Tag Archives: support

My best moment from #AADE18 didn’t happen at AADE

I told this story a couple of times this past weekend at AADE, and I thought it might be worth retelling here. It involves a memory from many years ago, and reacquaintance. In short:

The best story of my AADE experience did not happen at AADE.

The annual meeting of the American Association of Diabetes Educators was at the Baltimore Convention Center, in the heart of the city where I live and work. In fact, until about nine years ago, I used to work very close to the convention center.

Back then, I used to go through a building across the street from where I worked, directly across the street from the convention center, every morning on my way in to the office (I actually had an office then). The building had a newsstand in it, and still does.

Running the newsstand was a diminutive woman who was generally nice, but when the moment called for it, could be salty as hell. You didn’t want to get on her bad side.

Now, let’s flash back 15 or 16 years… when I was 11 or 12 years into diabetes… but before insulin pumps, CGMs, and way before I found the Diabetes Online Community. We’re talking Friday morning, in the spring or summer of 2002 or 2003.

I’m headed into work that morning, and I could feel that my blood sugar was crashing. I got off the subway and somehow navigated the block and a half to get to the newsstand. By the time I got there, I was sweating through everything, including the suit I was wearing. I must have looked awful.

I can remember there must have been a large lottery jackpot coming up or something, because there were more people than usual in the shop, and I had trouble getting to the back to get some juice. Eventually, I just slumped on the floor, unable to move any more.

People were looking at me like I was drunk, or under the influence of drugs. I’ve had a couple of moments like this in the city, where passersby shoot cell phone videos instead of stopping to assist you. If things go really bad, they might call the police, who might cart you off to the city lockup, and people around here know if you go into the lockup on Friday, you’re probably not coming out until at least Monday.

So here I am, unable to move in a newsstand full of people. And suddenly, this diminutive woman races out from behind her counter, leaving her lottery customers waiting and looking at their watches. “What do you need?”… “How can I help you?”.

I think I just muttered “juice”, and she raced back and got me a bottle of juice, which I finished in no time. Then she got another. I was about halfway through with that before I started coming out of my funk and she went back to her customers. She never charged me for the juice.

I took an extended break from work the next day to go over and pay her, thank her, and discuss the moment. We didn’t speak about it again.

Eventually, my company moved its offices about five minutes away. That was 2009, nine years ago. Not working close by anymore, I didn’t return to the newsstand.

Fast forward to last Friday. I took the subway for part of my commute to get to the convention center that day, and I really wanted a soda, and since that building is right across the street…

I walked into the newsstand, and she was not there. The only people in the place were what looked like a couple of regular lottery customers, who, as I recall, used to watch the place for my hero when she needed to step out for a minute. We waited and chatted together.

Then suddenly, she walked through the door, and as soon as she saw me, her eyes got big and she shouted “How are you?”! I flatly retorted, “I can’t believe you still remember me”. She said, “Oh, you never forget a day like that”.

I told her I was on my way to the convention center, why I was there, and that later in the day, I would be speaking about life with diabetes as part of a discussion panel at the conference. I took the time to remind her that if it wasn’t for her help all those years ago, I might not be speaking that day or any other.

I can’t stop thinking about the impact of that moment in time.

So my best story about AADE did not happen at AADE. It happened years ago, and was relived for a brief moment last Friday. As long as I live, I will never forget that day, this person’s selflessness, and the unknown opportunities it would present much later on.

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The Diabetes UnConference Alexandria 2017.

Full Disclosure: The Diabetes Collective paid for my hotel accommodations so I could reprise my role as a facilitator at the Diabetes UnConference. All opinions are my own.

That t-shirt says it all: No judgement. Just support.

The fifth Diabetes UnConference has completed. Our venue was the Embassy Suites hotel in Alexandria, Virginia. This time, the UnConference was co-located with the Diabetes Sisters Weekend for Women conference. This created the dynamic where, in addition to the separately attended UnConference and the Weekend for Women sessions, there were general education sessions available to both groups.

Obviously, I can’t speak to the Weekend for Women track, but they’re a fantastic organization populated with some of the smartest, strongest, most supportive people you could ever meet… some of whom are actually Diabetes UnConference alumni and facilitators. The general education track was full of informative tidbits.

And the UnConference was the UnConference. A safe, supportive space where adults with diabetes and their PLUs, or People who Love Us, could talk about and explore the various things going on in our heads and our hearts these days. And believe me, there was a lot to talk about.

As usual, the Diabetes UnConference weekend included cheerful and excited Hellos. It included intense discussions, and evenings out with the best of friends. It included tearful Goodbyes and promises to stay in touch and plan meetups in the future. Which brings me to this:

There will not be a Diabetes UnConference in 2018.

