Jane K. Dickinson, RN, PhD, CDCES

Focusing on success in diabetes

Posted on July 16, 2018 by janekdickinson

Uncontrolled, poor control, poorly controlled, bad control, and even their counterparts good control, well controlled, and so on. These words, along with compliance and adherence, comprise the language of judgment, shame, blame, and guilt in diabetes. They focus on failure. And it’s time to change this.

There is a language movement going on in diabetes. It’s actually been going on for decades and it’s finally getting some traction. We have a paper jointly published by the American Association and Diabetes Educators and the American Diabetes Association. We also have resources for health care professionals and lay people, and another one for media writers.

People are blogging about language, speaking publicly about language, discussing language, helping industry with language, and generally the word is getting out!

I even heard someone say not too long ago, “compliance, adherence, and diabetic – no one uses those words anymore.” I am thrilled that this person has observed a change in the language of diabetes. I have too, in many circles. Unfortunately the negative, stigmatizing, judgmental language that contributes to failure and perpetuates a failure-based health care system is alive and well. And we need your help changing that.

Here’s what you can do:

become aware of the language you see (in print), hear (others saying) and speak (yourself!)
think about how it makes you and others feel
work to change it

Changing our words is relatively simple – it takes time and attention, just like any new habit, and eventually it becomes natural. It doesn’t cost anything – what else can you think of that makes a huge impact and is free?

It’s much easier to focus on success when we use positive, empowering, strengths-based messages. Try it and see/hear!

Trekking Poles

Posted on July 13, 2018 by janekdickinson

I finally caved and bought trekking poles after a PT friend was hiking with me and suggested poles would help me with knee pain going down hill.

Here’s an informative article about poles. I’m not advocating this particular brand of poles; I am simply advocating for using poles when hiking. Supposedly poles make hiking easier on your knees and increase your whole body workout by quite a bit – win win!

I’ve used my new poles twice now and will report that a) I did not have pain in my arms (as I feared), b) I did not have pain in my knees (although I haven’t tried them on a very steep hike yet), and c) the workout did seem slightly less hard. I went for a hike last weekend and was shocked that we’d been gone 2 hours. Felt like much less! I’m also told poles help decrease swelling in your fingers while hiking – makes sense.

One lesson learned: when using poles I have to carry water on my back and not in a hand-held water bottle. I can deal with that.

Posted in health information | Tagged diabetes, exercise and diabetes, hiking, trekking poles | Comments Off

Surgery and Diabetes

Posted on July 6, 2018 by janekdickinson

I am avoiding surgery as long as I can; hopefully I never have to have it (again). Sometimes, however, surgery is unavoidable and that’s OK! I had two c-sections and I don’t regret them at all.

If you can safely avoid surgery, say, by going to physical therapy, modifying your workout, wearing a brace, do it. On the other hand, sometimes surgery is the best option, or even critically necessary.

While surgery is more risky for people with diabetes (this article explains further), when surgery is necessary, there are things you can do to set yourself up for success.

get your A1C into a safe range (discuss this with your health care provider)
wear CGM and/or check your blood glucose frequently and stay in touch with your body and your numbers
get and stay active with cardiovascular and strength workouts
use techniques to manage your stress and focus on healing/health
eat foods that set your body up for success and healing

When there is no time to prepare for surgery

stay positive and focused on healing
communicate openly with health care providers so they know the best way to care for you

Regardless of whether surgery is expected or sudden

pay close attention to blood glucose levels immediately following surgery to maximize healing and avoid infection
go to physical therapy (as needed) and get active as soon as possible
forgive yourself and move on (don’t beat yourself up if your numbers aren’t ideal)
expect the best (don’t fear the worst)
anything you do in a positive direction is worthwhile (don’t give up)
you are a good person (don’t let anyone make you feel judged, shamed, blamed, or guilty)

Posted in about diabetes, diabetes care, diabetes motivation | Tagged attitude, diabetes, preparation, surgery | Comments Off

Diabetes in a failure-based system

Posted on July 2, 2018 by janekdickinson

“Health care is a failure-based system,” is what an MD said to me recently.

