they can DO this–i can LEARN this.

On Sunday, I sat a table in Perkins in Minneapolis with my friends Scott and Heather, engaged in the flow of conversation over grilled cheese sandwiches—the usual flow of topics with a few twists: exercise, coaching (in the life-coaching sense!), and diabetes. In the past, I’ve had conversations with my friend Bethany in which mid-sentence in a Starbucks [or elsewhere] she’s kind of stopped and said “Are you getting this?” to which I just nodded and said “Yep, keep going.”

“It’s just so crazy you know all this stuff about diabetes and you don’t even have it!” She replied.

A few years ago, I found myself surrounded within the Diabetes Online Community [or DOC]. And since then, I’ve learned a lot about what life with diabetes—no matter what type—can look like. Because not everybody with type 1 has the experience as another type 1. Not everyone with type 2 has the same experience as somebody else with type 2. And, mixing elements of both T1 and T2 are those with LADA—or type 1.5, and their stories will look extremely variable, too.

As Scott and Heather discussed Nightscout/CGM in the Cloud (how very smart/techy people with diabetes or caring for people with diabetes have managed to connect their Dexcom continuous glucose monitors through smartphones to upload their glucose data to the cloud, and from there, can load data remotely—ie. a parent can watch their child’s blood sugar levels from their desk while the kid is at school, the data can be streamed to a Pebble smartwatch to allow less-conspicuous access to BG levels, or a variety of other possibilities to allow even more of a safety net than CGM currently provides).

(Graphic source: DiabetesMine)

Scott had given me the CGM in the Cloud tour in August (so I arrived at Dana’s DIYPS talk at Medicine-X I was a bit more clued in than I had been previously!), also over grilled cheese, and while I’d heard about the system over Facebook, it was even cooler to see in person as he slid his Dexcom over and handed me his Pebble to see it first-hand. Dexcom has only recently become available in Canada (both standalone and integrated with the Animas Vibe insulin pump), and I shared this with Heather and Scott… along with the slightly amusing fact that I constantly have Animas Vibe ads on the side of my Facebook page because of all of the diabetes talk that goes on within my Facebook feed.

The reason, though, that I have so many friends with diabetes is perhaps because of diabetes, but more because many people with diabetes care about something much larger than their own story: they care about making the story of others better. I joined a Diabetes Social Media Advocacy (#dsma) chat on Twitter one night several years ago (and several more after that) and people were really enthusiastic about my non-diabetic self joining the conversation because I wanted to learn. The DOC has, in turn, become my support. They were the people who were constantly reaching out when I was in the ER for blood transfusions, or are the ones who reach out when I say my asthma is sucking—just as I do when someone tweets an out-of-range blood sugar, or shoot an iMessage off to a friend just to check in when they’re struggling with their diabetes. They are a big, passionate and loving community, and that is because of the individuals that are a part of it: they see the bigger picture, and they want to make the bigger picture BETTER.

In my day to day life, yes, maybe diabetes is just a passing thought when one of my few local friends quickly checks their blood sugar or takes an injection at lunch—but it’s also knowing enough that I can provide a bit of empathy and humour. One day at dinner, a friend tried to check his blood sugar under the table and I just laughed and said “Hey, I know what you’re doing, it doesn’t bother me if you use the table, you know.” If asthma has taught me one thing, it’s that we all try to be stealthy with our disease management sometimes, and often it’s more for the sake of not being asked questions than it is we truly want to hide what we’re doing—later that night, though, the same friend did text me his BG (we were, after all, at Olive Garden :]), and I hope that my openness can be a layer of support for him if he ever wants it.

