DOC

Friends For Life 2012

Friends For Life 2012

The world is full of both extroverts and introverts; individuals who gain energy and fulfillment through being around and engaging groups of people, as well as individuals who thrive better when they have time to themselves and are not as engaged socially.

There are all sorts of definitions and distinctions of what makes someone an extrovert or an introvert. You could take 20 personality tests and read the entire self help section of your local bookstore and still not have a clear definition of the two classifications for all situations.

For me, that is the kicker. I tend to sort of meander between extrovert and introvert depending on the situation. I love being a part of big groups, sharing information, having both normal and nonsensical discussions, and feel like I’m being included, if not leading the experience. However, I sometimes reach a point where I also need my “me” time to figure things out on my own and reflect, plan, scheme, and let my thoughts run wild without the constraints of appropriateness to the situation.

When I need to be an extrovert, I gravitate toward situations where chances are good that I will be at or near the center of attention. As an introvert, you can sometimes find me in a state of observation, quiet, seemingly on the outside looking in.

I’m like this with diabetes as well. There are times that I am perfectly comfortable wearing the proverbial tights and cape and hooker boots that make up the Super Diabetic persona (hey, it worked for Superman…don’t judge me), educating the masses about the ways of the ‘beetus, managing meals in a single bolus, calculating carb and blood sugar ratios in my head faster than a speeding bullet, and encouraging the newly diagnosed and recently overwhelmed with a healthy dose of You Can Do This.

There are also times when I don’t want to deal with my diabetes, much less try to convince other people that it is easy or that I have everything under control. Sometimes, with diabetes, it’s hard, and I suck at it. Not most of the time, thankfully, but sometimes it is overwhelming and I just need some time to reflect and figure things out.

Friends For Life 2012

This past week I was at Friends For Life 2012, which is this extrovert’s dream come true, yet there were times that I found myself reserved and low-key. I spent quite a bit of time listening and observing, sometimes clinging more to my introvert tendencies to try and figure everything out than clamoring for attention and putting my diabetes on stage and in the spotlight. This wasn’t my first Friends For Life, and I didn’t feel as if I was around strangers that I needed to figure out. I just wanted a fresh perspective, for both myself and my diabetes.

I really needed a week with people with diabetes. There is something extremely special about food buffets that have carb counts on them, not being looked at strange for whipping out a BG kit and pricking my fingers in public, and people that understand what a glucoaster is and are riding it all week right along with you.

Now that I’m back home, I’m putting together my thoughts on some things that I learned this past week. From all the things that can come with diabetes beyond just insulin, to amazing things that people with diabetes can do, to challenges with the FDA, observations of parents of children with diabetes, and even the diabetes online community in real life, I’ve got plenty to think about and share. But first, I need a night to rest after a week of staying up until the wee hours of the morning every night. After all, nobody goes to Friends For Life to catch up on sleep.

Twitter Fail Whale

Working Through It All

I’ve been busy lately. Extremely busy. Too busy. I’ve been doing all kinds of things, but without divulging my Dead Sea Scroll-length laundry list of things to do, suffice it to say that I’ve been working really hard at just trying to keep up.

From being so occupied lately, I’ve developed a bad habit of setting aside important things that make me feel better and happier, like writing on this blog and being an active member of the Diabetes Online Community (DOC), exercising, reading for leisure, getting enough sleep at night to not feel like I’ve been hit by a truck the next morning, keeping in touch with friends I care about and miss (both online and offline), and in some ways even my diabetes. I feel so out of touch, missing invites to events that I would have loved to have been a part of, missing news, and even missing out on the jokes. And I LOVE a good joke. Speaking of which, has diabetes been cured since I’ve been M.I.A.?

In addition, I can’t seem to get anywhere with my New Year’s goal of losing some weight, which just adds to my frustration. Most days I find myself completely worn out by the end of my work day, and I come home and grab the carb-heavy easy foods and try to cool my jets instead of grabbing my gym pass, the iPod, and a water bottle. By the way, I need a new iPod Nano if anyone is feeling particularly generous. No, seriously. Anybody? Bueller…Bueller…

My bicycle is sitting in my laundry room collecting dust, the spokes wrangling wayward dryer lint, taunting me each time I do a load of laundry. I can hear it whisper, “Psst! Hey, fatso! Wanna go for a ride?” My swimsuits, from board shorts to triathlon training gear, sit in the bottom of a drawer just waiting for me to slim down enough so that I can fit into them and get back into the pool without it looking like the Twitter fail whale retired to the local YMCA. Thankfully, my swimsuits know better than to make any snide comments in my general direction. I’ve already threatened to give them to the dog to play with if I hear one snotty remark out of them.

