Monthly Archives: December 2016

Here’s to 2016.

I have to admit, it’s been quite a year.

Full of meetings and partings, full of new issues, and always full of interesting twists and turns, 2016 was eventful indeed.

I didn’t get a chance to participate in clinical trials this year, but I did get to do what feels like my first meaningful work for People With Diabetes by facilitating at the Diabetes UnConference, and representing DPAC at Friends for Life. There were fewer blog posts than in recent years, but I’m kinda seeing that from everyone these days.

We are up to 80 plus Champion Athletes With Diabetes medals awarded all time, thanks to some amazing athletes who shared their inspirational stories of perseverance this year.

There were some great podcast interviews, and though they are pretty infrequent, I’m still getting a kick out of interviewing my guests. Every conversation is different and very interesting. More interviews to come in 2017.

I haven’t done this for a couple of years, but I thought this would be a good opportunity to tell my year in photos. Check out the captions for specifics. Here goes:

2016 was the year I finally settled on a new insulin pump: the Animas Vibe.

2016 was the year I finally settled on a new insulin pump: the Animas Vibe.


Loved participating in Diabetes Podcast Week.  Can't wait until 2017's edition!

Loved participating in Diabetes Podcast Week. Can’t wait until 2017’s edition!


At the JDRF Type One Nation research summit in March, I finally met diabetes (and RA) blogger from Baltimore, Molly Schreiber.

At the JDRF Type One Nation research summit in March, I finally met diabetes (and RA) blogger from Baltimore, Molly Schreiber.


The Diabetes UnConference Las Vegas 2016 Alumni.  I facilitated for the first time.  A meaningful event made even more meaningful.

The Diabetes UnConference Las Vegas 2016 Alumni. I’m somewhere in the back. I facilitated for the first time. A meaningful event made even more meaningful.
(image courtesy of The Diabetes Collective, Inc.)


The Children With Diabetes organization came back to the D.C. area for Friends For Life in Falls Church, Virginia in April. Their website says they're coming back in 2017.

The Children With Diabetes organization came back to the D.C. area for Friends For Life in Falls Church, Virginia in April. Their website says they’re coming back in 2017.


April was a busy month that included the Medtronic Diabetes Advocates Forum in Los Angeles.  Great to spend time with more awesome advocates.

April was a busy month that included the Medtronic Diabetes Advocates Forum in Los Angeles. Great to spend time with more awesome advocates. I’m somewhere in the back.


Thank you Karen Graffeo for years of Diabetes Blog Weeks.  2016's week was superb, and I discovered more new blogs!

Thank you Karen Graffeo for years of Diabetes Blog Weeks. 2016’s week was superb, and I discovered more new blogs!


Coming back from knee surgery last year, I was able to run my neighborhood 5k in July.

Coming back from knee surgery last year, I was able to run my neighborhood 5k in July. I’ll be back next year, and I have definite plans for at least one bike ride.


I was proud to represent Diabetes Patient Advocacy Coalition at the big enchilada, the Friends for Life gathering in Orlando in July.  I was also extremely fortunate to spend time with great people, including Karen and Pete Graffeo, and one of my favorite writers, Cara Richardson.

I was proud to represent Diabetes Patient Advocacy Coalition at the big enchilada, the Friends for Life gathering in Orlando in July. I was also extremely fortunate to spend time with great people, including Karen and Pete Graffeo, and one of my favorite writers, Cara Richardson.


Encouraged by a few people I met in July at Friends for Life, I applied for and received my 25 year Journey medal from Lilly Diabetes.

Encouraged by a few people I met in July at Friends for Life, I applied for and received my 25 year Journey medal from Lilly Diabetes.


The Diabetes UnConference made its way to Atlantic City in September.  I'm wearing my Lilly 25 year medal on this day, sitting with the other facilitators in the front row.

The Diabetes UnConference made its way to Atlantic City in September. I’m wearing my Lilly 25 year medal on this day, sitting with the other facilitators in the front row.
(image courtesy of The Diabetes Collective, Inc.)


