Showing up every day

WDD-logo-date-EN-2048pxToday is just another day with diabetes for those of us living with it. It happens to also be World Diabetes Day, so many are making a big deal today.

Not just today, but every day we show up, wake up, keep breathing, keep thinking about every little that affects diabetes and every little thing that is affected by diabetes.

Every day we poke fingers, take medications/injections, count carbs, exercise, treat lows, treat highs, think, think, think.

Today I’m thinking about those who don’t have access to insulin and how we can help them. Today I’m thinking about the people who don’t even know they have diabetes yet (and they’ve already had it for years). Today I’m thinking about the people who feel the stigma of diabetes, or are hiding their diabetes, or are ashamed of their diabetes.

Today I’m hoping we can move past all of this. Today I’m looking forward to the time when there’s no longer a World Diabetes Day.

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Jane’s answer to the high price of insulin

My dad recently asked me about the price of insulin. He said he had read something about how expensive insulin is and was concerned about it. I don’t talk about diabetes with my family very often. They ask an occasional question, I answer, and we move on. Diabetes is never our focus.

But dad’s question got me thinking. I’m incredibly fortunate to have good insurance coverage, while many others do not. Today I was reading an article about the price of insulin and how it has gone up hundreds of percent over the last several years.

How is this possibly ok? Another example of lack of cohesion in health care. My proposed solution: get key players from health insurance, pharma, healthcare, consumers/patients, and government together at one table. Let them talk it out until they figure out the best way to manage costs in health care. They can use lifelines – call or video conference someone into the room who may know more or have a better perspective.

I picture it kind of like choosing the next pope. Maybe smoke is coming out of the chimney. Maybe these people don’t emerge for weeks (food can be delivered…), but they get it done. They consider the best interest of everyone involved, act with transparency, cooperation and good faith, and figure it out.

I believe it could happen.

That’s all.

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National Day of Action for Diabetes

Today is as good a day as any to take action for diabetes. It also happens to be the inaugural National Day of Action for diabetes, and there are so many things you can do!

  • check your BG before and after exercising and participate in the “big blue test”
  • visit the ADA’s website and click on “take action”
  • make an appointment to see a diabetes educator and learn some tools for managing effectively
  • talk to a loved one who is at risk for diabetes about getting checked
  • sign up for an exercise program…with a friend!
  • try a new, healthy recipe
  • join an advocacy group or effort
  • volunteer to participate in diabetes research
  • give yourself a pat on the back and enjoy some downtime

Take action in whatever way works best for you. Enjoy!

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The College Diabetes Network (CDN)

I wrote about a college fair and a college recruiter last week, so I guess it makes sense to continue the theme and write about diabetes in college this week.

If you know someone with diabetes who is finishing high school and heading to college, be sure to let them know about CDN. This non-profit organization was founded in 2009 by a student who didn’t want to feel alone and reached out to others on campus with diabetes. Now CDN is a thriving organization with chapters on college and universities all over the country. Their logo is …for the highs and lows of college life. How perfect is that??

CDN provides support to college students with diabetes, including answers to common questions, online resources, get-togethers with peers on campus, and pamphlets for students and parents. The Off to College booklet offers all sorts of suggestions for the everyday things that come up that a soon-to-be college student or parent of a college student may not even anticipate!

Check out CDN’s website for more information or to help start a chapter today.

 

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More Than Numbers

Yesterday my son and I went to a College Fair. It was quite an event – more than 250 colleges in attendance and some interesting seminars. It was our first venture into the college search phase of life.

We attended a seminar at which a recruiter from Duke University said the following (regarding what they look for when considering applicants): You are not just a set of numbers; you are a whole person.

Boy, that sounded familiar…Oh yea! We say that about people with diabetes. We are not just numbers; we are people. In fact, this came up at a recent #DSMA live event at #AADE16 in San Diego. We were having a lively discussion about diabetes, language, social media and more, and one participant noted that we are not our A1C. Interestingly enough, someone tweeted in that yes, we are, in fact, our A1Cs, are we not?

I admit I was pretty shocked, yet in retrospect I can see why someone might think that. A1Cs are certainly part of us – they represent the glucose attached to our blood cells, after all. But I think the more important message is that our A1Cs don’t define us. Numbers don’t determine our worth or our success in life. Some people maintain an A1C in the 5s, while others work incredibly hard at managing diabetes and have an A1C above 7%.

Sometimes I get a little frustrated when I see/hear others parts of the universe “getting it” and not those who are in diabetes. Why would a college recruiter understand that people are more than numbers before diabetes professionals, or even people living with diabetes? Why have people working in other diseases, conditions, or situations figured out that it’s not ok to stigmatize and stereotype people, yet not in diabetes?

It’s time to take a closer look. It’s time to validate people with diabetes and the work they do every day. It’s time to acknowledge the emotional side of diabetes so things like not calling us numbers (or names, for that matter) mean something. It’s time.