Twitter Fail Whale

I know that I’ve been missing online. I know that I’ve missed being online. I also know that sometimes there is just no extra time for much beyond the things that absolutely must be done.

So what the heck does this have to do with diabetes? Last weekend, Jacquie, her husband Bob, and Sara spent the weekend visiting with A-Flizzle and I, and it really helped me to remember what I love about our community of people. It ended up raining the entire weekend, but I still loved that we all got to hang out and spend time together. When you can hang out with people and do nothing and still have fun doing it, you know it’s a good thing.

We are so much more than just people with diabetes. We are friends, even family. I get a text from Jess late at night for no reason but to ask how I’m doing, and I smile. Sara walks in the door with a hug and says, “We’ve missed you!” and I swallow that little lump in my throat and change the subject really quick. Bob (not to be confused with Jacquie’s Bob) sends me a Twitter mention from somewhere in the middle part of the country and it reminds me that I’m missed, and I’m not alone, even when I feel like I kind of am.

I’m working through a lot of things right now. I’m processing a lot of change lately. Don’t take that negatively, a lot of the change I’m dealing with is amazingly good change, but it’s still change, and by nature we human beans are change resistant.

I know I’m dealing with a bit of depression too, but I’m not willing to truly admit it to myself. I tell myself I’m too busy to deal with that right now. I’ve got a lot going on internally about external influences, trying to process my own feelings about some things that I’ve been dealing with for awhile now, while trying to manage my anger and hurt levels on an almost daily basis.

I really have a lot on my plate with work and trying to get my career as a director of all things awesome to the next level. I also long to be a bigger voice and presence in the diabetes community. Something that I use this blog for regularly, and something that I’ve somehow veered away from, is making people laugh. I love to make people laugh, and I want to be able to laugh too. Laughter is a ginormous part of who I am, and I need it.

I’m overwhelmed with the sheer amount of things that I feel like I have to do, that I want to do, and that I need to do. Regardless, I am trying my best to work my way through it all, or at least get things to a manageable level of stress and outstanding items so as not to be so neurotic. If you don’t hear from me, or reach out and get only silence in return, don’t fret. I got the message loud and clear, and I appreciate it more than words, and I’m working my way through everything in an effort to find my way back to you all.

MTV Moon Man - CC License - Photo by Deidre Woollard

MTV True Life: I Have Diabetes…and Support

So I’m a day late, but I watched the MTV True Life: I Have Diabetes episode last night, and I have a confession… I didn’t hate it.

The first thing some folks may want to jump on is that MTV didn’t get all the facts about diabetes exactly right. Well, that is true, but they were at least playing the correct sport in the correct ballpark, so to speak. I’m starting to think that the only way to get all of the facts right about diabetes is to simply not talk about it at all. I’ve had diabetes for more than three decades, and I don’t always get all the facts right either. So there. Overall, I think MTV did a good job, and presented a group of people and a subject that folks can actually care about (as opposed to “True Life: I Scratch Myself in Inappropriate Places in Public” or “True Life: I Toot Glitter and Crap Rainbows”).

Actually, I might would watch that last example. But anyway, moving on…

I could identify the most with Kristyn, a young girl in her mid-twenties with Type 1 diabetes who is faced with the realization of the abominably high costs of living as an adult with diabetes. Pumps, pump supplies, insulin, strips, pens, pills, and any other medications that we may have to take adds up to a lot, even with insurance. Without it, it’s kind of mind blowing how much this stupid disease can cost. I can relate because right now I’m starting the research of switching insurance companies just because my own costs are slowly but surely creeping into the danger zone. Diabetes already cost me my pancreas, so I’m not really interested in it costing me an arm and a leg to go with it. (See what I did there?)

I’m really proud of Kristyn, because she’s taking control and sacrificing her independence as an adult to get control of not only her diabetes, but also the cost of living with diabetes. That is a really, really hard thing to do, and it’s admirable that she’s not accepting failure as an option, even when it seems like an uphill battle. Although her mom came across as a bit overbearing on the show, support is incredibly important for all of us, whether we have diabetes or not, and I’m glad Kristyn has that.

Yesterday, Kristyn somehow found Kim’s post about the episode, and now she is connected to several members of the Diabetes Online Community (DOC) via Twitter. I predict that it won’t be long before she is connected to more people with diabetes (PWD’s) both online and in real life, and is playing an even bigger role in our diabetes world. You read it here first.

