Tag Archives: diabetes

Join the Champion Athletes of 2017.

I was going to start this off by talking about Spring coming up in the USA. But hey, this is the World Wide Web anyway, so I need to fully recognize (recognise?) that Autumn is also on the way.

Regardless, it’s a great time to consider that athletic event you’ve been working toward, or accomplished. Maybe you’ve been committed to a better fitness routine for a while now. Feeling like a Champion? That’s where I’m going with this. Here’s my reminder:

If you, or someone you love, is living with diabetes and working toward or accomplishing an athletic goal, I have a brand spanking new medal for you.

We’ve given over 80 of these away over the past 3+ years, to people in places as close to me as Virginia and Pennsylvania, and places as far away as New Zealand and India.

I am always so happy to read about someone overcoming their fears, gaining confidence, and giving the extra effort to reach that achievement they’ve been working toward. Whether it’s your first run, a milestone bike ride, or literally a mountain you’ve always wanted to climb, your effort should be rewarded.

Here, briefly, are the rules:

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”. We have medal winners who are runners, ballroom dancers, swimmers, motocross riders, and curlers. 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.

If you meet the above criteria, you qualify for a medal.

So… as you consider signing up for that event this year… as you consider getting those 10,000 steps in every day, or hopping on the bike in the evening, think about what it means. Think about how your efforts are making a difference for you and your loved ones. Consider how great it feels to get a hard won victory over diabetes.

Then go out and make history. Be a Champion Athlete With Diabetes.

Your medal is waiting.

2017 JDRF #TypeOneNation #DC Summit.

I have to admit… when I headed to my fifth JDRF Research Summit in Bethesda, Maryland on Saturday, I just didn’t know if it was going to be worth it. Would I see or hear anything new or different? And how, after writing about it for four years in a row… how in the world would I find a way to write about it again? I mean, I couldn’t even think of an interesting headline to write this time.

But this JDRF event was different. There were several moments that were different from the other four years of this gathering. The TypeOneNation summit has grown up, in more ways than one. It has evolved somewhat. Let me share:

Our day began with several breakout sessions, where kids, teens, and adults went to separate rooms and discussed things that are important to them. Our adult T1D group included a panel comprised of medical professionals, a lawyer, an expert in exercise and living with diabetes, and JDRF’s VP of Advocacy and Policy. It was a full hour-long question and answer session on all of these subjects. Maybe it was familiarity, or maybe it was because it’s been on my mind a lot, but I asked the first question, and for fifteen minutes or so, we had a lively advocacy discussion. Eventually, we did cover all the subjects mentioned above.

But the really interesting thing to me was that there were, by my count, 40 to 50 adults in the room. A year ago, our adult breakout group was maybe 15 to 20. Two years earlier, I think I met one or two adults with diabetes the entire day. In my humble opinion, JDRF still has a long way to go in engaging adults in ways that will help both them and the organization, but there’s no question– JDRF is growing up. Compared to last year’s summit and the year before? Big, positive difference.

Once we were all gathered in the big room for the day, Aaron Kowalski got into where JDRF is on a number of research initiatives that it funds. Aaron is as good as anyone at giving people a comprehensive rundown on the status of artificial pancreas research, who has skin in the game, and where each group is in terms of product and potential approval. I know there were some returnees in attendance, and for those who were only beginning to hear about artificial pancreas a few years ago, Aaron’s talk was a great update.

Continuing on the research front, Dr. Juan Dominguez-Bendala from Diabetes Research Institute in Miami was able to fill us in on where they are with stem cell therapy development. It was very detailed, so I can’t really give it justice here. To be honest, I’m not really jazzed about this kind of research, because I can’t quite see where it will be practical for a long, long time. But what I did like about Dr. Dominguez-Bendala’s presentation was his willingness to address the limitations of stem cell therapy, including ViaCyte, that exist today. I think that helped me recognize that while there’s a lot left to do, DRI has come an awfully long way since they began this kind of research.

