising diabetes awareness.
How about you focus on raising your children instead?
There will be plenty of time to advocate (if you want) in the future, but you’re still in that “What the hell happened?” phase of the disease. In addition, you’re also dealing with a family that does not live together, so factor in an ex-wife who I’m sure is just as worried about her children as you are, and there will be arguments over his care. Teach your child with diabetes to be strong and self-sufficient and your child without diabetes to be understanding and compassionate. (By the way, if you don’t think his brother isn’t impacted by this, think again.)
Diabetes isn’t going anywhere. It will still be here if you want to talk about it. Look, other famous people have taken different routes in advocating: Brett Michaels and Mary Tyler Moore are solid advocates (and even Robin Thicke has gotten into diabetes fundraising - his brother is T1). Paula Deen admitted she was Type 2 when she could make money off of it. Tom Hanks mentioned it once on late night television that he has Type 2, but hasn’t said a thing since. Hell, Halle Berry won’t even admit she has diabetes anymore.
So, for now, learn all you can about this disease. Send your ex-wife and kids to Friends for Life this summer. Do what you can to keep him safe and feeling loved and supported. Make sure he knows that he did nothing to get this disease. I’m sure that you’re already doing all of this, but make sure that you are supported, too. Parenting is hard enough, but parenting a child with diabetes is going to be a whole new ball of wax.
If you need the Diabetes Community, online or in person, we’re here. There are a lot of great people who would be willing to help, famous person or not. You’re a parent of a child with diabetes. You’re part of that club that no one wants to be in.
I wish you the best. You’ll need it.
And for the rest of us…
Dear Diabetes Community,
Remember The Diagnosis? Those days and months following the game changer of your life? It was a rough and heady time, with so much to learn and understand. After 31 years, I’m still learning new things about this disease.
So, please… back off on Usher and a crusade to have him become the beacon of advocacy for diabetes. He was brave to mention it openly. Don’t expect him to rally the troops and become a mouthpiece for organizations. Let him decide for himself, on his own terms, if he wants to be a part of our community at all. (We can be a little pushy at times…)
Nothing has changed since yesterday, except eighty people got The Diagnosis. Today, eighty people will get it. Tomorrow and the day after… He, despite being a celebrity, is no different. He is a parent of a child with diabetes.
While you think he may be able to reach so many people to raise awareness and money for diabetes, it should be his decision… and his family’s decision to become the poster family and the center of attention. There are other famous families who are already doing a spectacular job of that. And there are also families who are not quite so famous who are already doing a spectacular job, too.
Diabetes isn’t going anywhere. Neither is the Diabetes Community. We’ll be here if and when he wants to join us.