Diabetes is hard. But we’re worth it.

Diabetes. Our lives with diabetes is a balancing act.

Keep those numbers in between 80 mg/dL and 120 mg/dL. We know that a hemoglobin A1c reading under 7.0% is optimal. As we also know, there are studies that show that people who achieve this are more likely to spend a fair amount of time with hypoglycemia (dangerously low blood sugar) than people who don’t. Among other things, hypoglycemia can potentially do damage to our hearts and our brains. Of course, if our A1c is over 7.0, we’re faced with a number that makes us feel like we’re not successful. It makes us want to do all that we can to get it under that number. Even though that could possibly mean additional risk of hypoglycemia. That’s a lot to consider.

But wait… there’s more. The closer our numbers are to perfect, the closer we are to bad lows. What do we do when those lows occur? We treat them, with juice or peanut butter sandwiches or cookies or Nutella or whatever works. Or all of those things, plus a couple more. Because above all, hypoglycemia is scary. It’s a near-death experience that shakes our confidence and makes us want to make it go away as quickly as possible. So sometimes we over-treat. Which leads us to hyperglycemia (high blood sugar) later on. And pretty soon our glucose management looks like this:

DSC00849

The hyperglycemia? In a word, that’s frustrating. Partly because we’re aware (we’re more than aware) of the complications it might bring years down the road, and partly because we don’t want our hard work go to waste just because we decided to eat something because it would save our life. Hyperglycemia makes us sluggish, tired, thirsty, and again, frustrated. And while we can encounter it after over-treating a low, we can also encounter it due to a bad injection site, bad insulin, or a crazy metabolism that can have us under 100 one day and over 300 the next. While the “eat 15 grams of carbohydrates, wait 15 minutes and check” idea is the standard for treating lows, it can take hours to come down from those highs. It may take the ingestion of copious amounts of water, lots of exercise, trimming our diet, extra insulin, or any and all combinations of the four to bring us back into range. Or back down into hypoglycemia again.

Add to that the fact that we’re more susceptible to infection, more likely to encounter eye and foot problems, under additional risk of heart trouble and stroke, and also facing people in our lives who just don’t understand why these things are true and want to blame us instead of helping us, and you can see why diabetes ain’t no kiddie game.

Yet we go on living our lives, in wondrous and amazing ways. We often have parents and spouses and girlfriends and boyfriends and just friends who help us and give us the strength to know that we’re worth all the trouble. If you’re not living with diabetes and you encounter someone who is, remember that diabetes is a moving target, it’s always, and it’s hard. The best thing you can do is live our lives alongside us, displaying the assets of perseverance and empathy that all people living with diabetes possess. Just ask us… we really are worth it.
 
 
 

FDA Workshop– I came, I saw, I listened.

FDA

I mentioned last week that I would be attending the public workshop at the U.S. Food and Drug Administration, titled Regulatory Science Considerations for Software Used in Diabetes Management.

It was a pretty full day.

Remember, this was a day off from work. You know, that thing I do to make money so I can actually attend these things in person. I woke up earlier than I do when I actually go to work, and instead of leaving the house between 7:00 and 8:00, driving a mile and then getting on a train, I left at 6:00 and drove to FDA headquarters in Silver Spring, Maryland, over an hour away through almost rush hour traffic.

The proceedings started at 8 a.m., and the day started with presentations related to something that I’ve really taken notice of this year: Interoperability.

When I go to meetings and workshops where a lot of presentations are made, I try to go over each person’s message and convey that to you here. This time, I’m not going to do that. Instead, I will refer you to the webcast replay that’s available over at the FDA’s website, where you can get video, audio, and presentation slides. I will, however, share a little of what I experienced on that day.

I always learn a lot when interoperability is discussed. It’s such an interesting subject to me, and it’s an idea that’s long overdue in the diabetes world. I didn’t expect to get much out of the bolus calculator presentations, but I was wrong about that. The talks were very good, and the panel discussion at the end was great to see.