And for the first time, the psychosocial impact of living with Type 1 Diabetes was discussed. This presentation was made by three pediatric psychologists, so the discussion was entirely kid-based. There was no patient perspective provided, and though I don’t know how they would have worked that out, I think it would have been great. Also, there were definitely questions from adults looking for resources to help them too. I made sure I followed up with those people individually to let them know about the Diabetes UnConference (Hello Doris and Jenny!).

Finally, it was Brian Herrick with a light, and at times, funny presentation about 25 years of living with Type 1, and his experiences going through artificial pancreas clinical trials, which was a great way to wrap up. After another Q&A session with all of the presenters, the summit was complete, save for an adults-only happy hour at the hotel next door. The main part of the program was over earlier this time, which likely resulted in less glazed over eyes late in the afternoon. Finishing on a lighter note helped everyone feel good as they headed home.

I should also mention that the best part of the day was getting to meet new friends, and spending time with Diabetes UnConference alumni Leyla and Terri.

Leyla is one of the coordinators of the March for Health in Washington, D.C. on April 1st. Time with them was worth the trip in and of itself.

So… while I began my day wondering what would be different, and how I would cover it, as you can see, there was plenty that was noteworthy this time. All in all, a great way to spend a Saturday.

If you are living in the USA, chances are there is a TypeOneNation event near you. To find out more, go to jdrfsummit.org and find out where your free summit will take place.

Nobody ever died from Obamacare.

This week, Republicans in the House of Representatives rolled out what they had been trying to hide from the public for about a week: the “repeal and replace” legislation for healthcare.

Known as The American Health Care Act, the bill covers many things. In time-honored Republican tradition, it wants to eliminate the right to coverage in exchange for tax breaks. And that’s just the beginning.

What’s surprising to me though, is how much resistance to this legislation has materialized from nearly everywhere, including from conservatives. And I’m left wondering: why is the response to this different?

“We want a system that is affordable and accessible.”
Tom Price, Health and Human Services Secretary

I could write 10,000 words on how this bill would make health care unaffordable and inaccessible for millions who depend on Obamacare plans right now. Not to mention the incredible balloon to the federal deficit this bill would undoubtedly unleash.

But that’s not all. The bill also wants to reduce Medicaid expansion, putting a lot of the burden on individual states, which creates an atmosphere where health care could be more affordable in one state and less affordable across the state line; and mostly, on the people most likely to be hurt by that—the poor. These are not the people many decry as just taking a handout while providing nothing in return. Trust me: you don’t want to be a Medicaid recipient. But it’s better than nothing.

The bill also defunds Planned Parenthood. Now, you may not like Planned Parenthood, and I won’t try to change your mind on that, but if you want to put them out of business, you’ll have to find another way for women to get cancer screenings. Or women will die who otherwise don’t have to.

That’s a lot of what I think is missing from this debate. All I’m hearing is political spin about choice and tax incentives. Nobody seems to be talking about the people who will be bankrupted or killed as a result of the havoc that this legislation would enact. I’m not stretching to say that. Even Republican lawmakers admit that it will cost more.

“So rather than getting that new iPhone that they just love and want to go spend hundreds of dollars on that, maybe they should invest in their own health care. They’ve got to make those decisions themselves.”
Rep. Jason Chaffetz, R-Utah

Well, representative Chaffetz, I do not have an iPhone. I do know many people who have iPhones because it’s the only mobile platform that will allow them to see real time blood glucose data on their children living with diabetes. You know, the disease they did not “make a choice” to get. Many of these parents are Republican, many are not. Their children still have diabetes.

He’s tried to walk that statement back after some initial uproar over its insensitivity, but even the walkback didn’t sound like much of a mea culpa. Overall, it still sounds like he’s repeating the stupid sound bites he’s been fed by his friends over drinks at the country club.