Matt was someone else that I was a bit fascinated with. Matt is a college student, was portrayed as a party animal and heavy drinker, and also has Type 1 diabetes. Although I think Matt would do well with more support for living a high quality, action packed, totally excellent life as both a person and a person with diabetes, I wonder if he is ready. I can’t speak for everyone, but for me it was easy to catch myself judging Matt as a college kid that just doesn’t care about his life with diabetes as much as he cares about being the life of the party. I know that I like to do extreme things and have adventures, but I also enjoy feeling like I’m in control of my diabetes while I do them, and not having to choose between the two options. In my world, the two go together like peanut butter and jelly. But that’s MY world. That is what works for ME. Your diabetes, and Matt’s diabetes, may and probably does vary. There is not right or wrong…there simply is.

I would really hate for Matt to feel like he is viewed as anything less than what appeared to be a nice guy, just because he was portrayed as enjoying an alcohol-heavy college lifestyle on MTV. When the time comes that he is ready for changes that work for HIS diabetes and HIS world, or even if he just wants to reach out and say hello diabetes world, then I will be one of the first people in line to welcome and support him and celebrate life right along with him. (Matt, if you get to read this, just say when buddy.)

I really didn’t have a lot that I could relate to with Jen, as her diabetes was discovered while she was pregnant with her son. I can’t imagine how hard it is to transition from a life of taking care of yourself to a life of taking care of you AND a child. Add in having to learn how to also take care of Type 1 diabetes, and that sounds like a lot to deal with. But I know without a doubt that it is possible, and there are an army of D-Moms and PWD Moms and even just us old standard PWD’s who are out there in the world and eager to help.

If this episode of True Life did nothing else, it reminded me that any one of these struggles with diabetes could be my struggle with diabetes. I am so thankful for the people that I have met that have helped me to realize that diabetes is a big priority in my world, and I hope to show them the same compassion and understanding that they have shown me. Diabetes is hard, and it’s no joke sometimes. Having a group of amazing people to joke about it with, however, makes all the difference in the world.

MTV Moon Man - CC License - Photo by Deidre Woollard

CC License - Photo by Deidre Woollard

Rowlf and Hopper

Some Of What I Learned

Floating around various blogs, some diabetes-related, others just pure nonsense, I’ve noticed that several writers have posts that follow a particular theme at times. I’ve tried Monday Mantras, but I tend to get really busy on Monday’s and forget to do them. Or I can’t find a Sharpie pen to write with. Or my Post-Its to write on. But mostly, I just forget.

Sara over at Moments of Wonderful does this cool thing called Faith Fridays. I’m not a particularly religious person (faith, yes…religion, not so much), but I really dig what she shares because she connects it to her real life. I think that faith must have that connection to real life to have much meaning. Your ability to walk on water may vary from mine…I tend to sink pretty quick.

I know me, probably better than most people do. I know that I have a hard time doing anything on a consistent basis, with the exception of DSMA on Wednesday nights and having coffee every morning. EVERY. MORNING. I have to really be passionate about something to keep it going for a significant length of time (ahem…this blog). I also need to have the vision to see where something is going. If I can’t see the end result myself, or have it explained to me by someone, then it can be difficult to get me to buy into it. I like to dream big, and in detail. Doing something just to keep the ship afloat does me no good if I can’t envision the paradise that the ship is sailing to.

Part of having and developing a vision for the future, any future, is having curiosity and the desire to learn something new. A world where people know everything would be pretty dull. While showering (you just never know where inspiration is going to strike, I tell ya!), I thought up an idea to share some of the things that I learn each month.

Also, if you want to write a post and participate at any time, just throw in the hashtag #SOWIL (stands for Some Of What I Learned) and feel free!

Some Of What I Learned (November 2011)

  1. Daily blogging is hard to do, but doing it for National Health Blog Post Month is totally worth it.
  2. If you have diabetes, you should get gifts on World Diabetes Day.
  3. Disney World is indeed a magical place. More so if you have an A-Flizzle.
  4. If you lose your phone at Epcot (or any park at Disney World) and they tell you that it is with Lost & Found at the Front Gate, that means it’s at Magic Kingdom.
  5. The Muppets are just as lovable, fun, and relevant as they were when I was a kid. And I think they should get a weekly show, like Saturday Night Live, only Muppetier. Mahna mahna.

