NHBPM

Monster Video Screenshot

Monster

National Health Blog Post Month, Day 15: This one’s for you, baby. Dedicate a song to your condition. Why did you pick that song? Find a YouTube or link to a version to embed in your post.NHBPM_2011_Day15

I’ve been thinking about this blog post, and letting it marinate in my imagination for the past day or two. I’ve written and related music to my place in the world in the past, including here, here, and here.

Lately I’ve been in this spot where I haven’t been wearing my continuous glucose monitor (CGM) consistently (again). Recently my sensors expired, and after trying to get the remainder to work to no avail, I don’t even have the option to wear my CGM now until I order pump supplies again.

It has been about a month since I have worn my CGM. As a result, my blood sugars have been all over the place. This morning I woke up at 292. Then tonight, I bottomed out at 35.

Diabetes is like that. Sometimes it feels like there is this beast inside that is chewing through wires and smashing buttons and causing all havoc in my body’s proverbial blood sugar control room. That was when I thought of the perfect song to dedicate to my diabetes…“Monster” by Skillet.

Listen to the lyrics. The song is all about a monster that cannot be controlled. We try with diabetes, but so often it feels like we are the lion tamer in a cage with three lions who at any minute could decide that they’ve had enough of behaving.

A lot of the time I hide the diabetes monster, and bed it down so that it doesn’t make noise or cause a commotion. Another line in the song, “My secret side I keep, hid under lock and key, I keep it caged but I can’t control it.” Keeping all of our diabetes fueled emotions bottled up inside is sometimes the only way that we have the strength to deal with diabetes, as if ignoring it will make it go away.

Throughout the song there is a line that says, “I must confess that I feel like a monster.” That is how I feel when my blood sugar is low or high and I’m struggling with diabetes. I need to let it out and say, “No, this is not okay!” Maybe I need help, or maybe I just need someone to appreciate the gravity of what I’m feeling inside.

This battle wages inside all of us with diabetes, regardless of type, and eventually we manage to become the monster ourselves and fight back.

In a few weeks I will have new CGM sensors, and will know exactly what my blood sugars are doing between finger pricks. Well, at least within 20%. It doesn’t sound that dramatically radical, ordering pump supplies and getting new CGM sensors, but that is exactly what it is. It is action taken to gain control and tame the beast.

I say to you, diabetes…who’s the monster now? RAWWWRR!

 

This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J

National Health Blog Post Month

To Boldly Go Where No PWD Has Gone Before

Elevator Speech

National Health Blog Post Month, Day 14: Elevator blog. If you were in an elevator with someone and they asked you about your blog, what would you tell them?NHBPM_2011_Day14

My blog is my perspective on living with diabetes, including random nonsense, diabetes-related acronyms, and as much humor and entertainment as I can muster. The goal is to help people with diabetes fill in the gaps between the clinical and the unknown, encourage a sense of community, and make sure that no one ever feels alone with diabetes. And to boldly go where no person with diabetes has gone before.

To Boldly Go Where No PWD Has Gone Before

Today, November 14, is also World Diabetes Day. Landmarks around the world are being lit blue tonight to honor people with diabetes and to help raise diabetes awareness. Join me in wearing blue today, take someone with you to a World Diabetes Day event, and help show the world that despite the challenges of living life with diabetes, people are able to thrive with this disease when they have access to proper medications and treatments. Insulin is a blessing to all of us with diabetes who need it to stay alive, and we are immensely grateful for it, but it is not a cure. WE NEED A CURE!Diabetes Blue Circle

This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J

National Health Blog Post Month

How To Be Like Walt

The Plus Factor

National Health Blog Post Month, Day 13: Open a book. Point to a page. Free write for 10-15 minutes on that word or passage. Post without editing if you can!NHBPM_2011_Day13

Presently I’m in the midst of a couple of books, magazines, and academic journals at one time. That might actually explain why I am such a slow reader these days. My reading adventures are as varied and overbooked as my daily schedule. The top book that I’m reading at the moment and getting the most joy out of is “How to Be Like Walt: Capturing the Disney Magic Every Day of Your Life” by Pat Williams.

How To Be Like Walt

I am presently about halfway through the book, and I absolutely love it. I have deliberately taken my time with this book, savoring it in small portions, because it is a joy to read and I find it so interesting. It chronicles the life of Walt Disney, both from the personal perspective of Walt, but also by the people that he worked with and inspired throughout his life. I’m a fan of Walt Disney to begin with, but I really appreciate the details and stories surrounding Walt’s life, ideas, and inspiration.