“If we did nothing, the law would collapse and leave everybody without affordable healthcare. We are doing an act of mercy by repealing this law and replacing it with patient-centered healthcare reforms.”
Rep. Paul Ryan, R-Wisconsin, Speaker of the House of Representatives

Failing after seven years. Seven. Not six months. Not a year or two. Seven. Years.

I know he and his Republican colleagues in congress have been trying to kill this law for seven years, and with all the power in the U.S. government at their disposal, they still can’t get it done. Why?

People and patients, conservative and liberal, can see right through the arguments. Not because of their political leanings. What’s missing here is the acknowledgement that both Republicans and Democrats have children, spouses, and parents who need and deserve care. They all have the same needs, and the number one need of all is to keep their loved ones alive. The number two priority is to keep them as healthy as possible without going broke.

People don’t need detailed actuarial analysis. They don’t need political spin. They need to answer three questions: Will I keep my coverage? Will it at least cover the same things that are covered today? Will it cost more?

So far, the answers to those three questions is Maybe, No, and Yes.

People understand that Obamacare isn’t the best thing ever. Many would like to chuck Obamacare into the river and start over with something new. Many are eager for that. But… they’re going to take care of themselves and their loved ones first. The reality is, if you can’t at least give people the same access to care without it costing thousands of dollars more, they’d rather have the devil they do know as opposed to the devil they don’t.

Bottom line: the proposed legislation needs to be at least as good as the legislation it wants to eliminate. Otherwise, if you’re one of the 20 million with coverage through Obamacare, or one of the tens of millions with a loved one being helped through Obamacare, why would you want a change? Don’t forget, there are Republican as well as Democrat voters in this group. By and large, the message I’m hearing from both sides is:

It’s not Repeal and Replace. It’s Repeal and Deny.

It’s not Repeal and Replace. It’s Repeal and Bankrupt.

It’s not Repeal and Replace. It’s Repeal and Kill.

No one ever died from Obamacare. As the debate on health care rages, let’s keep the focus right where it belongs. On American Lives.

Sunny, Happy Days.

The weather in my part of the world got into the 70s last week. In February, when the average high reaches around 40-45 degrees Fahrenheit. Seven years ago around this time, we were under almost four feet of snow. This year, daffodils are blooming a month early, and tulips are beginning to push to the surface.
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Despite this being evidence of global warming, I was actually glad to see sunshine and warm temperatures last week. I used the respite from winter to clean up the yard a little, play with the dog, and take on a couple of outside tasks around the house. Why?

Because that’s what you do when you have the opportunity. Days like these don’t come along often. I knew that if I just sat inside somewhere (though I did go to work), I would regret not taking advantage of the gift I was given. And when the weather turned cold again, as it did this week, the return of winter would feel twice as bad.

That’s true with my diabetes too. When I have a good diabetes day, everything is a little easier. Only a little sometimes, but easier. And happier. When that happens, I want to enjoy what I can, while I can enjoy it, without worrying about the bad diabetes day (like yesterday) that might show up at any time.

I’ve probably mentioned this before, but if I haven’t, here’s a little backstory: When I was younger, say, 18 or so, even though diabetes wasn’t a part of my life yet, I had a lot of the same attitude. Enjoy the good times, don’t stress over the bad times and what might happen.

Then I spent my 30s and part of my 40s working like a dog, while also living with diabetes. I didn’t take a lot of time off. I was afraid to spend a cent. Even in the good times, I was afraid of what might happen if I didn’t worry about everything all the time. When I did try to let go a bit, I felt like I was going to be punished for not keeping a properly pessimistic viewpoint. I didn’t smile or laugh for a long time.

Without realizing it, I started eating poorly, I drank too much, and I seemed to get sick easily. My A1cs were horrible, and I didn’t know what to do to lower them. I wasn’t sure if I was depressed, but I knew I was really unhappy. I don’t want to suggest I was a hot mess; a lot of people have it a lot worse than I did. I think I had this view of how life should be for me, and what I was living wasn’t it. When you stare at that right in the face, it can really affect you. Too many expectations. Not enough self love.

