#LaceUp4Diabetes – I'm Giving Away These Sweet Laces, Too!

unnamed-5I’m lazy. There. I said it. My cardiologist even told me: “You’re lazy.” (I like medical professionals who don’t beat around the bush.)

I need more exercise. O.K., I need to starting doing some exercise.

Ironically, Novo Nordisk contacted me a few days after my doctor’s appointment and asked me if I would participate in their #LaceUp4Diabetes campaign to show how we can take steps to reduce the risk of diabetes (or in my case, reduce my laziness and my blood glucose levels at the same time!). Of course, I said: Shoelaces?! Count me in!

I’ve got five extra sets of laces and I want to send them to five lucky random people within the next few days, so they can participate in the #LaceUp4Diabetes campaign on World Diabetes Day (November 14th…)

Here’s how you can get these sweet (yep, pun intended) laces:

Take a picture of you in your sneakers. (Points for creativity, you know! Think outside the box… or the sneakers in this case. Please do wear clothes.) Then, by Monday, November 9, 2015 at 5pm:

  • Instagram the pic using the #LaceUp4Diabetes as a hashtag and theperfectdblog in the caption (this way I’ll know it was meant for this giveaway!)
  • Facebook the pic using the #LaceUp4Diabetes as a hashtag and upload it to ThePerfectD’s Facebook page: https://www.facebook.com/ThePerfectD What? You aren’t a fan of this page yet? All the cool kids are fans. Come jump off a bridge with us!
  • Tweet the pic using the #LaceUp4Diabetes as a hostage and mentioning @theperfectdblog in the tweet. Don’t follow me yet? Follow me. I’ll lead you down the primrose path or the yellow brick road or the rabbit hole, but I promise it will be fun!

I’ll select five lucky people based on creativity and ingenuity and the results from the swimsuit competition.  

I’ll announce the crazy people who participated and won on Tuesday, November 10th.

#LaceUp4Diabetes – I’m Giving Away These Sweet Laces, Too!If you’re selected, I’ll ask for your email and mail address and I’ll ship these laces out to you ASAP so you can have them by November 14, 2015.

You don’t have to have diabetes to participate. You just have to want to help take a single step towards diabetes awareness. 

As for me, I’m going to take a step. I’m joining a gym and will make it a priority to work out three days a week, even when I’m traveling. I’m packing my sneakers with the laces that remind me that I have the power to help myself…

Disclosure: Novo Nordisk sent me six pairs of shoelaces with no instructions. I’m doing this giveaway of my own free will and sending these to five people (because I kept a pair and laced them up on my sneaks…) of my own money (which I wish was free). They didn’t ask me to write about this. They didn’t ask me to share anything. We are a community. Sharing and helping and supporting is what we do. 

If you want to find out if you’re at risk of diabetes: AskScreenKnow.com

If you want to get a personalized support program for people who live with diabetes – and their caregivers: Cornerstones4Care.com

If you want to learn more about Novo Nordisk: novonordisk-us.com

Take a step, take a photo, win shoelaces. Go!

 

My 9 Rules for the DOC #DOCBurnout2015

DOCburnoutDayMany of us talk about the power of the Diabetes Online Community, a virtual entity that has grown organically over the past 10 (or so) years. If you’re looking for support, advice, experiences, kindred spirits or an answer at 3am, you can reach out through your keyboard and find someone almost immediately. We share ways to connect, communities that center around diabetes, and resources to make daily living a little easier.

But few of us talk openly about the underbelly of the Diabetes Online Community: the shaming, the bullying, the misconnects, and the frustrating attempts at feeling accepted. That’s why Diabetes Daily suggested that today, we share our thoughts and experiences using the hashtag #DOCBurnout2015 on social media. I’m hoping that we can stop the shaming and bullying within our own support system and help those who feel excluded rather than included.