In living with any chronic disease, it’s about feeling like you have options (even if, maybe, they are pseudo-options because they are necessary): to choose who you talk to—because I don’t have diabetes, on occasion friends with diabetes will message me because I don’t have diabetes but have a very basic understanding of what they’re talking about; to change up your routine; to use different methods of treatment. Using a continuous glucose monitor is one of those options—because while the information can be extremely helpful, it’s also a constant reminder of where you’re at and can lead to data overload. Same with using an insulin pump for those who are insulin dependent: it increases flexibility in some ways versus injecting insulin, but it also means that 24/7 you are tethered to a small machine or have an insulin pod stuck to your body. Which leads to the choice aspect: my friend Bethany (above) has had T1D for over 30 years. The last time we had lunch, she pulled out an insulin pen and I was like “HEY. Since when are you not pumping?!” (She laughed and was like “Wow, it has awhile since we’ve seen each other, hasn’t it?!”)

Where am I going with all of this?

My friends with diabetes have no choice about having diabetes—they make the choice to do their best, to advocate, to change their world and the worlds of others with diabetes though support, technology innovation, and compassion. Diabetes is 24/7, in a far different nature than asthma is: with diabetes, the same hormone that is provided through injections or pumping, insulin, to save a person’s life can also be lethal—diabetes is a constant balancing act. It is psychologically invasive in a different way than my own chronic disease is. None of us have a choice, but we can learn how to best support one another. If I can provide the kind of support that says “Yes, I want you to be healthy. I want to support you as I can, as a person without diabetes—I’m here to accept where you’re at and listen. I want better things to be available. I care.this is what I want.

Read that last sentence over and simply take out the segment that reads “as a person without diabetes”—shouldn’t this be how we all interact with each other? By learning about where someone is at, and accepting them in that moment?

My friends with diabetes can DO THIS. They can manage their diabetes with the tools they have. And because they can DO this, the ins and outs of life with diabetes, I can certainly LEARN this: a few small lessons about their worlds that hopefully make them feel supported in the way we all want to be. Even if at some times that just looks like a non-diabetes conversation for a break, or having some snacks on hand and waiting out low blood sugars with my friends.

Because that’s the most important part: we are here for each other, because we’re friends.

To my friends with diabetes: Thank you for everything you’ve taught me—I owe you all a hug! :]

guest post! – a matter of parallel badgers

Following my asthma diagnosis, the world of chronic disease took on a new dimension–not only was I living it, but I was now able to resonate with others who were living it too. I’ve found through these interactions that it is only in part that the same diagnosis creates friendships–however, I also have found many, many friendships with others living with a variety of chronic diseases.

Bob is one of those friends, and he is also not the Roomba (my grandma has a Roomba named Bob. Bob fully understands this reference even if nobody else does). He’s always quick with some wit, humour and support, and is one of the many people I was blessed to encounter who is a member of the Diabetes Online Community. We’ve had many discussions about the parallels between different chronic diseases, specifically asthma and type 2 diabetes–I’m happy to have him sharing his thoughts today!

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My name is Bob. I have a blog (www.tminustwo.net) in which I share stories and perspectives from my life with Type 2 diabetes.

It’s been many months since Kerri first invited me to exchange guest posts. I started a draft at that time, but it’s just been kind of cooking on the back (WAY back) of my mental stove. There’s just been something I wanted to say, but I haven’t know quite what it was or just how to say it. (This is not completely unusual for me. I recently published a post that had been in the hopper for over two years.)

Kerri and I have often discussed the parallels between life with diabetes and life with asthma. Recently on Facebook, Kerri made a comment to me on one of those parallels. I offhandedly replied, “Yeah…if there’s a badger clamped onto your butt, it doesn’t make a huge amount of difference what species of badger it is.”

Ah-ha! THAT, my friends, is what I’ve wanted to say. No matter what kind of chronic disease a person has, it’s an enormous pain in the butt. And while chronic diseases have important differences in the nature of the impact on the folks dealing with them and what managing the condition involves, there are also many things that seem to be very common among those living with these conditions.

For the five years since my diagnosis, I have been an active participant in one online diabetes forum or another. In that time, I have read the stories of many people touched by the various kinds of diabetes. I’ve also, from time to time, heard or read the stories of people with other conditions. And, as Kerri says, there are many parallels.