Eventually, I was able to climb out of the doldrums I was in, and you know what? I found that one of my outlooks from when I was 18 was still true today. I can’t let the parade pass me by. I need to live, not necessarily in the moment all the time, but in the good moments all the time.

The bad times will come. And they will go. That’s what over a half century of living has taught me. But so do the good times.

I spoke a lot during those dark days of wanting to get my enthusiasm back. Even though I’m not the same person I was then, I wanted to find the joy I felt in my younger years.

When today features sunshine and warmth, I need to revel in it before today becomes yesterday. I suggest you do the same. Why? Because you totally deserve the joy. Not at someone else’s expense, like some of those people in Washington. You deserve a little fun and irreverence and unbridled happiness. A day in the sun. Feel the warmth.

Getting Acquainted.

Now that I’m officially several weeks into my life on Dexcom, I just wanted to scribble down some notes for the purpose of keeping a record on how it’s been going so far.
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This is mostly stream of consciousness, but as usual, my stream of consciousness still contains several words. Hopefully, they are ones you’ll want to read. Here are eight observations on the early going with Dexcom.

1. I know that I have FDA approval to bolus based on my Dexcom G5 readings, but I haven’t done it yet. Okay, I may have pushed a one unit correction bolus through once or twice without doing a fingerstick, but that’s all. I’m not blousing for a meal based on my display. I’m confident in my Dexcom– I’m just not confident that it will be perfect 100 percent of the time, every single day. I would hate to over- or under-bolus based on the one time it’s off by a bit. I hate to think of the result of doing that. So, no dice to the bolus-off-Dex so far.

2. I’ve got to remember to order some Skin Tac or Opsite Flexfix or something to hold down my sensor, and soon. The peeling is real, folks.

3. At the Diabetes UnConference, I checked in with a couple of people to get their pointers on doing an upper arm insertion. I also looked at Daniele Hargenrader’s recent video showing her doing this. Then I did it. Then I loved it. It’s mostly out of the way, and the sensor works pretty good there. And the accuracy has been fantastic. Win-win-win.

4. I’m not interested in using my thigh or forearm for sensor placement. I use my thigh a lot for insulin pump infusion sites, and I’m guessing that using my forearm would be painful. This outlook is subject to change, as I should be from time to time. Also, I may be going back to using my midsection for a while anyway. More about that at another time.

5. Based on what I’m seeing up to now, it looks like the basal rate settings on my insulin pump are, frankly, stellar. Whether I’m high or low (you’re welcome Janelle Monae), once the peaks level out, if I don’t touch my pump, the line on my graph is pretty flat. I’m a little shocked, but happy that my endocrinologist and I were able to work this out without the benefit of a CGM to guide us.
dexcom100
6. I have avoided the newbie temptation to check my CGM graph every two minutes. I think that’s because of my Dexcom experience during clinical trials. Of course, not checking the receiver all the time means I’ve made the mistake of putting it on the table and walking out of the room every so often. I never said I was perfect.

7. That said, can I just say how much I really hate the fact that I still have to look at a pager-sized display to get my readings? I’m not buying the “We’re working on an Android solution” anymore. You’re not… just admit it. If I’m wrong about that, I’ll be the happiest guy around who ever had to eat his own words, and I will gladly eat those words in this very space.

8. Like anything, when things go well, you tend to see something in a very positive light. That’s where I am now. At the beginning, I had a failed transmitter which also cost me a few sensors, and that was extremely frustrating. I realize that how I use my CGM, and how I react to various things affecting my use of my CGM, may very well change over time. But I hope things remain positive. Because for the last couple of weeks, it hasn’t been a big problem to deal with, and that’s the only way I’m going to buy into the notion of wearing my Dexcom every single day.

Those are my initial observations. I wonder how I will feel about my CGM in a year? Only time will tell. The goal is to make it to another year and find out.

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