  6. My dog has an uncanny resemblance to Rowlf.
    Rowlf and Hopper
  7. 99% of the diabetes online community prefers kindness over meanness. Also, 47.3% of all statistics are made up on the spot. But I’m certain that 99% is a pretty close estimate.
  8. I miss having CGM data. I don’t miss stabbing myself with the harpoon and the uncomfortableness of wearing the CGM sensor. Can someone please come out with less intrusive CGM technology?
  9. Samsung and Verizon are probably the worst two companies in the world to work together to introduce new technology in a timely manner. Especially when I need a new phone, and theirs is the one that I want.
Big Success

Geek, Party Of One

National Health Blog Post Month, Day 27: Quote Unquote. Grab a quote from this site (type in any word – see what comes up!) and use that quote to set your writing.NHBPM_2011_Day27

“The twenty-first century will be different. The human species, along with the computational technology it created, will be able to solve age-old problems of need, if not desire, and will be in a position to change the nature of mortality in a postbiological future.” – Ray Kurzweil, The Age of Spiritual Machines

One of my favorite bands, Our Lady Peace, released an album in 2000 titled Spiritual Machines that was inspired by concepts from the book “The Age of Spiritual Machines” by Ray Kurzweil. After hearing the album, I was as intrigued as the guys in the band, and had to dig a little deeper.

There are many quotable passages in the book, and in different scenarios it appeals more than others. I make no bones about the fact that I am a tech geek. I love and live technology. I can spend way too much time keeping up with tech news, advancements, and creative ways that people use technology to solve real world problems. This book was right up my geeky alley.

If you have diabetes, especially Type 1 diabetes, you probably walk around with a myriad of technology at any given time. This does not speak to everyone (or every type of person with diabetes, YDMV), but it isn’t unheard of to hear of someone walking around several devices attached to them or nearby that are helping them to make decisions that keep them alive.

I’m an example. I have a continuous glucose monitor (CGM) that gathers information from a flexible sensor residing just under my skin and a wireless transmitter. My CGM is integrated with my insulin pump, and helps me to maintain better control with my blood glucose (BG) levels by tracking trends so that I can see when my BG is rising or falling.

My insulin pump is connected to me via a similar type of cannula, though this one is linked to my pump via a nearly three foot tube. My insulin pump, powered by battery and programmed to my individual insulin needs, doses very small amounts of insulin around the clock through that tube, with bigger doses occurring when I eat a meal or have a high BG that needs correcting. I also carry around a standard issue fingerprick BG kit that tells me what my BG is at any given time with more accuracy than my CGM alone.

I have other, more multipurpose pieces of technology that I use to help me manage my life with diabetes as well. I have my cell phone (smartphone) and iPad that I use to look up carbohydrate info, keep in touch with the Diabetes Online Community (DOC), and search for other info that I might need on the fly to better manage my diabetes. One of my favorite apps to use when carb counting is the Go Meals app, especially when I go out to eat.

I feel like, in many ways, Kurzweil’s vision of a 21st century where computational technology is used to change the nature of mortality has already come true, though we still have miles to go before we sleep. When I was diagnosed with diabetes over 30 years ago, the information and data that we have today was simply not available. Now, we can figure out how many carbs are in a meal at a restaurant by the time a server can return to the table with our drink order. The swiftness of information is only going to get better, and the quality will continue to improve as well.

I’m excited to see what is next with technology used to live with and manage this disease, and how our world with diabetes will continue to evolve. I believe that one day there will be a cure, but until then, I am thankful that technology keeps improving to keep us alive and well until we get there.

Big Success

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

Coco and Me - FFL 2011

Here A Mascot, There A Mascot

National Health Blog Post Month, Day 24: My Mascot! Give your condition, community, or self a mascot. Who is it? What do they represent? What is their battle cry?NHBPM_2011_Day24

Dictionary.com defines a mascot as “an animal, person, or thing adopted by a group as its representative symbol and supposed to bring good luck.” I feel like there are a lot of potential candidates for a diabetes mascot.

First, there is this thing that Jacquie and I found at Friends For Life last summer. I’m not even sure what it is. Is it an insulin pump? Is it a BG meter? Is it a calculator? Is it a magic robot with an affinity for sideways exclamation points?

Jacquie Meter and Me - FFL 2011

Then there is Lenny the Lion. Granted, he’s already got a full-time gig as the Medtronic mascot, but he does have the advantage of being well-versed with an insulin pump. And think, with those cat claws, you would never have to replace a lancet ever again!

Lenny and Me - FFL 2011

Coco is a great candidate for a mascot as well. She has Type 1 diabetes. She has lots of friends and lots of adventures. She’s a lot like me! Except her primary contribution to conversations is “Eeek!” But I know people that have a lot more to say than just “Eeek!” and I wish they were as limited in their vocabulary as Coco is, so maybe that isn’t such a bad thing. You know what they say (whoever “they” are)…a little “Eeek!” goes a long way.

