Skip to content

Posts tagged ‘#dsma’

Drafting Off #DSMA: Diabetes Job Description.

I love tuning in to the diabetes discussions on Twitter – they are always insightful and make me see things through a different (insulin-colored?) lens. The final question of last night’s #dsma chat really brought out some interesting responses:

I wasn’t exactly sure what “position description for life with diabetes” meant, specifically, so I took it as a “job description” of sorts … and one that would vary for everyone:

Looking back, I’m grateful that my learning curve belonged mostly to my parents (which is good because I’m sure it was steep at the outset). Once I was ready to take over the responsibility of diabetes self-care, the disease was embedded solidly into the context of my life and the learning curve became more of a gentle, but constant, slope.

Reading the diverse responses from my fellow PWD on #dsma was an eye-opening experience. That’s what brings me back to #dsma every time, because there’s no set-and-standard answer to any diabetes-related query … we’re all unique and special pancreatically-challenged snowflakes. :)

Jamie summed it up neatly:

To join the diabetes conversation, watch the #dsma hashtag on Twitter on Wednesday nights at 9 pm EST. It’s a great way to wind down your night while building up our community.

What Do You Want to Talk About?

Last night’s #dsma chat was a particularly good one, because its intention was to generate discussion and feedback about what people in the diabetes online community (DOC) want to talk about.

Over the last ten years, the diabetes community has created some effective and supportive roots on (in?) the Internet. We are a vocal and passionate group of people (living with diabetes ourselves or caring for someone touched by diabetes) and the community seems to help people who are looking for their peers, looking to change something, or simply looking to share their stories. No matter what your level of involvement might be, the DOC is a place where you can find your footing.

So this question of “What do you want to talk about?” is a great one because it can help serve the needs/ hit the goals/ scratch the itch.

The evolution of the DOC is constant, and powerful, and we all have a chance to influence and shape it.  What’s important to you?  What do you want to talk about?

(And if you’re looking for more information on how to jump into the #dsma Twitter chats without losing your mind, check out this Diabetes and Twitter 101.)

I’m That Type.

Last night closed out a long week+ of travel, and it closed out with style at the JDRF TypeOneNation Texas event, where I was honored to be a presenter at the conference (talking about balancing diabetesHEY-O! – and getting the most out of your medical appointments).  More on those sessions once I dive into this basin of coffee, but I did want to share one of my favorite visuals from the conference:  this board –>

This was a board where people could write who they were at the conference in support of, and they could share their thoughts on the theme of the conference, which was “I’m the ______ type.”  Fill-in-the-blank sorts of things used to remind me of school, but now they remind me of some of my favorite #dsma chat nights, so watching this board fill up was eye-opening.

Perspectives (and hand writing) varied, but common threads were support and determination.

Mine was, “I’m the never let it define me type.”  But I could have filled that little blue circle out a dozen times with a dozen different answers.  What type are you?

 

 

What is a Diabetes Advocate?

Last night’s #dsma chat was a terrific one, focusing on how people in the diabetes community define “advocacy.” I wanted to summarize it here (at least the parts that resonated for me) because it could serve as a catalyst to inspire.

[For information on what the #dsma chat is, click here. And to learn more about connecting with people with diabetes on Twitter, click here.]

The community shared their advocacy “origin stories:”

And then we compared notes on what we’re most passionate about:

… segueing into reasons why that topic is something that touches our advocacy hot spots (sounds sassy …):

But of course, the road towards getting something done is often paved with obstacles. For many of the folks on the chat, “fear” played a huge role in holding us back:

So how do we, as the “diabetes ONLINE community,” remove the Internet component and bring advocacy offline?

Not everyone has to be an advocate for diabetes, and not every advocate raises awareness in the same way. But every voice matters, and no effort is too small. How do you advocate for diabetes? And how can we, as a community, help move your efforts forward?

HCPs and the DOC.

My type 1 diabetes is managed on a day-to-day basis by me.  I do my blood sugar checks, I make insulin decisions that correlate with the food I’m eating or the exercise I’m doing.  I have decided to make an insulin pump, a glucose meter, and a continuous glucose monitor part of my diabetes technology arsenal.

My endocrinologist helps manage my diabetes from a distance, but her input is important in the decision-making process I fumble through every day.  Her recommendations, education, and advice color my choices in debating things like Symlin, having children, clinical trials, etc.  She prescribes the drugs and devices I need/want/should have.  My endocrinologist went to medical school and, in any given week, sees dozens of patients living with diabetes (all types).  She’s (sorry for going full Rhode Island’er on you here) wicked smart.  And she helps put her more global perspective on diabetes in play with my myopic view of this disease, giving me a slate of smart options to think about.

Last night’s #dsma chat was a tough one because it seemed to inadvertently set up healthcare professionals as the “bad guys” and people with diabetes as the “wicked smart” ones.

Whoa, what?  I’d like to assume (and I think correctly so) that the question was more poorly phrased than poorly intentioned.  The discussion should have been about gaps between HCP and PWD communication and about building better HCP/patient relationships, not pitting one side against the other.  But, like it or not, it did open up a heated discussion with Tweets and emails and texts flying.  Paraphrased examples:

“They doesn’t listen to me.” 
“They dismiss the things that I say.”
” They judge me.”
“They don’t care about me.”
“I know more about diabetes than they do.”

Funny thing is, I’ve heard doctors and patients ALIKE say these same phrases.