My Experience

My experience is different than most when it comes to what we now call the DOC. My early forays into connecting with others through diabeticfeed, the podcast John and I started in 2005, put me in touch with some of today’s heavy hitters in the community: Kerri, Scott, Amy, Manny, Bennet, Kelly, Wil, and so many more – all who I’ve grown to love and think of as family. The community was young, small, and tight-knit – and reaching out to each other, while not easy, was gratifying.

As I’ve mentioned in other posts, my career and personal life shifted my focus away from the DOC for a number of years. I didn’t connect as much, didn’t do as much, and while I cared about the community, I wasn’t actively participating. When I decided to “come back” and be active, I wasn’t a newbie, but there were (are) a lot of people I didn’t know who had become integral threads in the fabric of the newer DOC. I was an “old newbie” and it was weird.

I was grateful to be welcomed back by many, but there was also an undercurrent of “Who the hell is this chick? Why the hell should we care who she is?” And rightfully so. As far as most people were concerned, I was like the kooky aunt in the attic that no one talked about anymore. “Ohhh… so you’re the Christel people talked about.” (To be fair, no one said “kooky aunt” outright, but I had a few interactions with people online and face-to-face that didn’t leave me with the warm fuzzies.)

Over time, that feeling has mostly dissipated, but wisps of discontent drift up occasionally online. It’s like every community: no one will be happy all the time. But I’m seeing a rising tide of discontent and I’m calling it out. It’s bullying. 

Bullying

  • Bullying a person in the diabetes online community over their choice of treatment plans or what type they have is unacceptable.
  • Bullying a person for giving their time and support to help others in the diabetes community is unacceptable.
  • Bullying a person for sharing correct medical information is unacceptable.
  • Bullying a person for having (or not having) medical insurance, medical devices, or access is unacceptable.
  • Bullying a person for making choices and telling them they’re stupid for making those choices is unacceptable.

I’m witnessing the bullying more and more online: Type 1 versus Type 2, LCHF versus paleo versus Dr. Bernstein versus “I’ll eat what I want,” pump versus MDI, Nightspot versus Share, “helicopter parents” versus T1 adults who were T1 kids… you name the discussion and there will be discourse and discontent.

Personal attacks are also unacceptable. I know of one individual who, without ever having met anyone in a particular diabetes FB group, was threatened with physical violence, suggestions made on how to make this person “pay.” I’ve been personally attacked in private messages on social media and I know of others who, simply by sharing their lives with diabetes openly, received emails that would horrify even the most hardened of hearts.

By now, I hope you’re thinking: “What the hell?!? Who does that?” (If not, please email me. Seriously. We need to talk.) And then I hope you’re asking yourself: “What can I do to ensure that I am helping and not harming the DOC?” (If not, please email me. See above.)

Here are my DOC Rules for Interacting with Other Human Beings:

  1. We are all human beings with emotions. We all bleed when we’re poked. (Some of us, literally. Hey – a reminder to change our lancets!) The words “stupid”, “ignorant”, “dumb”, or “idiot” should be banned in discussions within the community (even if you’re explaining an interaction with someone outside of the community (like a nurse or a doc or a stranger on the street).
  2. Think before you angry post. If you read something and you are angry and want to respond, do not bang out a response and hit send at the height of your anger. Walk away and then come back.
  3. Some people are new to the DOC. Be kind. They will ask questions that have been asked before. Help them find the information. (Know that employee in Home Depot who walks you over to the item you’ve been searching for in the wrong aisle? Be that person. Wearing an orange apron is optional.)
  4. Your diabetes is your diabetes (or your family member’s diabetes is your family member’s diabetes). If someone asks a question or is looking for support, answer the question and give support. Don’t be a jerk in your response. If you can’t NOT be a jerk, then move along and don’t respond at all.
  5. Share blogs and information you like – and that don’t give incorrect medical information or dangerous information. I love reading new blogs and learning about other people in the community – new ways of thinking about daily life with diabetes or new research that I want to share. (Hint: if the info has okra or cinnamon in it, keep scrolling….) If you find misinformation online in a group, notify the administrator and ask for its removal. It’s like the Smokey The Bear campaign: Only you can prevent bad information from spreading like wildfire.
  6. If you are bullied, walk away if you can as soon as possible. Do not engage, because sometimes, it’s exactly what that person wants: a reaction. I was always told that when children misbehave, it’s because they want attention: any attention, good or bad, is attention. If you react, then they got what they wanted. People will try to “hit and run” – send you a private message or an email, spewing their hate. Delete it. Block them. There will always be those who just can’t play nice.
  7. It is perfectly OK to step back if you’ve been hurt. It’s perfectly OK to apologize if you’ve said something mean and ask for forgiveness. Just don’t blame it on a low blood sugar. (Posting while low should be a term.)
  8. If you’re not connecting within the DOC, you may want to rethink your approach. Are you writing a blog and expecting people to flock to it and praise you, but no one knows it exists? Are you constantly posting negative comments in a group but not giving support or asking for opinions? Do you focus on one thing about diabetes and bang that drum every day in the same chat board? Do you gloat or act smug because your blood sugars are always in range and you never do anything wrong and tell everyone that when they share their experiences or ask for advice? Do you pick fights with other PWDs on Twitter or FB? Do you make fun of family members or others online who don’t have the knowledge about diabetes that you do? Take a step back and look at your interactions. Are you helping… or hurting others?
  9. Remember why you wanted to connect with the DOC in the first place. For me, it was simply this: I was alone. Reaching out to others who had the same chronic illness and learning from them helped me to be stronger, more resilient, more knowledgeable about diabetes. What’s your reason for wanting to connect? Keep that close to your heart as you connect with others.

Stepping Away

Sometimes you need to step away. It’s OK to step away from the DOC. I did, and I came back. Others have stepped away and are missed. Burnout is real.

Until there’s a cure, we’ll not going anywhere and we’re trying to keep our community uplifted and supportive. When you want to come back, we’ll be here… most of us with open arms. Those whose arms aren’t open?

Well…group hug for them, too. They probably need it the most.

Share your suggestions and thoughts about #DOCBurnout2015 at www.diabetesdaily.com and Diabetes Daily’s FB page.

 

The Diabetes UnConference – 2016 Las Vegas Registration is Open!

un-diabetes-conference-fullcolor-iconI am honored to announce that The Diabetes Collective, Inc. has opened registration for The Diabetes UnConference at The Flamingo Las Vegas from March 10 – 13, 2016. 

Trying something new is scary. Trying to put on a conference where the agenda isn’t truly defined until the participants are in the room together – and wondering if any participants will show up – is terrifying. I had my moments. More than my share of moments.

And you know what? I can’t wait for this to happen again. 

I’ve given you my first impressions about The Diabetes UnConference that happened in March. Others have, too. 

But what I didn’t tell you then was how I sobbed in my hotel room after the conference ended for almost an hour. Not from sadness, but from sheer elation. Happy sobs, because I had met people from all walks of life who wanted to learn from each other and build a net of support. These people astounded me with their frankness, their honesty, their willingness to open up they own Pandora’s Box, and their desire to help. I am a better person, not just a better person with diabetes, because of the people I met. 

We asked attendees to complete a post-conference survey. Here are some interesting things we learned:

62% of the attendees said that they were planning or already made a change in the way they manage their diabetes based on what they learned at The Diabetes UnConference.

Some of those changes were with the way they interacted with their medical care team, or asking for help from others, or staying motivated through peer support. Others planned on talking with their medical team about super bolusing or untethering or trying a new medical device or medication because of the experiences their peers had.

The sponsors were amazing. We couldn’t have done this without the support of Insulet, Dexcom, Medtronic, JDRF, Abbott, Tandem, Roche, Asante, and J&J/Animas. One of the attendees summed up pretty much how everyone felt:

“I know they were there to promote their brands, but I also appreciate the fact that they supported this event so enthusiastically.”