The presentations were all informative and interesting. Particularly, those from Howard Look of Tidepool, who made an excellent presentation, making the case for interoperability based on the simple fact that we need to reduce the burden of diabetes on the patient, and interoperability would most definitely be a step in the right direction. Dr. Joe Cafazzo talked about the research his team is doing in Toronto, working to understand and map out a strategy for a standard of device data interoperability. As someone in the Q & A session mentioned (a corporate representative in the room), think about when you purchase a lamp and it has the UL symbol, or think about how HTML is the standard code throughout the internet. If we can arrive at a standard for diabetes devices, it might make it easier for a company to deliver trusted product to consumers (us), and then market it by saying it meets the standard.

Adam Brown of diaTribe was fantastic speaking about insulin bolus calculators, how they work, and what the impacts of bolus calculators are to people living with diabetes, backing everything up with lots and lots of supporting data (the FDA really likes that). Dr. Howard Wolpert from Joslin Diabetes Center and Jane Seley of New York Presbyterian Hospital gave fact-based talks that confirmed the anecdotal stories they shared about dealing with diabetes patients on the front lines over the course of many years of service.

The panel discussion surrounding bolus calculators was interesting. Most of the discussion had to do with the many bolus calculator apps that are out on the market now. While a calculator within my insulin pump must be approved by the FDA, apps that perform the same function do not right now. The moderator of the panel was convinced that these bolus calculators should be regulated. Adam Brown and Howard Wolpert made a convincing case (in my eyes, anyway) that, in Adam’s words, “a patient using a bad bolus calculator is still better off than a patient just winging it”.

At the end, Dr. Courtney Lias (look her up) shared a few things with us. She appreciated everyone’s viewpoints, and indicated that the FDA intends to continue the discussion. Not sure how yet, but they are willing to commit to having more discussions in the future on these subjects. What is not on the table: Restricting bolus calculators. The important thing, she said, is that the FDA get the right touch between innovation, patient safety, and the idea of benefit vs. risk for people living with diabetes. She reminded us that the patient is key… safe, effective tools to manage diabetes is everyone’s goal… and one person’s diabetes is not like another’s, so not every solution will meet the needs of every PWD.

In addition to all this, I got to sit down at lunch with a person working on the Nightscout project, and with another industry representative. It was great getting a chance to share my story with them firsthand (though I’m not using Nightscout—or a CGM right now).

And during the public comment portion of the proceedings, I was allowed to speak…

Photo of my best side courtesy of Bennet Dunlap

Photo of my best side courtesy of Bennet Dunlap

I’m usually a good public speaker. I enjoy getting up in front of people and talking. This, however was not my best performance, though I think I got my message across. It was basically the same thing I published here earlier. You’ll probably be better off if you go to that and read it to yourself, rather than listening to my ramblings.

Anyway, there were a couple of people left to speak after I was finished, and while I sat there listening to them, something strange happened. I was almost overcome with a wave of emotion. I started to ask myself “What did I just do?” and “Four years ago I wasn’t involved in anything outside of my own neighborhood… How did I get here?”.

I think it was just a feeling that I had something to say, and I said it, and damn anyone who might try to belittle it. Including you, industry representative on the aisle who gave me that sour look as I walked back to my chair. I understand that companies want to advocate for what’s in their best interests. Well, that’s what I was doing too. Advocating for what is best for me as a patient. I understand and respect their concerns, but when they clash with what I need and deserve as a patient, I’m going to advocate for me and not be sheepish about it.

In the final assessment, I can say it was a day in which I was able to learn a lot, meet new people, and share my needs with the federal agency that plays such a big role in our lives. All of that made it well worth losing a little sleep and schlepping to D.C. in the dark. The timing (November 13) made it feel like an early World Diabetes Day gift.
 