You can find something interesting and thought provoking on just about any page in the book you turn to. I can’t say that about most books I read. To honor the spirit of this blog prompt, I opened the book up and turned to page 154, to a section titled “The plus factor.”

Sometime in the 1940’s Walt Disney coined the term “plussing,” a verb meant to give people more than they expect.

Sometimes we get in the habit of only giving people what they expect, and not much more than that. I don’t think we do it intentionally, but we just get accustomed to a certain level of performance and we ride that wave for as long as we possibly can, until events force us to swim back out and seek the next big swell.

I think of my life with diabetes, and how sometimes I don’t want to do the work required to exceed the expectations of myself (which are impossibly high), my endo, or my CDE. I do only enough to get by, and hope that I get a lucky roll of the dice when it comes to my weight, my A1C, or my blood sugar graphs.

Walt would say that sort of behavior is ludicrous, and won’t ever allow me to grow and be my best. I don’t have to be perfect, but “plussing” is saying that I can always do just a little bit more in an effort to exceed expectations, even if those expectations are my own.

Walt was never satisfied with “good enough,” and that is how our life with diabetes is a lot of the time. We always want to have a little bit better blood sugar numbers, a little bit lower A1C, a little bit less weight, a little more exercise, a little bit less carbs. So much of what we deal with is just data, but it’s hard not to assign emotions to all of those numbers, especially when those numbers keep us from achieving something that we want.

“Walt Disney was adamant about quality. He always found new ways to ‘plus the experience.’ He wanted to give people more than they anticipated.” – Dan Viets, Disney Historian and Coauthor, Walt Disney’s Missouri

Dare to plus your world. Even if you have to take a step backward to move forward, always aim for a bit better than where you are right now.

 

This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J

National Health Blog Post Month

High Five

Laughing At The Hard Times

National Health Blog Post Month, Day 12: Teach a class. What’s something that you are uniquely great at and could teach a class on? Write the tutorial in a blog post. Bonus points for images, links to resources, and video.NHBPM_2011_Day12

It’s okay to complain. I do it, you do it, we all do it. It’s a natural vent for getting things out, and getting to the positive side of things. Something that I feel I am good at is finding the brighter side, which usually also includes humor and laughter.

I love to laugh, make jokes, and entertain. It is part of who I am, how I define myself, and what makes me happy. It’s difficult not to be happy when you are smiling and laughing. And when you are riding a roller coaster. Or sky diving.

I am not a psychologist, counselor, therapist, brainwasher, Vulcan mindmelder, or use The Force, and I don’t have ESPN. But in my world, I trust that when people can laugh about things, they can survive them.

One of my very favorite quotes, and I use it often, is by Bill Cosby.

“You can turn painful situations around with laughter. If you can find humor in anything, even poverty, you can survive it.” – Bill Cosby

I believe that, to my core. We’ve all been through difficult times in various shapes and sizes. What has gotten me through almost every single hard time and helped me learn how to smile again is the power of laughter and the support by people who like to laugh as well.

Try it. You might like it.

High Five

This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J

National Health Blog Post Month

DOC at FFL 2011

Growing The DOC

National Health Blog Post Month, Day 10: The future of online activism. Our favorite social media sites are constantly undergoing renovations to become quicker to navigate, easier to interact with, all encompassing, mobile, and everywhere. Imagine the same thing about your community – how will they evolve, improve, and grow?NHBPM_2011_Day10

The Diabetes Online Community (DOC) is growing. People with diabetes (PWD’s) are discovering that there are other people out there in the world and on the internet just like them, who know what they are going through, and who deal with the same things day in and day out.

According to the World Health Organization, in August of 2011 there were 346 million people worldwide who have diabetes. Most of those 346 million people have never even heard of a diabetes community, much less a community that is online, worldwide, and accessible at any time, day or night.

Last week there were 111 people involved in the weekly Diabetes Social Media Advocacy (#DSMA) Twitter chat. That is 111 people who either have diabetes or who live with and love someone who does. For every one of them there are millions more who are living with diabetes alone, with no support, no encouragement, and nobody to turn to who truly understands the daily pricking, poking, counting, injecting, and correcting adventure that is life with diabetes.

