Juice boxes in the middle of the night.

You know, it’s really hard to get juice from a juice box in the middle of the night.

Think about it… you have to find the juice box (usually in the dark), you have to grab the plastic straw from the side of said juice box, you have to remove the plastic wrap from around the straw, and then you have to poke the juice box with the straw in the tiiiinny little space allocated for that procedure.

That is really difficult to do at one o’clock in the morning when you’re shaking, you’re sleepy, and your vision without all of that would make it hard to see what you’re aiming at anyway.

Well, that was exactly the scenario the other night, and as you can tell, I was successful in the end. But diabetes was also successful in scaring the crap out of me.

My last bolus prior to that was about five hours earlier. Still time for the insulin to affect my blood sugar, but past its peak, I believe. Feel free to correct me if I’m wrong. My last BG check was at 10:30, right before bed. For the record, my meter read 135 mg/dL. Not high, not super low, but okay considering my basal rates do a good job of keeping me pretty steady throughout each 24 hour period.

Yet every once in a while complacency bites me in the ass, because diabetes acts different from the way it acts under 90 percent of the other circumstances I’m used to. Those are the dangerous moments. Those are the frustrating moments. Those are the critical moments when I just have to ignore everything else and concentrate my focus on doing the one or two things necessary to keep myself alive.

And make no mistake, keeping yourself alive is exactly what you’re focused on in moments like this.

Maybe the circumstances leading up to this event can help explain why my blood sugar tanked in the middle of the night. But even if they could, it’s like much of the science surrounding diabetes. There’s a link, but you have to look really hard to find it, and when you do, you find that the details are so complicated that it would be hard to remember all of it later on.

When our brains are overloaded with math, prescriptions, doctor visits, and remembering to bolus at the right time (among other things) already, it’s easy to see why most of us don’t get too invested in the causes of our hypoglycemia. It’s very complex, and each scenario could be different anyway. If there’s something that really stands out, like over-blousing or insulin stacking or not factoring in exercise, we identify it and correct it next time. Anything deeper than that, and we’re likely to lose track of it.

Solving lows like this is often like learning the engineering behind sending a rocket into space. There’s so much to know, you can’t possibly learn it all on your own. And unlike science, diabetes changes over time, so even if you learn everything behind today’s low, it might not help you with the one you experience six months from now.

I’m glad everything turned out okay in the end. I worry about those who experience the same circumstances where things don’t turn out okay.

And I still worry about what I don’t know.

Like these links, Friday style.

I’m very excited to share these links with you today. One about funding diabetes advocacy, and two about two of my Favorite People to Follow on Social Media. Here we go:
 
 
To begin with, Dexcom employees have just started up a new charitable organization called Dexcom One Step Ahead Foundation. The One Step Ahead Foundation will be funded by Dexcom employee contributions and fundraising efforts by Dexcom employees, and it aims to support grants of $10,000 to $50,000 to “…advance the missions and purposes of tax-exempt organizations that provide services and programs to people living with diabetes and their caregivers”.

I’m all for funding diabetes advocacy. A new infusion of funds like this can help make a real difference, so a big Friday Thank You Dexcom employees!

There’s a short window for this year’s grants… proposals must be submitted from August 22 through September 28. Grant awards will be announced during Diabetes Awareness Month in November. Sharpen your pencils!

To find out more or to submit your own grant proposal, you’re encouraged to contact Dr. John F. Gallagher at drjohnfgallagher@gmail.com. To read more about this generous initiative by Dexcom employees, CLICK HERE.
 
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Those of you who know me know that I live in Baltimore, but did you know that I am not the most popular or the best health blogger in my area? Not by a longshot. Molly Schreiber lives with Type 1 diabetes and Rheumatoid Arthritis, and she has a terrific blog called And Then You’re at Jax. She’s very active in both the Diabetes and RA communities online, and her blog reflects that. She’s also very nice, and she’s pretty funny at times too.

This week, Molly was featured on The Mighty website with her description of her newfound dismay over local businesses that do not have very friendly entrances.
Check this out and see what I mean.
 
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I met Mariana Gomez back in April at the Medtronic Diabetes Advocates Forum. Her friendliness, paired with her passionate advocacy on behalf of people living with diabetes in her home country of Mexico and beyond, was quite impressive, and something I won’t soon forget. Everyone over at her own blog and at EsTuDiabetes probably knows what I mean.