Cherise Shockley started with a goal of 12 hours of diabetes Twitter Chat on World Diabetes Day in November.  It turned into a full 24 hours of talking diabetes, with many moderators (including me), from around the world.I have been so fortunate to help moderate the Wednesday DSMA Twitter chat at least once per month this year.

Cherise Shockley started with a goal of 12 hours of diabetes Twitter Chat on World Diabetes Day in November. It turned into a full 24 hours of talking diabetes, with many moderators (including me), from around the world.
I have been so fortunate to help moderate the Wednesday DSMA Twitter chat at least once per month this year.


Insulin pricing has been an issue for a number of years, but it has gotten more notoriety lately, in part due to Senator Bernie Sanders' tweets.  There will likely be more discussion on this issue in the coming year.  See some of my recent blog posts to see my thoughts. (image courtesy of Twitter)

Insulin pricing has been an issue for a number of years, but it has gotten more notoriety lately, in part due to Senator Bernie Sanders’ tweets. There will likely be more discussion on this issue in the coming year. See some of my recent blog posts to see my thoughts.
(image courtesy of Twitter)

This isn’t everything either… I was able to attend an FDA workshop in August. There was the dustup over United Health Care’s decision to limit access by entering into agreement with Medtronic, making them the exclusive provider for insulin pumps through their insurance in the USA. And there’s FDA’s approval of the Medtronic 670g, the hybrid closed loop system that brings us closer to a truly artificial pancreas solution.

Those are just the things I’ve experienced this year. Of course, my diabetes is not your diabetes, so your year may have been different. However this year has gone for you, I hope that it has been filled with happiness and many new acquaintances. Even more so, I hope that 2017 brings you and I the best year yet. We deserve it! And please remember: I support you… no conditions.

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The Diabetes UnConference experience.

Over the past two years, many people have questioned me about the Diabetes UnConference. What happens? How do you decide what to talk about? What do you mean, “meaningful connections”? And what’s that no-social-media thing all about? I’ll tell you, in the past two weeks, I even had someone call me out on Twitter over that last one.

So, from start to finish, let me walk you through what a participant experiences when they sign up to attend the Diabetes UnConference.
Un
To begin with… when you sign up, you’re on the list. That’s my term. But whatever term you might use, you are on the list. You’re added to the list of attendees who will receive e-mails about what to expect when you arrive. What the meeting rooms are like (they’re often a little cold). What meals are part of the UnConference schedule. Timing of the different events.

You’re also on the list receiving the survey. The important survey where you list the things you really want to talk about on UnConference weekend. Hey, we’re the experts in our diabetes. The UnConference idea centers around the attendees setting the agenda and sharing what they know, instead of another guy in a blue suit and red tie showing you his PowerPoint presentation. The survey results are compiled, and as much as possible, we try to include all the subjects important to the PWDs (People With Diabetes) and PLUs (People who Love Us) that will be joining us.

But you’re not on a list, or on an island, by yourself. You’re also added to the Diabetes UnConference Facebook group, the one that includes only the attendees and facilitators for your specific UnConference. This is where the bonding begins, where people start to get to know one another. Where the tribe begins to form. We begin with introductions and share stories well in advance of our weekend together.

Wow, we haven’t even gotten to the actual UnConference yet. Stay with me.

Registration begins on Friday afternoon. For the facilitators, it’s a chance to meet new attendees for the first time and answer any questions. For returning attendees, it’s a chance for smiles and hugs and a little catching up before our meet and greet on Friday evening.

At the meet and greet, attendees are finally in the same space all together for the first time. Old friendships are made new again. New friendships begin to take hold. I usually hear a lot of comments like “Oooh, I like the color of your pump”, or “I make that too, but I do it gluten free and it’s delicious”, or “Where did you find that cute patch to go over your CGM sensor?”. All of that sets us up for Saturday and Sunday.

Saturday, we start to delve into the things that matter most to the people in attendance. Just a few topics are covered with everyone in the room. Mostly, PWDs gather to talk about what PWDs told us they wanted to talk about, and PLUs discuss things they shared via their survey. These are the moments that can be the funniest, the most raw, the most scary, and everything in between. And this is the reason for the no-social-media-during-the-sessions policy.