DSMA is not everyone in the diabetes online community, by far. There are a host of diabetes online gateways and communication forums, including Juvenation, Children With Diabetes, TuDiabetes, dLife, Diabetes Daily, and ACT1 Diabetes, just to name a few. (If you know of other online communities for PWD’s, please share them in the comments below.)

The point is that we, as a diabetes community, have a lot of room to grow. So far we’ve really grown organically, and often accidentally. Someone may be searching for something about diabetes and spot a link to a diabetes blog. From that blog they may find references to other blogs, different types of information, and maybe even reach out to an online community with questions.

Healthcare professionals need to better recognize that patient advocacy and support is not going to go away, and that it is not a bad thing, and encourage patients to get more involved with the online communities that are there for them. From those that I’ve talked to, the overwhelming majority of doctors do not like their patients getting information online relating to their health condition. Most doctors would prefer that a patient contact them directly for support. Meanwhile, these same doctors go to great lengths to remain incommunicado, often having an unlisted personal phone number, not sharing their email address, staying off of Facebook, and forwarding patient calls to voicemail instead of a real live human being after hours.

If you, as a doctor, expect your patients to look to you to be their primary contact for questions, then you must be available 24/7 just like the online communities are. Otherwise, change your expectations, because patients are not going to stop looking for the information and support that they need to live with their chronic condition.

I realize that doctors are cautious about patients contacting other people who do not know their medical history and asking clinical questions. It’s a valid concern, but it doesn’t cover the whole picture of what it is like sharing a world 24/7 with diabetes.

The Diabetes Online Community is about LIVING with diabetes. Our doctors and healthcare professionals play a critical role in our living with diabetes, but they are supporting cast. We, the people WITH diabetes, are the stars of the show. Doctors need to make sure that the patient views them as part of the solution, a partner, not some overbearing dictator of their health.

Diabetes is a chronic illness that requires people to manage almost all aspects of their disease independent of a physician’s watchful eye. We look to our endocrinologist, CDE, or primary care physician for overall guidance, but ultimately we are the ones taking action on all of the diabetes decisions we have to make on a daily basis. Nobody calls their doctor every single time they need to inject insulin. We educate, we calculate, and we dose accordingly.

The diabetes online community also provides something else that most doctors simply can’t, and that is time for the emotional side of the disease. We take time to get to know each other, and bond. Diabetes is an incredibly emotional disease, and the online community is more capable of providing support and encouragement and understanding at the point of need than any doctor’s office can, because those in the community deal with the same emotional triggers day in and day out.

If there is anything that I have learned about diabetes in my 30+ years with it, it is this: The only diabetes quick fix is glucose when you’re low. Everything else takes time, patience, and deliberate action to make it better. Having a community of people available who understands is the difference between thriving with diabetes and simply surviving with it.

DOC at FFL 2011

Photo by C.

This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J

National Health Blog Post Month

This is also my belated post for dblog day 2011: http://diabetestalkfest.com/blog/?p=461

dblog day 11-09-2011

Martin_DC_Feb2011

Brand, Me

National Health Blog Post Month, Day 9: My personal brand. As a Health Activist, you are a front-facing leader. What do you imagine you look like to your readers? What qualities do you possess? It’s ok to toot your own horn today – you have full permission to indulge. And don’t hold back.NHBPM_2011_Day09

As a diabetes advocate, a person with diabetes, and a purveyor of all things awesome, I insist that what I write about be honest. I want people who stumble across my bloggity blog to appreciate that what I’m sharing is me, my life with diabetes, and that it is genuine, and based on a real human bean’s perspective.

I don’t want anyone to look to me for clinical advice, because I’m not a clinician. I don’t work for Clinique either, which is what I think of when I hear words like “clinical” and “clinician.” You know the people at Clinique walk around the office going, “I’m a Clinique clinician going to the clinic to get all clinical on some classy cloud computing clowns.”

Clearly, I have an extremely vivid imagination. I like to think of myself as a cartoon character, with a busted pancreas and a slight problem with blood sugars that fall faster than ACME anvils in a Wile E. Coyote cartoon. Some of my posts (I hope) are imaginative, and entertaining. I admire the creativity and ingenuity of people like Walt Disney, so maybe that is where my cartoon imagination comes from.

