Friends For Life

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

5 Things

5 Things

National Health Blog Post Month, Day 5: 5 things that changed my life. For better? For worse? List 5 things that changed your life as a patient, caregiver, or Health Activist and how.NHBPM_2011_Day05

Having had diabetes for over 30 years now, I’ve seen a lot of change happen. Some of the changes with diabetes have been subtle, like acquiring a Delica finger pricker to replace the spring-powered nail gun of a finger pricker that I was using before. Other changes have had a huge impact on my life with diabetes.

5 Things

#1: BG meter
When I was diagnosed in 1981, most people determined what their blood sugar was by peeing on a stick. Actually, it was a strip. But still, it was a stick. That you peed on! The problem with peeing on a stick (beyond accidentally spraying the bathroom with wee) is that it only tells what the range of the blood sugar is, and it’s often hours behind reality. Blood, on the other hand, is much more accurate, telling you what your blood sugar is right now, rather than what it was three or four hours ago.

After the peeing on a stick days, there were these strips that you would put a drop of blood on, wait a few minutes, then wipe off and see what range your blood sugar was based on the color of the strip. If you wiped the blood off too hard, sometimes the color of the strip would come off with it. It took some practice. I also learned that I could cheat and wipe it with an alcohol swab and the color would be lighter, indicating a lower BG than I actually was. I mean…wait…I never did that…honest. To save on costs, my mom would cut the strips into halves or thirds so that they would last longer. You have to be frugal with diabetes sometimes. We may or may not have also eaten cereal with a fork so that we could pass the milk on to somebody else.

I really don’t know when I got my first BG meter. It was sometime when I was in elementary school. I remember it was huge, and it took several minutes and a huge blood drop (or two, or three) to discover what my blood sugar actually was. Today, our meters are pocket-sized, only taking 5 seconds or so to analyze a very small sample and report the results. It’s a beautiful thing! (Except when the numbers on the screen are less than desirable, but that’s a different blog post.)

#2: Insulin pump
My insulin pump has granted me more freedom with my diabetes than any other single advancement. It allows me to be able to do what I want and eat what I want on my schedule (or lack thereof, if I so choose). I love it, and I don’t ever want to be without it (YDMV).

#3: CGM
I’ve had my continuous glucose monitor for a little over a year now. I’m still not the greatest at wearing it regularly, but I absolutely love it when I do. I love that it helps me to keep my BG’s closer to normal, helps warn me when I’m going low or high, and often prevents disaster. My CGM is integrated with my pump, and I love having these two devices working simultaneously to give me data that I can use to improve my diabetes control. Would you look at that…I think I just motivated myself to go put in a new CGM sensor. Go me!

#4: Connecting to the DOC & PWD’s
There is something very special about the Diabetes Online Community, and that is all the people with (and without) diabetes in it. I have met some amazing people in this community, and I have learned so much from them about sharing my life with diabetes. I have also learned all kinds of tips and tricks, such as what tape sticks best to someone made of awesomesauce. Between my laptop, iPad, and phone, I manage to pretty much stay in contact with the DOC 24/7. Beyond the folks the make up the DOC, my favorite thing about it is that no matter what time it is, where I’m at, or what I’m doing, I can always reach out (typically via Twitter) and get a response. It’s awesome!

#5: Friends For Life
Heed these words: If you have never been to a Friends For Life event, then you need to find some way to make that happen. I went for the first time last July (2011), and it was life changing. I got back home and immediately put my time off on the calendar to go again next year. Friends For Life is one of the only places where you can walk around with an insulin pump hanging on your pants pocket, or check your blood sugar in a crowded room, or ask, “How many carbs are in that?” and not get even so much as a sideways glance. It’s a rare opportunity to be in the majority of people with diabetes, where people without diabetes are the minority. Plus it’s an amazing opportunity to meet friends from the DOC, and bond in real life over giant M&M cookies and a shared affinity for plaid.

Disclaimer: The kind folks at OneTouch did not pay me or solicit me to write about or mention their Delica device. That said, if they want to send me some fresh lancets, that would be awesome.

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