There are a number of reasons for this. Mostly, it’s time. Let’s face it… diabetes, and diabetes advocacy, takes a lot of our time these days. Plus, now that we’ve done this five times already(!), maybe it’s time to take a breather and reimagine the Diabetes UnConference for 2019.

One thing’s for sure though: no UnConference does not mean no UnConference activity. I’m looking forward to UnConference alumni gathering throughout the country over the next couple of years, to continue discussions, support, and all the things that make our safe, protected time together as wonderful as it has ever been.

My gosh, I already miss my tribe.

Impact of The Diabetes UnConference.

I’m still processing The Diabetes UnConference.

It’s really hard to describe. At least to someone who was not in attendance. I’ve received a couple of inquiries about the event. Good inquiries, actually.

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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.

What was said was not necessarily said for the benefit of educators, or healthcare professionals, or drug manufacturers, or even diabetes bloggers. Instead, what was shared was shared for the benefit of the people in attendance. As much as it makes me cringe when I say it, in this case, you really had to be there to fully feel the depth of our discussions.

That’s not to say that there won’t be any visible initiatives to come from the UnConference. There may very well be advocacy jumpstarted, or increased diabetes volunteerism due to some of the issues that were discussed. I certainly hope so. But it may come from individuals, or a team of individuals, rather than from the UnConference saying “here’s what we decided to do”. I have an idea in my head that came from the Aging with Diabetes session. I don’t know if I can do something with it, but I would like to try.

I also think that many of the things that were talked about will eventually make their way out beyond the confines of our walls at The Flamingo hotel. It just won’t be via Tweets and Facebook and blogs and so on. It’s going to be person to person, peer to peer, PWD to PWD. The conversations, however sacred, are not over. In many cases, they are just beginning. I like to think we cracked open quite a few cans of worms at the Diabetes UnConference.

When I consider bonds that were solidified over that weekend, and I look at Facebook posts and read blogs in recap of our time in Las Vegas, I’m finding that I wasn’t the only person who was moved by what I heard and experienced. And I’m not the only one having trouble describing it in a way that someone who was not there would understand and grasp hold of completely.

That’s kind of frustrating in a way. Except that the thing that makes it frustrating is also what made it so great—no social media during the sessions, keeping what was shared within the confines of the UnConference rooms, making it safe to open up, and ensuring everyone was listening.

That’s a tradeoff that this patient, anyway, is happy to make for the benefit of my fellow People With Diabetes who were there, and for the feeding of my soul that surprisingly happened during this special time in my life. I’m generally far too jaded to really get emotional anymore. I still feel things deeply, but I’m much more likely to keep my feelings to myself until the moment passes. That’s another thing I really had a hard time with, and I found myself opening up far more than I tend to do at traditional conferences.

Here’s the thing: Closing one window (social media) allowed another window (self fulfillment, enlightenment, relationship building, keep adding to the list) to open wide. Not just for me, but for everyone there. When I think of that weekend, I’m still a little raw. But I’m also ready and willing to listen to the next Person With Diabetes who needs a little more care and feeding of their soul.

My guess is that the impact of the first ever Diabetes UnConference will be both immediate and long-lasting. You’ve been reading about the immediate impact now, and the benefits of that are mostly internal. The long-lasting impact will be written about in years to come, and calculated in how one person makes an impact on another person’s life.

I’m still processing all of this, and I’m sure some of the attendees still are too. The conversations are just beginning. Lives are just starting to be changed. And that makes me feel like the UnConference will never really be over at all. I like the idea of that very much.

Unless, of course, there’s a cure. Then I’m okay with it ending. Just so you know…

Diabetes Unconference: What is your area of expertise?

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The very first Diabetes UnConference is now over. It was held at the Flamingo Hotel on the Las Vegas strip, in the shadow of the already-famous High Roller.

How to describe the UnConference? Well, I can’t tell you much about what was discussed in our sessions Saturday and Sunday. That’s because all attendees observed a strict no-social-media policy from our meeting area throughout the weekend. So I’m not here to give you a blow by blow rundown of what was presented.

Now that that disclosure is out of the way, let me back up a bit. Let me tell you about what the Diabetes UnConference was.

It was a place where adults living with diabetes, of all types, from all backgrounds, were engaging with each other in a safe, protective environment, rather than sitting in their chairs and looking up at someone’s PowerPoint presentation. It was an absolutely judgement-free zone 24 hours a day.

Instead, the experts at this conference were the attendees. Their presentations were on a number of subjects and drew on the collective experience of nearly 2,000 years of living with this chronic condition.

There was laughing and crying, there was criticism and praise, and there was support and a lot of listening to each other.

There was not always agreement. There was always respect. There were diabetes veterans meeting the newly or relatively newly diagnosed. There were tips and tricks exchanged.