As serious as life with diabetes is, it is also entertaining, and I try to share that. I’m a storyteller. Not to be confused with a liar. I like to read stories where there is a beginning and an end, and somewhere in the middle is adventure, good versus evil, and a bit of anticipation for what is going to happen next. There also has to be a point. Without a point…well, what’s the point?

I’m also an educator. A librarian, actually. I like to provide people with information that they can use, and learn from, and appreciate. Nothing makes me happier than reading a comment or receiving an email from someone about a post I’ve written that echoes what they feel, what they deal with, or puts into words what they are going through. I’m a people person, and that connection reinforces the importance of sharing things about my so-called diabetes life.

I hope that when my readers look at me and my blog, that they smile. Maybe occasionally they get a little watery eyed. Hopefully they laugh out loud, often. I hope that they are touched, even if it’s slightly inappropriate touching, and that they find a connection, hope, motivation, and support in that they are not alone with diabetes. No one should ever feel alone with diabetes.

Martin_DC_Feb2011

This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J

National Health Blog Post Month

Emmy_by_Alan_Light

Truths & Lies

National Health Blog Post Month, Day 8: 3 truths and 1 lie. Tell us 3 things that are true about you, your condition, your Health Activism, or your life. Now tell us 1 lie. Do you think we will be able to tell the difference?NHBPM_2011_Day08

My life with diabetes is a mixture of truths and lies. Since discovering and becoming part of the Diabetes Online Community (DOC), I have learned how to be more truthful about my diabetes, but that wasn’t always the case.

You see, I’m what they call stubborn when it comes to my diabetes. I will listen only when I want to, and I will divulge only what I want to, sometimes even to my own detriment.

It’s only been in the past couple of years that I will admit to how awful I actually feel when I’m running a high blood sugar. I’ve told A-Flizzle on more than one occasion that my crabbiness was because I was 200+ and just wanted to be left alone. I hate being high, and I don’t care who knows it. If I say I’m high, the best bet is to give me a wide berth.

I’m more likely to admit to being high, mainly because I don’t like it. Complaining helps. So does insulin.

What I’m not so good at is sharing when I’m low. Most of the time when I’m low, my natural tendency is to hide it. I will lie to you. I will tell you that I’m fine, and give the appearance that everything is totally okay. Meanwhile, inside, just below the surface where you can’t see, I’m kicking and flailing and fighting that low blood sugar like it’s nobody’s business. In my head, I deserve an Emmy for those performances. For lead actor in a diabetes-related hypoglycemic episode, the Emmy goes to…ME!

Emmy_by_Alan_Light

Photo by Alan Light (CC license - on Flickr at alan-light)

I notice it. I’ve even inadvertently embarrassed myself because of it. Sometimes when I’m low, I start to ramble and not make sense, but don’t possess the ability to shut up (kind of like this blog post). It’s especially inconvenient when I’m low and in meetings and trying to make a point that I can’t quite get out. And the whole stinking time I know I’m low, I’m just on low-brained auto pilot and gravitate toward my tendency to hide it instead of toward the need to say, “Hey gang, I’m low, I have to take care of this now and then we can continue.” Is anybody really going to begrudge me a break in a meeting? Probably not. And if they do, who cares?

It takes a trained eye to spot my low blood sugar tells. Sometimes I get twitchy, over analytical like I’m trying to figure out the secrets of the universe via the container that my glucose tabs are in, nonsensical motor mouth, shaky and clumsy, confused, maybe closing or covering one eye to ward off the double vision, suddenly sweating for no reason, or just sort of wandering around aimlessly and getting really irritated over nothing. Literally, nothing.

When it’s a bad low (not that the aforementioned symptoms are good, by far) and the act is over is when I go mute, and my eyes sort of glaze over, and I may even start staring at you awkwardly as if trying to tell you something of grave importance with my Jedi mind tricks. And I am too. I’m trying to tell you that I’m starting to shut down, and I need your help, and I can no longer tell you what I need with my words. I need you to know to get the glucose out of my desk, or the glucose tabs from off of my keychain, or the glucose gel out of my bag. I might even need you to help me get it in my stubborn mouth. It’s happened before. It will happen again. It is because I have diabetes.

So rather than write some post where I lie to you, I’m telling you, I will lie to you. But I may also need you. And I need you to know how to spot the truth behind my lies.

This post was written as part of National Health Blog Post Month (NHBPM) – 30 health posts in 30 days: http://bit.ly/vU0g9J

National Health Blog Post Month