Monthly Archives: October 2018

I want a reset.

I want a reset. Okay, maybe a reset isn’t possible. But I’d like to think about getting a reset on a lot of my life.
 
 
I’d like a reset on my youth. I got to do a lot of things when I was younger. I had a lot of fantastic experiences. But I also wasted a lot of my efforts on things that didn’t provide much value to my life, or to anyone else’s for that matter. I spent a lot of angst over things that I’m embarrassed to say I spent a lot of angst over.

I’d like a reset on my health. My diabetes will be hitting 28 in a few months, and if it’s all the same to you, I would rather not be living with it anymore. Same goes for high blood pressure and an annoying little autoimmune skin condition that frustrates me to no end.

I’d like a reset on health care in America. A reset on the idea of for-profit care that incentivizes caring for those with the least need for care, at the expense of those most vulnerable. I’d like a big reset on that.

How about a reset on choice? I’d like to have a reset on the idea of what I, as a person with diabetes, is allowed to choose in terms of drugs, therapy, and devices so I can live the best, longest life possible with this condition.

I’d like a reset on price for all of the above. That’s a story for a different day. Moving on…

A reset on attitudes from people who choose blame over empathy would be helpful. That’s true of all of us, I think. I’d like to think that with the exception of the frightful white nationalist movement in the USA, those attitudes are changing, even though the pace of change is slower than I would like.

Finally, I think it’s okay to consider a reset on my own commitment to kindness and empathy toward everyone. Everyone thinks they treat others with the respect and dignity they deserve. Damn few of us actually do. Regardless of where I fall on that spectrum, I always want to be better, kinder, more respectful. What’s wrong with that?
 
 
What about you? What kind of reset would you like to see incorporated into your life? What would you like to see change about health care? What would you like to change about yourself? How can we, together, help people be happier, more supported, less fearful, not judged, healthier?

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Reconciling Superlatives

You know, I kinda hate the idea of writing about what someone else wrote. The idea is theirs originally, and if I write about it too, then I feel like I stole their idea.

That said, I hope you will permit me this one deviation from that notion. Because I read a blog post at Diabetogenic this week titled The Weight, and I’m having a tough time reconciling what I think was a well thought out statement, with my own feelings on the subject. If you haven’t, you should probably read that first before continuing here.
 
 
I’ve never met a single diabetes advocate who considered themselves a good advocate. Some won’t consider themselves advocates at all. I’ve never met a good diabetes writer who considered themselves a good writer either. Yet… I consider those people good advocates. I consider some people good, or even great writers.

When I notice that someone hit a milestone in their life with diabetes, I want to congratulate them. I want them to know that someone recognizes how hard it is to live day after day with this condition. I recognize that sometimes staying alive requires at least occasional moments of extreme bravery and conviction.

I’ve referred to PWDs as brave souls. I’ve referred to PWDs as incredible and amazing. Heck, I hand out medals that say “Champion Athlete With Diabetes” on them.

I like making people feel better by extoling their accomplishments in “syrupy superlatives“, to borrow Renza’s expression.

Still, she has a very valid point. We are just doing what we need to do to make it another day, hopefully giving ourselves a better chance at a long-lasting (and long-living) legacy.

I can understand why someone would want to be complimented for something other than their diabetes. Why wouldn’t someone want to hear their friend tell them their t-shirt is cool, or they’re a great parent?

So I’m in a bit of a conundrum. How do I reconcile my strong desire to make people feel good about their life with diabetes, while not making it about the diabetes?

Like a lot of other things, this will require some thought, and perhaps a shift in how I interact with other People With Diabetes. That’s not a bad thing.

I’m not afraid to take a look at myself, and whether I’m doing someone a service by complimenting them about their diabetes, or just making them uncomfortable.

For the record, I’m grateful for diabetes bloggers who give me something meaningful to think about now and then. I’m okay with being challenged about how I communicate with others.

I just want to be worthy of the challenge.

Friends for Life Falls Church: A weekend well spent.

The last conference of the year (for me, anyway) is complete. Last weekend marked another terrific Friends for Life event in Falls Church, Virginia.

I went into this one not having a pre-defined role (i.e., not volunteering), which was nice because I could attend sessions and catch up on things I didn’t really know much about, or didn’t know enough about.

That included learning more about DIY artificial pancreas options from OpenAPS guru Dana Lewis. More on that later.

There was an opening keynote, presented by Stewart Perry and George Huntley, who just like during the DPAC Champions Policy Training Meeting a few weeks ago, talked about the various forces behind why insulin is so crazy expensive here in the USA. Everyone was on the edge of their seat.

The bulk of the sessions took place on Saturday, including three super DPAC-led sessions: one on current Advocacy Hot Topics, one on Storytelling with Facts, and one on State Advocacy.

The hot topics sessions (tag-teamed by Christel Marchand Aprigliano and Leyla Mansour-Cole) included a recap of some actual wins from this year (CGM data on smartphones for Medicare recipients), and advocacy items to keep our eyes on in the coming year. It looks like 2019 will include focus on a comprehensive vision bill for PWDs, and the re-ask on H.R. 5768 and S.B. 3366, which I wrote about earlier.

After hot topics, Christel and Leyla delivered an interactive session called Storytelling with Facts, which is focused on how to bring your own story into the conversation when advocating for an issue before elected officials and policy makers. At the end, we used what we learned to craft a pitch and deliver it to others in attendance. It’s a great session for learning exactly what to say and how to say it, and some of the pitches were absolutely stellar.

I missed most of the DPAC Champions State Edition with Leyla, though I was able to pop in at the end and add my two cents for dipping your toe in the advocacy waters at the state level. In some states, it’s super important.