 
 

Happy World Diabetes Day, Advocates. I’m looking at you.

So here we are. World Diabetes Day, 2014. And everyone’s burned out.

Sorry to throw cold water on a day when we should all be showing our true diabetes selves to the world. But hey, the burned-out part is part of our diabetes selves, isn’t it?

It is. There are also soooo-oo-ooooo many initiatives out there right now that even energetic-little-old-me is feeling overwhelmed. And that’s what I want to talk about.

Because I think there’s a difference between feeling burned out and feeling overwhelmed. Burned out is “I’ve done all these things and I’m so tired and I just can’t muster the energy for one more task”. Plus “I’m tired of doing all these things and seeing no outward result”. Completely understandable, and believe me, I’ve been there.

On the other hand, overwhelmed, to me, is “Big Blue Test”, and “Dexcom Share has been approved”, “#Vote4DM”, and “#MedicareCGM”, “Blue Circles” and “Diabetes Awareness Month” and “National Diabetes Awareness Month” and “National Diabetes Month” and “Where do I start?”. Again, I totally get it. It’s hard to keep up with everything and give 100 percent effort to all the things.

It’s even possible to feel burned out and overwhelmed at the same time. Plus, the magnitude of this month in addition to the big things people are doing has a certain way of making the rest of us (and what we’re doing) feel kind of small by comparison.
 
 
So let’s take a deep breath. Find some perspective.

Let’s acknowledge a few diabetes truths here:

– If you’re living with diabetes, or helping someone who lives with diabetes, You Are An Advocate. That’s true if you’re in your first year or your fiftieth. Or sixtieth. Or… you get the idea. Pat yourself on the back every day. You deserve it.

– If you’re telling your story by writing a blog, shooting a video, tweeting your #WalkWithD, participating in the 24 hour #WDDChat2014 today, or engaging with your diabetes brothers and sisters via Facebook, Instagram, Tumblr, or any other social media outlet, You Are An Advocate.

– If you’ve mentored another person living with or affected by diabetes, either online or offline, whether anyone was looking or not, guess what? You Are An Advocate. Extra points if you picked someone up who was feeling defeated by this disease.

– If you’ve ever set the record straight for someone who didn’t know better, dispelling myths and taking back your dignity, whether anyone was looking or not, guess what? You Too Are An Advocate.

If you’re living with diabetes and pursuing your athletic goals through adversity and despite the extra toll it takes on your psyche and your blood sugar, You Are An Advocate.

– If you’re a woman who has lived through both diabetes and pregnancy, You Are Most Definitely An Advocate. And Congratulations Jen and Kelley and Elizabeth.

– If you’re a Mom or a Dad who is raising a child at the same time you’re managing your diabetes, or you’re a Mom or Dad raising a child living with diabetes, gosh, I have such admiration for you, and by the way, You Are An Advocate.
 
 
There are many ways we show our advocacy, and it doesn’t always have something to do with the latest D-cause. Often, it has to do with the examples we set by living our lives with diabetes, rather than having our lives ruled by diabetes. There are no levels of deserving. You are just as worthy of my respect and admiration as anyone ever cursed by this chronic condition.

So while you rest up from your diabetes burnout and your diabetes-advocacy-event overload, remember to acknowledge the amazing ways you’re already making a difference. Write a list of your advocacy accomplishments. Look at it whenever you need a boost. If you want, you can leave a comment listing them here, either with your name or anonymously. I’ll bet when you do, you’ll find a lot to be proud of. Know that I and many others are proud of you. And grateful.

Thank You.

And please remember: I support you… no conditions.
 
 
 

Interoperability Awareness.

I’ve been living with Type 1 Diabetes for 23 years.

Like everyone else who was diagnosed with Type 1 around the time I was (1991), there were just a few options. Those options included, thankfully by then, glucose meters that gave us a reading from a drop of blood we provided. We used the data from those meters as a base for our dietary decisions and our insulin dosing. Also, as a basis for the imagined success or failure of our diabetes management.

