Yesterday somebody asked me what the prognosis was for me, having diabetes. And I was taken aback by the humongousness of the question, even though I've answered it before, for myself and others.

In the end, the best answer (which I didn't give), is that the prognosis is uncertain. I'm unlikely to die of diabetes in the next decade. I already have complications and I might develop more, have the ones I've got get worse, or even have the ones I've got get milder. I am likely to die of diabetes, though not in the next decade. I am likely to live long enough to do many meaningful things and to make my education worthwhile.
I know that it is possible to live a long time with diabetes, but I feel irritated when people feel compelled to share stories of people who did. I know that "noncompliance" doesn't help, but it doesn't make me feel better when you describe your relative who is forty-five and dying of type one diabetes as having been noncompliant.

I am 19 years old. I have had, by medical standards, well controlled diabetes for two years. By normal laymen terms, my diabetes has been on a roller coaster ride. I had uncontrolled, undiagnosed diabetes for a few years prior. If I am lucky enough to live to be 45, which I think is likely, then it is also likely that I will have months and years in which I'm more and less willing able to control diabetes. I spend most of my time with one eye on diabetes. Can you imagine that that won't grow tedious in twenty years?

Today I switched all the alarms on my CGMS to vibrate mode. Before they beeped, and I rarely heard them. Today I heard the alarm! The monitor hitting itself against the table is a lower pitch and much easier to hear than the high pitched beep. I have been having some hearing problems for the last few months on and off, and for the last month and a half nothing but on. 

Something that people rarely guess about me but ought to is that I do not believe in entitlement or rights, not even to life.  I do not believe that it is moral to force a company to pay for more expensive medical devices if you are not going to benefit from them.  I do not believe that you should be able to force somebody else to spend five million dollars to extend your life by a year. It makes me sick to think about how many millions of dollars are spent on research that could be spent on treatment. 

How about this? Instead of raising money to fund cure research, while forcing lawsuits to get insurance to pay for expensive medical equipment, how about simply raising money to fund medical equipment? Or better yet, how about a lawsuit to remove the stupid regulations and patenting to allow cheap mass production of test strips and other glucose monitoring systems?

Oh, and how about not claiming that you have to test blood sugar in order to know blood sugar. I am sometimes tempted to rely on urine sugar results alone for three months, just to prove that I could do it and get an A1c below 7, because there is not a doubt in my mind that I could. 

Often I think about life as though if the production costs could be lowered, the purchase price would necessarily follow, even though I know that that is patently false with regards to medicine. I wish it weren't false.

I was diagnosed with diabetes when I was 17 years and 10 months old. I was mildly underweight, moderately ketotic, severely hypokalemic and severely hyperglycemic. My fasting blood sugar was 453 and my glycosolated hemoglobin was off the charts.  My islet cell antibody levels were about 50 times the upper limit of normal, my GAD 65 antibodies (which destroy the coating around insulin and islet cells) were four times the upper limit of normal, and I did not have insulin antibodies. My c-peptide level, which measures the body's ability to produce insulin, was half the bottom limit of normal when my blood sugar was over 400; when my blood sugar came down to 200, my c-peptide reached unmeasurably low levels. The diagnosis of juvenile, type 1, or autoimmune diabetes was clear.

Unfortunately, it took years to get me to that point. While many people point to diagnosis and say, my life was changed I could never be carefree again, I point to my own and say: my life was saved. I could live. 

The onset of my diabetes was not typical. Type 1 diabetes most often has a sudden and dramatic onset. Mine was dramatic, true, but it was anything but sudden. I had been losing weight slowly and gradually for two years, and I'd spent my freshman year of college sick. I had entered the school year feeling just a little bit tired. I went for morning runs, which I abandoned after two months because of the frequency with which I collapsed on the sidewalk, unable to continue. By January of my freshman year, I had become very worried about my exhaustian, and I went to the university's counseling center for help. I told them that I was having difficulty maintaining decent eating and sleeping habits, that I had a history of depression, and that I'd been diagnosed with autism, all of which was true. I got a counselor right away. He didn't help. By March, my sense of taste had been skewed and everything was bitter, a symptom of hyperglycemia. But I didn't know that. I just thought I was being poisoned. I began throwing up on a regular basis, not on purpose. By May, I was throwing up multiple times per week. In June, I began to wet the bed frequently. I had wet the bed very infrequently for the previous few years; I attributed the increase to stress, or maybe a virus. I also got insomnia. I was too thirsty and hungry to sleep much of the time. I couldn't focus enough to count to twenty.During July, I stopped being able to climb up two or three stairs without my heart pounding, getting out of breath. I had to ride the bus everywhere, which I took as a personal failing. By the start of August, my stomache became distended and I began to waddle.  My vision tunneled. I cut my hair and noticed that it was very thin. It did not grow in again. By the end of August, I realized that I was not going to be able to succeed in school if I did not get better. I didn't think I was strong enough simply to walk from one classroom to another. I worried that perhaps I was terminally ill. I worried that I was a big hypochondriac baby. My family and friends told me that I looked ill and I that I needed to take better care of myself. They did not know how hard I was trying.

At the start of September, my mother took me to see a doctor. I was tired and weak and I let my mother talk for me. The doctor had me pee in a cup and came back triumphant. My urine, she told us, had a lot of sugar in it. My blood sugar was tested next and it too was high. But the doctor didn't make the sensible diagnosis. Instead I was sent home with a prescription for the oral medication glucophage and a diagnosis of type 2 diabetes. The doctor called that evening and made the correct diagnosis. She was hysterical. She said that I needed to be hospitalized immediately. I asked if it could wait until after the sabbath. She said it could not. She called the hospital to let them know that I was coming, and my father drove me to the hospital. I didn't have to wait at all- they were ready for me. They stuck an IV in me, with insulin, saline, and potassium- later they'd add sugar so that they could keep giving me the insulin I so desperately needed. It took a few tries to put in a line because my veins were small due to dehydration. Within two hours, I had come alive as though from the dead. I felt like I was awake for the first time in years, as though I had been reborn. I was transferred to the children's hospital and I was kept there for four more days. 

It has been 21 months since I was diagnosed with diabetes, and I am grateful for the opportunity to live with diabetes.

Every year in Chicago, one child dies at the onset of diabetes, about half of them right after being diagnosed, the other half without being diagnosed in the first place. Nationwide, about one hundred people will not have the chance to live with juvenile diabetes. Millions of type 2 diabetics (who are a far more numerous category of people and whose diabetes onset tends to be slower) are undiagnosed. Half of type 2 diabetics have had permanent side effects of high blood sugar by the time they are diagnosed. 
I expect that the year or more that I spent with high blood sugar has had a permanent toll on my body and that I will face the complications of diabetes sooner because my diagnosis was delayed for too long. Early diagnosis is important in the treatment of diabetes.

I hope that nobody, or at least nobody I know, will suffer the agnonies of being sick with untreated diabetes. Of thinking that you could walk another block, if only you tried. Of not having insulin when your body's cells are starving for want of the same glucose that you are pouring down your throat. It is very very easy to spot diabetes. Unfortunately, doctors' offices in the US insist on looking at fasting blood sugar, which is the last thing to go. I suggest that if you suspect that you have diabetes, have your blood sugar tested after you eat, or simply buy a little jar of urine glucose sticks (thirteen dollars for fifty to a hundred sticks) and pee on one after breakfast. If it shows any glucose at all in your urine, chances are 70% that you have diabetes.