The first part of that time I was in a different session, led by Leigh Davis Fickling, who I had read a lot about, but never seen in person. It was titled Your Legal Rights as a Person With Type 1, and in it, she provided a wealth of information on what rights a person like me has and doesn’t have, at the primary school level, at college, in the workforce, and more.

Some of what was in the session I knew, but had honestly forgotten. For that reason, it was a good refresher. But I also learned a lot that was new to me too. Leigh Davis Fickling knows what she’s talking about, and I was glad I stopped in for this one.

And that brings me to Sunday, where there were two sessions featuring Dana Lewis. The first was What You Should Know About DIY Closed Looping, and the second was a free flowing discussion on looping including Dana and other attendees who are actually looping themselves. In both of these, people in the room who are not looping (like me) were able to have all their questions answered by experts in the field (hint: the experts are the ones actually doing it).

Dana Lewis is another person who I had not met or seen speak before, though many had written about her and told me how great her presentation is. I was not disappointed. For more on her important work, go to
OpenAps.org

The conference ended with a keynote from Ed Damiano, giving an update on the iLet, or Bionic Pancreas, that he and his team are working on in Boston.

As usual, the weekend included adults and families, newbies and returnees, lots of hellos and goodbyes, laughter and tears. I’m grateful to the Children With Diabetes staff and volunteers for putting together a weekend like this and bringing it so close to home. I don’t usually talk about this, but the big Friends for Life event in Orlando is a tough sell budget-wise, so I’m really glad I can still get the FFL experience in a more affordable package.

In the end, Friends for Life Falls Church helped me continue learning from advocates and experts, and continue to be inspired by adults and children who bravely live their lives in the face of a chronic condition that never leaves them. A weekend well spent.
 
 
There will be more Friends for Life events: this weekend in Scotland, and the next weekend in Ontario Falls, Canada. In 2019, in addition to the annual conference in Orlando in July, Friends for Life will go to Seattle at the end of March. They will be back to Falls Church in early October next year, back to the UK at the end of October, and back to Niagra Falls in early November. To find out more, go to
ChildrenWithDiabetes.com/activities/

Getting a start on New Year’s Resolutioners

Since we’re a little less than two weeks away from Halloween here in the USA, I guess we can start talking about the holiday season.

That’s not because I consider Halloween to be part of the holiday season. To be honest, I don’t really like Halloween that much.

Most of my adult life, I’ve followed kind of a baseball schedule of fitness and nutrition: start working out a little in January, work out a lot in February, get into decent shape by April, keep up the activity until October. Once October hits, rest and allow myself some leeway when it comes to fitness and nutrition, something that lasts a little later than New Year’s Day (leftovers).

That brings me to October. The beginning of October, I’m still doing pretty well. But we always throw a party on the day our neighborhood hosts its Halloween trick or treating (on the Sunday before Halloween). I make what has now become the traditional Cincinnati Chili recipe, which isn’t always the healthiest thing in the world. Especially if it goes on a hot dog. Throw in a few snack here and there, and before you know it, I’ve started a bad annual habit.

Generally, I work hard all year to stay in shape and keep my weight from ballooning. But inevitably, beginning with Halloween and ending after New Year’s Day, I let myself down.

It doesn’t matter what I’m loading up on, or whether this behavior might have potentially dangerous consequences in the future. It’s simply something I’ve made an effort to curb going forward.

I’m not trying to say No to everything now. I’m just trying to moderate, and this year, I’ll be trying to moderate even more than before. Thanks to increased insulin resistance and lower metabolism (Hello, aging), this becomes more critical for me each year.

The good news is, I’m at a point in my life where I’m not motivated by food in general. Most of the time. But not all the time.

I don’t have a strategy that I employ. I just try to eat less, drink less, and eat less and drink less of the things that make it harder to stay in shape and maintain my weight. I also try to remain active, or increase activity, like walking more or doing more yard work, especially in December. It makes me feel like I’m getting a head start on all the New Year’s Resolutioners (Resolutionists?) out there.

Whatever you want to call it, this will be my second year of doing it. Last year, I really dreaded the idea. Now, I’m not so afraid of it.

It’s not about denial… it’s about adding years onto my life, instead of pounds onto my waistline. Is that a bad way to think about it?

Like these links.

Happy Friday, everyone. I hope you’re wearing blue today to recognize and support everyone living with and affected by diabetes. So in that vein, let me say Happy #BlueFridays!

Now, on to today’s links for your perusal:
 
 
Every so often, I go to this site to read what people write. I may have also written something there once. Sometimes, it’s a real help to have a place to unload, and to read and know you’re not alone. Thanks to Christopher Snider for creating
MyDiabetesSecret.com
 
 
Do you ever find yourself straining to understand or explain terms like average glucose, standard deviation, and coefficient of variation? Want to know more about what you’re looking at in those CGM or meter downloads? Then you’re going to want to keep this article from Adam Brown and Divya Gopisetty at diaTribe handy. Spoiler alert: it includes examples too!
Understanding Average Glucose, Standard Deviation, CV, and Blood Sugar Variability
 
 
I don’t quite know how to explain this story, but it involves sunscreen, moisturizers, pump and CGM placement, and it’s not porn. But, as Kelly Kunik will tell you, the struggle is real.
Diabetes Hardware & The Moisturizer/Sunscreen Chess Game
 
 
I’m always jealous of Renza Scibilia, because she gets to travel to amazing conferences where things like #DOCDay happen, like at the annual EASD conference in Berlin recently. Her mention of the new Diatravellers initiative caught my eye too.
#DOCDAY at EASD2018
 
 
Read anything fun, inspiring, or interesting lately? Please share! In the meantime, enjoy your weekend, and I’ll catch up with you next week.

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