Things I love about the DOC.

On Monday, I spent a little time talking about what I’ve learned from the Diabetes Online Community. Today, I’d like to talk a little bit about what I love about the DOC. Think of it as my letter of thanks on the day before Thanksgiving here in the USA.
 

  • This is going to sound sappy (I really don’t care if it does), but I have never encountered so many helpful, supportive, and unpretentious people as I have in this community. That even includes church communities.
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  • It’s pretty safe to say that Wednesday nights are my favorite night of the week. If you don’t know what I’m talking about, join us on Twitter by following @DiabetesSocMed and the #DSMA hashtag beginning at 9:00 eastern time(US), and maybe Wednesday will become your favorite night of the week too.
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  • The way the DOC mobilizes and helps people is inspiring and heartwarming. See Spare a Rose, Save a Child, Strip Safely, and YouCanDoThis Project for starters.
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  • I love reading people’s stories. Whether someone is getting comfortable with an insulin pump for the first time, participating in a clinical trial, handling work and their diabetes or school and diabetes (or both), there’s nothing like watching those accomplishments through another’s eyes. You all suck me in and make me invest emotionally in your lives, and it’s the greatest show on earth.
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  • The global nature of the DOC is incredible. I’m not only talking about people living all over the globe, but also people living all kinds of different lives all over the globe. If you’re new to this community, I think you’ll be surprised by the fact that you’re very likely to find someone just like you. “Me too” is indeed powerful.

 
About four years ago, I was feeling about as low as you can imagine. Today, there is so much for me to find out about and celebrate. Given enough time, I suspect I could double or triple this list without too much trouble at all. There is so much joy and information and advocacy and encouragement out there. I am very thankful for the DOC and what it has meant to my life these past few years.

Help me add to this list: What do you really love about the Diabetes Online Community?
 
 
 

Some things I’ve learned from the DOC.

If you haven’t been by this place on the internet before, or if you aren’t up on diabetes talk in general, let me tell you that DOC stands for Diabetes Online Community. Loosely defined as places and people that those of us with whacked pancreases connect with in cyberspace.

There are lots of communities online, and like many others, ours is a place that teaches as well as supports and connects. Here are some of the things that either I didn’t know, or didn’t know very well before I discovered the DOC:
 

  • There are so many people who go through the same things I go through every day. Many of them handle managing their diabetes better than I do, and I’ve learned something from each of those people.
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  • Insulin on Board—I was mostly oblivious to insulin on board before reading blogs from people describing how they account for it in their diabetes management. I had heard of IOB; I just didn’t understand it at all.
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  • The art of the Pre-Bolus—I had never considered pre-bolusing ever, and had never had a doctor suggest it, before I read about it online. I wish I had the link to the first really great blog post I saw about it. I’m the kind of person that is helped a lot by pre-bolusing.
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  • Dual Wave, Square Wave, and Super Boluses—I had seen the options on my pump for square wave and dual wave boluses, but didn’t dare try them because I didn’t know if they would help me, or how they would help me. Reading how others have mastered these, plus the super bolus, has given me the confidence to try them from time to time myself.
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  • How to travel with diabetes—I’ve always thought I was an intelligent travel planner. In reality, I had just been going through the motions and been lucky. After reading/seeing/Tweeting with people in the DOC, I’m a much more savvy packer, and I’m able to get a lot of gear in a small space if I have to.

 
 
As always, nothing written here should be taken as medical advice. Still, there is so much we are still learning from each other. As our community grows, the chances to teach and to learn will grow. I really like that.

So let me ask you: What have you learned from the Diabetes Online Community?
 
 
 

A Thanksgiving diagnosis, and the Champion Athlete it produced.

It’s been a long time since we’ve told the story of one of our Champion Athletes With Diabetes. Let’s do something about that.

Cole is seventeen years old. He lives with his family outside of St. Paul, Minnesota, where he’s been a soccer nut since he was three days old, cheering on his sister in a big game. This is his senior year of high school, and he’s on the roster of one of the top teams in the state.

He’s a tough kid. Played through a thyroid problem a year ago, and two years ago suffered a broken tibia and fibula, which required two surgeries and extended time in a wheelchair. A year prior to that, Cole suffered a severe concussion, and in 2010 he was diagnosed with Grave’s disease.

Champion-Athletes-With-Diabetes-Medal

But the toughest blow came just before Thanksgiving five years ago. I’ll let his Mom, Kris, take it from here. This is from the e-mail she sent me:

“On that day he was anxious to go work out with his team. He had been working so hard he was losing weight ALOT of weight (that he didn’t have to lose), and those workouts had him needing to stay hydrated…or so he thought. I had called the doctor to make an appt. for after the holiday, but they insisted I bring Cole in immediately. Once there they efficiently ran a blood test before we even got in to see the doctor. While he was begging me to get him to practice on time, I heard the doctor outside the door telling the nurse to call Children’s hospital to let them know she was sending a new diabetic in immediately…. Our Type 1 journey had begun.

Thanksgiving morning Cole’s body was dealing with a drop from over 800 to 40 in a few hours. He was barely responsive and we of course were quite concerned. His father and I sat in the hospital family room eating leftover turkey wondering what was in store. Very late that night he started to be a bit more alert and he started mentally processing his diagnosis…the fears, the questions, the tears poured out.

The next morning he woke up early-, pale , so very thin and still sporting an IV, but with a very determined question for his nurse. “What do I have to do to get out of here? I have a game tonight? They explained that he had to learn how to keep himself safe, with meetings with the dietician, pharmacy, family counselor and diabetes educator, a process that takes two days. He told them he needed to eat and take a shower but that he would learn it all and they needed to release him in time to get to his game.

I’ve don’t think I’ve ever been so proud AND so scared as watching him play that game just hours after he got released. He did his first test on his own prior to that game on the side of the field. Afterward when we talked about the game he said he thought he did ok considering he saw three balls, but he figured he would just aim for the center one.

There have been many games since, with highs and lows and wins and losses. He has learned to read his body and adjust for his activity and all the effects of the other medical challenges and the way they have complicated his numbers. He has learned to advocate for himself with coaches, refs and others. He has stayed positive and focused on his training And he has achieved his goal of having others see him as a strong athlete and valuable member of the team. My hope is that this his senior year his team finishes strong and maybe goes to state….but regardless of their standing at the end of the season, I think Cole deserves an award for being an athlete with diabetes.”

How’s that for inspiring? Who can’t get excited about that kind of determination? Cole’s team finished with 13 wins and just one loss on the season, which included a win against the 2nd ranked team in the state. In his first-ever season as a defender, Cole made all-conference honorable mention. Take that, diabetes!
 
 
So… what about you? How great would it be for you to say you earned the same medal as Cole? I encourage you to nominate yourself or the special Athlete With Diabetes in your life today.

Four simple things will mint your medal, and only the first three count:

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. ‘Nuf said.

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.

If it’s a big deal to you, it’s definitely a big deal to me too. I want to support you, or support the Athlete With Diabetes in your life. Send an e-mail for your award today.
 
 
 

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.
 
 
 

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