“I have given you the basics, how you put it together is the challenge. You’re going to learn more about yourself than most people ever do, which is good. There will also be times when you wish you never had diabetes, which is perfectly understandable. There will even be times when you’ll want to turn back the clock and pretend that you don’t have diabetes. This will not work no matter how hard you try. Putting it together on a daily basis is your challenge and your journey begins today… Don’t try to be perfect. Try for good control, to be sure, but perfection lasts a moment and diabetes lasts a lifetime.”
~Journey of a Diabetic, Lawrence Pray


That quote is the first page in a notebook that’s probably close to three inches thick. I thought about it strongly enough to pull it out after reading David Spero’s blog entry last week about sick days.

Right after the opening page containing the above quote are several pages detailing instructions for sick days: when and why to contact the doctor; confirmation that you need to take your insulin or oral medications even if you cannot eat; a calculation for how much more insulin to take if you’re above a certain blood glucose level; what to do if you can eat, including sick-day food suggestions; what to do if you cannot eat; and more.

But I don’t want to talk about sick days: I want to talk about information — or lack thereof. How can you meet the challenges of diabetes if nobody is helping you with the basics?

Obviously, I don’t have so much information on sick days alone that the pages stack three inches high. Pretty much everything is in that notebook. Leafing through, I see articles on injection technique, diagrams of insulin action, an explanation of the HbA1c, nutrition information for fast-food restaurants, traveling with diabetes, blood glucose monitoring, a list of famous people with diabetes, serious information, funny information, cartoons, and more.

None of it is anything I sought out. I wouldn’t have known what to look for. At that point, I’d known for nine years I had diabetes, but was so unknowledgeable, I was even unaware there were diabetes magazines. The information was handed to me by Sonja, my first certified diabetes educator (CDE), back in the mid-1990’s. It was in the days of Regular and NPH insulin, of a relatively new addition to food packaging called the nutrition label (yes, there was information on how to interpret those, too).

Sonja was a registered nurse, a former US Air Force officer who had served in Vietnam dealing with fighting men trying to get the heck outta the jungle on a psychiatric discharge (think Corporal Maxwell Q. Klinger in MASH). As you might imagine, the petite blonde didn’t take any guff and I would learn about diabetes or else! She told me about it, she showed me containers of products she recommended, then she dove into her extensive files and gave me information on what we’d discussed. I love that woman and I’m glad the endocrinology group I went to had an education section. Where would I be without her guidance?

I’m often appalled when I read posts on the online support group I belong to asking how to adjust their insulin, what to do about changing the timing on their insulin dosages when traveling across several time zones and such.

Don’t those people have doctors? Don’t their doctors know about diabetes?

Maybe it’s the latter. I had this family practice doctor for a very short time (one visit) once who insisted on doing a fingerstick check. “OK,” I said, “but I just ate some cookies.” (It was in the days of Regular and NPH and I needed to eat some carbs during a Regular peak to keep from going low.)

As if that weren’t enough to make him see red, he decided I did NOT need to go to an endocrinologist (they let me eat cookies, after all). “You’re MY diabetic,” I recall him saying.

After seeing the steam coming out of my ears after that statement, he adjusted his thinking to, “OK, maybe once a year to have your insulin adjusted.”

“But I’ve already adjusted it myself twice this week,” I told him.

“Where did you learn to do that?” he demanded.

“They taught me,” I said.

As I said, I went to him “for a very short time.”

Oh. The cookies? Enough vanilla wafers to equal 15 grams of carbohydrate. Whoopee.

As for traveling, those of you who’ve been reading my blog long enough know that I tend to do that as often as possible. In fact, the first question I asked my first endocrinologist was, “can you get me to South Korea and back OK?”

I heard of a doctor here who told a man: “You have diabetes. Watch what you eat.”

Now, that’s real handy. He might have well have said, “You have a condition that’s going to be with you for life and that can cause all manner of complications, but I’m not going to refer you to the diabetes education center where you can learn how to control it.”

I’m going to continue this theme next week. In the meantime, if you’ve had problems getting diabetes self-management education, or if you are unable to get help from your doctor’s office or education center, what appear to be the stumbling blocks? What do we need to help us deal with diabetes?

How can you “put it together,” as the opening quote says, if there’s nobody to help you do it?

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  • Deb

    The only formal diabetes education I’ve gotten has been by “cheating”. My husband was diagnosed way before I was. When his primary care finally sent him to an endocrinologist because his A1c was 10, I went with and had some good information from the nurse. When he was sent years later to a new endo because his A1c was back to 10, I was already diagnosed. Since significant others were invited to sit in on the series of diabetes education sessions, I was a little more official, though it still wasn’t mine.
    But the time when I really really could have used some education was when I was diagnosed with prediabetes. No literature, no education, and there weren’t any books on prediabetes at that time. No surprise when I was diagnosed because I had no help in avoiding it.
    Since then I’ve amassed an incredible amount of information from sites like this, magazines like Diabetes Self-Management, books and anything else I’ve been able to find. Not very organized, but very helpful. It would have been really nice if some of it had been provided when I really needed it.

  • Carol

    Iwas diagnosed in 2011. There was one nurse who brought me some pages she printed out at the hospital. It was Feb. and there was a major storm going on. They sent my husband to a nearby pharmacy to get me supplies and show me how to take my insulin shots 3 times a day one kind and at bedtime another kind. I was told a visiting nurse would be out to show me how to handle my supplies and etc. Upon arriving home, the power went out, I had to go to other families homes to get warm. The nurse came there and sat down with me to explain a lot, highs,lows,needles,lancets and how to really check and log my results. The second nurse taught me about taking blood pressure,temperature and said to watch what I ate. The third sat there and said do what the other nurse told you and she would watch. My first appointment with the doctor was not helpful he said we would be coming in every other week and then see how I was doing. Nothing changed, he sent me to the foot doctor,eye doctor, and told me I needed other checkups like x-rays for my bum hip. When I asked about seeing a diabetes educator, I was told one would be there every Monday to come in and see her that it was free and she could help me and I could not have a referal for any others. He did not mention she would be holding a general information session in the middle of the waiting room. The eye doctor found the diabetes was causing my cataracts to get worse so we ended up doing both eyes. On my checkup he asked why my count was still so high and why did they not change my meds. I told him all that had been going on and he gave me a referal to a diabetes clinic, they have worked wonders for my counts I am at 120 instead of 250. I have lost 25 pounds instead of being 158 lbs. The nutritionist and the doctor adjusting and changing my insulin regularly was what I needed. No one in my family had diabetes, I had no reference as to what it was, how to avoid or even what to do if you have it. Needless to say I do not see that doctor and am having a hard time finding a doctor who takes on new patients now. It has been a long 2 years but I am working to control this.