Lesson 3: Heart disease is our biggest enemy.
We often focus our fears on blindness and kidney disease, while paying little attention to our heart risks, I think. What I have learned is that two out of three people with diabetes die from heart disease and stroke. Yet only 18% of diabetics are even aware that they're at increased risk, according to a 2006 study commissioned by the American Diabetes Association (ADA).
"There's a big gap between ‘what diabetes causes' and the idea that ‘this could really happen to me.' It's important to realize that diabetes is serious -- it causes serious damage," says Amparo Gonzalez, newly elected president of the American Association for Diabetes Educators (AADE).
"You have to be vigilant. You have to treat this disease as a very, very silent killer. If you don't, it'll get you. It's a lot of hard work. But you have to make up your mind," says Sal Balsamo, 74, retired CEO of a temporary staffing company based in Newton, MA. He's had diabetes for 21 years, and was diagnosed with congenital heart failure three years ago. Living well on a pacemaker/defibrillator now, he says: "I have a cousin who's blind, and other friends who've had legs cut off. It's a devastating disease, but it doesn't have to be."
Note that controlling blood pressure is key to avoiding heart disease. For every ten-point drop in your systolic blood pressure (the top number), there's almost a 20% decrease in the chance of stroke, and a 15% decrease in the chance of heart attack, the experts tell me.
Lesson 4: Get In, Get Checked, Get Moving.
The biggest weapons we have against complications are early detection and healthy lifestyle. You can prevent complications, and/or stop them in their tracks with the right treatments. But not if you don't see your doctor regularly and get your tests. And also not if you remain a perennial "couch potato."
"If you are diabetic, you should have your regular doctor refer to you to an eye doctor, to a urologist, and to a foot doctor. And make sure he puts it in his chart. Ask questions. Don't let the doctor tells you you're ‘all right' and you're numbers are ‘OK.' What is your number? What does it mean?" says Florene Linnen, 65, of rural Georgetown, South Carolina. Diabetes is rampant in her community, and up to 20-30% of those diagnosed have already developed complications by the time the disease is recognized. She herself did not know she had diabetes until she sought out a doctor for a strange tingling in her hands and feet, which turned out to be peripheral neuropathy. Despite 23 years of a variety of ailments, she's devoted her life to counseling and encouraging other diabetes patients.
"If you have complications, continue to eat right, walk – get your exercise – and stick with your doctor. My neuropathy has gotten a lot better, since I've been eating right, walking, drinking a lot of water, and exercising my hands," Linnen says.
Lesson 5: It's ALL about your attitude.
Shawn Faulk, the patient/CDE in San Diego, says the psychological side of complications is often a bigger issue than any physical damage.
"Complications are a like grief process, like a death – you go through stages of denial to acceptance. When I see patients, I want to find out where they are. Often they either feel helpless – like ‘it's inevitable, I can't do anything' – or they're just so depressed about their loss and the changes in themselves that this paralyzes them."
The attitude of empowerment that Faulk tries to help her patients develop is summed up nicely by Ann Gann, a 58-year-old retired high school teacher in Tennessee who also has type 2 diabetes and peripheral neuropathy:
"Educate yourself. Don't succumb to being overwhelmed. Focus on one thing, master it, and then move on to the next. Focus on small steps toward better understanding. It's OK to ask your doctor questions – even if it's the 5th time you have to hear it before it sinks in. That's all right. This is a process, a journey. No two days are ever going to be the same."
Finally, despite multiple infections and surgeries over the years, Faulk says, "I've survived. I'm working full-time. I'm out there. It's never too late."
** A huge thank-you to all the patients across the country willing to share their experiences with the diabetes community through me! **
* Amy Tenderich is co-author of the new book, Know Your Numbers, Outlive Your Diabetes.
Read more about Amy Tenderich.
dLife's Viewpoints columnists are not all medical experts, but everyday people living with diabetes and sharing their personal experiences, most often at a set point in time. While their method of diabetes management may work for them, everyone is different. Please consult with your diabetes care team before acting on anything you read here to find out what will work best for you.
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