When people are sharing things that, in some cases, they have held close to their heart for many years, it would just be unfair to share that with the rest of the world via Twitter or Facebook. That is not why someone opens themselves up like that. They do it because they’re in a place where they feel protected, safe, without judgement. It is a protective cocoon where members of the tribe know there are no wrong questions. It’s a place where people can speak and know others are listening instead of reading another online news story on their phone. It’s where we feel respected. Where we feel valued as members of the tribe.

Often, at meals, in between sessions, and even during sessions sometimes, additional conversations are taking place in the hallways among people who connect even further on specific subjects that are more important to them than anything else going on anywhere else at that time. This is all part of those “meaningful connections” we often speak about.

Saturday night, the group gets together for a bit of a party or an outing as a group. After a day full of discussion on some heavy subjects, we need a little time to blow off some steam. So if you see posts of people letting go on Saturday night, this is why.

Once the last session is complete on Sunday, and people begin to head home, there are hugs and tearful goodbyes and contact information exchanged. There is a lot of hanging around and sharing one on one or two on two, etc. This can last for hours after. First-time attendees become alumni. Alumni look forward to continuing the conversation via the Diabetes UnConference Alumni group on Facebook, where alumni from all the UnConferences talk about their achievements, or vent about their frustrating day. Once the tribe forms, you’re part of the tribe forever.

You know, that’s a lot of stuff packed into just three days. Three days plus the time leading up to the UnConference, and the lifetime of friendships that come after. Still, a lot of stuff.

Yes, the Diabetes UnConference is unique. No, it’s not exclusive in any way. Yes, you will be welcomed as an equal whether diabetes has been a part of your life for 50 years or 50 days. It’s not always about “hey, I was able to lower my A1c”, though that happens sometimes. It’s more about knowing you are the expert in your diabetes, regardless of where your A1c sits at the moment. It’s about a shared experience with people who, if you let them, will be a part of your life for the rest of your life.

The Diabetes UnConference Las Vegas will be February 10 -12, 2017. To join the tribe, register here:
diabetesunconference.com/register

Full disclosure: I am part of the 2017 team of facilitators for the Diabetes UnConference.

8 things to help you manage your blood sugar (and your life) over the holidays.

With another holiday season upon us, we have more chances than usual for our blood sugar to get out of whack. There are several reasons for this, and if you will permit me, I’m going to list eight of them here.

Why? Because I’ve made plenty of mistakes in my diabetes management over the holidays. So you can consider these a sort of “don’t make the same mistakes I’ve made” list.
8
1. Be careful what, how, and when you drink. Others have written about alcohol and diabetes far better than I ever will. See HERE and HERE and HERE. Of course there are more chances to imbibe in December, and being careful does not always mean you have to say No. It just means it’s important to be aware of how alcohol affects your blood sugar. Hint: it’s not how you might think.

2. What about those parties? There’s no question there are more social situations right now than there are earlier in the year. Some of the questions I ask myself are: Is a party taking the place of a meal? Is it between meals, or later in the evening? It’s important for me to know, because it will help me determine whether I need to set a temporary basal on my pump (either higher or lower).

3. Keep up on the BG checks. If I know I’m going to a party that starts around 6:00 p.m. (around when I usually eat dinner), I can do a check before I leave the house and when I get to the party, so I have a good starting point before I decide to eat something. Of course, if you’re wearing a CGM, you’re going to be looking at that a little more often through the night, and that’s great. If the party includes some finger food but it’s not an actual meal, I’ll probably just bolus a little after I see what’s there to eat and guess what my carb intake might be. The point is to stay on top of my BGs in situations like this because it’s easy for me to have numbers that are not normal, for various reasons.

4. Do not over bolus. As someone who makes this mistake from time to time, let me say it again: Do not over bolus. Your diabetes numbers do not have to be perfect in December, and it’s probably best that you don’t set yourself up for disaster by trying too hard to get to 100 mg/dL. If you’re checking your numbers a lot anyway, you’re obviously doing what you can to mitigate super high numbers. Don’t make it worse by rage blousing and winding up with a hypoglycemic EMT or ER visit at the holidays. I’ve been there. If I can help it, I won’t make this mistake again.