People shared some of their most closely held fears and secrets. People emerged stronger. People emerged not feeling so alone. People were empowered to take another look at diabetes and their friends who live with diabetes, making a collective investment in a better future for all of us. We are all in.

In the end, I can tell you how I’m feeling a day after the conclusion of this event. Thanks to the people in the photo above, my heart is soaring today, without the help of anything but insulin and the support, understanding, and empowerment provided by my fellow compatriots.

And I would be honored if you brought your expertise to the UnConference next year.

Aboard the High Roller, 500 feet above the Las Vegas strip

Aboard the High Roller, 500 feet above the Las Vegas strip

No disclosure to see here, folks. I paid for conference registration and for travel to and from Las Vegas all on my own. And I’m damn glad I did.
 
 
 

Back in the day.

Every once in a while I think back to the initial days before and just after my diagnosis. Dr. Mowry correctly diagnosed me with Type 1 diabetes at the end of January, 1991. After a few days in the hospital and some quick diabetes education, I was off to handle this chronic condition on my own. This recent post made me think about that diagnosis, and mostly, about my first few years living with Type 1.

One of the first things I remember thinking about diabetes was, after they gave me my dosing instructions (something like 26 units of Novolin 70/30 insulin in the morning, 22 at night), doing the quick math to determine I was going to be injecting myself 730 times every year, and 732 during leap years. That was my wake-up call… that was the first moment I knew for sure that this was different.

The diabetes educator I met with in the hospital was the first and last diabetes educator I’ve ever met with. No real reason for that, other than no one else ever said to me, “You should go see a CDE”. So I never did.

I remember getting the “five years to a cure” pep talk while I was in the hospital. I didn’t believe it. I remember giving others (mostly my Mom and the rest of the family) this tidbit of information in a sort of sound bite fashion, mostly so they didn’t worry, and so I didn’t get their pity. I still don’t know just how to handle that from people. But deep down, I knew from the beginning that my diabetes wasn’t going away. Nobody was going to be able to repair my broken pancreas.

I did read a lot about diabetes early on, to find out as much as I could about the disease. But I didn’t really know where to look for the latest about treatments, technology, and research. So, when I learned everything I thought I could learn about diabetes in general, I stopped reading. I might have picked up a JDRF or ADA publication from time to time in my doctor’s office. But how much of that can you read while you’re waiting? And when I was newly diagnosed, it didn’t occur to me to get any of that information at home. Besides, it all seemed so clinical back then. Eat right, exercise, take your insulin. Rinse, repeat. After I read that so many times, I just mentally turned it off.

I was going through a very stressful time at my job in those first few years. In a way, this was both a blessing and a curse. A blessing in that being so involved with work (about 60 hours per week), I didn’t have time to be angry or feel sorry for myself. I just had to move from task to task… that’s all I had time for. And therein lies the curse: Diabetes took a back seat from day one. If I was alive, I thought I was doing fine. Until my next A1c result. After the result came in, I’d feel bad for a couple of days, and then it would be forgotten until the next trip to the doctor.

Making so much time for the non-diabetes part of my life also meant that I wasn’t taking time to get up to date on drugs and therapy. I started my D-education in the hospital at diagnosis, but I didn’t get a follow up on anything for another 11 years. So, eleven years after diagnosis (2002), I was still injecting the same insulin at the same time every day, in the same amount. Regardless of my diet or level of exercise, never anything different. I knew that exercise could lower my glucose, and too much food could raise it, but it never occurred to me to make adjustments to my insulin dosage as a result of either of those. No one ever told me I could or should do that. And I couldn’t understand why my A1c was always crappy. How crazy is that?

I think I really could have used a mentor at that point in my life. I’m not sure how I would have received that mythical person then, but obviously, I know now how important a mentor can be as an educator, a cheerleader, a sounding board, and someone to help talk you off the ledge when times are tough.

Every time I think about it, I’m really blown away at my utter lack of diabetes knowledge in the first decade-plus of my journey with this condition. If you’re newly diagnosed, I hope you find that mentor. I hope you stay as up-to-date as possible on the latest medicine, therapy, technology, and research. Don’t forget that compared to your day of diagnosis, you’re pretty healthy right now, and you probably feel a lot better too. Don’t ever give up. Don’t ever stop learning. If this old dog can learn new tricks 23 years after diagnosis, I know you can too.

Don’t forget to pay it forward. Someone out there is right where you were in those first few days or weeks or years. Help make their first few steps sturdier, easier, more sure. JDRF has a mentor program that will allow you to help newly diagnosed PWDs feel less alone. Of course, when you need help, don’t forget to reach out to someone who can help you navigate stubborn BGs and difficult emotions. We all need help from time to time. In the meantime, remember to enjoy the vibrant, fulfilling life you were always meant to live, even if diabetes won’t go away. You deserve it.
 
 
 

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