Ten Years with Diabetes – Part Three (What I’ve Learned)

I promised to write more about what happened after my diagnosis ten years ago with diabetes. As I mentioned earlier, my life with diabetes feels extremely normal to me. Consequently, I’ve been struggling with what to say about the last ten years post-diagnosis.

The force to break the log-jam came from Diabetes Daily, which is encouraging everyone to write for the newly diagnosed.

So, writing for someone who, like myself ten years ago, was recently diagnosed, here’s what I think it’s important to know:

  • Eventually it won’t be the only thing on your mind. For a couple solid months after my diagnosis, it was all diabetes all the time. Partly because of my treatment plan, my life felt very regimented. I had to eat at a certain time or risk hypoglycemia. I had to exercise at a particular time. I had to take injections at a particular time. I had to eat more-or-less exactly the same amount at each meal. And so on. Frankly, it made me a bit depressed. Now that I’ve switched treatment plans, diabetes feels much less like a constant burden.
  • You’re going to make it. Diabetes isn’t exactly easy, but it becomes habit. You’ll eventually learn what you need to do from day to day, and you’ll have a support system there for the special situations.
  • You deserve an endocrinologist, and you can (usually) shop around for one you like. A good endo will help you get to the lowest possible A1c that you can live with, will understand that diabetes is hard, and won’t judge you if you have readings outside the target range. An endo should help you make sense of the crazy readings and help you reduce their frequency. If your doctor only wants to take your blood and talk about baseball, doesn’t share what’s new in research when you ask, doesn’t want to check your feet, or starts you on an NPH regimen, it’s definitely time to get a different one.
  • You’ll have a healthcare team: some combination of your primary care physician, nurse educator, nutritionist, endocrinologist, ophthalmologist, exercise physiologist — perhaps more. But you’re the key part. You need to be an active member. If something isn’t working as well as you’d like, tell someone. If you want to try a new or different kind of therapy, ask. Unlike many chronic illnesses, there are a lot of different treatment options for diabetes.
  • Show your doctors all of your numbers, even the bad ones. We all make miscalculations when counting carbohydrates. We have the same time pressures and desires as anyone else, and we order pizzas. (Mmm . . . pizza.) We exercise and travel. Once you get past the idea of doctors as authority figures, it’s much less embarrassing to show them a log book with only 50% of the readings in the target range; and you can get on to fixing your basal rates, boluses, carb estimation, exercise regimen, etc.
  • The certified diabetes educators (CDEs) and nurses are your friends. They’re the ones who have the best advice and the ones with the free meters. My favorite CDE taught me how to shoot insulin and manage my disease those first days in the hospital. And afterward she had all of the right connections, got me interested in an insulin pump, ran the support group, and helped me become an advocate for other people with diabetes. Thanks, Kathy!
  • Don’t take shit from anyone, especially people in the medical community. Most people with any medical training have read the guidelines — a target range of 80-150 mg/dL and an A1c less than 7% — but they don’t live with the disease, so they mistakenly think it’s easy. The questions from health professionals I hate most are “What was your last reading?” and “How’s your control?” If I see you once every six months, one reading out of 1,500 isn’t going to tell you much. And a word like “control” gets conflated with self-control, which I have plenty of; but I also have diabetes, which has a will of its own.
  • Similarly, your friends and loved ones won’t know how to help you, but they will. They might not know any more about diabetes than you did before you were diagnosed, and they’ve watched you get sick and (most likely) scared and frustrated. They’re concerned and want you to be as healthy as you can be, so cut them a little slack. And they’ve probably heard all of the diabetes myths and seen the previous generation of diabetes patients struggle with the previous generation of diabetes treatments. Eventually, you’re probably going to end up explaining everything you can convey about diabetes to them. It will drive you crazy, but in the end (hopefully) they’ll start treating you like any other “normal” relative and/or friend.
  • Be aware of the complications, but don’t get fixated. Try your best and remember that you’re in control. Diabetes may not cooperate fully, but ultimately you can make the choices that (mostly) work. Just keep working with your team, be honest about what works and what doesn’t, and make small changes. Big research studies have shown that if you can do this, you have (very nearly) the same medical risks as people who don’t have diabetes.
  • There are a lot of treatment options. Ask around. The best thing I ever did was switching from an NPH-based injection regimen to an insulin pump. Of course, after two years of managing the inflexible-but-somewhat-predictable blood sugar roller-coaster of NPH, I’ve been spending the last several years undoing the habits and phobias it created, most of which are subconscious.
  • Always carry supplies. At the very least you should never be without your meter, test strips, lancing device, insulin, a syringe, and something sweet for treating a low. Yes, you might look like a dork — maybe even a cross-dresser European man about town — but you’ll be happier. And if you’re going more than a couple hours away from home, bring an extra day’s worth of supplies. Trust me on this one.
  • You can do everything you want to; it’s just going to take a little more work and some trial-and-error. Want to go on safari? Hike a mountain? Run a marathon? Eat an entire pizza? Sleep all day long? It’s all possible. In the ten years that I’ve had diabetes, I’ve taken an incredible amount of inspiration from Olympic swimmer Gary Hall, Jr. and (more recently) the Team Type 1 cycling team.
  • Find the right community, and be sure to take it all with a grain of salt. While it’s nice to hear how people handle a situation you might be experiencing, remember everybody’s diabetes is different. Keep an open mind, take a risk or two, trust your instincts, and work with your team. Some of the best diabetes communities are online, as is some of the worst information around. Consider a monthly diabetes support group at your local hospital.
  • It does get easier after the first few months. Be aware that at some more-or-less regular, but unpredictable, interval diabetes will throw you for a complete loop and you will learn another thing about how your body/diabetes “works” and how you can handle each new event. It’s going to be frustrating, but it’s not your fault.
  • Finally — and this is the most important one — remember to do something special every year on the day that you were diagnosed. Diabetes is a disease you manage everyday of the year; why not take back one day out of that year for yourself? Exchange gifts with your sweetheart. Go on a date. Eat all of the “bad” things that usually throw off your readings, take some extra insulin, and get back into the groove the next day. You’re a human being, after all. You deserve some fun.
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One Response to Ten Years with Diabetes – Part Three (What I’ve Learned)

  1. Leslie M-B says:

    Excellent post, Jeff.

    Have you seen Alan Levine’s I Hate Running blog, where he writes about training for a half-marathon? Alan’s an interesting guy–I think you might enjoy it.

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