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Tools for Diabetes Management

I know it’s true for me, and I’ve noticed it in others…those of us with diabetes can get stuck in a rut. We like what we like. I once read “I would die without my pump” and I thought, “That’s awful! What if your pump malfunctioned?” But the more I thought about it, I realized that I would be lost without my blood glucose meter. I’ve been checking blood glucose levels for over 30 years and I honestly don’t know how I would manage without that information. For others that’s a pump or a CGM or a certain medication.

So I’m adjusting my response to the “I would die without…” quote. Now I’m saying I get it! And I think it’s important to be informed about how to manage without it. I also think there are lots of tools out there. For those with type 1 diabetes that includes pens, pumps, injections, carb counting, continuous glucose monitoring, inhaled insulin, and hopefully soon there will be more options. For those with type 2 diabetes there are multiple different medications – all address lowering blood glucose levels from different angles.

Learn about the various options for managing diabetes. Meet with a provider who is open-minded, listens to your ideas and needs, helps you build on your strengths and encourages you to do what works best for you. Use the tools you love, and know how to manage without them (just in case).

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Compliance vs. Contribution

I am often inspired by things I read. This was one (thanks, Seth Godin, as usual). I love the idea of substituting “contribution” for that yucky word “compliance.” It really works in diabetes because compliance means doing what someone else wants, which simply doesn’t fit when managing a lifelong disease like diabetes. The person living with diabetes is the one who makes decisions and takes action to manage it daily. Therefore, we are talking about their contribution to diabetes management, rather than their compliance with someone else’s demands/rules/expectations.

I would take it a step further and suggest that “engagement” might be another replacement for “compliance.” When someone is truly partnering with their health care providers, when they are in agreement with the plan and taking action toward it, they may actually be doing more than making a contribution. They are engaged. And “engaged” is so much more more empowering and strengths-based than “compliance.” I can feel my energy level fall when I hear “compliance,” whereas it rises when I hear “engage.”

Words matter!

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From Hell to Habit

I never used to consider myself a hiker. It wasn’t that I didn’t like hiking; I just didn’t do it. And then about five years ago I decided to try a hike (one of several in our local community). It took me 45 minutes to get to the first “bend” – I had no idea how much further it was to the top. In fact, I didn’t get all the way to the top until several months later when I asked a friend to join me (it was spring and I was nervous about meeting a mountain lion, so thought better to have a hiking partner). We hiked all the way to the top and I was pretty proud!

Somewhere along the line I started making that hike every Friday morning. A few friends joined, and now we have a regular “hiking club.” If I’m in town on a Friday, I hike. It has definitely become a habit (and while it’s still a challenge, it’s MUCH easier than those first several times).

When I read a tweet today about making what we learn about diabetes and exercise part of our permanent lifestyle, I thought about what was once hellish for me and now is habit. And an enjoyable one at that – thanks to the company of friends and my muscles getting somewhat used to the task.

My suggestions for incorporating exercise into lifestyle: do it gradually; do something you might enjoy down the line; do it with people you enjoy; stick with it (at least long enough to give it a good chance of sticking). You never know – five years later you might be lost without it.

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Diabetes Achievements

Sixteen years ago today, my son was born. It’s a big deal for a kid to turn 16, especially because they get to start driving! It’s a big deal for me, because pregnancy was the time that I worked the hardest on diabetes I have ever worked. If someone asked me what I’m most proud of, it would be having two babies and the work it took to get them on this planet.

Some people who have diabetes swim in the Olympics, or play professional sports, or perform on stage or in movies. It’s always impressive to hear about those inspiring people. The rest of us work day in and day out in our regular lives, managing this thing.

A couple weeks ago I took part in two live Twitter chats. They both were happening right smack in the middle of dinner time (at least where I live). These days I have kids in high school and high school sports, so meal time is limited. Anyway, participating in two live Twitter chats and preparing dinner (in different rooms) reminded me of juggling all that it takes to live well with diabetes.

Today I’m incredibly grateful for my son, who is 16 years old and awesome. I’m grateful for the work I did all those years ago and for the work I keep doing so I can be around for all his future milestones. That feels like an achievement to me.

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Time to eradicate hypoglycemia

I found out yesterday that on August 18th we lost a bright, energetic, amazing young man – 22 years old – because of hypoglycemia.

Today I am attending the #beyondA1C Diabetes Outcome Measures FDA workshop. I mentioned last week that my response to the call for emails and videos for this workshop was geared toward the need to prevent/eradicate hypoglycemia. Now I feel even stronger about this. People die from hypoglycemia. People who could have lived full, productive lives with diabetes have their lives cut short because of hypoglycemia. It’s time to change this.

Thank you, FDA, for listening to the people who live diabetes every day, and those who work with us. We appreciate the dialogue.

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