When asked what they enjoyed most about The Diabetes UnConference, the answers made my heart swell:

“The feeling of relief, of understanding, of connection. I also learned a ton of new ideas on how to better manage my diabetes or change the way I think about it. I also loved meeting others who have gone through experiences I am about to go through, so I can hear what they learned from it.”

“Sitting in a room filled with people I could relate to, and didn’t have to explain or justify what I was doing/eating/etc. Also, as much as I love my family, I really enjoyed having NO responsibilities for the weekend except for myself. It took some of the ‘weight’ off of my brain having to only worry about myself. And even then, I wasn’t too worried because I knew if something happened, I was surrounded by people who knew what to do to help me.”

“The sense of safe community we all created. We all really got to shed some diabetes weight. I felt lighter after, like I could go back out and face the world with diabetes again.”

“I have told everyone I know that this was THE best conference that I have ever attended in my entire life.  Lots of experiences were shared.  I got a perspective that I have not experienced before.  People were friendly and I took away ideas and stories that people told that I will hold with me forever.  Truly an awesome experience.”

Of course, it wasn’t all sunshine and glitter. We had some bumps… Not enough time to deeply get into topics, not enough breaks for decompression during the event, and the need for more non-session social interaction. Plans are already underway to made the event even better. We also knew before we left that two things needed to be added for 2016:

  • We are adding a “People Who Love Us” registration for spouses, significant others, family members, and close friends of people with diabetes who need the same type of psychosocial support that we received this year. They need that same safe space, non-judgement zone where they can talk about how we can be total jerks sometimes and no one will tell them that’s wrong. They will have their own sessions, just like the PWDs, but we’ll also have some sessions together to talk about ways to help each other.
  • We are adding one on the East Coast. Attendees want to come from all over, but sometimes the cost for airfare is ridiculous. The Diabetes UnConference – East Coast will happen in the fall of 2016 and allow participants to choose either (or both). Contracts are being hammered out as I type.

The intimacy of The Diabetes UnConference is what makes it so special, so we are limiting registrations again. If you want to attend in Las Vegas, please register as soon as possible to take advantage of the Early Bird registration and secure your attendance. We’ve got a lot of fun things planned already for next year, along with some great ideas. Hope that you’ll join us!

 

 

Here, There, and Everywhere: The Impact of The Diabetes UnConference

10450528_10153177751732328_8584133040017261821_n-2My diabetes doesn’t take a time out. There’s no napping, no long weekend out of the office, no sabbatical. I drag this sucker everywhere and even if it doesn’t play nicely with others, it gets to come along for the ride.

And I’ve been doing a lot of riding (as well as writing) these days. Word is getting out about The Diabetes UnConference which means I’ve been sharing my experience (and getting feedback from other people) here, there, and everywhere.

I’m sharing these here, because it gives you the opportunity to get acquainted with new blogs, new voices, and great communities! Attendees of The Diabetes UnConference have been talking about their own experiences here, there, and everywhere.

And Like I said… I’ve been talking about The Diabetes UnConference a lot these days with others:

Shawn Shepheard is the creator of Sugar Free Shawn and one of the most positive people I’ve ever had the pleasure to meet. He makes me show my goofy face and I find myself using jazz hands when I talk with him. This is a good thing. Check out his website here.

I also chatted with Daniele Hargenrader of Diabetes Dominator – not just about The Diabetes UnConference, but life with diabetes in general. (Do you know her? You should! What a dynamic force!)

One of my goals from The Diabetes UnConference of continuing crucial conversations outside of The Diabetes UnConference is blossoming… Diabetic Connect has graciously extended a hand in making these dialogs part of the larger diabetes community:

Heather Gabel delves into the words we use when talking about diabetes – a topic that we touched on at The Diabetes UnConference.