I can think of many ways we are working with/in a failure-based system. The language is just one. The judgment, shame, blame, and guilt that run rampant in the language of health care, specifically diabetes, is not just based on failure; it leads to failure.

If we were to adopt a strengths-based system instead, one where we focus on what people are doing right, what they are doing well, or, quite frankly, what they are doing at all, we are more likely to find engaged patients who trust their providers and care about taking an active role in their health.

Everyone wants good health. Everyone wants to feel good. When the system breaks us down visit after visit, insurance phone call after insurance phone call, negative language upon negative language, it’s easy to lose sight of what we truly want. It’s easy to throw in the towel.

Some say “compliance” and “diabetic” are words that have gone away – no one’s using them anymore. Not true. They are alive and well, along with “adherence,” “control,” “test,” and even “fail.” There is, however, a language movement taking place right now, and I know it’s possible to change the language of diabetes. We can change the stigma and biases that are out there about the disease and the people living with it.

Changing our words is relatively easy. Changing the system is much harder. Until we truly change, people with diabetes will still feel shame, blame, judgment, and guilt. The way we talk about diabetes makes a huge difference, not just to the individual, but within the system. If we’re ever going to have a health care system that is focused on success, we have to acknowledge that #languagematters.

Posted in about diabetes, diabetes advocacy, diabetes-related language | Tagged change, diabetes, failure, strengths-based | Comments Off

Analog insulin

Posted on June 26, 2018 by janekdickinson

I read a tweet the other day that had me pretty confused about analog (analogue in countries other than the US) insulin. Here’s the scoop on analogs, just in case anyone else is confused.

Once upon a time some awesome scientists spent a hot, sweaty summer in a lab in Toronto. They were (finally) able to isolate and extract insulin, and purify it enough to inject it into humans. That was what we came to know as “Regular” insulin. Over the years smart people added proteins to make that insulin work more slowly (Lente, NPH, Ultralente), and they tried injecting less frequently, then more frequently, always attempting to replicate what the amazing body does on its own.

Then one day they figured out how to make insulin just the same as human insulin (Humulin and Novolin) and there was no more need to get insulin from animals. A few years after that they used “recombinant DNA” procedures in the lab to create “analog” insulin. This means they made some change(s) to the insulin (protein) structure in order to make it work faster (Humalog, Novolog, Apidra) or slower (Lantus, Levemir). These analogs have made life somewhat better for those of us who take insulin, because we don’t have to wait 30-45 minutes after insulin and before eating. We also have smoother coverage throughout the day and night.

Now we have even longer acting analogs (Tresiba and Toujeo) and we’re hoping for even faster acting ones (soon??). We’re also hoping that all people who need it will have access to the best types of insulin available.

Thanks to those who first made insulin available; thanks to those who have fine-tuned the types of insulin we have today; and thanks to those who are advocating for more reasonable insulin prices.

Posted in about diabetes, diabetes medication | Tagged analog, analogue, diabetes, insulin | Comments Off

Trying something new

Posted on June 21, 2018 by janekdickinson

Well, I finally did it. I started using CGM (continuous glucose monitoring). While this technology became an option in 1999, I have been known to say “Call me when it’s perfect” for the last couple decades. I just wasn’t interested in adding another step to my daily routine – a routine that works for me.

I realize that CGM is still not perfect. It is a lot closer, though! And truth be told, urine glucose monitoring and blood glucose monitoring weren’t/aren’t perfect either (thanks to the colleague who reminded me of that recently).

So here I am on CGM for the first time in 2018 at the age of 50. Something about old dogs and new tricks come to mind? I’m not old.