5. That said, Yes, you can eat that. Hey, don’t look to me for validation for eating that cupcake with the red and green sprinkles. But if you do it, don’t complain about a high BG number later. Most of us are adults. We’re capable of making our own decisions, while usually recognizing where the line is, even if we do cross it once in a while. Ignore that crummy “sugar free” [insert dessert name here]. Often, the carb count isn’t any less than the real thing. It just doesn’t taste as good, and sometimes it’s laced with sorbitol, which means if you do eat it, you might be spending more time than usual in the bathroom, rather than with your friends and family.

6. Go with the flow. Like I said in the last paragraph, your numbers are not always going to be perfect. Do you want to concentrate on diabetes perfection, or do you want to enjoy special times with family and friends? We’re meant to celebrate the holidays, not obsess over our next A1c.

7. Have a diabuddy? When spending time in places and among people where your diabetes isn’t well known, it’s especially helpful if someone else in attendance “gets it”. If your spouse, or a friend who knows you and/or your diabetes well can attend with you, you’ll have the added feeling that no matter what happens, someone will be there who understands you and can help you when you need it. Who doesn’t like to have a wingman? Bonus tip: a bracelet or necklace announcing your status as a Person With Diabetes is almost as good.

8. Enjoy, enjoy, enjoy. Be grateful. Be nice. It’s okay to talk diabetes (it’s kind of hard for me not to talk about diabetes), but it’s a festive time too. Ask someone else how they’re doing. Tell someone how happy you are to see them. Wish them all the best this holiday season.
 
 
So remember to check often. Be careful while imbibing. Don’t be too hard on yourself. And have a happy and fun time this December.

Underwhelmed.

It’s back in the news… insulin pricing.

Helped along by a few well-meaning tweets from Senator Bernie Sanders, and maybe a little by the Epipen debacle by Mylan, insulin makers are finally coming to patients and discussing cost in more detail. See the excellent reporting by Mike Hoskins at Diabetes Mine HERE and HERE. It’s good that they’re at least talking about the ever rising cost of this drug. I mean, it’s good, right?

Excuse me while I yawn.

There are countless reasons why insulin costs as much as it does in the United States. One thing is certain: no one wants to break down those reasons for you in any kind of concrete terms. In the case of “pharmacy benefit managers”, they won’t even come to the table to discuss it at all. And in the case of Novo Nordisk, Eli Lilly, and Sanofi, they’re going to talk, but they’re not going to help you understand how much of the cost of insulin goes to them and how much goes to everyone else in this game of legal graft.

This story has really been in the news for some time… I even wrote about it a year and a half ago, after NPR did a story on it. Yet we’ve continued to see the cost of insulin soar higher.

The amount of revenue generated through insulin pricing is in the tens of billions of dollars per year, most of it coming from here in the United States. It’s more than enough for everyone with skin in the game to be rewarded handsomely. Those are just the facts. Like it or not, insulin is a cash cow for drug makers and “pharmacy benefit managers”. Sure, it costs a lot to produce or acquire, but with Type 1 patients especially, they will always have a market for their product. It’s a drug of necessity, not a drug of convenience. I’m not sure there’s any motivation at all for producers or “pharmacy benefit managers” to take action on price.

I hope the discussions that are taking place between the drug manufacturers and patient advocates result in positive steps that will reduce the overwhelming cost of insulin for patients who need it to survive. But I have to be honest: I’m feeling underwhelmed.

Look, discussion is good. It means we’re not forgotten, or worse, ignored. Discussion often leads to things, positive things. I do worry that, as an HIV/AIDS advocate once told a gathering of diabetes advocates, they’re just “checking our box”. Check the box, move on. I don’t think the attendees at the meeting in Washington in November are the type of advocates who will stand for just having their box checked. I hope not.

But for now, I’m in a wait and see mode. Respond to calls for response on insulin pricing issues offered by advocates. Contact my congressman and senators, maybe my state’s insurance commissioner. Spend too much for insulin. Rinse. Repeat.

Underwhelmed.

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