Here is my first pass for a call to action that came out a discussion about diabetes discrimination and stigma.

un-diabetes-conference-fullcolor-iconWe’ve begun something that I believe is unstoppable at The Diabetes UnConference  – and I can’t wait to propel it even further as a community through some of the initiatives we discussed there, as well as inspiring new conversations next year.

Early Bird Registration for next year’s Diabetes UnConference (March 10 – 13, 2016 in Las Vegas) opens on May 1st.  We are not just here in our words above… we will be there… because we understand that we are everywhere. Come get involved.

Forever Arriving:

IMG_0839I’d love to give you a comprehensive synopsis of what happened at the inaugural Diabetes UnConference in Las Vegas a few weeks ago, but I can’t.

It’s not because of the social media blackout (more on that later in another post) that the attendees agreed upon at the beginning of the sessions so that people could talk freely about personal issues.

It’s not because no one took notes or had nothing to say. Others have already spoken eloquently about their experience.

It’s because I can’t yet fully wrap my arms around what transpired, because they are filled with my heart. And my heart is filled with emotions I thought I could handle, but apparently… silly me. Two weeks later and I find myself struck mute, throat constricted from a remembered confession and the gratitude of brutal honesty.

As Stephen Shaul says so beautifully:

The problem is, the UnConference was not about one subject or another as much as it was about us, the people who were there, and our lives with diabetes, how we choose the devices we choose, how we navigate relationships involving diabetes, and that awful trifecta of guilt, depression, and burnout. And a LOT more.

About Us

He (and many others who have said much the same) is right. It was – and will always be – about us. Not just those physically present in the room at The Diabetes UnConference, but the “us” of our community. I’ll talk about the logistics and what worked and what didn’t – but the crux of what made this event so indescribable was the people and their individual experiences.

We are more than our diabetes, more than our diagnosis, more than our desires for a cure… but if we don’t discuss day-to-day living and “scary” or “taboo” topics with this chronic disease through deep, meaningful interactions (whether online or face-to-face), we run the risk of feeling isolated and disenfranchised.

1436965_20488329The Diabetes UnConference came out of a personal desire to create a safe place for these discussions – and an even more personal desire to push past the superficial connections that are sometimes created (not through anyone’s fault, but the way the Internet works…) online. When we walked out of that room a few weeks ago, were connections made that will take root and inspire others to be more open about living with diabetes and connect in new ways? Time will bear witness.

I know that I’ll be able to talk with greater clarity about what happened and what we are going to do next because of what happened, but for now, the cocoon is still woven tightly around me. I am comforted by that and I’m not ready to let these emotions fly just yet.

 

Stolen Words from Octavio Paz

While I can’t yet talk about it, this aptly describes how I view what occurred…

a crystal willow, a poplar of water,

a tall fountain the wind arches over,

a tree deep-rooted yet dancing still,

a course of a river that turns, moves on,

doubles back, and comes full circle,

forever arriving:

– Octavio Paz, “Sunstone”

1188980_19108234The poem is about an individual’s quest for connection and community and the loneliness that one can experience without it. (If you’ve never read it, be forewarned. It’s 584 lines long, representing the number of days it takes Venus to orbit the sun. It begins and ends with the same stanza above. This monumental work is beautiful and haunting and worth every line.)

The takeaway of the poem and The Diabetes UnConference is simply this:

we need each other. 

Whether it’s at The Diabetes UnConference or in local face-to-face meet-ups or in welcoming online community sites like TuDiabetes.org. We must create these spaces and throw open the doors to those who need to talk, all the while respecting the sanctity of what needs to be discussed

There will be a 2016 Diabetes UnConference.There will continue to be opportunities for more individuals with diabetes (and those who love us) to have heart-to-heart conversations and build new circles that grow, welcoming new and brave souls to share and teach us. I hope that smaller versions of what we began in Vegas will pop up in a local meet-up. I believe it can be done.

What did I learn (although perhaps, I always knew in my heart)?

Our community needs to have sacred spaces and full circles. We have deep roots and we will dance together. And most importantly…

We are forever arriving: