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Uncontrolled Diabetes – Honestly I Don’t Care

Last night during the weekly #DCDE Twitter Chat (Tuesdays at 9 p.m.) there was a mention of how HCP’s use the diagnosis code of “Uncontrolled Diabetes” and I tweeted that I don’t really care about that and don’t care what you call it.

I understand that language matters and I totally get it. I, personally, am not really effected that much by the language and wording used in the diabetes world. Myths, yes. But specific words and language, I don’t let it bother me, because at the end of the day, it’s just a word or a phrase. It’s sort of like the old saying from elementary school – “Sticks and Stones may break my bones, but words will never hurt.”

There’s a few reasons why I don’t care about the phrase “Uncontrolled Diabetes”.

First, it’s just a phrase, it’s not that big of a deal. “When I go to get blood work and the receptionist sees ‘uncontrolled diabetes’ they think I’m not working hard to control my diabetes and it undermines all of my hard work.’ Well, guess what? I don’t give a fuck what the receptionist thinks. Nor do I give a fuck about what anybody else thinks when they see “uncontrolled diabetes” I know the work and effort I’m putting in, so I don’t care what others think. I know who I am and that’s all that matters.

Second, what would you rather it say? A Diagnosis code that says “Trying very hard, but still needs some work” or “they really do put in a lot of effort, but they just need a bit more tweaking to keep their BG’s in range for a longer period of time.” I’m just curious as to what the better phrase would be.

Third, and let’s be real here. It’s not controlled. I have no problem being a realist and not trying to fluff myself up. My diabetes isn’t under control. I do what I can to manage it and I can be doing a lot better. More exercise, better eating habits, more weight loss, etc. But when you take a look at some of my CGM graphs and you see roller coaster after roller coaster, guess what, that’s not controlled. So, unless your blood sugars are staying perfectly between the top and bottom line limits that you and your HC team put together, to me, that means it’s not in control.

Here’s an example using a different subject.

If you are driving a car and you are in control of the car, then that means you are staying in your lane and not crossing over the lines into someone else’s lane. If you are driving the car and keep crossing over the lines and are almost hitting other cars because you’re in and out of your own lane, you are an out of control driver…. or an uncontrolled driver. Does that mean you’re a horrible driver? No. Maybe you’re just learning or you’re distracted or maybe it was dark and you didn’t really see the lines that well. All things that you could improve on. But, until you do, you’re still an uncontrolled driver.

I don’t want to undermine anybody’s thoughts and feelings on this topic. If you are outraged by the phrase, then that’s fine, this is just simply my view of it. I am just not a person to be effected by words or phrases that are just used to describe something. I know who I am. I have so much self-awareness of what I am and what I’m not, that it doesn’t matter to me that an outsider sees a diagnosis code and makes a judgement on me.

Peter Sheehan Diabetes Care Foundation

A few weeks ago I received an email (which I receive a lot of them with pitches about diabetes), but this one I found a little bit more interesting, so decided to give it a second read. The email was about a crowdfunding opportunity for the Peter Sheehan Diabetes Care Foundation. The mission of PSDCF is to:

Improve T2D care and prevention for at-risk communities, provide education to prevent the onset of T2D and its complications, and organize forums enabling an exchange of scientific ideas to further the understanding of T2D.

I am all for any one that is trying to spread awareness and education for diabetes.

You can check out their crowdfunding page here – https://www.youcaring.com/peter-sheehan-diabetes-care-foundation-503231

You can also watch their YouTube video below:

 

How I Became an Empowered Patient

Before I get into the how I became an empowered patient, I want to briefly talk about why I became one. First, what is an empowered patient? This question was brought up during the #ChatActChange #DSMA last Wednesday. To me, an empowered patient is someone who takes an active role in managing their illness, disease, disorder, etc. For me, that is taking an active role in managing my diabetes, not just from the “I test my blood sugar 6 times  a day” perspective, but from a more in depth one.

For example, I decided one day that just simply listening to what my endo and educator was telling me was not enough. I wanted to go and read more about these studies that they were talking about so we could have an actual conversation during our visits and it not just be a one way instructional visit. I wanted to not just do what I was being told to do, but I wanted to know why I was being told this and I also wanted to know if this really was the best thing for me to be doing.

Once I knew that I wanted to be a bit more involved, it was easy from there. I started to read more and consume more. I started to read about more of the science behind diabetes. I began to read as much from the ADA Scientific Sessions free posters that I could. I admit, 90% didn’t make sense, but I took notes and wrote things down and knew that I would go back later and start researching more of those words.

I began to learn more about different products and medications.

The very first time that I went into a visit with my CDE and I said, “hey, I read an ADA Scientific Sessions poster on the effects of wheat and gut bacteria….blah blah blah” I could see the look in her eyes like, wow this guy knows his shit. From that day forward, I had a lot more respect from my CDE as a patient and had a lot more involvement in my management.

Now, my visits start off with a conversation. My CDE asking me to evaluate myself and recommend my own changes and then she chimes in with her input and we come to a mutual decision on the next plan of action.

Having that feeling of knowing that I have the respect from my doctor has completely changed the way that I view my healthcare team. And I think it would for you also.

Social Media and Diabetes Educators at AADE

I had the honor of attending the AADE Conference in Orlando, FL.  I drove up from the West Palm Beach area Wednesday morning to attend the session titled Social Media-Technology Tools for Online Communication that included Cherise Shockley, creator of DSMA and pure awesomeness!

Unfortunately, due to a bit of traffic in the Orlando area, I entered the discussion about 15-20 late and showed up to a pretty packed room. My very first thought was, “Awesome, there are a lot of educators that are interested in social media.” That gave me a chill down the back of my spine from the very beginning.  Just by attending this session, these educators are taking a step towards either beginning or improving the way they practice and deal with patients in the world we live in today.

The session included a lot of how-to’s for Facebook and Twitter. In fact, in the later part of the session, Cherise provided a step by step (click here, click there, type this) walkthrough of going to Twitter.com and creating your Twitter account. She also walked through the steps of following a group of people, how to search for people to follow and then sent out her first tweet (with that account).

There were questions from the attendees about whether or not to create a personal Facebook / Twitter profile or a professional one, do they use their name or a persona, do they allow patients to follow / friend their personal account, etc. These are all very valid concerns, especially when HIPAA becomes involved (which, seriously, it’s 2014, let’s live like it’s 2014 and not 2004).

The best advice was, “Do what you feel comfortable doing.”

I second that response and think that is the best advice for not just diabetes educators, but anybody that is creating a social media account. Don’t just do it because everyone else is doing it. Don’t just over-share on social networks because everyone else is.

Do what you are comfortable doing!

There was another response from an attendee that I wasn’t able to get the name or social handle for (word of advice, when introducing yourself at conference from now, give your name and Twitter handle), but she said, “Don’t be in your diabetes educator role online.” Meaning, just be a person. Be someone who is listening, who can talk, who can comfort, who is not just someone looking at a data point, but providing real support where and when it’s needed.

Social Media Tools

There were several tools that were mentioned to help you manage your social media accounts, but the main one discussed was HootSuite, which I am a paid user of and absolutely LOVE it. I manage over 40 social media accounts between clients and personal and without HootSuite, I don’t know where I would be. It was recommended to not use the paid version, which is fine if you only have 1-2 accounts that you are managing and I totally agree with that. However, for more advanced users, those that want data and analytics, I would highly recommend the $9.99/mo Pro Version of HootSuite.

There was a little part of the discussion that was used to talk about LinkedIn and creating a profile there for networking. I could go on a lot longer here just about LinkedIn, but I will save that for another day (or maybe another blog). The social media agency side of me feels there is a lot more that can be done with LinkedIn that most don’t realize.

Social Media Advocacy

Other examples of the power of social media that were discussed was Strip Safely, which at first, Bennet Dunlap did not have much to say, but with a little Twitter encouragement, he decided he would put in a few words and share some information about the Strip Safely campaign to Support CDE’s.

One announcement that was made during the session that is important is the new date set for DSMA for Parents with Kids with Type One, which is September 8, 2014. Put it on your calendars now.

Social Media Time Management

Another area of concern that seem to be in the room was the time management side of using social media. Listen, as somebody who owns a digital marketing agency and manages social media accounts for multiple businesses, this is the number one excuse I hear, “I just don’t have time to do it.” There is just so many tweets and I don’t know where to start, and many more phrases.  I get it. I can spend 10 hours a day on social media some days, but realistically, we can’t do that. But I am willing to bet, we can all find 20-30 minutes in our day to visit a social media site. And if you can’t….. then don’t! Once again, that goes back to doing what you are comfortable doing.

Hashtags are probably one of the best ways to help you manage your time on Twitter. If you want to just focus on reviewing tweets from people that maybe are having issues with high / low blood sugars, then the #bgnow hashtag may be great for you. If you are looking for people who use a Dexcom because you have a patient later today that you know will have some questions about their CGM, then you can use the hashtag #dexcom. Twitter Search is one of the most important tools in all of social media.

My biggest word of advice is to not stop using Twitter, Facebook, LinkedIn or any other social platform because you don’t understand it. If you allow yourself to learn, you will. The more you use it, the easier it becomes. And don’t hesitate to reach out to somebody who does know what is going on.

This was not the end of the discussion of social media and diabetes education. There was another session later in the conference that included a few of our own DOC members.

That session deserves its own post.

Finally Attending AADE

I have been wanting to attend the AADE conference for about 5-6 years now and I just haven’t been able to attend. This will be my first major conference that I will be attending as “Media”  When I attended Scientific Sessions and Friends for Life (once a piece) it was as a vendor for a company that I used to work for.

One of the many reasons that I started my own company was so that I would have the freedom to attend these conferences and not have to worry about having the time off of work.  Unfortunately, during that same time period and building a business, I haven’t had the financial freedom to attend these conferences.

Since AADE is in Orlando, I am just a quick 2.5 hour drive away and don’t need to worry about a round trip airline ticket which saves me a lot of money, however, the hotel is still an extra $300-400 that needs to be budgeted for.  I decided last year that I will be attending this year’s AADE and I just kept putting a little money aside every month in order to know that I would be able to attend.