Mariana is a real gem. So I want to share this little piece that DiabetesMine shared on Mariana this week (and don’t forget to look for the one on Molly too!).
If you haven’t heard of Mariana yet, this is a good place to learn about her and her life with diabetes and her impact on the Diabetes Community.
 
 
That’s all for now… but I can’t leave without linking to my own blog, reminding you to nominate your favorite Champion Athlete With Diabetes (even if it’s you) so they can put their very own medal around their neck. Why should the Olympic athletes have all the fun?

Knowledge, respect, empathy.

I received a wonderful bit of feedback from a colleague at work this week:

”Steve, you did an incredible job facilitating the Millennial panel. You have a knack for being able to ask difficult questions and getting people to open up. Your presence had a calming effect on the group and you exemplified active listening when you rephrased our responses to gain clarification. I hope you take the opportunity to do more facilitation because you’re great at it.”

Little did this person know…

Since I don’t share much of my work in the diabetes community with the people I work with, there’s no way for this person to know that I actually have recent experience facilitating. But this feedback helped underscore the importance of conversation, and the equal, if not exceeding, importance of listening.

A lot has been written about the importance of communicating with your medical team, how to share goals and concerns with them, and conversely, how we would like to be talked to by our medical team. In fact, we talked about this a lot last Thursday during the DSMA Live event in San Diego, which was live via Periscope with the #DSMA Twitter chat going on simultaneously during the American Association of Diabetes Educators conference. This was the first time so many CDEs were involved in conversation with People With Diabetes at the same time, in the same space. We talked about a lot, and I think we all learned a lot too.

I think there are specific themes that translate to our communications with doctors, Certified Diabetes Educators, and other healthcare professionals we see on a constant basis. It’s important to get our points across, and it’s important to listen to and lean on the knowledge and support of caring, dynamic healthcare professionals.

Patients, let’s not forget– the conversation works both ways: just because I live with diabetes doesn’t mean I have the market cornered on sorrow. Maybe my endo has a family member that’s causing a great deal of stress in their lives. Maybe a CDE just got yelled at by another patient. Maybe an ophthalmologist is dealing with the chronic pain that afflicts people living with arthritis. As much as we try to shake things off (being human and all), all of these and more can affect conversations.

And in some cases, our HCPs need to up their game when it comes to reacting to patients. Sometimes we need advice. Sometimes we need changes to our therapies that we’ve been unable to figure out because we’re so close to our diabetes management. Sometimes we need to convey our fears without being judged that we’re not “in control” of our diabetes. Whatever the case is, the fact is, we need something or we wouldn’t be there.

So what can we do? How do we make the conversations between healthcare professionals and patients better, more meaningful, more impactful? Much of it comes down to knowledge, respect, and empathy. And remember, these ideas go both ways.

We need to bring our knowledge to the table, not be afraid to display it when necessary, and not be afraid to admit when we don’t know something. I mention that last part because in the past, I have been more likely than others to gloss over something I don’t know. Admitting that you don’t know something can be difficult because it can make you feel vulnerable. Getting over the feeling of vulnerability can actually be quite freeing. One less thing to worry about. Getting over it can be helped along through respect from the other side of the conversation.

Respect is one of the things that is hardest to get right. On the surface, you wouldn’t think this is true, but respect can often be something we can easily hold back on (for “evidence of worthiness”, for example), and it’s something that we can lose and lose track of quickly without really recognizing that we’ve done so.

But respect for the other person in your conversation really allows for someone to be vulnerable. It allows some space, some comfortable air, for a patient to state that they don’t know what a dual wave bolus is, or that their diabetes burnout is really scaring them. It gives a doctor the room to say that they don’t know anything about inhalable insulin, but they will check it out to see how you can safely fit it into your diabetes management.

Empathy is something that, as I’ve stated before, People With Diabetes possess in abundance. But, and I hate to say this, but sometimes it seems like our empathy only extends to the others in our community. We have empathy in abundance. I think we have enough to spread around to our HCPs too, if we’re not doing so already.

Healthcare professionals can show empathy simply by considering us as human beings first, and as patients second. Though it’s a huge part of our lives, we are more than our diabetes. Those aren’t words that haven’t been written before. But maybe someone hasn’t read them before? Maybe there’s someone who has forgotten them? I don’t know. I do know that becoming empathetically invested in someone else’s life and goals and hopes and aspirations does not cost one single dime. And usually, the rewards are more than worth the effort.

I guess what I’m saying is, you can be a great facilitator too. When you apply the principles of knowledge, respect, and empathy to your online and offline conversations with others, whoever those others are, your conversations mean so much more, allowing room for honesty and growth for the people affected by those conversations. And doing so leaves little room left for judgement. Remember:

I support you… no conditions.

