DSMA

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.
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

Imagine - photo courtesy of Allison Blass

Imagine

Every Thursday night Diabetes Social Media Advocacy Live (DSMA Live) comes online, where various topics relating to diabetes are discussed. Last week, the special guest was Professor Jean Claude Mbanya, President of the International Diabetes Federation (IDF). He spoke about many diabetes advocacy and global diabetes initiatives that are going on worldwide, the most pressing of which include:

  • O is for Outrage
    The topic of the United Nation’s 2nd summit on global health issues is non-communicable diseases (NCDs), of which diabetes is one. Create a postcard right now to send to United States President Barack Obama, and ask him to represent us at the UN Summit on September 19-20, 2011. The IDF is taking care of all of the shipping costs. (P.S. – I don’t care what political affiliation you are or whether or not you approve of President Obama. This isn’t political. This is necessary.)
  • I Agree
    Do this now. Just click the “I Agree” link above. Just by doing that, you are telling the IDF, the UN, and the world that you support essential care for people with diabetes. People should not have to choose between starvation and living life with diabetes. Not anywhere.
  • Life For A Child
    Saving the lives of children in the developing world. As Professor Mbanya said in his time with us on DSMA Life, “No child should die from diabetes.”
  • World Diabetes Day
    November 14 is World Diabetes Day. Wear blue on this day, attend or host an event, and increase awareness of diabetes worldwide.

Something that really jumped out at me was what he shared about the stigma of diabetes, especially in less fortunate countries where oppression, starvation, corruption, overpopulation, and poverty reign.

Professor Mbanya shared with us the story of a man whom he met in a hospital that had four children, one of which was a daughter who had type 1 diabetes. Despite what help he could get from the hospital, the man was always sad and never smiled. One day Professor Mbanya went away on a trip, and when he returned and happen to run into the man, he was happy, and had a smile on his face. Professor Mbanya asked him, “Why are you so happy?” The man answered that his daughter with type 1 diabetes had died. Professor Mbanya, unable to understand why the death of a child would bring a smile to the father’s face, asked, “Then why are you smiling?” The man answered, “Professor, it was better that my daughter should die, so that the rest of the family can live, for when she was alive we couldn’t eat, the other children had to drop out of school, and now I have changed and put on weight because we are able to eat.”

Imagine.

Among some tribal people in the undeveloped world, diabetes is not viewed as a medical condition, or a sickness, or even a disease. It is viewed as a curse. Professor Mbanya explained to us that in those cultures, the family of a child with diabetes is viewed as having the disease as much as the child, where parents take their children and commit suicide or infanticide because of the profound negative stigma of diabetes.

Imagine.

In 1979, Chinese leader Deng Xiaoping enacted the One Child Law for urban areas of China in an effort to control population. The basic premise of the law states that couples are limited to only one child per family. However, if that one child develops type 1 diabetes, then an exemption is allowed so that the parents may essentially try again, because the expectation is that the child with diabetes will die.

Imagine.

Professor Mbanya said it, and I couldn’t agree with him more: “No child should die of diabetes. All children should have adequate access to insulin, monitors, supplies, and education needed to have a happy and quality life.”

Imagine.

Imagine - photo courtesy of Allison Blass

Photo courtesy of Allison Blass