I highly recommend this to anybody that has interest in attending diabetes conferences.

Who all is going to AADE? I’d love to meet up with as many of you that I can. Orlando is basically my home, away from home (away from home, since I technically still consider PA my home), so if you need any tips for places to eat at or see, let me know.

YMCA Diabetes Prevention Program

Last week I was contacted by someone at my local YMCA because they were given my information from my endo (she’s not an endo, I don’t know her exact title, but she’s who I see at the endo office). As I’ve written about before, my endo office is great with sharing information that I give them about diabetes inititiaves and outreach programs going on, which is why they put me in touch with the Y.

Last Friday I had the chance to meet with Robin from the Y to discuss the Diabetes Prevention Program. If you have not heard of this program, no worries, because I didn’t either until Friday when I stepped into the office. Basically, the program helps those that have a high risk of developing Type 2 diabetes and works with them to reduce their risk for developing T2D (or help slow it down) by making improvements to their overall health (eating, exercising, lifestyles, etc.) This program is based off of research done by the NIH that these changes in lifestyle can help reduce the numbers of Type 2 Diabetes diagnosis.

Before anybody tries to jump all over me, I know that diet and exercise is not going to stop everyone from getting Type 2 Diabetes, but we all do know that these changes help prevent those that are at risk. (more…)

The Biggest Loser Fails Again

the-biggest-loserI wrote at the beginning of the new season that I was going to watch the Biggest Loser this year because I never had really watched it, but thought that it might help keep me motivated. It has definitely done it’s job in that area. Seeing some of the contestants reach the 100 pound weight loss mark and seeing others at the beginning of the season and realizing that I now weigh more than them puts a little spark in me.

(more…)

Life of a Sugar Patient

That title sounds a little weird doesn’t it?  No, I am not changing the name of my blog to that.  That phrase is a term that brought two visits, yes, not just one, but two visits to my blog last month.  WTF does that even mean?

I’ve decided to try and get a little creative about this sugar patient thing and also have a little giveaway. Leave a comment below with what your definition of a “sugar patient” is and a randomly selected commenter will receive a brand new Glooko cable.

Is a sugar patient somebody with diabetes? Somebody who is allergic to sugar? Somebody who doesn’t eat enough sugar? Somebody who is made up of sugar?

Good luck and happy creativeness

The School of Hard Knox – Guest Post from The Poor Diabetic

Today’s post is a guest post from my good friend The Poor Diabetic
.  If you haven’t read The Poor Diabetic before, than you are missing out.  Ronnie’s posts are fun, educating, and just down right awesome.  I met Ronnie for the first time out in San Diego for the Roche Social Media Summit.  After speaking with him, I have been wanting a guest post from him since.  So here we go, on the subject of diabetes education.

I have been a diabetic for about 14 years and the real life experiences that come with that has to account for something when it comes to diabetes education doesn’t it?

Yet a newly diagnosed diabetic is more apt to listen to a first year medical student or a nurse practitioner than they would me right?

The reason is obvious, they purport themselves to be medical professionals and  I do not, In fact I like many other diabetic blogs you read go the further to proclaim this in bold print. The reasoning behind this is obvious as well, someone’s health is of primal importance and giving health advice should be left to said professionals. Woe unto you if you give  medical advice with adverse critical results, it is not just a moral issue but a criminal one as well.


But there is something to be said about life experiences when you are living with a chronic disease like diabetes.

It would be an understatement to portray the lack of diabetes education as a mere lacking.

Truth be told most if not many newly diagnosed patients have little if no knowledge of diabetes beyond the passing fancy and I would venture to say that this knowledge one has is fifty percent fact and fifty percent lies, myths, misconceptions, rumors, or any of the many unknowing words you might use to characterize it.

The learning curve after a diagnosis is steep at best and the learn on the job mentality if you may while it might be wrong is the accepted norm.

If I was to share a typical diagnosis it would be as though I was reading from a prepared script.

“ You have diabetes, you need to check your blood sugar using this machine, watch your carb intake, exercise and good luck to you” make an appointment with a nutritionist for your diet adjustments and a nurse will show you how to use your life saving gadgets other than that you are on your own and If you have any questions then I will be happy to answer them on your next visit six months from now. goodbye and good luck” This was my diagnosis story and am sure it was yours as well with a few minor variations.

I was left with very little in alternatives and back then the web was at its infancy, there was no diabetes websites or education resource or the DOC to say the least.

I learned diabetes management the hard way and even with all the online resources available today diabetes education still has a long way to go just to be proficient.

It would be naïve for me to say that a solution to this problem would be one broad stroke of the brush, the problem is a bit complicated than that. But I have one tangible and easily attainable solution.

The Medical profession is overworked  this we know to be a fact, it is for this reason and many others that most newly diagnosed are left to fed for themselves as it may.

These new diabetics are inevitably going to get online to find information on diabetes so why not steer them to the DOC and real diabetes information online.

The benefits for this process will go along way in laying the ground work for a  real diabetes education