My observations so far (and one of them is not “why didn’t I do this sooner?”):

we need faster acting insulin
I experience pretty flat lines – sometimes they are where I want them and sometimes not – but who knew they were so flat?
I still have some of the same questions I had without CGM
I was already pretty good about bolusing at least 10 minutes prior to meals (or 15 or 20) – do I need to wait 30??
I can see how one could become obsessed with the information
we need faster acting insulin

Not everyone is ready or able to use CGM for a variety of reasons. Access is still a major issue. I look forward to CGM being “perfect” and accessible to all. I agree that using CGM in drug studies makes the most sense. This is a great tool and I’m excited about it at 8 days in. I do wonder if the excitement will last. I’m guessing that once I learn to trust the technology and give up my meter habit, I will be all in. I started poking my fingers in 1985 (first home meter was available in approximately 1981) and doing it very routinely in about 1995. There’s still hope.

Posted in about diabetes, diabetes products | Tagged blood glucose monitoring, CGM, change, continuous glucose monitoring, diabetes | Comments Off

The insulin pricing concern

Posted on May 23, 2018 by janekdickinson

A few months back a reporter from our local newspaper interviewed me about the insulin pricing situation. I will admit I felt foolish because I didn’t know a lot about it. I mean, I know that insulin costs too much. I know that people have died because they were rationing insulin and then ran out. I didn’t, however, know the inner workings of pricing pharmaceuticals.

I am still not an expert on this (by the way, there is so much going on in diabetes at any given time that it is impossible to be an expert on all of it – just like managing diabetes, we do the best we can). Anyway, I’m trying to pay more attention. I heard a talk on this topic in April and yesterday I read this helpful article.

I hope the people who have the ability to change this situation will make change happen. While I may not be able to do that directly, I can stay informed and help others do the same. I can sign and share petitions like this one.

Let’s do our part to establish transparency in insulin pricing. Let’s help those who do not have affordable access to insulin. Let’s make sure no one else dies from lack of insulin. #insulin4all

Posted in about diabetes, cost of diabetes, diabetes advocacy, diabetes medication | Tagged cost, diabetes, insulin, pharmaceuticals, pricing | Comments Off

Objection! Leading the Patient.

Posted on May 21, 2018 by janekdickinson

At a follow up visit with my son, the first provider ushered us into the room asking leading questions like, “You haven’t had any pain recently?” and so on.

The other provider came in the room asking: “You’re not having any pain?” “You were able to play sports no problem all season?” “It doesn’t hurt when I press here?” and so on.

When they left the room I commented on this “negative question” practice to my son and asked him if he’s comfortable answering whether he agrees or disagrees. He got annoyed with me and said, “Mom, they all talk like that, except for the PT – she doesn’t do that” (I had to include that last part – yay, PT!!).

Aside from the fact that I do a lot of debriefing with my kids after health care visits (ugh), WHAT?? Why do “all of them” do this? We got talking about it last night and I suggested that it makes visits go faster. If they asked open ended questions (like we teach and discuss in class all the time!) patients could take a long time answering and explaining their situation/experience. I get that. My husband thinks it’s purposeful – they are trying to force people to contradict them, so to speak. So if the provider says, “you’re not having any pain?” the patient would have to say, “actually, I am having pain.” That seems a little twisted.

Whatever it is, we – the providers – need to stop. And we – the patients – need to be prepared and comfortable answering honestly and completely, regardless of how it’s asked. I recommend that providers simply state up front, “I only have 15 minutes with you today, so I’d like to get as much information as I can.” Then ask, “Are you having any pain?” etc.

Posted in diabetes advocacy | Tagged communication, diabetes, health care providers | Comments Off

International Diabetes Federation

Posted on May 9, 2018 by janekdickinson

Are you aware that there’s an international organization focused on helping people with diabetes?

The International Diabetes Federation (IDF) has initiatives for professionals and people living with diabetes. They even have a philosophy on language! They also partnered with the World Health Organization to create World Diabetes Day.

Right now the IDF is working on awareness and knowledge of heart disease in people with type 2 diabetes. If you have type 2 diabetes, please consider taking a few minutes to complete this survey.

Posted in diabetes advocacy | Tagged advocacy, diabetes, heart disease, International Diabetes Federation | Comments Off