Today, with little exception, we’re using the same system. The tools are better, probably more accurate, but we’re using the same system. Whether we’re using a continuous glucose monitor, an insulin pump, a Low Glucose Suspend system, or something else, we’re still using the same drop of blood to guide our decision-making process and the decision-making process of the systems we use.

And that’s okay, except it’s not, because we still can’t get what that drop of blood, or that CGM, or that insulin pump, or that LGS system is doing to work all on the same platform, informing the same data sources. That holds us up from sharing our data with our families (I’m familiar with Nightscout—I’m talking about all of our data). It keeps me from informing healthcare professionals on a real-time basis, at regular appointment times and if, God forbid, I wind up in the emergency room unable to speak for myself. It keeps researchers from being able to use my data to inform and support their discoveries. It keeps the diabetes devices that I wear from working efficiently, keeping me from achieving better outcomes with less effort. I’m talking big picture here: Not just “Can my CGM talk to my pump?”. I mean “Can my meter readings and CGM graphs and pump settings and prescription dosage and anything else health-related reside in one space?”.

Let’s face it: We’re now talking about cars that can drive themselves and using drones to deliver packages to our homes. Meanwhile, our diabetes devices are still dependent on years-old technology that is mostly confined within the length, breadth, and depth of the device itself.

If my data is all available via one source, where I control who can see it, but once I make it available, it’s easily accessible? That’s the jackpot in this discussion. And guess what? If that ever happens, I’m still going to want an insulin pump. I’m still going to want a CGM. I’m not going away as a customer.

To talk about the proprietary nature of software that a company has developed just doesn’t hold water anymore. The software that comes with your device doesn’t have a separate line item on the invoice. It’s baked into the price. Protecting “intellectual property rights”, in this case, is a 20th Century complaint for a 21st Century world. And it’s an 18th Century argument when it comes to what is best for the patient. I’ve said it before, and I mean it: Patient trumps Proprietary.

People With Diabetes need and are deserving of 21st Century technology that will not only help us reach better outcomes, but will help everyone who helps us reach better outcomes. Please join me in speaking out for greater awareness, and improved access to our data.
 
 
Tomorrow I’ll be attending the U.S. Food and Drug Administration’s Public Workshop – Regulatory Science Considerations for Software Used in Diabetes Management.

This is the message I’m taking with me.
 
 
 

8 Things I think I think.

With an affectionate nod to Peter King at Sports Illustrated, who in his Monday Morning Quarterback blog has a feature called Ten Things I think I think, I’m doing the same thing minus two. Hey man, I don’t do this for a living. If you want two more, you’re gonna have to pay me.
 
8
 
1. If all insulin pump warranties are for four years, and Medicare is a little over 12 years away for me (2027), do I want to get a new pump now– so I don’t have to get one until 2030, late in my third year on Medicare (2014, 2018, 2022, 2026, 2030); or do I wait until after my next birthday, which means I would have to go to a new pump on my first year on Medicare (2015, 2019, 2023, 2027)?
 
 
2. I’m wondering why, when I already have my brainpower sapped by managing my diabetes every day, I’ll have to decide from a complicated system of 4(+) Medicare options to make sure I’m covered for whatever comes up. Who designed this and thought this was a way to reward seniors for contributing to society for 65-plus years?
 
 
3. I’m worried that as a result, once I become Medicare eligible, I’ll probably just choose the first plan that covers my pump and ignore everything else.
 
 
4. I really don’t have to worry about all of this, because if the “experts” are correct, diabetes will be cured by then and I won’t even need a pump in five years (or less).
 
 
5. If only.
 
 
6. I’m pretty sure that first thing is the longest sentence, like, ev-er.
 
 
7. That fifth thing is the shortest.
 
 
8. Damn, that’s a lot of pumps.
 
 
 

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