See if you’ve found yourself saying something like the following:

  • “Because I look normal, people don’t realize that sometimes I’m really sick.”
  • “I work hard to take care of myself, but there are still bad days. It’s so frustrating!”
  • “People say the stupidest things to me about my condition. Sometimes they act like they know more about managing my condition than I do. Even though they usually mean well, it’s annoying and hurtful.”
  • “Dealing with this day after day, year after year, is so wearying and so dispiriting.”
  • “Everybody wants to tell me about their relative that had my condition, and it’s usually someone whose outcomes were really bad.”
  • “My sister-in-law is always sending me articles about ‘cures’ for my condition that are totally whacko, and my neighbor in this marketing scheme is convinced that all I need to do is buy her products!”
  • “Even some of my family members just don’t understand what this is like. Either they don’t get that I’m sick at all or they treat me like I can’t do anything.”

Any of that sound familiar? If you or someone you love has a chronic condition, I’m guessing that some of it does.

For many people living with a chronic condition, participating in social media with those who “get it” can be very helpful. People with diabetes find that the diffuse and informal entity known as the Diabetes Online Community provides a way to exchange information (“Where do I wear my insulin pump with my wedding dress?”) and viewpoints (“I really disagree with this article!”). More importantly, though, it gives PWDs (People With Diabetes) the opportunity to interact with other people who really “get it” and to receive the powerful reassurance that they are not alone.

I don’t know to what extent people with asthma have created similar resources, though I understand that online communities are being formed by people with many different conditions.

To me, this is a wonderful thing and well worth doing. After all, we need all the help we can get – we have badgers clamped onto our butts.

guest post! – engage: exercise and diabetes – allison’s story

Throughout November, the diabetes community has been up to serious Good Things advocacy-wise for Diabetes Awareness Month. Many of my favourite things are initiatives like the Big Blue Test or Connected in Motion‘s World Diabetes Day Scavenger Hunt, that help create awareness while getting people–with and without–diabetes active at the same time.

To close off the month, Allison Nimlos offered to share some of her thoughts about exercise and type one diabetes–and how, despite the ever-constant and ever-changing variables that come into play when managing exercise with diabetes, it is worth it to persevere.

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After 19 years of living with type 1 diabetes, there are two things I know for sure about diabetes and exercise.

1) Exercise is essential for managing diabetes.

2) Exercise is a nightmare for managing diabetes.

Say what?!

No, this isn’t the Twilight Zone, but it is a fairly well-known fact that exercise is both amazing and horrible when it comes to managing type 1 diabetes. For type 2 diabetics, who rarely deal with low blood sugars, exercise is almost all good. But with type 1 diabetes, it gets quite complicated.

In managing type 1 diabetes, you’re basically a juggler. You’re juggling known factors, like insulin and food, but you’re also dealing with unknown factors, like hormones and stress, which can impact how your body responds to insulin. They aren’t anything you can control, so you just have to deal with things as they come. Exercise is sort of in between. Exercise is something you’re aware of — obviously, you know when you’re exercising — but the effects of exercising can vary from person to person, activity to activity, and even day to day!

Because of this, I’ve never been much into fitness. It’s actually easier, in some ways, not to be athletic because it’s one less variable to worry about. That doesn’t mean it’s good for you! Of course, it takes a lot of time and practice to figure out how your body responds to different exercise routines and what your blood sugar target levels should be. Diabetes is a very individual disease!

For instance, yesterday I ran a mile at the gym and ended my workout at a great blood sugar. Today, I ran another mile, and ended with a low blood sugar. Frustrating! But on the flipside, I also know that fitness helps me become less insulin resistant, which means my insulin works even better, my blood sugars in the long run will be lower and more stable, and my body will also be healthier in other ways. One of the major complications of diabetes is heart disease, so having a healthy heart and body through fitness is another excellent way to achieve that.

Here are some tips that I have for switching from being a non-exerciser to an exerciser when you have diabetes:

1) Stay observant. Diabetes changes depending on the variables, and it becomes a little easier to manage when you start paying attention to all the variables. From food and insulin, blood sugars before, during and after exercising, and even time of day, all those can impact your diabetes. Once you see what combinations are more successful, you can start trying to duplicate them.

