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.


Posted in Uncategorized | Leave a comment

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.

Posted in about diabetes, diabetes advocacy, diabetes-related language | Tagged , , | Leave a comment

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).

Posted in about diabetes, diabetes advocacy, diabetes care, diabetes products | Tagged , , | Leave a comment

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!

Posted in diabetes advocacy, diabetes-related language | Tagged , , , , , | Leave a comment

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.

Posted in about diabetes, exercise and diabetes | Tagged , , , , | Leave a comment

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.

Posted in diabetes advocacy, diabetes motivation | Tagged , | Leave a comment

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.

Posted in about diabetes, diabetes advocacy, diabetes medication | Tagged , , , | Leave a comment

FDA looks #BeyondA1C

When I was at the recent #AADE16 meeting, I heard and read a lot about looking at outcomes other than A1C. This was the first time I actually heard someone mention “patient-driven outcomes.” Thinking about things that matter to people with diabetes – what a concept! Things like quality of life, hypoglycemia, and time in target (blood glucose range) I can get behind.

On August 29th the FDA is holding a day-long workshop where they will listen to public comment on what matters to people with diabetes. What kinds of outcomes do we want them to look at in order to develop drugs/technology that would be helpful to us?

From the workshop description:

The ultimate purpose of identifying and qualifying these outcomes for regulatory purposes would be to continue to support the development of novel therapies that directly address the needs of diabetes patients living with the disease. There will be an opportunity for questions and answers following each presentation.

And here is the complete info on the workshop – you can join virtually if you won’t be in Maryland next Monday. Sign up by August 26th. And diaTribe is asking us to submit videos with our ideas for outcomes beyond A1C.

Here’s mine. As a diabetes professional, I believe that developing or perfecting diabetes drugs that could limit or eradicate hypoglycemia would be incredibly beneficial. Many people purposely run high – and risk complications – because they fear hypoglycemia. I have met people with post-traumatic stress disorder (PTSD) related to severe hypoglycemia events that occurred during childhood. Additionally, signs and symptoms of hypoglycemia change over time, and risk of severe lows and hypoglycemia unawareness increases. Personally, I find hypoglycemia incredibly annoying. It interferes with my ability to get things done or to sleep through the night. It’s frustrating and a waste of time.

Posted in about diabetes, diabetes advocacy, diabetes care | Tagged , , , , | Leave a comment

What diabetes educators do…

I recently returned from the American Association of Diabetes Educators’ Annual Meeting. There we shared ideas, learned new concepts, met new people, grew, expanded our understanding, viewed new products, and more. Being at a national meeting always feels larger than life.

Then today, back in rural Colorado, I drove 30 minutes into the countryside to teach a child care provider how to take care of a 2-year-old who has type 1 diabetes and will be starting at her day care next week.

I can’t help but think that what we do – from the huge to the miniscule – is awesome. I love being a diabetes educator.

PS I also love child care providers who are willing to watch (tiny!) kids with diabetes. You rock!!

Posted in about diabetes, diabetes advocacy, diabetes care, diabetes education | Tagged , , | 2 Comments

Diabetes devices are great, but…

Be sure that you are comfortable, confident, and knowledgeable about how to manage diabetes without the fancy gadgets and gizmos in the event that technology fails. And technology does fail.

Calculating doses (by hand!), not knowing blood glucose levels, counting carbs – all this might be necessary when devices don’t work. It’s kind of like paper charting in a hospital. Once hospitals convert to computer charting they like to forget that paper charting ever happened (many current health professions students have never charted with pen and paper). But when the computer system crashes, paper charting it is.

Same thing when there’s a power outage in a hospital. Back up generators can help a lot, and so can a back up diabetes plan. Just in case you didn’t already have enough to think about, add being prepared for anything at all times to your list.

Posted in about diabetes, diabetes care | Tagged , , | Leave a comment