Let’s hold our own Gold Medal Ceremony.

It’s Summer Olympics time! And what does everyone at the Olympics want?
.DSC01178
That’s right… we all want our very own gold medal.

Guess what? If you’re a Person With Diabetes, or you know someone living with diabetes, and said PWD is staying active, achieving athletic goals, I have a gold(colored) medal to award them.

Let’s face it: right now is the time when most of us are most active. Have you been running a 5k? Running every week? Walking every day? Getting on your bike and putting pavement behind you?

You don’t have to be like the NASCAR driver, or the member of the USA Women’s Curling team who have been awarded medals. You can be someone who takes a boxing class, is a ballroom dancer, or a runner, or a kid who loves to play basketball. Or, like a recent winner, you run a half marathon in a tutu. Regardless of your sport, whatever your level of skill, there is a medal waiting for you.

Why should the athletes at the Olympics be the only ones getting a medal? You’ve worked hard… friends or family members living with diabetes have worked hard. We all know it’s not easy to stay on a training schedule and deal with insulin, low blood sugar, high blood sugar, what to eat, what not to eat, staying on schedule, working hard. Heck, all of that is practically an Olympic event in itself. The kind of event that no one wants to compete in. But People With Diabetes compete and win in that event every day.
 
 
Here’s how to win your Champion Athletes With Diabetes medal:

1. The athlete receiving the award must be living with diabetes.

2. The athletic event must have taken place in the last six months. For now, we’re going with a pretty loose interpretation of the word “event”. If you feel you’ve accomplished something important to you, that’s an event.

3. Send me an e-mail at champswithdiabetes@gmail.com. Tell me your name, name of the athlete (it’s okay if it’s you), and your address (gotta know where to send the medal). Most important, tell me what athletic goal was accomplished, and when. Extra points if you tell me how you felt accomplishing the goal. Full disclosure: I reserve the right to use your testimonial here, on Twitter, and on Facebook. I will not use your name if you don’t want me to. As always, I will never share private information.

4. When you receive your medal, it would be great if you post a photo of it around the athlete’s neck. You can send a Tweet to @ChampsWithD (hashtag: #champdathletes) or post it on the Champion Athletes With Diabetes Facebook Page.
 
 
We’ve awarded medals to over 80 athletes in 20-plus states and territories, 14 or 15 countries, on five continents. Let’s not let the Olympic athletes have all the fun.

Let’s hold our own Gold Medal Ceremony. Write me today.

It’s up to us.

So a lot of people received letters like these in the mail recently:
UHCLetter
I’m not sure the letter has a purpose, other than to prove that the writer, Dr. Richard Migliori, Chief Medical Officer at UnitedHealth Group, can write an entire page full of words and still not say anything meaningful. I suspect that in this case, that was the point. Plus, in all fairness, it’s hard to be both a doctor and an administrator at the same time.

Now, you might think this letter would make me mad, because it doesn’t really address my concerns at all. But I view it positively. Despite the archaic nature of the correspondence, it is actually communication. From a real person.

Here’s the thing: As a result of the various #DiabetesAccessMatters campaigns, people know we exist now. And they feel like they need to respond to us. Look… UHC wasn’t going to get a bunch of letters and then immediately wake up and say, “Whoa, maybe we’re not doing the right thing here. Maybe we should change our minds”. But in raising our voices, we began a dialogue. It’s a dialogue that will probably have to continue for some time, but that’s my point.

Now that the dialogue has been opened, we need to keep the conversation going. Maybe that means responding to a letter like this directly. Maybe that means calling your state’s insurance commissioner to voice your concern. Maybe that means letting your employer know that UHC isn’t your favorite insurer right now. That’s what I did, and I think my state insurance commissioner is next.

Much of the answer to the #DiabetesAccessMatters issue is the same as it is for other issues before us as People With Diabetes or friends or family of PWDs. To win the day, we must apply pressure, and keep the pressure on. We need to overcome fear by standing in the knowledge that we are on the right side of history.

We’re not asking for anything more than what we deserve. UHC patients are not asking for anything less than what they had prior to July 1. Because it’s what they deserve. It’s what they’re paying for. And, oh by the way, it wouldn’t cost UHC one extra dime to allow the same choice that existed less than a month ago.

So don’t stop communicating. This conversation may be just beginning. It’s up to us to make sure it doesn’t end until choice is restored.

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