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Fighting Diabetes as a Family

Carolyn Starks
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Bob Stefko

Our hotel room emergency pushed us to demand help. Since our insurance company requires referrals to specialists, we desperately searched for a new family doctor willing to write one. On the way to an appointment with a new M.D., I repeatedly stated our mission: "We are not walking out of his office without a referral to an endocrinologist." My husband agreed. Twenty minutes later, we walked out empty-handed. When I asked why we couldn't see a specialist, the doctor pointed to the framed photos of his prized patients: professional athletes. They trusted him, so we should too—even if they didn't have diabetes. We left, my blood pressure hitting an all-time high.

About a week later my husband passed out in the kitchen while getting breakfast ready. Our daughters found him unconscious on the floor as I was giving him emergency glucose and talking to a 911 dispatcher. His blood sugar level was 17. (The normal range is between 70 and 180.)

Later that afternoon, my normally calm husband anxiously sought help from our family doctor. The few times he had previously suffered low blood sugar, we could usually figure out why it happened. It was often due to an error in the amount of insulin he had injected. But two unexplained life-threatening emergencies within 10 days were uncharted, terrifying waters. The doctor had an explanation: My husband could have accidentally injected insulin into a vein, instead of fat, dramatically lowering his blood sugar level. While this was plausible, John still wanted to consider trying an insulin pump—a programmable device the size of a pager that delivers insulin continuously through a tube inserted in the body—which required a referral to an endocrinologist. Once again, the doctor refused his request.

On his way to the hospital for yet another blood test, my husband called me with the "no referral" news, to which I responded by shouting obscenities. Then I called the doctor's office. A polite secretary asked me to leave a message, but I could barely speak through sobs: "You ask the doctor how he would feel if his children saw him pass out and nearly die in front of them!" He never returned my call.

Fueled by a tankful of anxiety, I pressed on. I had heard about a diabetes support group in our town, and since my husband couldn't attend due to work, I towed my daughters and their coloring books along. I had forgotten one of the golden rules of parenthood: Your children hear, if not feel, everything you say. My way of dealing with my own fears about my husband's health was to obsessively ask him to check his blood, badger him to tell me his blood sugar level and panic when the levels were off. In essence, I had reduced him to nothing but a number—which was unfair to him, the kids and me. He is obviously so much more than that to all of us.

Inside the small church basement, we were warmly greeted by a mother who said she'd started the group because she couldn't find much support for herself and her 9-year-old diabetic daughter. It was here that I learned diabetics should not take insulin before a hot shower, as my husband had done both times before those two incidents. (The heat escalates blood flow, causing the drug to be absorbed faster.) But my most treasured takeaway was the name of a highly recommended endocrinologist. I sighed with relief as I wrote it down on a scrap of paper. Weekly my daughters and I returned to the group, absorbing encouragement while they played or colored with diabetic girls and boys brought by their parents. I was teaching my girls, through my actions, to seek help from others when they are lost and to not live in isolation when they are afraid.

Meanwhile, my husband found a general practitioner who, after hearing about his recent emergencies, immediately wrote him a referral to an endocrinologist—the name read off my tiny piece of paper. The specialist reassured us that my husband could gain back control of his disease through education and an insulin pump, if he wanted one. Finally!