I have had my share of excellent doctors in my life.  Compassionate, smart, reasonable healthcare professionals who have helped me maintain good health.  Ones who have encouraged my patient empowerment and who have celebrated with me the health I’ve achieved and have maintained.  I’ve also had my share of crummy doctors – apathetic, arrogant, uneducated healthcare professionals who didn’t do anything to move the needle on my well-being (except to potentially push it back).  It’s frustrating as fuck to be under the care of a medical professional who doesn’t seem to care, or who make you question the depth of their diabetes knowledge.

And I’ve been an excellent patient a lot of the time.  I’ve been on time for my appointments and armed with the data my doctor needs to help me make decisions.  I’ve had lists of questions and expectations, and my current medication list handy, and my goals outlined.  I’ve also been a crummy patient plenty of times, one who fuddles through the creation a logbook in the waiting room, with a chip on my shoulder already about the A1C result I know won’t be in-range, frustrated by the fact that my insurance company only covers therapies I don’t like, hating on diabetes and the fact that it makes me sit in more doctor’s office’s than I’d like, and arrogantly viewing my perspectives and needs on diabetes as the only one that’s “right” in that moment.

People are people, doctors and patients alike.  And, like all people, there are good days and bad days and good people and bad people and all the in-between people and moments not carefully structured in this sentence but you know what I mean.

The doctor/patient relationship is a delicate one, and isn’t easily housed by 140 characters, or within the confines of one disease state.  What seems to be missing, from my admittedly oscillating perspective, is respect for all parties on all sides.  I need to be more respectful of my doctor’s time, education, and opinion, and they need to be respectful of the exact same things for me.  One doctor doesn’t make or break my perspectives on how healthcare professionals conduct themselves, just as one patient doesn’t speak for us all.  I am the expert on MY own diabetes care, but there is no way I can claim to be the expert (or even remotely knowledgeable) on all things diabetes.  I have made many mistakes along the way, both in how I manage my diabetes and how I interact with my medical team, but I have to allow myself the chance to learn from those mistakes.  Same goes for my doctor.

This is life with diabetes.  My healthcare team AND I work together on my health.  There’s both an “I” and a “team” in “my diabetes,” and that’s the way I like it.

Strip Safely: Taking to Twitter.

(Note that the banner looks like a test strip.  Clever, eh?)

Wednesdays are usually a diabetes-heavy night on Twitter, since it’s the night that the #DSMA conversation takes place (at 9 pm EST – check out the #DSMA webpage for info, and for tips on joining the conversation, click through to this post on Diabetes and Twitter).  Lots of #diabetes and #DOC hashtags happening on Wednesday nights.

So let’s add one more to tonight’s agenda?  YES.

The Strip Safely website offers the following details on what’s at stake, and how you can get involved:

“Please Tweet Congressional leadership and your elected officials, letting them know how important it is for their aides to attend the Diabetes Technology Meeting: ‘Verifying the Performance of Blood Glucose Monitors Following FDA Clearance.’

Click the ‘Tweet about Meeting’ link next to a Member’s name to send a tweet asking them to send a staff aide to the September 9 Diabetes Technology Society Meeting. Not sure who your Representative is in the House? Use this link: http://www.house.gov/representatives/find/

All U.S. citizens, regardless of state, should tweet the Senate and House Leaderships.

Then, please, get creative and send additional positive messages to help the diabetes community build friends in Congress. (Include the hash tag #StripSafely.) Feel free to use this link to our letter for your tweets: http://www.stripsafely.com/?page_id=618

Diabetes isn’t partisan about whose life it impacts. We shouldn’t be partisan in seeking support for safe tools to say healthy.”

If you’re living in the United States, tonight is a night to raise awareness, and a ruckus, about how test strip accuracy, and reliability, matter to all people with diabetes.  Send your Tweets out between 8 – 9 pm EST, before #dsma.  Our elected officials need to know what matters to us, and taking to social media is one way to show them how many of us want – need – to be heard.

Partnering for Diabetes Change.

Will you be at the CWD Friends for Life conference? There’s panel taking place, discussing “Social Media & The Monster Under the Bed: The Latest Thinking on Fearing vs. Embracing Social Media,” focusing on efforts to validate the role of peer-to-peer support in diabetes management.  Here are some details:

I am proudly involved with this project, and am inspired by how the diabetes community supports each other, with that support contributing to improvements in all facets of our diabetes health.  The people involved in patient communities are what matters.  From an article I wrote in diaTribe a few months ago (but it still rings true for me today):

“Through connecting online, and in person, people living with diabetes have concrete proof that they are not alone, and that there is health worth fighting for, even after a diabetes diagnosis. Social media has saved lives in the diabetes community. It has helped people who are struggling with their diabetes to take control and improve their health. It shows people that there isn’t such a thing as a ‘perfect diabetic,’ but there can be an educated and determined one. It lets people know they aren’t alone in the ebb and flow of their diabetes management. It doesn’t encourage people to wallow in their troubles, but serves to inspire them to do the best they can, and to seek out the best healthcare they can find, both at home and in their doctor’s offices. A strong support system goes a tremendous way in making a difference for someone living with diabetes.

… I hope that the results prove what we as a community have found, but while we wait, we continue to share our personal evidence of the positive impact of social media. For now, the evidence is anecdotal. Eventually, the studies will show what we, as part of the diabetes community, have felt all along: personal connections between patients matter. The proof, for us, is in the people.”

I hope this discussion is the first of many.  If you’re at CWD, please sign up! And if you are off-site, you can attend virtually by signing up here.  For more information on Partnering for Diabetes Change, click here for a PDF.

{disclosures}

Follow

Get every new post delivered to your Inbox

Join other followers