Insulin-Free

of energy and willpower. I've heard the frustration and anger in her voice when she says "you know, people think if you have diabetes, you should just be able to handle it."

Well, I have managed my disease fairly well. I have largely avoided complications. I have even managed to have one healthy child, and am pregnant with my second. But what you don't see is my mood swings when my blood sugar plumments. You don't see the tension when I've given my dose of insulin before a meal at a testaurant and, for whatever reason, the meal is delayed. You don't see my blood sugar drop lower and lower until I have to ask for a large glass of juice and some bread to bring it back up. Then, by the time my meal comes I've already eaten my allotted amount of carbohydrates so I skip the entree to stop my blood sugars going too high later.

Who sees the overwhelming fatigue that rules my life?When I have bllod sugar readings that range from 27 to 525, I feel like I'm on a loop-p plance at carnival. I get nauseous, and all I want to do is liedown and nap, but I need to go to a news conterence instead, so I hide those symptoms, and pretend I'm "normal".

Like many of you, I struggle with my diabetes every hour of every day. I struggle with it because no matter how dilligent I am, there are times my blood sugar goes out of control. When I get a reading hat's too high or too low, my immediate thought is "Oh my God, what am I doing to this baby I'm carrying?" High sugars, and perhaps even very low sugars, may lead to birth defects, like a malformed heart, spina bifida, eleft palate, or brain abnormalities. When I was 10 weeks along, I had an ultra-sound specifically to check for anencephaly, a fetus without a brain. I wasn't in the best control when I found out I was pregnant, so I ran an increased risk of giving my baby complications.

The last time I was pregnant, a pediatric cardiologist did an echocardiogram on the baby when I was 19 weeks along....he couldn't see all four chambers of the heart...diagnosis? Baby with a heart defect. Probable cause? Maternal diabetes. Effect? Incredible guilt on my part - why hadn't I done better at controlling my blood sugar? In the end I delivered a healthy baby, but I stored up enough guilt inside me to last several lifetimes.

Why isn't there a more urgent effort to cure this illness? Why is the amount of money the U.S. government spends on researching for a cure compared to the amount spent on curing AIDS and breast cancer? Do you know that more people die from diabetes every year than from breast cancer and AIDS combined? Why do we diminish the horror of diabetes by applauding the latest technological gadget to manage the disease, without demanding a cure?

I want a cure! I don't want your pity - I want you to know that it's not enough simply to develop more painless ways to take blood sugar readings. I got used to the prick in my finger eons ago. It's time we change our focus. Sixteen million people in this coutry alone have diabetes. Billions of national healthcare dollars are spent on treating diabetes and it's complications. Think of the children with diabetes who must learn, at a very young age, to lead lives of perfection - who get the message they're being bad if they give in to an urge to have one more cookie. Think of those of us who, after years of living with diabetes, develop costly and sometimes deadly complications. And who get blamed by ignorant people that "it's our own fault because we should have taken better care of ourselves". There are environmental things that we have some control over, but we aren't robots. We do the best we can. We need a cure.

Thanks goodness we finally have pancreas transplants. We need to make sure people know about know about this option. I recently read an article in the Journal of American Medical Association called "Planning for a Kidney Transplant...Is My Doctor Listening?" The author is a PH.D. who has polycystic kedney disease. He began making plans for a kedney transplant well in advance of renal failure. His story details the reluctance of his physicians who thought he was crazy for even contemplating such a major surgery before his kidney function dropped below the standard dialysis threshold of 10%. The author, Dr. Donald Brandt, decided to perform a "decision analysis" to assuage his anxiety about his decision and the lack of support he was getting from his doctors.

The article analyzed the relative rist of something bad happening for the chance to enjoysomething good. The article hit home with me. I'd had conversations with my own physician regarding my decision to look into pancreas transplantation. I admire and respect my doctor very much, but I couldn't help feeling slightly offended by her response to me: "No one will look at you as a candidate now", she told me. I didn't have the complications that predictably precede getting a pancreas transplant. She went on to suggest that perhaps my current pregnancy was added stress, and that my learning about the option of a transplant may be driven by an emotional need that would lesson once the baby was born.

Not only did my personal physician attempt to dissuade me from pursuing my investigation, but I began to her form others who'd herd bout my inquiries. In fct, fine gentlemn I'd interviewed previously, bout his own pancreas/kidney transplant approached me. His experience ended badly, with a failed transplant, and a requirement that he go on dialysis. It was truly a horrible experience for him. This man told me that a diabetes educator had heard about my inquiries into a pancreas transplant and had urged him to talk to me so I could hear his horror story. Nobody came to tell me of the horrors of diabetes.

Donald Brandt clarified things for me in his article when he talked about divergent frames of reference for physicians and patients. He wrote that while "physicians, in principle, may acknowledge the importance of quality of life issues, in practice, they often dismiss patients' subjective reports as too unreliable," So, when I say, "I feel exhausted, and nauseous most of the time despite adequated blood sugar control," and my healthcare worker replies "let's try increasing your bolus of insulin by point tow units," we have a divergent frame of reference. I am thinking about my overall quality of life, and she is thinking about my nominal blood sugar.