2) Food isn’t the enemy. A lot of people don’t want to exercise because they are afraid of low blood sugars, and that means eating. But calories and carbohydrates can actually help you lose weight and be healthy. The right food is fuel! So eating does not necessarily mean you’re discounting your entire workout.

3) Be consistent. It takes practice, and a lot of people want to give up after the first workout because things aren’t perfect. But just like your first run or first time at yoga isn’t going to be great, your first time managing diabetes while exercising probably won’t be great either. You have stick with it, make adjustments, and even talk to your “coach” (doctor or diabetes educator) before you eventually get to the point where things will be easier.

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There are also many inspirational athletes with diabetes that constantly remind me not to let my diabetes get in the way. From Phil Southerland, who cycled across America, to Zippora Karz, who 
was a prima ballerina, to Will Cross, who climbed Mt. Everest, there’s no accomplishment that is out of reach for a person with diabetes. However, one thing I have learned time and again is the need for practice. It’s like training for a marathon. You don’t just go out there and run 26.2 miles. You have to start slow, practice, train, talk to people, and learn. Only then can you be successful! 

DSC_1755.JPGIt can be so difficult to adjust to something new. Not only is it physically difficult if you’re not used to running or cycling, but it can also be difficult to stay on top of your blood sugars, because your routine is completely changed. In the long run (no pun intended!), the benefits outweigh the negatives, and I’m personally more committed to fitness than ever. Plus, with the support of the Diabetes Online Community, my endocrinologist, my diabetes educator and, of course, my husband, I know that I can manage my diabetes and stay fit.

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Thanks Allison!  Allison blogs at With Faith and Grace, and is an active diabetes advocate, member of the diabetes online community (DOC) and writer for Diabetes Mine. Currently Allison is pursuing studies that will lead her towards nursing and becoming a Certified Diabetes Educator, creating for diabetes awareness at Blue Cupcake Press . . . all in addition to maintaining an active and balanced life with type 1 diabetes. You can find Allison on Twitter at @WithFaithGrace.

diabetes blessings week

November is Diabetes Awareness Month.  As I write this on Thursday, in the US, it is Thanksgiving Day, prompting this week to become Diabetes Blessings Week.  Mike encouraged me to participate and share what diabetes has blessed me with–as a person without diabetes.

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I don’t know if I can call diabetes itself a blessing–it is still a relentless, incessant, 24/7 job of micromanaging.  I don’t know if I can call diabetes a blessing because I am on the outside of it.

Yet, I do know that I have many times felt the pure impact of good things that would have never happened to me if I didn’t have asthma, and I know that many of my friends feel the same about their diabetes. And I do know the beauty of the Diabetes Online Community–the people, the love, and the hope, which are every bit as relentless as their circumstances try to be. These people encourage me every day, they make me smile, they have been with me through good and bad . . . these people are my friends.

Diabetes has blessed my friends with perspective, with determination, with perseverance.  It has blessed them with a greater sense of knowledge about themselves and about what they are capable of getting through, pushing past and climbing over.

Diabetes has blessed us with community. I have never encountered a health community like the DOC–supporting one another through diabetes in its many forms, but also in life.

Diabetes has blessed me with stories. With perspectives of others enriching my own.

With love. With hope.

With friends . . . nearby and around the world.

stories from california: guest post – feeling the love of the diabetes online community!

Last weekend, I hung out with a really special group of people. My friend Mike, blogging at My Diabetic Heart, asked me to guest blog awhile back, and we pinpointed that my MDH guest post would be an awesome place to write about some of my thoughts about hanging with a few of the amazing people of the Diabetes Online Community, or DOC.

Head on over to check out my guest post – Feeling the Love of the DOC.

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That is one fiiiine looking crew!

Back row left to right: Kim, Dana, Chris and Sarah

Front row: Liz, me, Cherise, Debra and Christina

Photo credit: Christina