Coco and Me - FFL 2011

There is also Phil Southerland, who makes a great representative for the diabetes community. He’s a cyclist and co-founder of professional cycling’s Team Type 1-Sanofi, author of Not Dead Yet, and he’s from where I live, Tallahassee, Florida. He was also recently appointed Director of Healthcare Policy, Planning and Patient Advocacy at the World Health Organization. And he has Type 1 diabetes.

Phil Southerland and Me - FFL 2011

I think any of these candidates would make a fine diabetes mascot. However, I’m glad we don’t have to pick just one. The more characters there are in the world advocating and representing and bringing diabetes to the forefront of people’s attention, the better.

 

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

CGMs FFL 2011

To Be Thankful

National Health Blog Post Month, Day 23: Health Activist Choice. Write about whatever you want!NHBPM_2011_Day23

It’s Thanksgiving week, and Mike over at My Diabetic Heart has brought back Diabetes Blessings Week for the second year in a row. I was missing in action over the week of Thanksgiving last year, so I am excited to participate this year. It’s immensely important for people with diabetes to know that there are a ton of things that come along with diabetes that are totally worth being thankful for.

First there are low blood sugars to be thankful for. Now, I’m not talking about the severe lows where you get all shaky and sweaty and confused. I’m talking about the lows where you are just low enough to merit a snack that you wouldn’t normally eat any other time of the day. Maybe you get to treat a low with some juice, or a box of Nerds, or maybe even a little “Heck yeah, I’m having dessert with lunch today baby!” At least with diabetes, you can tell your friend who is sitting across the table from you watching you plow through your second bowl of homemade banana pudding, “Hey, don’t stare at me. It’s for my diabetes!”

Second, us people with diabetes tend to be more in tune with your body than most people without diabetes are. I think that is really cool. Because of our obsessive compulsive disord…um, attention to detail, we can live just as long as people without diabetes, and often without complications because we are able to catch many problems before they are a big deal. So congratulations to the newly diagnosed, you’re going to live forever! Or at least as long as the national average, which isn’t too bad at all these days.

Speaking of people with diabetes, those folks are worth being thankful for as well. Sure, diabetes is a lifetime commitment, but you get to join the finger pricker armed forces of the world in a battle to save mankind…who happens to have diabetes.

The folks that I’ve met in my world that embrace and encourage me AND my diabetes are those that I cherish the most. I remember days when “normal” was me hiding my diabetes as soon as I left the house. I would so adamantly do whatever I wanted in order to try and be like everybody else, and not let diabetes steal my spotlight. I’m not talking about wild behavior, but just simple things like driving a car, going to work, walking across a busy six-lane street (while low!) to get a snack. I mean, really? What was wrong with me?

I’ll tell you. I was so focused on everybody else in my world that I didn’t take the time to focus on me. I finally had to have a talk with myself. I said, “Self, that’s enough of living alone with diabetes. There are people out there that need you, and good grief, you need them too. If you’re low, say you’re low. If you’re high, say you’re high. And do something about them both. And stop pretending like you can outsmart diabetes when your blood sugar is below 50!”

I’m thankful for so many things in my world, but what I’m thankful for the most is the fact that I’m still here and able to be thankful.

CGMs FFL 2011

Jacquie, Jess, & me at Friends For Life 2011

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 post for Diabetes Blessings Week 2011: http://www.mydiabeticheart.com/diabetes-blessings-week/

Diabetes Blessings Week 2011

Oh The Places You'll Go Low

Best Of: Oh, The Places You’ll Go Low!

National Health Blog Post Month, Day 19: “Best of” post. Grab a post from your archives and repost it! Add a few sentences at the beginning to frame it. Why you chose it. Why you liked it. And why it should be shared again.NHBPM_2011_Day19

In May of this year, during Dblog Week, participants were encouraged to write a letter to someone about their diabetes. I chose to address my concerns from myself as an adult to myself as a child with diabetes. I was diagnosed at age two, so I’ve never really known a life without diabetes. I don’t have a before and after perspective, or memories of my diagnosis, or stories of transition. Based on my memories alone, I have always been a person with diabetes.

Still, diabetes has a lot of unknowns. In all of my years with diabetes, I have learned so much that was never shared by a doctor or a nurse, because so much of what we know about diabetes comes from living with it day in and day out. I wanted to share a story that I could understand, as a child, and appreciate throughout my life and years as an adult with diabetes. So I picked one of my favorites, and gave it a twist…

Oh The Places You'll Go Low(Click to read…)

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

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